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.

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...

My Consultation With Prof. Tibet Erdogru

     I didn't have to wake up this morning, unfortunately, I never fell asleep during the night. Some how I felt fine, it must of been all the built up excitement of my appointment that kept me going. In fact, while I was up in the night on the laptop, I noticed I had a private message, I clicked on it and it was Prof. Erdogru making sure I had made it to Turkey, I'd like to think he was just as excited as me, but probably just more of  a very thoughtful person. Just for those of you who don't know, he is on Facebook's Pudendal Neuralgia Support Group and he keeps us up to date on his procedures it's very nice.

     Pervin explained the day before that breakfast was from 8:00-11:00, and that was included with our stay at the Memorial Guest House. We looked at our options, and there really wasn't much for options. The breakfast menu included only omelets, but not the typical omelets we have in the United States. I think there were five different kinds, plain, and others I quite didn't understand. I could tell they included meat, and on some multiple meats, I'm not much of meat eater so I ordered the plain and asked to add some veggies, my husband ordered a multi meat one, and some orange juice. We had the receptionist in the lobby, who spoke a little bit of English, help us get this ordered over the phone.

      My appointment with Prof. Erdogru was scheduled at 10:00 AM, Pervin asked us to meet her in the lobby at 9:00, she said explained he works at a different hospital. I was getting all my medical records in order when the phone rung, it was Pervin, she was already down in the hospital lobby waiting for us. I looked at the clock it was only 8:25, I explained we were still waiting on our breakfast to come, and as soon as we were done eating we would be right down. There was a knock on our door, it was a sweet lady holding this enormous breakfast tray, she carried it in and sat it on our dresser. Me and my husband got to looking at it and this was not what we had ordered. First of all the plates were identical which included large, thick slices of cheese, sliced cucumbers and tomatoes, a hard boiled egg, a bowl of olives, some rolled up meat slices, rolls with honey and jam and creme cheese or butter to use, and some tea in very little tea pot. We had barely finished examining what had just been brought to us when she was back at our door with what looked like the breakfast we had ordered. Our breakfast came on some very large plates, the omelet took up over half of it, on the other half was freshly sliced cucumber and tomatoes. We had just sat down and the phone started to ring, it was Pervin, she was reminding us that she was still down in the lobby waiting for us, I looked at the clock the time was now 8:40. We told her our breakfast just arrived and we would be down in 10 minutes. That's still ten minutes earlier than she had asked for on the day before. So we shovel the food in our mouths as fast as we can, I pick up the enormous trays of food that were brought to us first, and walk it out our door to give back to the girl, there was so much food, I hated to see it go to waste, and we had no where to store it.

     Pervin shows us to the parking garage where a car is waiting to take us, (she always has a driver,) and we leave for the Memorial Atasehir Hospital. A unique geographical fact about Istanbul Turkey is... it is the only city in the world that is divided by two continents, Europe and Asia. At the Memorial Guest House we were on the European side, and Pervin had just informed us that the hospital we were traveling to was on the Asian side of Istanbul. This meant we would be traveling on the Bosphorus Bridge and over the Bosphorus Straight, the channel of water that separates Istanbul into two continents. I had only looked at this on a map and now I was going to get the opportunity to see it first hand, I had no idea we were this close, and it made our 40 minute drive to the hospital very exciting.

     We arrived to the hospital 20 minutes before 10:00, unlike any other doctors appointments I have had in the past, there was no paperwork to fill out, none. We waited in the lobby for our turn with Prof. Erdogru. I think they called for us around 10:10 he greeted us in the hallway and showed us to his office. We got right to business, he started by asking how this all started, and then he wanted a detailed explanation of what doctors I had seen, what they said, and all of the test and procedures that I have had done. After all of that, he went through the diagnostic criteria for PNE or PN that is used in Nantes France and now by Prof Erdogru as well. I said yes to every symptom. It was undeniably clear that I suffer with the chronic and debilitating pain condition of PNE. He explained there was no need to do any further testing, or consultations with any more specialist. That was good news for two reasons, one, that freed up Monday for us, and two, that just saved us an additional $2000 dollars by not needing to repeat tests I had already done. He then moved onto explaining the surgery more in depth, but first started with the story of how he came to be one of the most sought after doctors for PNE. With my best attempt, I am going to share with you what we were told. As most people know he is a Urologist, and he has done thousands of surgeries, he prides himself on his work, but occasionally he would have a patient complaining of pain after what he thought should have been a successful surgery. He could not understand why? He knew he had done everything right but his patients were still suffering. He knew there was more to it. He remembers reading some literature about the pudendal nerve and it's branches while studying at the University, so he did a little more research and learned  more about the pudendal nerve. He wonders if decompressing this nerve is something he could attempt using the laparoscopic surgery that he already knew so well, testing his theory on a cadaver first, he learns he can in fact reach the pudendal nerve using laparoscopic instruments. He asks one of his patients in Turkey who was still suffering with pain, for permission to try, and she agrees. This was over two years ago, and she is still living pain free. Now, over the last couple of years he has pushed himself further and deeper into the pelvis along the pudendal nerve, he can now follow the nerve from the sacral roots all the way to the alcocks, and just a little bit beyond to the three nerve branches. He shared how one patient had underwent surgery and came out pain free, but six month's later her pain had returned due to scar tissue. He was explaining about this patient and her scar tissue problems to a group of surgeons at a conference at the beginning of this year. Another doctor suggested an omental flap (omentum is a special tissue/fat layer found only in our abdomen that protects our internal organs). He could use this tissue to protect the nerve from scar tissue by wrapping it around the nerve. He liked the idea, and this is now his technique. So far, he is very happy with the results. I loved that he shared his story, it showed how passionate he is about what he does, and how he is determined to have pain free patients. He went on to show us a video of the surgery on his laptop. He keeps a copy of all his surgeries stored for review later. While viewing the video he broke it down so we would have an idea of what this surgery entailed. We learned I will be his 31st patient to have this surgery, the second female, and third patient from the United States. He assured me that he takes his time in surgery as this is very delicate work, I know he will do all that he can for me. Prof. Erdogru suggested we get a hotel closer to the hospital to make post-op appointments more convenient, Pervin started working on that the minute we left his office.

     He then asked Pervin to take me to get my blood work done, and to go talk with the anesthesiologist for a brief history. Finally, our day at the hospital was over we could now head back to our hotel room. I was starting to get very sleepy, and on the ride back I fell asleep, according to my husband I missed one heck of an adventurous ride. (Maybe it was good I was asleep)

     My husband seen a Domino's pizza on the way to our hotel, he suggested we have some delivered to our hotel room. Okay, I could go for some pizza. (Ya, if we had only known.) For those of you that are familiar with Domino's Pizza we ordered the extravaganza, basically a combination pizza. This is when the line "Toto, I have a feeling were not in Kansas anymore" runs through my head. Turkey sure puts a whole new spin on Domino's Pizza, ready for this, I think it was sliced hot dogs or something similar and corn, along with some other things that looked familiar. I think it is going to be a long time before I order another Domino's Pizza. Yuck!
 

First 24 Hours in Turkey

    Memorial Hospital made arrangements through their International Marketing Department staff to pick us up from the airport and drive us to our hotel room. I was glad to have arrived earlier than planned, after landing we still needed our tourist visa in order to get through customs. This was a very long line and the process took some time. We then went and got our bags, I really hoped they would be there. When we checked our bags in at the Salt Lake airport, the lady at the check in counter said that a nine hour lay-over in New York was beyond the cut off for bag transfers, she had to write up special instructions to transfer our checked in luggage. I kept envisioning our bags going around, and around, on the luggage carousel at JFK unclaimed. I hoped the special instructions worked, luckily they did, and with bags in hands we were ready to go.

     My instructions from Memorial Hospital was someone would be at the airport waiting and holding up a sign with my name. We looked around and figured they must not be here yet since our plane arrived early. About ten minutes later my husband noticed my name, we waved to let them know we seen them and walked around to greet them. There was a male and a female, the male was the driver and the female had been assigned to me through the International Marketing Department from Memorial Hospital. Her name is Pervin, and she will assist me with all of my appointments and consultations, and during Surgery. She also will help us with anything else we need while in Turkey. She speaks English, and will be a big help as we get around in this new country. We loaded our luggage and we were off to the hotel. The drive to the hospital was a little intense, in Turkey they are not good with following the traffic laws, so everyone seems to do what they want, a little scary, but we made it in one piece, and never saw one accident on our 40 minute ride.

      Memorial Guest House is where we will be staying, it is affiliated with the hospital for patients and family members of patients. We will pay a nightly fee of 130 euros or 170 us dollars, a little on the high end, but we went with it for the convenience. My first impression of the hospital when walking in was, this is really nice, the hospital is very clean, and is set up very organized. Once checking in, Pervin gave us our instructions for the next day, and also her number just in case we needed anything. I was already laying down (whoa, on a very hard bed) during her instructions, I was so sleepy (I'd only had maybe two hours of sleep in the last 36 hours), I was out within seconds. 4 hours later I woke up and felt hungry, it is 4:30 pm in Turkey, Pervin told us there was a cafeteria in the lobby and that is where we could get something to eat.

     We first decide to call home and check in on the kids, it was early morning in Utah, and if we hurried we could talk with our kids before they left for school. We called our oldest son first, he was staying at a neighbors and friends house. Oops, we forgot there was no school for the middle school that day, he had to get woken up, and it was not a very productive phone call. We let him know we had made it to Turkey, and that we loved him, we then let him go so he could go back to sleep. We then called our house, we were able to talk to all of the kids except our three year old, he was still sleeping. We kept it short because they needed to get to school soon. Everyone seemed fine, and I felt relieved.

     Off to the cafeteria, I'm not sure what to expect, but here we go, our first adventure in the Turkey world all by ourselves.We get down to the lobby and we see a cafe, we are not sure if this is the same as the cafeteria Pervin had mentioned to us earlier, but we go in. At first we wondered if we seat ourselves or wait to be seated, we wait a few minutes and no one acknowledges us, so we walk up to the counter were they are preparing drinks and serving food and say "Hi". I knew not even one single word in the Turkish language, not even hello. They smile and said something in Turkish and gestured for someone to come over, he said "English" we say "yes," "come" he says and we follow. He sits us down and goes to get us an English menu. Okay, we can read things that make sense, good, I ordered a chicken burrito, and my husband gets a salad, we point to the menu to show him what we are saying, he nods and leaves towards the kitchen. He comes back to see if we needed anything to drink, I say "water", and he gave me a puzzled look, he says " uh, ice tea, cola," I shake my head no. My husband said "cola" someone standing near to us said something to him in Turkish, and he nodded and left. Me and my husband exchange smiles, now we are worried, what is he doing, and I think we were both wondering what food and drink was actually going to show up at the table. I could tell we had the staff on their toes, they were talking with one another with these smirks on there faces as they were preparing our order. Our server comes back with a can of coke and a bottled water, wow! I'm shocked, we got exactly what we needed. I asked pointing to the water "Turkish name," he gives me a puzzled look I say "how to say? what's this called? Turkish name?" while pointing at the water. The man standing near us says "su, called su" I hold up my water and say "su" he nods his head yes. There you have it, I have learned my first Turkish word su, it is water, now I only have a few more hundred to go. Our dinner is brought to the table and I am surprised, we got what we had asked for. My burrito was filled with grilled chicken, onions, and peppers green, red, and yellow, some carrots, and a couple of string green beans. It came with some tortilla chips and salsa, sour cream, and guacamole, Not bad. My husbands salad comes with no dressing, our server goes and gets two slender neck glass bottles and pours one with lemon and the other with oil on his salad for him. I think he would've preferred ranch, but we're pretty sure there is no ranch dressing in Turkey.

     We get back to our room, our room is very hot and uncomfortable. We play around with the thermostat to get it set on cool. We get out our laptops and check our emails and look in on Facebook, and I get started on a new post for my blog. We finally have wifi, it was nice to get connected back to the social media world. I see a private message from one of my neighbors, and she explains the mother of her neighbor across the street, suffers with PNE and she asked if she could share my blog with her, I say yes. I had just found a PN support group on Facebook just a little over a week before we were leaving for Turkey. I had never signed up to be on Facebook, but after I had put a post on the pudendal hope website about my surgery in Turkey, someone suggested joining the Facebook Support group. Mostly because they knew of someone in the US who had just recently went to Turkey for the same surgery. (Well all my friends who kept asking me to get on Facebook, I'm finally there.) I had to talk to this person, this was huge news, someone had already been, and I needed to know what her experience was like and how she was feeling. So, I join Facebook and look for PNE, there seemed to be a couple of groups, I look up this specific person name and ask to be her friend, and then I ask to join the PN support group. After being accepted to the group I seen there was over 200 people like me, I'm shocked, honestly I thought my condition was so rare, and it felt like I was the only one going through this. I wrote up my first message and just like that I am talking with people just like me. I am so thankful to have found this amazing group of people just a week prior to leaving. They are great supporters of what I am about to do, and they all wish me the best, and they are all praying for my recovery, and it means so much. Thanks all my PN friends. A week prior I was able to talk with the person who came to Turkey first, she had only good things to say and the best news, she is 95% recovered. I needed to hear her story and I needed the support of this PN group.

     We decide we should probably get to bed, it is about 1:30 in the morning, and we were still tired from all of our traveling. We turned out the lights and tried to get some sleep. I was having a hard time sleeping because one, the room is still very hot and uncomfortable, and two, the bed is extremely hard. For the first time since having this condition, I was having a hard time with my pain while lying down. At 2:30 we go out to the main desk and try to get help with cooling our room down. After a few strange looks and nodding of heads, he finally understood what we needed and came down to change the settings on the thermostat. By 4:00 am, I am still laying in bed awake, so I get up and grab the laptop. I get on to my Facebook page and notice I have a private message and it was sent just 3 minutes ago, It is my neighbors mother, and she also lives in Salt Lake. Now I have someone who lives only minutes away and I can hardly wait to meet her in person. We spent some time chatting back and forth and did a little comparison of our condition, and what doctors we had talked to. I am really looking forward to meeting with her, and I am really liking this Facebook thing, it couldn't have came at a better time. I never did sleep that night, I got up at seven and started to get ready for my appointment with Prof. Erdogru. Pervin was meeting us in the lobby at 9:00 am to help us get to my much anticipated appointment for that day.

Istanbul Here We Come

     We are finally on our way, I am feeling a little sad, the images of my kid's upset little faces won't leave my mind. I pray they sleep well, and wake up refreshed.

      I have never traveled outside of the United States before, I am feeling a little nervous and worried about how well I will tolerate the long flights ahead of us. Our flight leaves just before midnight and arrives in New York at 6:00 am, (4:00 am) Utah time, we hope we can get some sleep. After landing at JFK we have a 9 hour lay over, we are planning to go see a little bit of  New York during that time. The flight goes pretty well, considering... I am so thankful for the extra seat, I brought a couple pillows along in my carry-on and I can lay down with my knees bent up towards my chest. Although doing this creates a pulling sensation, as if my in-betweens are being stretched, it sure beats sitting. Unfortunately, I get very little sleep, my mind is full of too many thoughts. I arrive in New York, the hardest part about the flight is the last 20 minutes, while descending the rules of putting your seats up-right, and wearing your lap belts, forces me to sit in a position that is the most uncomfortable. It is only for a short time, and once I can stand, I feel great. When the nerve gets aggravated, my muscles around the nerve become very tight and irritated as well.  Getting off the plane, I  had no tight muscles, or stiff hips, and I avoided a flare in my in- betweens. One successful flight down, and one very long flight to go.

     It had been raining in New York, when we stepped outside it felt like we were getting sprayed by a very warm mist, it was very humid and smelly. My hair and humidity are the worst of enemies, I don't exactly know why, but unfortunately after only 10 minutes my hair had taken on a life of it's own. We were in New York earlier this year for a specialized MRI, it was in January and it was super cold, I think I like New York better cold. In January we were unable to get some of the things done we had hoped to do so, our plan was to go see some sites that I regretted missing.

     The plan was to go to Central Park, and visit the 9/11 Memorial Site. We were a little more comfortable this time getting around on New York's public transportation. After putting our carry on bags in a baggage storage facility, we purchased our round trip train tickets and metro card, and boarded the train for Penn. Station.  From Penn station you can catch several subway lines to get about anywhere in Manhattan. We arrived at Central Park just after 8:00 am, it was everything you imagine, with big trees, and very green landscape, full of bridges, and trails, and lakes, and fountains, with a ton of joggers, bikers, and people just strolling through. Central park runs along 5th avenue and Central park West, from 59th street to 110th street. We entered the park off 72nd street, my favorite sites were the Bethesda Terrace & Fountain, and The Minton Tile Ceiling, hopefully we can upload some pictures soon. We spent over two hours exploring the park. We covered maybe 3 miles or so of trails. I wish we had more time to spend but we needed to get down town for our 9/11 Memorial reservation. We ended our walk at 59th on the corner of Columbus Circle, we passed by the famous Tavern on the Green, and on the corner of Columbus was The Trump Towers. I love the "Apprentice" I could now see the solo walk from the front doors of  the hotel, to the waiting car parked on the street for the celebrity, just after receiving the famous line "your fired," and see the street that the car drives down as the celebrity makes their last remarks. It was so surreal, the streets are really very narrow and on TV it seems so much larger.

     We caught the subway at Columbus Circle and headed downtown. It seems everyone had the same idea, when we got off the subway and up to the street, there were people everywhere and we all seemed to be heading the same direction. We were a little early for our reservation, so we stepped inside a restaurant for a slice of New York style pizza, Yumm! We followed the arrows that directed us to the Memorial Site this went on for block after block, finally, we see the entrance. Oh wow, there were weaving rows of people probably about 50 rows deep, we felt a little worried that we might miss our flight if we got in line, but it seemed to be moving along, so we went to the back of the line. After a couple of security check points with metal detectors, and one hour later we were finally in  the 9/11 Memorial site. I think this site was laid out very well, I think it's a wonderful tribute to all the lives lost on that horrific day, and for loved ones and the survivors to have a place for reminiscing, and healing. I will also upload these pictures. Pictures really do not serve the purpose of the magnitude of this unbelievable site, it is really worth checking out for yourselves. We start to exit the 9/11 Memorial site and my husband realized he didn't have his backpack, panic sets in, we think about were we may have left it, it had his borrowed iPad in it. I told him I think you may have left it at the security check point. He runs over to a security officer and explained our situation, the officer radios the security check point and we learned it was left behind, and someone will bring it out to us. While we are waiting he explains how leaving a backpack laying around can raise alarm with the security, because they never know the possible contents. There are no bathrooms or garbage cans on the 9/11 Memorial site, specifically for security reasons, they really are doing their best to keep everyone safe. A security officer brings the back pack and before turning it over asks what items we had in it, when we said iPad he hadn't noticed that was in there, but the other items matched. Whew, So glad we realized, before walking out of the exit. We find our way to the subway and head back to Penn Station to catch the train back to JFK.

     I used our train ride to call and check-in at home before we left the country. My husband's mom said, when she got home from taking us to the airport, all of the kids were sound asleep, and they all got up and got to school just fine. I called my sister in-law she was going to have my three year old for the day, she said he was running around happy as could be. Good, now I can travel with peace of mind, everything seems fine back home.

     In New York everything is very fast paced, my problem is if I try and keep up with that pace, I become very sore and everything in-between becomes very irritated, I've learned I can't walk very fast or I end up in big flare. In New York everybody walks, and they walk fast, and when me and my husband are out walking,  and we watch much older people, and women in extremely high heeled shoes passing us by, it's a little bit of a reality check for this debilitating condition. It is very hard to keep up with this city, and one day I plan on returning with my kids, and I pray I will fit in with the busy streets of  New York. Thanks to my husband for being so patient, it's probably very frustrating walking from place to place at my slow pace.

     I am on my first international flight ever, the reality sets in, we are really doing this, we will arrive in Turkey in 10 or so hours. I'm not sure what to expect, but I know one thing we are in for some major culture shock. The airplanes are much larger, and the seats offer more room, I am still thankful for our extra seat, I get through the first hour tipped on my hip, I'm starting to get pretty uncomfortable so I take my medications that were prescribed to me before leaving, and lay down, within minutes I am fast asleep. I was pretty disappointed after waking up that only a hour and half had gone by, I was hoping to sleep most of the flight, especially since I didn't get any sleep the night before. I pulled out the nook, I thought I could check in on Facebook. Then we learned that Delta doesn't offer WiFi on international flights, but will start in January, Bummer! So I pull a book out and start reading. The flight went well with the help of medication, the extra seat, and my husband's lap, I was able to keep my pain levels from spiking. Good news, the flight attendant announced our flight was running ahead of schedule by a whole hour, that is one less hour of feeling confined. I was so excited that traveling was almost behind us, and that I managed the pain fairly well, so much better than I had anticipated. However, I had gotten very little sleep, I  thought  sleeping wouldn't be an issue, especially since we were traveling in the night. I think I only slept for around three hours over the last 48 hours. I was very exhausted by the time we finally touched ground in Istanbul.

Saying Goodbye

      On September 7th we confirmed, with Prof. Erdogru's (er-dō-rü)  assistant, the dates for my consultations and surgery. We had just under one month to make all the necessary arrangements before leaving the country. I had already received my passport, but was still waiting on my husband's to arrive. There was so much to do in preparation for our trip to Turkey.

      Most important was our flights, this turned out to be a very long and frustrating process (12 hrs. to be exact) 6 hours the first day, and six the next. The issue being, the extra seat needed for traveling more comfortably made everything very complicated. We first tried to book our flights through a third party, in trying to keep the fares low. Nope, not happening, the extra seat must have a name, but you can not duplicate a name or make one up. After a couple of emails, and a couple of phone calls to customer service, and four hours of trying to make this kind of arrangement work, (all for a great price) it couldn't be done. On to plan B, only there was no plan B, our only option was to book directly through the airline, but fares are much higher going this route. We soon learned purchasing an extra seat online, directly from the airline, could not be done as well. We needed to call customer service, and talk with a live person for setting up this type of flight arrangement. Well long story short, 2 purchases and 2 cancellation's later we finally got someone on the phone that knew what they were doing. When she learned we had originally booked with the third party, and than later canceled the reservation, because of an extra seat that I needed for medical reasons, and that they were unable to assign to me, she was willing to help. She asked us for the flight numbers and she was able to get us the same flights for the same low fare. This was the one advantage of booking directly from customer service, the flight reservation was complete. I double checked to make sure all three seats were next to each other, she put me on hold so she could go back and check...seriously! What's the point of buying an extra seat if it's in some random place on the plane, and I am unable to utilize it. One more hour later she finally had our flights booked with all three seats together. Total cost for three round trip ticket to Istanbul Turkey, just under $3,000. Lesson learned, never buy an extra seat, especially when traveling internationally. If you have to, just be prepared for a very long process. Honestly though, we didn't feel like we were asking for something so out of the norm, surely, airlines have to deal with this fairly often, I didn't understand why this had to be so difficult. Very annoying!

     After purchasing our airline tickets the realization of this trip hit me, everything was final...this is really happening! I was overwhelmed with a deep sense of relief for the first time in months. I couldn't believe that I was heading down the road of end all, and that road was Turkey. We knew the news of this would cause a lot of questions and explaining among our family and friends, this is how my blog came to be. We needed a place to share my story and somewhere for our friends and family to stay updated as we traveled to the other side of the world for this first and only of its kind surgery.

     My husband got to work, for any of you that know my husband, he is the tech support for me and our kids, and anybody else who is in need. He knew in order for any of our laptops, iPad, nook, phone chargers, and curling iron (hey, that's important too) to work we would need converters. He made sure to get these ordered before we left so that we had them available when we arrived in Turkey.

      Now, on to everything on the home front. There was still a lot of preparation involved in making sure everything ran smoothly while away in Turkey. We worked for a couple of days on detailed calendars, to do list, contact info, medical releases, scheduling who would be where and at which house on what days, and which caregivers would be at our home on other days, notifying the children's teachers, getting them all haircuts, scheduling orthodontist appointment's for routine adjustments, and talking with the kids about what we needed and expected from them while we were away. I think the kids were pretty much set and were on board with our plan. I know they are in good hands. We are going to be away for 16 days, and I have five kids, this was going to take a village to help get everyone's needs taken care of. No worries though, I have great family, and great friends, and some of the most amazing neighbors, I didn't know it at first, but I already had my own personal village ready to step in and take over all of the responsibilities I was leaving behind. We are so blessed to be surrounded by such amazing people. I was overwhelmed by the out pouring of  how can we help, or I'd like to help with this or that. Thank you to all who have a helping hand in this journey of healing and recovery, without you this wouldn't have been possible.

     The night before leaving, my husband had arranged for our bishop to come by for a blessing. In the blessing, I was reminded of the promises that I had received in a previous blessing just over a year ago. Although I had not forgotten the words spoken to me that particular night, it was comforting to know those promises still hold true, and I know one day I will no longer have to carry this burden anymore.

     After a couple of short weeks, the 3rd of October was finally here. Tensions were running high, all of the hard work and planning that had led up to this day was just hours away from being implemented. The kids all knew this would be our last day together and some of them seemed a little anxious and overly emotional. So when grandma showed up, because she was the one staying the night with my kids and also taking us to the airport, my three year old quickly became sad. He said "you go to Turkey now?" with teary eyes, and a pouty lip. I didn't want to say what needed to be said, because I knew what would follow, I hesitantly replied "yes" and quickly tried to reassure him that grandma was going to stay with him while we were away and that everything will be okay. It was too late, the melt down had already began, he clung to me and cried "I don't want you to go" he screamed this over, and over...and over again. This got my twelve-year-old daughter's attention, she came to me with tears in her eyes and said, "are you leaving now?" Her tears really surprised me, I didn't expect this goodbye to be so difficult. Her tears than snowballed, my three year old started wailing louder, and now my seven and nine year old were joining in. I wasn't at all prepared for this, I had no idea this would be so hard on my kids. Me and my husband have left them before, it's not like this was the first time. I realized they must be nervous for us, we had never left for so long, and usually we are leaving on better terms than for a surgery, in a different country none the less. And well, let's face it, the last time I had surgery it turned their whole world up-side down and we are still trying to put those pieces back together. Now the guilt sets in, I can't help it, it's just there. I pray this is all worth it, because walking out the door that night was one of the hardest things I have ever had to do.

Why Istanbul Turkery For Pudendal Nerve Decompression surgery? Q & A's

     The journey has officially began... the next few posts will be all about our travels to Turkey, doctor consultations, the actual surgery, and the recovery. I will put the back story on pause for a little bit, and hope to continue in sharing my entire story when everything settles down. For now, on with the new and hopefully life changing adventure we are about to embark on.

 I figured there may be a lot of questions that I haven't had a chance to post about yet. So, here we go.


What's wrong?

     Immediately after having a "routine" pelvic surgery (a hysterectomy, plus a rectocele and cystocele repair) in Feb. 2011, I felt significant pain in my pelvic area, way beyond the typical surgical pain. The pain in my pelvis is constant and has literally turned my whole life upside down. When standing I have learned how to manage or tolerate the pain, but standing is limited. Laying down offers the most relief and the use of  lots of ice, but I have five kids and a house that doesn't stop just because I have pain. The pain is much worse when I sit because it puts additional pressure on the damaged or entrapped nerve. Since the surgery, I have not been able to sit longer than 10-15 minutes at a time before it begins to really hurt, I can usually tolerate around 30 or 40 minutes of sitting before needing to stand. This condition is called by several different names but is most often referred to as PNE (Pudendal Nerve Entrapment) or PN (Pudendal Neuralgia). PNE is a rare nerve condition, the chronic and debilitating pain has been quite devastating for me and my family. PNE has taken many of life's simple pleasure away from me, it's really hard to enjoy life when most of the day is spent in bed. Having severe pain in the most sensual and private area of  my body has been extremely difficult and painfully heartbreaking.


Why surgery?

     After traveling to three of the five different specialist in the United States for consultations. It was suggested by all three, that surgery would be the best option for pain relief.


Why would surgery be the best option?

     Basically, since surgery was the onset of my condition with PNE, surgery would be the only chance of fixing whatever it was that went wrong.

What went wrong?

     Nobody knows exactly for sure, but some ideas that were shared throughout our travels in the US are... possibly the nerve or nerve branch was caught in the suture during the repair, or the nerve or nerve branch was nicked or even possibly cut in surgery. The nerve or one of the nerve branches may have been over stretched while performing the rectocele repair and now scar tissue has entrapped the nerve, or something else. There really is not a way to know for sure until they open me up and physically see what's wrong. The nerve bundle is to small to be seen on any type of imaging, but I have had a couple of MRI's to look at the tissues surrounding the nerve bundle.


What conservative treatments and procedures did I try prior to considering this particular surgery?

     Trigger point injections, 5 month of pelvic floor physical therapy, 10 month's of a variety of prescription drugs (Neurontin, Lyrica, Effexor, and Baclofen/Valium suppositories), three pudendal nerve blocks, Tens, and Calmare pain therapy.


Why aren't you staying in the U.S. for surgery?

     A couple of factors, first, I wasn't comfortable with the open surgery approach that was offered. In order to reach the pudendal nerve bundle that lies deep inside the pelvis, it requires the dissection or separation of the sacrotuberous ligament (a ligament that anchors the sacrum in the pelvis from the hips, this ligament is on each side, it connects with surrounding tissue around the hips and hamstrings)  This in itself creates other complications for recovery for many patients. I need my right and left side done, so this was a huge concern for recovery. It takes time to begin walking again, I was to avoid climbing stairs or inclines and no bending for about 4 months. I have five children, it seemed extremely complicated to be much of a mother in this type of a situation.
     On the nerve end of things, it was not guaranteed for a complete fix, in fact I had a one in three shot that there would be any improvement greater then 60%, not great odds. If the nerve was decompressed successfully and it didn't suffer any permanent damages, I would probably have up to a 80% improvement, this meant I would still have to avoid anything that aggravated it, and still follow some type of medicine regimen for nerve pain. The nerve takes 18-24 months for a complete recovery, that's how long I would have to wait before knowing how successful the surgery was. Nerves can repair themselves, but it is a very slow process.
Insurance was another big factor, my insurance would not cover this surgery. Aetna considers this type of surgery for the pudendal nerve experimental and investigational, there is still not enough science supporting the benefits for this type of surgery for the patient. My cost without insurance $50k-$60k. That's an awful lot of money for something that's not guaranteed, and a very long road for recovery. This was the best the US could offer.


Why Turkey?

     Since Surgery seemed unlikely, I started to work with a pain doctor at a pain clinic. His plan was to try a series of pudendal nerve blocks, and if that didn't offer any relief, (which it didn't) he thought that surgically implanting a pain pump would be my best option. Okay, so I admit, no pain sounded nice, however this type of treatment can have some terrible side effects, and it is not a permanent fix for my problem, only a band-aid to help with managing the pain.
     It had been about five month's since I had done any research, and I thought before I truly consider implanting a pain pump, I should look up surgery options for my condition one more time. I googled pudendal nerve entrapment decompression surgery, and began scrolling through the list of options. I seen the word robotic surgery and laparoscopic in the same line as nerve decompression, "What! Is this for real?" I felt all the tiny hairs on my body rise, with curiosity I quickly clicked on the link. My eyes were not lying, there really was such an option. I read through the article and with out any thought or hesitation, I began filling out the application at the bottom of the page to receive more information.
     When I woke up the next morning I had a message in my inbox from Turkey, one of the first things that stood out to me was the cost of surgery, 10 thousand US dollars for laparoscopic and an additional 5 thousand for the Davinci robotic surgical assist. I got teary eyed and called my husband at work with the exciting news. We decided we needed more information, I sent off several questions and a brief history. The doctor replied back to let me know he would be able to help me. Finally a solution to my problem that seemed reasonable and made sense to me. I know this is not a cure for PNE. I will still have to avoid anything that aggravates the nerve after surgery, but the idea of my pain being decreased by 50% or more brings tears to my eyes. The less invasive surgical approach will make my recovery easier for me and my family.
Without any doubt I knew this is what I needed to do! Next step, I needed a passport. I went to the post office that day to apply and start the process.


How will I sit on an airplane for that long?

     Earlier this year, when we traveled back east to meet with one of the specialist, my doctor prescribed some medicine to help take the edge off and relax me a little. I am hoping my doctor will do the same. However, we will be traveling over 7,000 miles, and I worry the medication will not be enough for the twenty four hours of traveling we'll be doing, so we thought purchasing an extra seat for me would be best. This way I could sit tipped in order to shift my weight onto my hip and elbow (without invading someone else's personal space) or even lay down to take the pressure off.


What are the success rates with the surgery in Turkey?

     Prof. Tibet Erdogru (er-dō-rü) is a urologist in Istanbul Turkey, he is considered to be the worlds second best urologist.  He has been helping people with PNE for almost two years. In those two years he has done 30 or so PNE laparoscopic decompression surgeries, and of those 30 or so, only one person did not get the results she was hoping for. On his website he explains, any surgery with a 50% improvement (as in 50%  reduction of pain) is considered a successful surgery, most of his patients are in the 65-80% range, with the last few even having results of a 95% improvement.


Why now?

     I have been dealing with this condition for the last 20 months, why would I go any longer like this? I'm ready for some relief, (like yesterday!) There were several discussions about when it would be best to have the surgery, and to be honest, there was no good time. I thought if I had the surgery now, I might be able to put my life back together a tiny bit before Christmas.


Why do I have to be gone for two weeks?

     I wish it was shorter. Unfortunately, even the laparoscopic procedure requires some recovery. In order for the doctor to be comfortable with sending me home on a 13 hour flight, where sitting is mandatory, he wanted me to stay 10 days following the procedure to make sure everything is healing as it should. Although, leaving the country was even better than the 3 weeks we were looking at if we had chosen to have the more invasive procedure done in New Hampshire.


What's the plan?

     We leave late on the 3rd of October. We will arrive in Istanbul on the 5th, my first consultation with Prof. Erdogru will be on the 6th, and I will meet with some other specialist on the 8th. A gynecologist, neurologist, and pain specialist. Surgery is scheduled for Oct. 9th at 9:00 am I will then stay in the hospital for two or three days, and will have to remain in Turkey an additional week for post-op appointments. We will be home on the 19th, hopefully all will be a success and I can move forward.


     I hope this information helps... in understanding why we have gone to such great lengths in finding a way to regain one of life's most simplest pleasures of sitting again, and enjoying all the things that were suddenly taken away from me, versus a life stuck in bed suffering in pain as life continues to moves on without me.