Surgery Progress Dec. 31st 2012

     Hi everyone, hope you enjoyed your Christmas. I am excited to share that since my last post I had one of the best weeks since the on set of this terrible condition of PNE in Feb. 2011. Unfortunately it was followed with the worst week and half since returning home from Turkey. Tomorrow marks 12 weeks from having nerve decompression surgery in Istanbul, and December has proven to be my big turn around month. I am feeling back to my pre-op self, and I have even had some of my best days since developing this condition.

     Well let me share the details of my best week. It started Sunday afternoon, I sat on the floor, yes, you read right, "SAT", no laying on my stomach. I spent about an hour cleaning the dusty fireplace out so we could get the fire going. Wasn't too bad sitting there, however when I got up, oh boy did I feel it. I created a flare, the good news was that when I got up the next day, everything was calmed down. So calmed down that as I went through the day I had noticed that most of day had gone by with very little pain. I was amazed that first, my flare didn't last for a couple of days like it would have done before surgery, and also that my pain levels seemed to stay down. So, now it's Tuesday and my daughter has a Christmas concert choir performance. Usually by night the pain has reached it's highest level, but just like Monday my pain stayed really low again. Where I was feeling most of my pain was in my foot. My foot still gets irritated from wearing a shoe, and it had been a long afternoon of walking around in my shoe. When I put my shoe back on to go over to the middle school, my foot was screaming at me with big shocks of pain. Once I got there I thought I'd try to sit, so I could kick my shoe off to get some relief. I was surprised that I had made it through most of the program before I started to get uncomfortable. There were only two more songs needing to be sung, and then the program was finished. I couldn't believe it, I made it almost a whole hour. Between my oldest son and my daughter, this was my fourth concert choir program I had attended in a year, but this was the first one I was able to sit through. Not completely pain free, but definitely manageable. My husband had his annual work Christmas party on Thursday night, and I was feeling pretty good once I arrived, even after a 35 minute drive. I sat during dinner and never once thought "I really need to get up, I can't do this a second longer". Not bad, right? It seems I am making some progress.  Some other things that made my week so great, I scrubbed a couple of bathrooms and vacuumed. I could never get very far into a bathroom cleaning before a flare would kick in, not this time. I was on my last step of wiping the mirror, when I realized there had been no change in my pain level. I waited for it, and even sometimes flares can come on the next day, but it never came. And, when I vacuumed, the flare, wait for it, wait for it, IT NEVER CAME!!! I was 9 weeks post-op and completely shocked with what was happening.

     Here's where the good week turns bad. It is Saturday, and I still had a lot of Christmas shopping to do. I know, I know, cutting it a little close, but hey, give me a break, I had just finally started driving again just one week prior. Anyway, me and my husband had planned to go out and get it all done. We left at 6:00 and got home at 11:00. Five hours proved to be a little too long, not only was my foot fired up, but my in-betweens were angry as well. I went to bed thinking, oh man, what have I done? When I got up the next morning everything was still pretty annoyed. It was Sunday, which means church. This would be my first Sunday going without my leg brace. Only problem, wearing my Sketcher's to church was not exactly appropriate. I struggled finding a shoe that I could wear, and I refused to put on my leg brace, after all, I had gone 9 whole days without it, and I was so over it. Only minutes after arriving at church I was ready to rip my shoe off. I chose to sit with my family even though my pain was higher than the last few days. I thought maybe since I had gotten through the concert choir program and a Christmas dinner, maybe I could give sacrament a try. I did do better then I thought but after 40 minutes I was done. I looked at the clock and I thought 30 more minutes, I can do this. That thought turned out to be a wrong choice. I dealt with a painful flare the rest of the day, pain so bad I just wanted to go to bed. This carried over for the next few days, and by the time I had gotten to my PT appointment for pelvic pain, I was not doing so great. PT unfortunately made things worse, I came home in more pain, and I am still waiting for everything to calm back down.

     I am glad that I was able to experience a low pain level week, but clearly I over did it somewhere. When you feel good it is easy to get carried away, and I think testing my limits is good. Funny how I feel like I can conquer the world when I feel so good. And, how fast pain can take you down, and the desire to do anything vanishes. I just need to find the right balance and this can be tricky at times. The flare is coming down, but I am not back to where I was a couple of weeks ago. It seems that I was getting through my days and getting more things done around the house than ever before, all while keeping the pain levels down. But, sitting is still an issue. I'm not worried though, on the nerves timeline I'm still in the beginning stages, and I think sitting will come with some more time.
    
     As far as my foot goes, it is still showing improvements. After 10 weeks of dealing with excruciating pain, I can safely say my worst days are behind me. Constant pain is long gone, my only issues now, are wearing a shoe, showers, occasional pants or pajama bottoms resting on top, and something as silly as the sheets while trying to sleep. I only use the ice machine a couple of times a week, I am at a point now that it is more annoying to deal with the cords and cuff than the actual pain. When I first go to bed it's not too bad, but after some time I start to feel the tiny shocks coming on. I have learned I can just stick my foot outside of the covers and everything will calm down. At the end of this week the ice machine is due to get picked up, and I can happily say I am ready to finally part with it.

     Over all with a flare and all, I feel much better than I did a year ago. And I am looking forward to what this New Year will bring.

A New Year And New Hope

     Hello to all my friends and family. I hope everyone had a wonderful Christmas. Christmas day couldn't have been better, fresh white snow covered the ground, the kids slept in until just after eight, and grandparents stopped by to visit, eat yummy food, and play a little too. Tomorrow starts the New Year, so good bye 2012, and hello 2013.

     Last year started out with so many unanswered questions, I felt so lost in the world of PNE. It seemed no matter which road we went down we found ourselves more confused and frustrated. Nothing made sense and the unanswered questions just grew and grew. Though one thing for sure was, that I was very determined to beat this. I did not want to accept the couple of answers we were getting, and I was not going to give up until the right answer came along. At first, I didn't know how long I'd need to wait, but after a lot of patience and prayers the right answer finally came around in the middle of the summer. I discovered that the surgery I needed was available through a laparoscopic approach, only down side, the surgeon that offered this was located in Turkey. Even though we traveled so far, everything about our decision felt right, and for the first time I felt a sense of relief, and that everything was going to be okay. The end of this year has been filled with hope and a new appreciation of life. What a difference one year can make. I can already tell this new year is going to be filled with lots of accomplishments and hopefully some little miracles too.

     So many things that were taken for granted two years ago, will be given back to me as this new year moves forward. So, with more patience being the key, here are some of the bigger things I hope will happen for me. Sitting through three hours of church, going to the movies again, taking a road trip, making it through a promised, and now overdue Disneyland vacation, and the ability to reconnect with my husband (in a behind closed doors kind of a way). I know, a shocking last remark, and probably TMI, but unfortunately, it's one of the ugly truths of this condition. Of everything lost in dealing with this devastating condition, this is the one I personally struggle with the most.

     So what do you think? Too much to ask of my damaged nerve? I really think with some more healing and regenerating time for the nerve, I am going to have a very memorable year, and in a good way. Everything is slowly turning around, and I truly believe this is going to be a year filled with  new opportunities. I am looking forward to posting these accomplishment, and I hope you all stick around to celebrate my milestones.

Wishing everyone a Happy New Year! To a brighter year, filled with hope, happiness, and good health!

Surgery Progress Dec. 12th 2012

     Two weeks has gone by and I'd have to say I am starting to feel better and do more and more around here. I am getting through the whole day without feeling the building pressure and deep ache, and even at night I can manage to make it through until bed time. My days are full between taking care of my family and most importantly myself right now. I am glad that for the most part I am up and involved with my family.

     What a busy time of the year, although I enjoy this season, I find that I have too many things to do for Christmas. On top of all the Christmas prep, I am also spending a lot of time at physical therapy. Not just one, but two PT's, one for the foot and leg, and the other for my PN issue. This has been taking up a big chunk of my week. But, enough of the small talk, I have so many things to share...

      On my last update I was just about to get started back up with physical therapy for pelvic floor and PN issues for the first time since my surgery. I was very anxious for this appointment, because no one really knows the pelvic floor like my PT. I knew she would be able to distinguish any changes good or bad. Like always, the first appointment is an evaluation to determine the plan for the next few month's. I had went in for an evaluation prior to surgery so we would have a base line of of my condition, and a way to compare the pre-op and post-op concerns. Before surgery, even though I had worked with this PT for over 4 month's, some of my bigger issues never responded to the PT. And actually, sometimes PT would create a big flare and I would feel worse for a couple of days. We had finally reached a point where there was not much more we could do, with no improvements in certain areas I stopped PT. However, at my first appointment after surgery my PT noticed a big change in some of the problem areas. All I can say, is that my PT was impressed with the areas of concern, she seemed hopeful and we were both all smiles. I guess time will tell, and in the meantime our focus will be on minimizing the scar tissue that forms naturally after surgery. Scar tissue can create new issues later down the road if not treated properly, so this is a very critical part of my recover and healing of the nerve.

     Big news on my foot and leg. If you remember, the last time I posted, my foot wouldn't even budge, my toes or foot physically could not lift up while standing straight and trying to balance on my heel. I was so shocked, after just a couple of days of practicing my foot finally flexed up and lifted up off the ground, it wasn't very much but it was definitely coming up. And, by the end of that week, which I just happened to be at my physiatrist follow-up appointment, (and of course I had to show off my new regained motor function.) Well, then something better happened, I wasn't even expecting this, but he had me try and just flex the toes up while standing straight. I had been trying to do this as well with no luck, and to my complete surprise it happened! I wouldn't call it a lift but more of just a slight movement of my toes. We both said "whoa did you see that"! at the exact same time, it was funny and also very exciting. I had a PT appointment later that day and I couldn't wait to show him what I could now do, and all in a weeks time. PT has been filled with one accomplishment after another, all in about two weeks of time. We have shared lots of high fives and big smiles. Every day my foot would flex higher and higher, and my toes would just follow behind within days. Now that I could control the way my toes flexed I could try putting a shoe on. There was two issues with getting a shoe on, first the top of my foot is having a lot of hyper sensitivity issues, meaning nothing could touch it without creating crazy pain. Second, when I would try and put my foot in a shoe my toes would automatically curl under, and no matter how hard I tried I could not get my toes to straighten out, this makes wearing and walking around in a shoe very difficult. So, now that I had regained the motor function back in my foot, my PT said to bring my right shoe in at my next appointment.

    Last week I was able to get my shoe on, and for the first time since Oct. 8th I was walking around in shoes on both feet. YAY!!! Now, my right foot obviously feels very uncomfortable with a shoe on, but I'd say that the straps that hold my leg brace on are very bothersome too. Wearing my shoe feels very prickly and feels like I'm wearing a size to small, the shoe feels like it's on way too tight even though I know it's not. I can only tolerate the shoe for so long before I need to rip it off. It's a good start and soon I should adjust to this new sensation. After a couple of days of learning to get around in my shoe, I told my husband that I think I am ready to give driving a shot. He didn't even bat an eye, he said okay, and threw me the keys. It was such a great feeling to be back in the drivers seat and have the ability to drive around again. The first couple of drives my leg would tire out fast by pushing on the brakes at a stop light, so I would just put the car in park, but already after a couple of days it's not even an issue. Getting my independence back changes everything...I am so happy!

     Remember my beloved ice machine? Well my four weeks was up on the 7th of Dec. There was no way I was letting my ice machine go. I called the company and said "PLEASE can I have it a little longer, I still need it"! After a few phone calls to my doctors office and our insurance, I now have it for another 4 weeks. Whew! I'd much rather manage my pain with ice cold water circulating around my foot then all those wacky nerve medicines any day.

Everything is turning around and all I have to say is I am so HAPPY, HAPPY, HAPPY!!!

Surgery Progress Nov. 27th 2012

     I know, I know,  it has been a couple of  weeks since I have posted about my progress. It was a very busy week last week with the holiday and all, and my kids home. It was so nice to have some down time to spend with my family. I am at my seven week mark today, and I do have some improvements to share...here it goes.

     The PN pain has been tricky, I have had some good moments and some bad over the last couple of weeks, but over the last week and a half I have had moments with no pain. I know, can you believe it! Over the last week or so I wake up feeling perfectly normal. I wish I could lay there all day and enjoy this moment, but I have five kids, so ya, not even an option. Once I get up the pressure starts to build, and as the day goes on the pressure intensifies and everything becomes very sore. Some days I check out of my mother and wife duties a little early, I just can't stand for a second longer. I go upstairs and lay down while my husband takes over for the rest of the night. After a hour or so I feel much better, and WITHOUT the help of ice. I am sleeping really good through the night, which is so important for my body to continue healing. On some days over the last week I have had times when I sit and I feel absolutely normal, I feel fine for about 15 or 20 minutes, and then the pain starts. I would say my pain ranges from a 3-7 while I am up and about. Obviously, as the day goes on the pain increases, but with rest I get relief. I went to Costco the other day, and I was completely worn out after pushing a  full and heavy basket around. My pain levels were pretty high and I thought I was going to have a big flare that would last a few days, after some rest I was fine and the flare never hit. I think this is HUGE! I am so excited for every little step of progress that is happening, every little sign of improvement gives me the strength to keep pushing along. Now touching is a different story, I still have numbness, and everything is very sensitive, mostly it feels raw, and very, very  bruised. I start physical therapy tomorrow, now the hard work will start, but eventually all of the hard work will pay off.

     Now, as far as my foot and leg goes I have seen some big improvements. The pain is still there, and without the thermal compression unit I would be a very unhappy person right now. I use the machine all night long, the constant cool water circulating around my foot helps me to get plenty of sleep. The pain has changed, I only feel that deep burn and ache occasionally. Now it feels like an intense sting or burn. You know when you were little and you had been playing out in the snow for a very long time? And, we would think the best way to warm up our freezing hands would be by running them under super warm water. Can you imagine that sting that is felt when doing this? This is how my foot feels now, with random intense shocks of pain. Sometimes the hyper sensitivity seems to calm down and other times it is unbelievable. Now that it is coming and going some, I think this is a good sign of the nerve repairing. Over the last week I have been getting around my house without the leg brace. I am going up and down the stairs and getting around just fine, meaning I no longer trip over my own toes. This takes me to my biggest accomplishment, which has been with the movement, or range of motion with my foot. Only after 5 physical therapy sessions, we have seen a big improvement. Laying on my back my right foot would fall down, now I can move it up to a neutral position (point the toes up) and hold it without any problem. Now we are working on pointing the toes up while standing. If you stand up straight and raise your toes up on one foot so you are balancing on only the heel, you will see this is no big deal. For me lifting my toes of my right foot up off the floor in a standing position is impossible, my foot acts as if it is glued to the ground. The harder I try the more the muscles in my leg shake. As soon as I can learn to do this I will be able to drive again. My physical therapist is really happy with the progress so far, but reminds me we still have a long way to go. Getting the toes to lift up of the ground is the hardest part, I know with time this will happen for me.

     Funny story, on the day before Thanksgiving my dad was driving me home from a physical therapy appointment. He was accidentally going a little too fast, and we were pulled over by a police officer. The officer was a little confused that my dad's name and address on his licence didn't match with the one on my registration. I explained that my dad was helping me out. I lifted my right foot which is in a brace, and told him I am unable to drive, and that my dad was driving me home from my appointment. He responded with "well, I'll tell you what, one good deed deserves to be rewarded with another. I'll let you off today with just a warning".  Whew! The bad leg saves the day. So now I have found one good thing come from this whole leg situation, sympathy equals no speeding ticket, Nice!

     On a side note, I did try out driving with my left foot last week. I thought it would be so much easier then it turned out to be. I don't think this is for me. I had a really hard time coming to a complete stop smoothly. It was a complete and sudden stop, like 20 ft away from where I really needed to stop. And I had a hard time taking it easy on the gas too. On top of the whip lash like driving, I couldn't stop laughing, every time I thought I had it down... I didn't, and I would just bust up laughing. This made for an entertaining drive,  but is no good...I think I'll stay off the roads for now.

So Much To Be Thankful For

     On today, the day of Thanksgiving, I truly have so much to be thankful for. Me and my family have been through quite a bit. We have gone through some drastic changes that has significantly impacted our life the last 22 months. Although there has been a lot of adjusting, and learning to cope with all the obstacles that come with PNE, there has also been so many good things that we have been blessed with while on this difficult road. I thought what a great day to share and express my gratitude for everyone that has been on this journey with us.

     First off, I am most thankful to my husband, he has stuck by my side in the most difficult of circumstances. I'm not going to lie, this has been very difficult on us, but with time we have grown together and not apart. I am thankful he has stayed so strong and has been so supportive through this journey.  He has stepped up and taken on so much more of the responsibilities for our children and around our home, while continuing to work full-time as our main provider. I am very thankful we have found our way through this together.

     Of course my kids have been so resilient through all of this, they have adapted to the restrictions and limitations that keeps me from doing the things that most moms do on a day to day basis. I have had days that I think "how in the world am I suppose to care for my kids", when I am struggling myself to get through the day. But on most days my kids are the ones that push me along and keep me moving forward. They Love me no matter what, and for this I am very thankful.

     I am thankful for our parents. Without their help while away in Turkey, I wouldn't be where I am today, which is the road of recovery, and hopefully soon a pain free life. Since returning from Turkey, my mom has been here every day taking care of me and my kids, and our home. She has stepped in and helped me in any way possible, so that I won't over do it, and can give my body a chance to heal and recover. So thankful for parents, especially moms.

     I am so thankful to Prof. Erdogru, and his laparoscopic technique. I am thankful for finding this remarkable doctor, who has so much passion for what he does. He is so much more then a Prof. of Urology, he is a healer of hope, and of pain. I can't thank him enough for all the hard work he has done in helping the sufferers of PNE.

     I am thankful for amazing friends and neighbors. We have been very blessed with the kindness and service of other, especially over the last 2 months. I am thankful for our friends and neighbors that helped with the kids while we were away. I am not talking just for a night or a weekend, but for over two weeks they stepped in and helped out. I am thankful for the numerous neighbors that brought meals into our home, while we were away in Turkey and once we had returned home as well. Even our old neighbors and ward stepped in to help. Two of my sweet friends from our old neighborhood showed up shortly after returning home with a large cooler full of  about a weeks worth of frozen dinners. They went out of their way in organizing and delivering the meals for my family. Thank you Julie and Stacie! I am thankful for neighbors who just show up unannounced with gardening gloves and her sweet kids in tow, to do the fall clean-up in our yard. Thank you Leeanne! And, so many others that have dropped off a plates of goodies and notes to let us know they are thinking of us. And, all the phone calls to check-in on me and to offer help. We are so blessed!

     I  am thankful for the PN support groups. Everyone has been so kind and supportive. I am amazed with the connections and new friendships that I have made because of this debilitating condition. I am thankful for everyone's words of encouragement, it has really been instrumental in getting me through this recovery.

     Something completely unexpected, that I am now having a hard time writing because of the tears in my eyes. We have been blessed with family who's way of helping has been through sharing the financial burden with us. We have received a couple of very generous checks, one by mail and one in a personal delivery. We are extremely thankful for this, Thank you, from the bottom of my heart!

     I am thankful to my Heavenly Father, and for my faith. I have faith that I will overcome this. I have faith that one day I will have a full understanding of why I needed to go through this, and in the end I will be grateful for the lessons gained. There are so many lessons to be learned when faced with adversity,  life lesson that only come when faced with such trials and tribulations. In the end I will become a much stronger person and for this I am grateful.  For now, I enjoy the closeness that comes from relying on my Heavenly Father, every single day, as I get through this hard time. I am thankful he shares in my burden and lightens my load with the many acts of kindness from the people in our lives.

Thanks to so many of you who have reached out and touched our hearts! I hope you all have a wonderful Thanksgiving!! Much Love, Shirlayne

Surgery Progress Nov. 14th, 2012

     Well all my friends and family, I have made it through one more week. One more week closer to an end all has been checked off the road to recovery. I've had a lot going on over the last week, starting with doctors appointments, physical therapy, thermal compression therapy, and finally getting some sleep. YAY!

     I'll start with the PN pain, Oh you guy's and girl's, I really don't no what to say about this. I still have numbness, but I've had more pain this week than last. I thought maybe this was due to more areas waking up, but the numbness seems to be the same. More areas seem to be going through what my foot has been experiencing, but not nearly as extreme, thank goodness! However, super sensitive to the touch, like one big giant bruise. I'm a little confused by this, because it seems areas that felt fine are now acting up. Who knows? Nerves really do have a mind of their own, and I give up on trying to make sense of this anymore. I'll tell you all one thing, patience and pain are the worst of enemies, and I just happen to be right in the middle of this battle. Pain is definitely kicking some butt right now (literally)!

     As far as the sitting goes, I sit mainly in the car, going back and forth from appointment to appointment. A few things I have noticed since surgery and riding around in the car the last couple of weeks is, I find myself not leaning or tipping up on my hips to sit anymore. Ya, you heard it right, I sit flat, on both my cheeks, like a normal person. This actually feels better than on my hips. I've noticed that it no longer feels like I'm sitting on a golf ball anymore, and I don't notice that terrible stretching or pulling sensation anymore either. I know, wow, right! I'm wondering if this is because I still have some numbness, or if this is something the surgery has corrected. Now, I just need all the soreness to go away, and I really want the numbness to leave too, so I can get a better idea of what's really going on down there.

     Okay, finally my darn foot and leg. I'll start with my neurologist appointment. It was a good appointment, he was very thorough, but he kinda just said everything we had already been told. He was not able to give us a clear answer on when and if  I would regain the motor function and sensation in my foot and leg. Back to the nerves, you just never know? He said it could be up to 6-12 month's before I regain normal function and sensation, and there's a small chance it may never fully get back to normal. We had some encouraging things come from this appointment. First, he seemed pleased with the slight progress my foot and leg had made in the last 4 weeks. He compared my exam with the physiatrist notes from when we first got home. Second, he felt due to the progress, surgery was not something we needed to do at this time. As long as my leg and foot keeps improving, this will not be necessary, only if the improvement stops will we need to consider going this route. Third, he then wrote out a prescription for physical therapy, finally, someone to help me with range of motion, my foot is pretty pathetic right now.

     Over the last week I have had two physical therapy appointments. I now have daily exercises that I can do at home to help with motion and regaining strength. So far physical therapy has not been terrible and unbearable, everything about it has been good.

     The pain in my foot is still so intense. Last week I had a very good friend of mine brainstorm with me. She is always so good to do this, she hates seeing me in pain, and she's good at coming up with solutions that may not have crossed my mind. Thanks Kate! She knows how bad nerve medicines affected me over the last year, she knew this was not a road I was willing to travel again. I told her how ice was my only relief, but icing the top of my foot is not so easy. I was putting a hand towel across the top of my foot then an ice pack, and then would wrap it up with an ace bandage. Not bad, but it doesn't last all night, after a couple of hours I would remove the hand towel so the ice pack was directly on my foot. This process of too much cold, and not enough cold, to no more cold, was keeping me up all night. She told me about a ice machine her neighbor had brought home after a knee surgery. I knew exactly what she was talking about, because a few years ago I had ankle surgery, and they would hook me up to one of these machines during physical therapy.

     Neither one of us knew the name of this machine, but I thought I would start checking onto it. I called medical supply stores, and ortho supply stores and was not making very much progress. Finally I reached a company that knew what I was talking about, only issue is they did not rent them out, it was for purchasing only. Over a $300 dollar unit, not interested. She told me they use to rent them, but only with a doctors prescription. She told me the one they carry is called the Ice Man, she told me it is a cold therapy treatment unit. I gave my physiatrist a call and left a message explaining what I was looking for to see if they could help. Something very ironic, this was last Tuesday I left the message, she called me on Wednesday to tell me someone had just came in on Monday with this very item I was looking for. She said if it wasn't for that she would never have known what I was talking about. She contacted the company for me and after a couple of days for insurance approval, Matt my man, brought the unit out to my house, and I will get to use it for the next four weeks. His is a little different, his is called a thermal compression unit. No need to feel it up with ice and water it has a built in refrigerator and keeps the temperature at a constant 49 degrees. It has three tubes that run from the unit to the foot cuff. One tube for bringing water in and the next for taking it back, the third is for air that slowly compresses the cuff and then releases. It continuously circulates cool water around my foot and leg. I can wear the foot cuff all night long because it runs for thirty minutes and then rests for thirty minutes. I have finally had a couple of good nights of sleep, it has been so nice.

Surgery Progress Nov. 7th, 2012

     Hello friends and family. I am four weeks post-op, and a couple of weeks ago I imagined this post as one with lots of exciting news to share. I almost didn't post this week, because unfortunately, I feel that I have nothing very exciting to share. My last week has been filled with lots of pain and disappointment. Mostly due to my foot and leg. It has been almost two weeks since the pain set in, and it seems like nothing is letting up. After two weeks I feel worn down and exhausted, the pain keeps me up at night and I am getting by with very little sleep. I'll will try to put into words the pain I am experiencing. The top of my foot and the outside of my calf still feels numb. My foot throbs with a deep ache continuously, it feels like all the little bones on the top of my foot and in my toes are broken. When I shower, the water falling onto the top of my foot feels like shards of glass. Blankets and sheets running across my foot feels like something is slicing right through the top. I walk around holding my pajama bottoms and pants leg up, because I can't stand it resting and rubbing across the top of my foot. A silly fluffy stuffed animal that was accidentally set on my foot, felt like a thousand needles piercing through. So crazy, and so not normal. Because it is my right leg I am unable to drive, this has been the most frustrating part. I want nothing more then to wake up and have everything back to normal with my leg and foot. Something to look forward to, is I have a neurologist appointment tomorrow. I hope we get to the bottom of the type of damage my peroneal nerve has, so we can get started on a treatment plan. I am ready to move forward and put this all behind me, I hope I get some relief soon.

     As far as my PN pain goes, I can happily say that I have gone more then a week without any burning. Just one of the many issues I can check off the list. It's a start, and I'll take it! I'm not very comfortable with sitting yet. I'd say that 75% of the numbness is gone in the in-betweens, but everything feels very raw and sore. Too sensitive to sit quite yet, I'm sure with a little more time the soreness will calm down enough to where I will feel ready to give sitting a try. I will be able to start physical therapy in two weeks, and oddly, I am counting down for this to begin. Not because it's fun, because there is nothing fun about physical therapy, but because it puts me on the road to recovery, and I am anxious to get to the end of that road.

     Sorry I have very little progress to share at this point, I hope things will soon get better. I look forward to the day when I can share my successful outcome. I still think with time I will be in a much better place, and will soon be living a life free of pain.

Surgery Progress Oct. 29th, 2012

     Today is my three week mark, I'd have to say I'm pretty pleased with my progress over the last week. My pain has come down enough to where I'm not needing to rely on ice nearly as much. To me this is a good sign of improvement. If I get up and try to be normal, like go to my boy's football games, then yes, I come home and break out the ice. And no, I did not sit at their games, in case anyone was wondering, I stood the whole time. I'm still very sore and extremely sensitive in the in-between area, I'm not quite ready to take this step yet. Hopefully soon.

     So yesterday I had a very busy day. It started with a doctor's appointment and then a funeral, (very sad) which between the two took up a big part of my day. I came home and laid down with some ice, but after a hour was back up, and spent most of the night down stairs with my family. I was really surprised that I had gotten through most of the day being up. I realized that I had gotten through the day without any of the terrible burning pain that started back up just before getting released from the hospital. I hope, after two weeks of intense burning, (and the last 20 month's before surgery) that this has finally stopped for good. It is really hard to say for sure, because it was for only one day, but I hope this is the first of many more days to come. Now I am waiting for that raw, sore, super sensitive and tender feeling to leave, and the pressure that comes with the unavoidable trips to the bathroom, and also standing too long. I still have some numbness in the in-betweens, but for now, it looks like I'm heading one step in the right direction, and I'm so happy!

     I wish I could be as excited about my leg and foot. Unfortunately, my leg has started to become very painful, it burns, throbs and aches all the time, sometimes it feels like someone shot a bullet right through the middle of my foot. Nothing I take touches the pain, and the pain keeps me up most of the night. I am starting to get a little worried, as I can see a familiar pattern of nerve pain begin somewhere new on my body. Some may think this is a good sign and that this means my leg is healing, but I have not been told by any doctors if this is the case yet. We went for an ultrasound last week, and just not your average everyday ultrasound. When we left the physiatrist, his office was going to call the Riverton hospital to set up the ultrasound appointment. A couple of hours after getting home I received a phone call from his office, explaining I only had two options for the type of ultrasound ordered. I had no idea there was options or a difference, strange. She explains that the doctor ordered a musculoskeletal ultrasound and that there was only two places in the Salt Lake Valley that could perform this. My choices were the Salt Lake Regional Medical Center, or the University Of  Utah Hospital. Knowing that I am not covered through our insurance at the U Of U, I chose Salt Lake Regional. I went up on Wednesday morning for what I thought was just an ultrasound, but once arriving I learned I had an appointment with a sports medicine doctor? I asked "why am I seeing a doctor?" "I thought I was here for an ultrasound?" They explained he was the only doctor trained to perform this type of ultrasound, and so my appointment would be with him. I was not impressed, after waiting for a very a long time while they worked on getting my medical records from the other office, all I learned, was that I have a very swollen peroneal nerve. He offered to do a cortisone injection, but really wanted me to try some sugar injections instead. This is not covered by insurance, and it is not a cheap treatment. It does sound interesting, and I would like to do some more research for this type of treatment, but not interested in this route until I learn more. He also does Regenerative Medicine with Platelet Rich Plasma, this was not offered to me, but I am very curious about this treatment, and would like to do some research for this type of treatment as well. I told him I would think about it and call back for an appointment if I decided to do the injections. I walked away feeling very frustrated, obviously my nerve is swollen, did I really need to go through all of that to hear something we already knew. For now I am waiting for my follow-up with the physiatrist this Friday. Feeling like this isn't really going anywhere either, I have made an appointment to meet with a neurologist on Nov.8th. I hope I soon get some clearer answers about the issues with my leg, and we can get to work on a treatment plan.

Fun Facts About My Blog

     I felt like sharing some fun facts about my blog. As anyone knows who has a blog, there is a section where you can look up stats. One of my favorite stats to check in on, is the audience. I am amazed at how my little story about my huge pelvic pain issue, has spread across the world. I had no idea my story would be followed by so many people, and in so many countries.

      Me and my husband started my blog because we thought this would be the best way for our friends and family to check in on my progress, while on the other side of the world. We felt that two weeks would be a long time for our close friends and neighbors to wait to hear of any results. We also felt that our kids, and our family helping with our kids, would probably get bombarded with questions day after day while we were away. So we created this blog to make it easier to get updates, and without everybody needing to rely on my kids or our parents for any information. I knew updates wouldn't be enough, I knew that there would be a lot of questions on why we were even going out of the country for a surgery, and about the issues that created me needing this surgery in the first place. So I started to share my story, so everyone would have a better understanding of what brought us to the decision of going to Turkey for surgery.

     Before leaving for Turkey, I think I had only gotten about 9 post published, I still needed to share more of my story, but decided to put it on hold, so I could post about our upcoming journey to Turkey. At the time I had just over 300 page views, but, what I found to be the most interesting, is I noticed my audience consisted of not only the United States, but Germany, Turkey, Russia, and South Korea as well. I felt a little surprised, because I assure you I didn't know anyone outside of the U.S., with the exception of a good friend who had recently moved to Germany. Assuming this was why Germany was a part of my audience, she told me that she hadn't gotten a chance to check out my blog yet.

      One week before leaving, I joined facebook, specifically to join a PN support group that I had recently learned about. I put my very first post on FB, explaining how I had felt so alone living with this condition, and how surprised I was by the number of people who suffered with PN just like me. (over 250 to be exact) I also shared that I was leaving for Turkey to have pudendal nerve decompression surgery in a little over a week. The response was overwhelming, other than sharing the same debilitating condition of  PN that gave us all a common connection, these strangers soon became my friends. I found this to be such a coincidence, or just one of life's little ways of giving me exactly what I needed at that particular time. Everyone was so kind, and there was a continual out pouring of support and prayers being sent my way. They all wished for me to have a pain free life, and wanted me to keep them posted on my progress. I no longer felt alone in my fight against PNE,  and over the last couple of weeks, my PN group has turned into a lot more than just friends, but more like family. Thanks FB PN Support Group!

     Well with that being said, while we were in Turkey I watched my page views grow and grow, and everyday I was seeing new Countries added to my audience. I had no idea that my story would have such an impact on people all over the world. I am completely overwhelmed that this blog has reached out to so many people like me, and I thank you all, for joining me in my journey to a pain free life.

     So here are the stats to date, I now have almost 5000 page views. My mother in-law assures me that at least 2000 of those are her, ha, ha, I think that's funny. The page views are not too big of a deal, where I am completely surprised, is by the audience stats. Obviously the United States is my biggest audience, with over 3000 views. It's the other 1500 plus view that completely shocks me, but in an exciting way. Turkey comes in second, with over 400 views, I know Prof. Erdogru follows my story and progress, but I doubt all 400 of those views are him alone. The next 1000 views comes from audiences all around the world, let me share. United Kingdom, Canada, Russia, Israel, Pakistan, United Arab Emirates, Australia, New Zealand, Norway, France, Germany, Italy, Finland, Ireland, Switzerland, Austria, Netherlands, Denmark, Sweden, Latvia, Romania, Greece, Croatia, Macedonia, Cyprus, Ukraine, Iraq, Uzbekistan, Bulgaria, India, Sri Lanka, Japan, Malaysia, Guam, Spain, Philippines, South Africa, Georgia, Guatemala, Poland, China, and South Korea.

      Unbelievable, I am amazed! I'm sure that a lot of my audience in the other countries come mostly from the PN facebook support group. There has been a lot of positives in starting my blog, I was a little hesitant at first, because sharing my story about the most private parts of my body, isn't exactly easy. First of all, I have had the opportunity to talk to some of these people from here (U.S.) and also in the other countries, who suffer just like me. Talking to someone who understands exactly what I am going through is a big comfort. Also, this has opened my eyes, I had no idea PN was such a big issue, and I now know, although it is a rare chronic pelvic pain condition, that PN affects people from all around the world.

     For everyone who has been following along on this journey of mine, Thank you! This has given me something to look forward to everyday, and has revived my inner energy. What a great healing instrument this has been during my recovery process.

Surgery Progress Oct. 23rd, 2012

     I know, I know, I'm sorry, it has been a few days since I have posted about my progress from surgery, so sorry! I am just tyring to get back into the swing of things, all while trying to take it easy. If that's possible? Probably not, but I'm doing my best.

      Today is my two week mark, and I have to say I have had a rough couple of last days. I know that I way over did it in Turkey, taking in some of the sights before leaving, that was followed by a layover in Paris, that came with all play and very little rest, and than an 11 hour flight home. It was a lot to ask of my newly repaired nerve that is trying to heal, and now it's giving me grief. On Sunday and Monday I couldn't even rate my pain it was way beyond anything on the 1-10 scale. On Monday I also noticed things were starting to wake up a little, the numbness is starting to leave, but the nerve is waking up very angry and agitated. OUCH!!! On Monday the pain kept me up for most of the night. I started to get a lot of shocking sensations, or quick zaps of shock like pain. At first it started in a couple of areas in my in-betweens, and before long there was no rhyme or reason, I was feeling the shocking pain all over. I could find no relief, I broke out the strong med's, and for the first time ice was offering no comfort. The way I understand it, is that this is normal for nerve regenerating, and as terrible as this is to go through, this is a very good sign that the nerve is making new connections. I slept most of the morning away, and by the afternoon I was starting to feel more comfortable. By night time I would say my pain was at about a six, and I was able to get out of bed, and hang out with my family for a couple of hours around dinner time.

     Everyone has been worried about my leg, and is wondering how it is doing. For the most part my leg has had some slight improvements over the last two weeks. But, there is still areas that I can not feel, and I can not point my toes up for the life of me. My biggest issue is, that once getting home, I realized that I was not going to be able to drive, since my right leg and foot has lost some of the motor function and feeling. So on Monday my husband drove me to my physiatrist appointment. After an examination we discussed a few options, in Turkey they really thought having an EMG was urgent. Here, the doctor thought this was not the most important test right now, maybe in couple weeks, but not right now. He thought the best test to start with would be an ultrasound. He said if he was not getting the results needed from the ultrasound we would move onto a MRI. These test are to rule out the damage to the nerve and to look for any pockets of blood that might be surrounding the nerve.  These test would determine two things, one, we can simply allow the swelling to go down around the nerve and within 2-3 month's everything will go back to normal. Or, two, based on the findings, know that in order to regain the feeling and function back in my leg, I would need to have peroneal nerve decompression surgery. Wow, another surgery, seriously! Not just another surgery, but another nerve decompression surgery. Well, I have to say, based on the slight improvements over the last two weeks, I hope this is a good sign, and with some more time my leg will return to normal all on it's own. After my ultrasound I will let you know the results, for now we just wait, and hope for more improvements.

Final Post Op Update In Turkey

     Our last couple of days have been filled with post-op visits, and physical therapy appointments for my leg. As I explained in the last post, my pain levels have been high. By the time we get up and get ready to go to my appointments, and then actually get to my appointment, plus the time we spend at the hospital during my appointments, wow...it just completely kicks my butt. Once we get back to our hotel I'm down for the day. When we get to Prof. Erdogru's office he is excited to hear of any progress, his first question is "Can you sit?" I then watch the disappointed look on his face when I say "It still hurts." My pain concerns him, but we have talked, and both agree, that the pain I am experiencing is mostly from the surgery. We also discussed that I probably have a very low pain tolerance, I just tend to be more sensitive to pain than probably most people. With this we have not ruled out a success or not for my surgery. I now fall into the category of his patients where we have to wait and see. Prof. Erdogru and I believe that with time I will see some good results. But remember, we are talking nerves, and nerves can take a long time to recover, repair, and heal, possibly up to six months or longer before we will know anything for sure. I will still keep my progress posted on my blog, and don't worry Prof. Erdogru you will be the first to know of any big news, the first...I promise. Thanks for being such a wonderful doctor, and making our experience in Turkey worth while.

     On Wednesday when I woke up I noticed my pain had eased up some, when I first started to experience pain a couple of days after surgery, my pain level was at a 8-9. I was very uncomfortable, and I relied on ice to relieve my pain. On Wednesday my pain level was at a  6-7, which made things a little more tolerable, I felt a little more comfortable and got through my whole day without ice, Yay! So, a sign things are slowly getting better, however everything in my in-betweens are still very numb.

     As far as my leg goes, Dr. Dilek, the physical medicine and rehabilitation specialist who has been working with me this last week, seems to think that it could take up to two or three months before I regain full use, and feeling back in my leg. This has been a very slow process, but every couple of days, I do notice a slight change. I hope to prove her wrong, and hopefully after a couple more weeks I will have a fully functioning leg again. We are scheduled to go see a specialist on Monday after returning home, hopefully we will get a better understanding of exactly what's wrong. On Wednesday, she had my boot modified with a rubber sole, so the plastic bottom would not cause me to slip and fall, this also makes walking around a lot quieter.

     This is our final  post-op update in Turkey, as we are going home tomorrow. Thanks for following my recovery progress, I have had such amazing support throughout our journey to Turkey. Thanks to all for following along.

Prof. Erdogru's Exciting Day

     Today is Prof. Erdogru's exciting day, where he will have the opportunity to present his laparoscopic pudendal nerve decompression technique at the annual IPPS conference in Chicago. IPPS stands for the International Pelvic Pain Society. I can't help but wonder, how today may be the start of some big changes for all of the PN sufferers in the U.S. For those of you who are new to the Pudendal Nerve world, there is a conference hosted for doctors and physical therapists, that deal with the patients who suffer with chronic pelvic pain every year in the U.S. Pudendal neuralgia, or pudendal nerve entrapment, although rare, is one of the many topics that will be discussed this year.

     On Tuesday, the day before Prof. Erdogru was to leave for Chicago, he shared with me and my husband his presentation that he had prepared for this very special event. He first learned of this pain condition in 2005, and being an urologist of patients with chronic pain he did some more research on this condition. After a couple of years, and having a lot of experience with laparoscopic surgery in the pelvis area, he decided he would try and reach the pudendal nerve, which lies deep in the pelvis area by using a cadaver. He realized that this could be done, and this is how his technique came to be. He has put a lot of research and time into this debilitating condition, and over the last couple of years he has pushed his knowledge to new limits. He has done an amazing job of keeping track of his patients outcomes, and progress for a continued study of his technique. He has also had several successful outcomes. I am so excited that he will get to share his knowledge, and story with the doctors who attend this conference from the U.S.

     All it takes is for one doctor to see the benefits of this procedure, over the open surgery approach, to hopefully make this available for future PN patients in the US. I am so grateful that he took the time to share his presentation with me and my husband, and I hope that the doctors who hear his presentation, find it to be just as impressive. Wishing you the best of luck Prof. Erdogru!

Last Day In Turkey

     Wow, our adventure in Turkey is only hours away from being complete. I am so thankful to Prof Erdogru, and the kind nurses at Memorial Atasehir. Everyone has been so great to me and my husband, as we have been on the other side of the world, for what we hope will be a life changing surgery. We are still anxiously awaiting the outcome for my pudendal nerve decompression surgery. Unfortunately nerves are just a little slow, and it may be a few months before actually knowing the success of this surgery. This was my very last night of (not) sleeping in Turkey, I never really got on board with the Turkey time, and maybe this will be good for our return home.

     Oh home, how much we have missed our home, we can hardly wait to get back to all that is familiar again. We are most excited to get back to our kids. Parenting over Skype, and Google Voice is getting super old. We want to thank our ward for bringing meals in, and feeding my family while we were away. We also want to thank our parents for taking care of everything on the home front while we were away, and thank our friends and neighbors who stepped up and shared in this mighty load of looking after and keeping our five kids safe, fed, and loved for us as well. We couldn't have done this without all of your help and support thank you so much, we are forever grateful, and feel completely blessed to have such amazing people in our lives.

     I am looking forward to taking hot baths, and laying down in the comfort of my own bed. Kris and I can't wait to get our mouths on some yummy American food again. Food in Turkey isn't terrible, just different. For thirty six years I lived in the same place, and this was my first time traveling out of the country, so it was no surprise that experiencing new food in a different country, would be quite an adjustment. I guess there is two scenarios, You either love it, and come home with some extra pounds, or you're not really that into it and come home weighing less. Let's just say, I am very excited to get on the scale when I get home.

     This afternoon we will board our plane, coming home we had several options, but all the options involved a layover, and a lot were overnight layovers somewhere. After going through our options of Venice, Rome, London, Germany, France, Atlanta, New York and some others we chose Paris France. This is a 16 hour layover, we arrive at 6:00 pm and leave the next day at 10:10 am, which will be a direct flight back to Utah. We hoped this would give us enough time to at least go and see the world famous Eiffel Tower, and maybe try some French cuisine. What a great way to end our adventure. After one of my good friends, who had just recently moved to Germany learned this, she instantly offered to drive down to see us. So now we are even more excited to get to Paris. Even though it is a 5 hour drive for her, we are thankful that we will get to experience Paris with a great friend. Plus we will get our own personal tour of Paris from someone who knows a lot more about the city than us. What a great way to end our trip, I am so excited, Thanks Kelly, we are looking forward to meeting up in Paris.

     On Friday afternoon we will finally arrive home, I have so many stories to share, I can't wait to get them posted on my blog. Some things you can look forward to in my upcoming post, are the sights that we were able to go to while in Turkey, and the crazy merchants and store owners of the Grand Bazaar. What a wild experience, and of course my recovery updates, I can't wait to share. This will be my last post I write in Turkey. I will have to play catch-up once I get home. Thanks to everyone for checking in on our adventure, and my recovery while we have been away. Thanks for all of the prayers and well wishes over the last couple of weeks, and all of the support from my family and friends. Because of this journey I made many new PN friends, as well as some perfect strangers that have been following my story. I feel as if you have all been here by my side throughout this amazing journey. I'm completely overwhelmed with so much love, your love has been a key element in my recovery and healing process. Thanks again to everyone, sending all my love, Shirlayne

Our Hospital Stay

     After learning about the complication with my leg, we were told that we would not be able to leave the hospital on Thursday as planned, and that I would need to stay until Saturday.  Bad news, two more days of very interesting Turkish hospital food.

     On Thursday morning, Prof. Erdogru came by to see us, he removed my drain line, and examined my incisions. He told the nurses they could remove my IV lines, and gave me the okay for a shower.
It was so nice to get up without dragging a bunch of lines and bags around, yay, I was free.

     Walking around was still a little difficult, even with the boot, my leg felt very unstable. When I would get up, I felt dizzy and weak, and I relied on my husbands support in getting around. A shower sounded nice, but I hadn't really put a lot of thought into it. The only way I could stand on two legs was with my boot, and the support of my husband. I knew my boot could not get wet, and I'm pretty sure my husband didn't want to get wet either. So I looked in the shower to see if there was a bench to sit on, nope, one more thing we get to go ask for at the nurses station. How do you say "shower bench" in Turkish? Luckily, somehow between saying shower and then sit, while pointing to my leg, they got it. One of the nurses stepped into a room and came out with a plastic bench. Nice, we got exactly what we needed again without too much confusion. Whew! Shower problem solved!

     Later in the afternoon, Prof. Erdogru stopped by to check in on me again. He brought by a stack of  DVD's of my surgery, and said he would come back a little later to go over the surgery with us. He came back just as it was getting dark, and spent about an hour going over my surgery. He would get very excited when he could point out a stage in the surgery where he was able to fix an issue with my nerve. He truly is passionate about the work he does, and for this I am thankful.

     On Friday morning when I woke up, I noticed I didn't have any more "pins and needles" sensations running through my left leg and foot, and after poking around on it, everything felt normal. I was so happy, one leg down and one more to go. This helped me to get up a little better and walk around without much help. I also noticed that I didn't feel dizzy or lightheaded anymore, this was nice. I started to get around much better and little faster all by myself.

     Our days at the hospital were pretty much the same, at night we would talk to our kids and family on Google Voice. We would go on walks late in the night, around 1:00- 4:00 in the morning, (we were still on Utah time) and fall asleep between 5:00-7:00 in the morning, Kris always before me. It seemed just as the sun was coming up I would start to feel sleepy. Most of the nights it was just us in the hallways, but sometimes there would be a very friendly Turkish man walking around as well. I'm not sure what his excuse was for being up so late in the night, but we always smiled at each other and a couple of times tried to talk with each other. The most that came of our conversations was that he learned we were from the United States, and he was from Turkey. One day he said "good morning" and we said "merhaba." which means hello in Turkish. This made him smile so big, and he said something else that we could not understand. I wish we could've chatted, he seemed to be a very interesting person, with some great stories to share. Once we'd get to sleep, the interruption's would begin. They would bring the breakfast tray in early, me and Kris would listen to them come in and set it down, neither one of us would get up. About a hour later they would come back in to get our untouched trays. The only thing we would get up for was to talk to Prof. Erdogru, after he left we would sleep until lunch. We would pick at our lunch, and we would get a visit from the physical therapist for electro shock therapy. Then we would use the rest of the afternoon checking in on Facebook and updating my blog. Kris would always make a run to the Palladium Shopping Center for dinner, and we would count down the hours before we could call home again to check in with our kids and family. 1:00- 2:00 am Turkish time was 4:00- 5:00 pm Utah time. Our days in the hospital, not too exciting, I know.


     The hospital staff was very friendly and extremely patient with us, overall our experience was very good. We learned that the night time nurses worked a 14 hour shift, and the daytime nurses worked for 10 hours. Our first night before surgery a nurse came in to help us with all of the preparations. Her name was Duygu,  her name means "feeling" or "emotion". She could speak English pretty well, which was very helpful during our hospital stay. We were always excited to see her during our stay, she was very kind, and we were always able to communicate with her. Thanks for being an amazing nurse Duygu!


     Finally, Saturday came, we really hadn't seen much improvement with my leg over the last couple of days, and I was worried that I may have to stay longer in the hospital. What a relief when they gave me the okay to finally be discharged. Prof. Erdogru wrote out a couple of prescriptions, and asked us to come by his office on Monday for a post-op examination. While we were waiting to get discharged, Kris wanted to go and get my prescriptions filled before we took off for our hotel. The pharmacy is just outside the hospital on the main road, next to the yummy fruit stand. He asked if I would like to come along, I didn't have to think twice about his offer, I was ready for a change, and outside sounded nice. I thought I was doing so well getting around in the hospital, and than we got out into the real world. I felt a little disappointed, because as we walked down the road to the pharmacy, it was clear I was moving very slowly as everybody hurried past us. It was a quick reality check that I had a lot more improving do.

     Once getting back to the hospital, someone from the International Marketing Department came in to help us with our bags, it seems they are always followed by their driver, they were there to help us get to our hotel. They insisted that I leave in a wheelchair, I truly am much better off walking than sitting in a wheelchair, but nobody really gets it, and I didn't have the energy to explain my situation. So, for the sake of wasting no more time of getting out of the hospital, I do as they ask, and we finally leave our hospital days behind us.

First 24 Hours After Surgery

     Waking up from the seven hour surgery was brutal, as I started to come to, I can remember literally trembling so violently, and having such terrible pain. I was practically jerking, my teeth were chattering, and my jaw would not stop quivering, the only word I could mutter through my chattering teeth was hurts. I kept saying hurts, it hurts, but I wasn't sure if anyone really understood, because all I could hear was Turkish voices. Finally someone grabbed my shaking hands and said, (I have no idea, it was in Turkish) and soon I was out. They must have given me something good, because the next thing I remember was waking back up in the hospital room where my husband had been waiting. I woke up feeling very little pain, and was able to rest quite comfortably. I remember Prof. Erdogru coming in to talk to me and my husband, but honestly I can't remember very much of that conversation, maybe a little something about my numb legs, but that is all. I was in a rather odd state for the next 6-7 hours, I was somewhat aware of what was going on around me, but feeling so sleepy, my eyes just wanted to be closed. This seemed to bother my husband a little, he mentioned he didn't like not knowing if I was really sleeping or not, because every time he thought I was asleep, I would talk to him...with my eyes closed.

     After coming out of that foggy state, I felt a little more alert, and I also had more understanding of my situation. I definitely felt sore, and I also thought it was odd that my legs seemed so heavy, and that I was unable to move them. I did a quick examination, okay, I see two legs, I can see my toes, but I was unable to pick my legs up and move my feet from side to side or back and forth.. Hmm... that's weird, so I wiggle my toes, with more effort than expected my left toes move just ever so slightly, hmm, okay, but my right toes, absolutely nothing. I feel a sense of alarm, I know this can't be good. I go through the whole process again, with the same results, oh, oh, something is definitely wrong. This sensation was feeling very familiar to me, like the times I have had an epidural during child delivery, so just like after giving birth I assume with time they'll eventually wake up. I told myself it would be fine, after a couple of hours my legs will wake-up, I hope?

     I was feeling very nauseous, I really thought that I might throw up at any second, I kept the little throw-up container very close, but managed to avoid this over the next few hours. My mouth was extremely dry, and I had a terrible bitter taste that would not go away. I wasn't sure if this was due to the sleepy medicine prior to surgery, or something else during surgery. Between the nausea and bitter taste, I really wanted something in my stomach, anything. Here in the U.S. they're really good about starting you on clear liquids after surgery. Usually, they start you out with ice chips, and then offer something like apple juice or a slushy, if you can keep that down they offer some broth and maybe some crackers. I just wanted that nasty taste out of my mouth. After a couple of hours, I remembered I had some gum in my purse, I asked my husband to please get me a piece. I was so glad I had this, after three pieces I finally got rid of the nasty taste, but my stomach still felt nauseous. At one point in the night I asked if I could have some water, I felt so thirsty, the nurse said "no, you can't have anything yet, I would have to wait until the next day." this was really hard, I really didn't understand why they had me wait so long, I would have never made it without the help of my gum.

     The night was very long, besides feeling like I needed something in my stomach, I was starting to get very uncomfortable. Not because of pain, because I was hooked to a morphine pump, and this help manage the pain really well. It was because with the exception of some areas on my left leg, everything from the waist down was numb. I didn't like the position I was in, but there was nothing I could do about it, I was stuck. I asked my husband what time it was, he told me it was almost 1:00 am in the morning, I felt very discouraged, because it was going to be a long time before morning, and I counted the hours until Prof. Erdogru would come. When the door opened in the morning it was only the hospital staff bringing a tray of food, he pointed to me and shook his head "no," he than pointed to my husband who was asleep on the fold out chair and then pointed back to the tray of food while nodding his head up and down. Double whammy, no Prof. Erdogru, and still no food or water for me. About an hour later the door opened again, finally it was Prof. Erdogru, I was so excited to see him come through that door, I knew this meant some changes would soon happen.

     He explained that once the nurses removed the catheter, I could get up and walk around. Umm, big problem, how am I suppose to get up and walk around when I can't even move or feel my legs? I explained my situation about my legs to Prof. Erdogru, he became very concerned. He said he would call in some specialists to evaluate my legs, he apologized repeatedly and left. Soon a doctor from Orthopedics came by, after his examination he said that within 3-4 days my legs would be back to normal. That didn't seem too bad, then a doctor of Physical Medicine and Rehabilitation came by. She had me try to lift and bend my legs, curl and flex my toes, and than she used her reflex tool and started tapping away on my legs and feet. After, she used the same tool, which also had a sharp pin like pricker attached to it, and began pricking around to get an idea of lost sensation. After her evaluation, she too thought this would only be temporary, and told me she would have one of her physical therapist come by for treatment. I guess sometime after surgery the night before, I had already talked to Prof. Erdogru about my legs, my husband told me that a radiologist came by with an ultrasound machine, and checked for deep vein thrombosis. I really have no memory of this, I must have been really out of it, but my husband told me everything checked out okay. After about a hour Prof. Erdogru stopped back in, he had went back and reviewed the Cd's from surgery. He was happy to inform us that after reviewing the surgery, he was confident that my leg complication was not the result of anything done during surgery. We were all relieved to know this, and I am thankful he cared enough to take the time to double check. He asked, "have you puffed," and I said "yes," I then got the okay to eat. Who knew that would be the only requirement.

     Imagine how disappointed I was when I got my first tray of food, there was something about the way it looked and smelled that instantly made me lose my appetite. (I've never been good with the hospital food in the States either, it reminds me too much of school lunch.) Kris offered to butter my pre-packaged roll, he thought I should at least eat that. I took a bite, between my very dry mouth and the hard roll I had a hard time chewing it up small enough to swallow, I spit it out, I was afraid I would choke if I kept going. They brought a hot red liquid of some sorts in a bowl, I gave it a smell, it smelled a little sweet. I managed to sip some spoonfuls of this, maybe comparable to jello water, but hot, and not as sweet. So there you have it, some hot red liquid and water, I really wasn't satisfied. I remembered that there was a fruit stand not to far from the hospital, I asked my husband to go down and get some bananas. He returned, but the bananas were a little spotted. I'm pretty picky when it comes to bananas, I like them just barely ripe and no spots. I felt disappointed, but ate one anyway, even with spots, I was finally satisfied. I  had finally gotten something in my stomach, and I felt better.

      In the afternoon the physical therapist stopped by, she hooked my legs up to the TENS unit, or as they called it, "electro shock therapy." After she was done she showed my husband some exercises, she wanted him to do each motion 100 times, once a day. She said she would return tomorrow.

     Before going home Prof. Erdogru stopped by one last time that day. He removed my catheter and said someone would be by to fit me with a walking boot. He said that I should be able to get up and walk around with the boot. Good, I was getting anxious to get out of bed, I was tired of laying there. By that evening I was able to lift my left leg up, and reposition it anywhere in the bed, but my right leg was still stuck in the same position. He apologized some more for my leg, and left.

     A little later, a man showed up with a bag, he pulled my new walking boot from the bag, and put it on my leg. He then unwrapped a plastic T-shaped device, which my husband called my wings, and velcroed it to the bottom of my boot. He helped me sit up, and with the help of my husband they helped me get to a standing position. Finally, after 33 hours, and with the support of my husband, I am on my own two feet, a little wobbly, but I am up. The man has me walk around the room a couple of times, I can do it, but only with the help of my husband. He gives us a smile, he seems satisfied and he leaves. Later that night with my IV's, pain pump, and drain line still attached, my husband helps me take my first, very slow walk, up and down the hospital corridor.

Post Op Update #7

Today we went back to the hospital to follow up on Shirlayne's surgery and her leg. First we went to the department of Physical Medicine and Rehabilitation. The plan was for her to first receive electric shock therapy and than have an EMG on her leg. They told us the cost would be 942TL (about $500) for the EMG. We asked about using our medical insurance but it didn't seem like under the time constraints that they would be able to work that out. Maybe if we had set up the EMG well in advance, something could have been done. So with that information, we decided to forgo the EMG here in Turkey and begin working with our physicians back at home to get things scheduled. We will continue to have electric shock therapy while we are here but nothing else. Shirlayne is still having trouble with her leg, and part of it is still numb. There has not been much improvment in her right leg over the last few days.

After the electric shock therapy, we met again with Prof. Erdogru to follow-up with Shirlayne's progress. Shirlayne explained that she is still having pelvic pain, and it is difficult to sit. She said she does not know, but she thinks that the pain is coming more from recently having surgery, rather than the previous PNE pain. Prof. Erdogru agreed and then performed a quick ultrasound and examined her incisions and everything looked normal. After that we made an appointment to see him again tomorrow.

We are leaving Turkey on Thursday and we are excited to get back home and be with our kids again.

Final Hours Before Surgery

     Prof. Erdogru and Pervin discussed that switching our hotel accommodations would be best for our post-op visits. Originally Prof. Erdogru's office had arranged our first four nights in Istanbul at the Memorial Guesthouse, before being admitted to the hospital for surgery.  At my consultation, Prof. Erdogru asked for us to get checked into the hospital at 5:00 the night before surgery, for pre-admitting and pre-surgery testing. This meant we would need to ask for a refund for our last night at the Memorial Guest House. Pervin would get this done for us, but we would not receive the full refund, only half, since we would be there for part of the day. Also, to our surprise, we had racked up some additional charges at the hotel. First, 156TL for outgoing phone charges. At home we purchased a phone card with a local Istanbul number. We were using the phone card to call home, but apparently even calling Istanbul numbers is very expensive. That was an expensive lesson to learn, oops! As you can tell, we called home a lot on our first day or two. Next, 32TL for our omelet breakfast we ordered, we somehow had a misunderstanding, we were given instructions that we could order anything from the breakfast menu (for free), but apparently not. Now we know why so much food came on our first morning, our free breakfast was the large platters of cheeses, cucumbers and tomatoes, meats and olives, with tea and rolls, which we ended up sending it all back. So now, instead of receiving a refund we owed additional money. After getting the additional charges figured out for us, Pervin, then told us she would be by on Monday at 3:30pm, to get us to the hospital.

     I was super tired, from getting no sleep the two previous night, so I climbed into bed for a three hour nap.  After getting some rest, we were hungry. We hadn't had anything to eat since our omelet, so Kris gets the Domino's Pizza ordered.  We are now using Skype or Facetime to communicate, although it is not always the easiest to communicate, due to the poor Internet connection from the hospital, we use this because it is free. We were up late in the night again, we spent more time talking to our kids, and I used this time to post on my blog. Kris fell asleep around 4:00 am, and I got to bed by 7:00 am, we both slept until 1:00 pm the next day. This is the most sleep I had gotten in a few days, and I felt better. Sunday would be our only day to go and do a little sight seeing, after sleeping through most of the day, we decide to stay in and take it easy. Traffic in Turkey is like nothing we have ever experienced, instead of trying to find a taxi, and having a stressful drive to the sights, and not being sure what is and isn't open on Sunday's, staying in seemed to be the logical choice. Maybe we will get the chance to go see some sights before we leave, we'll see.

     Since I couldn't eat my hot dog and corn pizza from the night before, because I was completely turned off,  we are feeling hungry again, and so we decided to go to the hospital cafe once more. I really liked my chicken burrito from last time, so I play it safe, and order it again. Kris went for a hamburger, but it seems it comes with no bun, we have to point to a picture of the chicken sandwich, which does have a bun, to ask for his hamburger to come with the bun. Our server seemed to understand. Kris doubted they would have ketchup for his fries, so we just waited to see. They did it again, everything came out exactly as ordered, including ketchup. We are not doing too badly, considering the huge communication gap. We had a little problem when we went to pay, our server brought back our credit card and shook his head "no". We assumed this meant it didn't go through, but we are not sure why? Holding the credit card machine up for us, and telling us to read the message didn't help.  I pull a different card from my wallet, he shakes his head no again. Hmm, what is going on? Kris pulls out his iPad and uses google translate to figure this out.  We finally figured out that the credit card machine is down, but, at this point, we had not gotten any Turkish Lira from a bank yet. An idea comes,  we ask if they can charge it to our room, and he makes a call and says "yes", whew! problem solved, we can now go.

     We had learned, the morning of the day we were leaving for Turkey that our ward was going to have a special prayer and fast in my behalf, (Thank you, Cobble Creek 2nd ward!) so me and my husband chose tonight to start our own prayer and fast. We had a very quiet night, it was the most calmest evening we have had in over a week, we talked with all the kids again, and worked on the blog some more. My blog has been great for filling in extra time, and a great distraction for my upcoming surgery, in giving me something else to focus on. We went to bed by 3:00am, I actually went to bed before the sun came up, finally, I think I am making some progress with the time change. I am surprised when I wake up at 7:30, I decide to get in the shower, and start to gather my things for the stay at the hospital. Kris must have been really tired, because he is still sleeping after everything I did. I worked on my blog, and I finally wake Kris up at 1:00pm. We didn't need to worry about eating since we were fasting, but I needed him to get up and get all of his things together, because we would not be returning to this hotel after today. We had a knock on the door at 2:20pm, it was Pervin, she was already here and she explained we would be leaving by 3:00 instead. Okay, we will be ready, at 2:45 we get another knock on the door, it is Pervin again, she says "come, we must go now," she had a hotel assistant or porter with her to get our bags. We quickly gather our things and go with her. She leads us to the parking garage and has the porter place our bags against the wall. She then leads us up to the cafe to sit down, because our ride is not there yet. I'm not sure why all the urgency, we sat in the cafe for twenty minutes, before heading down to the parking garage for our ride. It was raining outside, and we again, get to travel across the Bosphorus Bridge to the hospital, it is a very beautiful sight in Istanbul.

    Once we arrive to the hospital Pervin takes us to patient admissions, they take a copy of our passports and have us sign a couple of forms. The hospital then takes the first half of payment for my operation, 9,500TL or $5,000. Pervin than explains the hospital is getting my room ready and we will wait twenty minutes. She had us go to the lobby and explained someone would be down to get us once the room was ready. She tells us goodbye, and wishes me good luck on my surgery. We stayed in the lobby for just over a hour. We walked back down to patient admissions to see if we were forgotten about, and the girl makes some phone calls.  Within five minuets we are shown to our hospital room. The hospital is very nice and very clean. It is about 5:30 pm and I am beyond hungry, we had been fasting, and I hadn't had anything to eat since the chicken burrito from the cafe' the night before.We say a prayer to break our fast, and let the nurses know at the nurses station, we are leaving to get some dinner. They tell us we can get food in the lobby at the hospital across the street, we knew what she was talking about, it is a small cafe in the hospital that serves rolls and breads, and coffee and tea. We were hoping to have some real food tonight, so we tell her thank you, and stick with our plan.

     Kris had already decided we were going to go to the Palladium mall to eat, he already checked out the restaurants online and knew there would be some familiar options. We needed  to get a taxi to get us over to the mall, I thought since New York taxi's accepted credit cards, that Istanbul would as well, especially since getting around by taxi in Istanbul is so common. We went to the hospitals reception desk and ask her to call us a taxi, we ask if taxi's take credit cads, and she says "no." We then use google translate to explain we do not not have any Turkish Lira, and ask about an ATM, Google translate was not doing a very good job at translating her response, nothing was making sense, she finally gestures to us to follow her. She takes us on the elevator and up to the 2nd floor, same floor as Prof. Erdoghru's waiting room, she then starts to head for the back door of the hospital and right outside the door was an ATM. Yay! We finally have cash to use in Turkey. We go back to the lobby and have the same girl call a taxi for us.
The ride to the mall is very short from the hospital, the mall is enormous, and a very pretty structure. We find the food court and have our dinner. We don't stick around because we knew the hospital needed us back to prepare me for my surgery.

     Once getting back to the hospital, the staff gets to work. They have me sign some papers and ask me questions about my past medical history. Someone comes in and does an EKG, a very fast and painless test of the heart. Someone else comes by with a wheel chair, they want me to get in, I try to tell him I am fine, but he is very adamant about me getting in the wheel chair. I give up,  it is too hard to explain when neither one of us can communicate with each other. I get in the wheel chair and he takes me to the elevator, and we go down a couple of floors, he had taken me to radiology for a chest x-ray. Also very fast, he then takes me back to my room. We settle in for the night, we talk with our kids and family one last time before the surgery. I work on my blog some more and try to get to sleep around 4:00 am.  When I wake up it is only 6:00 am, I turn on the laptop and check in on Facebook, for only just joining a little over a week ago, I am completely addicted.

     Considering that I'm about to have surgery in a foreign Country on the other side of the world, I am feeling unbelievably calm. I have no doubts, fears, or anxiety, just a strong sense of relief, that I am finally coming to an end of a very long and painful road. I know I made the right decision. From the time I learned of this surgery in Turkey, everything leading to this day seemed to fall into place effortlessly. It feels this path to Turkey was clearly marked with all the right signs, and it was a very smooth and easy road to follow.

     A few minutes before surgery a nurse brought a small cup to me with some liquid medicine. She told me to drink it, it was medicine to make me feel a little sleepy before surgery. My husband warned me, he said, "you know that is going taste so nasty." He was right, it tasted terrible, it made me shiver, and left a bitter taste that I could not get out of my mouth. Soon they were there to get me, and the surgery that I had been waiting for, was only minutes away from starting. I was so excited, and relieved that my countdown to a pain free life, was about to begin...

Post Op update #6 (Shirlayne's Story)

     On Friday morning I woke up with a completely recovered left leg and foot, no more numbness and no more tingling. Unfortunately, my right foot and leg is still very numb, along the top of the foot and the outside of my calf, and all around my ankle. Every day since surgery I have had a physical therapist come to my room and do electric shock therapy for twenty five minutes. We have seen very little improvement, my husband also works on the exercises with me that the physical therapist taught him. When Prof. Erdogru came by to visit this morning he was very disappointed in the progress of my leg. He wants us to come back on Monday and meet with the neurologist for an EMG test, and to set up a plan for when we return to the US. He has been very apologetic to me for this complication, he is very sincere, he still thinks I will have a full recovery with my leg.

     As far as my pain goes, I am starting to get back some sensation in my pelvic area, however my in-betweens are still very numb. On Friday I started having a lot of burning sensation return, after a couple hours, I couldn't deal with the sensation any longer, I really needed some ice. Kris really didn't think we would be successful at getting any, so, before we left our room, I looked ice up on google translate, the word came up buz, that's easy,  I can say that. So we walked down to the nurses station and I ask for ice. They give me a puzzled look, so I say buz (it sounds like buzz) she looks at me a second and says, "oh buz" (booze) she goes to gets some ice, and I get reacquainted with my good old friend "Ice" once again. I am so thankful for ice, it offers me some much needed relief when my pain is unbearable. I continue to stay very uncomfortable the rest of the day. When I woke up today, I felt a little better, but as my day has gone on, I am dealing with high levels of pain once again. My nerve went through a lot of trauma during surgery, I think with time it will calm down, and I will than have a better idea of my outcome with this surgery.

     In my defense, as far as the "big ole" mattress topper goes, let me explain. My only relief from pain comes from laying down. At the Memorial Guest House their mattress was extremely hard, and super uncomfortable. For the first time since living with this condition, laying down at the Memorial Guest House actually caused more pain in my in- betweens, even Kris complained about his back. So when we arrived at our hotel today and the bed was just as hard, or maybe harder, than the Memorial Guest House, I honestly didn't know how I was going to get through the next five days. I am already super uncomfortable from surgery alone. Our options, switch hotels, and hope they have a softer bed, or try and figure out a way to make this bed more comfortable. I really like my new mattress topper, comfort is key when healing and recovering. I think Kris may be a little jealous too, he already called my side of the bed for naps. (Ya right! In his Dreams) For now, I am loving this. Thank you Kris, for realizing how important my comfort is right now, and going along with my crazy hair brain idea, and last, for carrying that "big ole" mattress topper around the mall, and all the way back to the hotel. I love You... Who knows? Maybe I'll share! (After all, you have been stuck in that fold out chair at the hospital for the last few days.)