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.