Health Organization for Pudendal Education

Hi all, haven't posted up for a while, let me explain my reasons. I have recently had decompression surgery in London, carried out by Professor Carlstedt, but I wanted to wait until I felt well enough before posting.

I can actually claim to have beaten NervyJoe as far as the time from initial symptoms to surgery. My symptoms started in July 2010, pain while sitting, sharp stinging sensation and feeling of something being inside my rectum. Slight penile pain also and frequency of urination. Commenced my workup in August 2010 and eventually had my Nerve Blocks carried out by Dr. Baranowski in London. He diagnosed me as having bilateral PN, don't ask me how, because I got no relief from the injections but I was convinced that my problem was PN anyway. I had one simple aim in mind, namely to have surgery at the earliest opportunity and so I pushed for it and thankfully Prof. C. agreed to operate. Not in any way saying this is the right thing to do for everyone, but it was for me.

I had the first surgery on March 22nd, on the right side which I felt was the worst in terms of pain. When Prof. C. came to see me after the op he said that the nerve was badly entrapped, and in fact flattened. He couldn't believe that the symptoms had not started much earlier. I had the second surgery two weeks later on the left side, and whilst the nerve was trapped, it was not as bad as the right hand side.

The reason I have not posted earlier is that to be truthful I didn't want to come on sounding negative as I was in a great deal of pain and at times thought that I had made matters worse. Then just over a week ago, I woke in the night with a feeling of electric shocks in the right hand buttock shooting down to my thigh. This lasted for about half an hour with intermittent 'shocks' then I fell asleep again. The following two days were pretty miserable with more 'shocks', it got to the point where I was living in dread of the next one. Then I got a series of them one after the other, about 16, and then they stopped, thank goodness. I now understand that this was a good thing as I'm led to believe it was an indication of the nerve starting to regenerate itself. So far I haven't had any on the left side, but that was less affected anyway.

Now, whilst this might sound a bit onerous for anyone having surgery (sorry NJ) I can now say that for the last three days I have had a considerable reduction in the pain, and in fact I had one day which was totally painfree, bliss! Just one thing to add here, I am a bit of a fool to myself as I really don't like taking meds and tend to suffer on. Since the surgery I have only taken two Tramadol tabs, and that was when the pain was at a limit I felt I could not endure, other than that I have taken nothing. I was told to take Cocodamol by the Anaesthetist if I needed to, but was not prescribed anything. My advice to others would be to take the meds for the first few weeks, the Tramadol certainly helped me. I just have this fear (maybe irrational) of becoming dependent on them.

Went out to my Son's house last night for the evening, felt good, not painfree but so much better, and it's very early days. I'm off out to dinner at my daughter's house tonight, and so looking forward to it.

So, I am feeling very positive right now, I hope I continue to improve, and above all, I hope this gives encouragement to anyone who needs it.

Life is like a grindstone, it will either polish you up or grind you down, depending on what you are made of!

Good luck NervyJoe, be thinking of you tomorrow.

John

Glad to hear that things have settled down. I'll pray for your continued recovery.

Thankyou nyt.

Hi John!
I've been wondering where you've been. Congrats on making it through surgery! I'm recovering from bilateral surgery, too. Pretty rough, huh? I'm curious about the surgical approach you had done, and why you didn't get both sides done at once?
I understand how you feel about the meds, I only took the dilaudid for a few days after getting out the hospital and have been med-free since. For me, I'm not concerned about addiction; I'm concerned about how the meds make me feel worse. I'm doing just fine without them.
I sincerely wish you the best with recovery. I've found the hardest part of all is having patience. This isn't a quick fix. But every day is one day closer to recovery!
Warmest regards,
Karyn

Hi John,
Wish you all the BEST with your recovery !
M

Hi John,
I wish you a speedy recovery.I just would like to add some additional questions that Mulan asked in her previous email.Did he sever both your Sacrotuberous and Sacrospinous ligamanets and if did what guarantee did he give you that you won't develop any Pelvic Instability i.e Piriformis muscle syndrome,SIJD,tailbone pain after the surgery.What is the success rate for a cure did your surgeon gave you?

Kind Regards,
Ali

John,

Thank you for posting your story! I wish you the best of success and FULL healing!

I also am wondering what is Prof. C's surgical approach and who taught him? The Nantes team?

Warm wishes,

A's Mommy

Hi John,
Yes you really did get a move on didn't you! ! ! well done and every good wish for a sucessful and FULL recovery.
Prof C seems to always do the bi lateral case surgeries separately, Romaine had the same from him last year. That must have been a difficult thing to decide to do when you were unconvinced that the 1st one had worked at that stage but then in for a penny etc. . . . Did you go through your medical insurance btw?
I have been referred on to Mr Jason Web for my surgery but that will be piriformis (he is a hip guy) and if the PN is still a problem (fingers crossed he can sort it all out) I can tackle that later maybe. Haven't met him yet so it's all up in the air still at the moment and of course because it is NHS it will probably be up there for some time yet. My BUPA went the journey when I was made redundant .
I can relate to those dreadful electric shocks AARGH!. . . I get 1 -10 sciatic zaps daily which are not too much problem, nasty but quickly over, BUT have had some 'episodes' one lasting 3 1/2 hours being zapped every 3 -5 mins. Like you thought it will never end, just about to go to A & E then thankfully it stops. Maybe thats a good sign for me too as my nerves are obviously still (mal) functioning.
Thanks for posting John, keep in touch. I wish you the very, very best of luck.
Take care,
Helen

Firstly, thankyou for the warm wishes, I do appreciate them.

I understand of course that there will be a number of questions raised as a result of my post and I will try to answer as many as possible given my limited knowledge of medical terms. As far as Professor Thomas Carlstedt is concerned, I selected him to do my surgery having initially got his name from this site and then going to see him for a consultation prior to having any Nerve Blocks. I did 'Google' him before going to see him and was encouraged by what I read -

I graduated from the Karolinska Institute in Stockholm in 1979 with a basic medical degree - MD and a research degree-PhD. Following a "post doc" year in Montreal I returned to the Karolinska Institute to become an Assistant Professor. After completing surgical training in Stockholm and Paris, I specialised in Nerve and Plexus surgery, I was made an Associate Professor of Surgery in 1988 and then Head of the Division of Neuro-Orthopaedics at the Karolinska Hospital. I founded a Swedish National Centre for complicated nerve injuries.

I was recruited as a Consultant Orthopaedic Nerve Surgeon to the Royal National Orthopaedic Hospital, Stanmore in London 1996. I was awarded a visiting Professorship at Imperial College of Science, Technology and Medicine in 2002 and 2003 a Professorship in Nerve Surgery from University College London. In 2006 I became a Professor of Hand Surgery at the Karolinska Institute.

I have 20 years of experience as a consultant. I am a leading and internationally renowned surgeon and basic scientist that has pioneered and developed surgical treatments of complicated nerve disorders such as brachial and lumbosacral plexus . I treat severe,complicated nerve lesions and conditions.

Activity
My main activities include nerve and plexus trauma, tumours as well as entrapment disorders of nerves. I also do hand surgery.

I direct a National Centre for the surgical treatment of complicated nerve injuries including nerve plexus and associated spinal cord injuries.

I have devoted the last 30 years to basic and clinical researches to solve and develop successful methods to repair spinal cord injuries associated with nerve plexus trauma.

I am an active member of the Clinical Research Initiative supported by Spinal research

I have produced 12 Chapters in books, 9 Review articles and 73 peer review articles in international highly rated clinical and basic science journals. I have written one book on a surgical technique that restores function after a type of spinal cord injury. I am a reviewer for several international scientific journals.

Professor C. referred me to Dr. Andrew Baranowski for investigation and Nerve Blocks, following which he agreed the surgery.

Regarding the procedure, this is an excerpt from the report he sent to my Insurance Company, which explains it far better than I can.
In prone position, an oblique skin incision is made in the upper medial aspect of the right buttock. After a transgluteal approach the sacral-tuberal ligament is defined and incised. Deep to the sacral-tuberal ligament the Pudendal Neurovascular bundle is defined in the fat pad. There is obvious scarring and remnants of cortisone from previous injections. The nerve appears flattened and is carefully dissected free from the vessels to which it is firmly adhered. The sacrospinous ligament which is deep to the neurovascular bundle is cut and the nerve is followed into Alcock's Canal. After the nerve has been carefully and totally dissected free and after haemostasis the wound is closed.

This hopefully answers Ali's question regarding the cutting of the ligaments. Professor Carlstedt did not mention the risks of pelvic instability or tailbone pain. When signing the consent form he quoted the risks of infection, bleeding and also the possibility of no improvement following surgery. He would not give any guarantees, saying that patients respond differently to surgery, but he did say to me after the operation that he was hopeful that I would get at least a significant reduction in the pain. He also told me I would have to be patient as it would be several months before I would know the extent of any improvement.

I was not prescribed any meds, although Prof. C. was aware that I had a plentiful supply of Tramadol. I was told to take things easy but to be as mobile as possible without overdoing it and to 'listen to my body'.

A's Mommy, I am not aware that Prof. C. had any training from the Nantes team, but when I see him in July I will ask him. I will also ask why he doesn't do both sides at the same time, but I do remember his PA saying that he prefers not to as it is very delicate work, requiring enormous concentration, and just one side would take at least two hours. I guess I can understand that, and frankly I would rather he was at his best when operating on me.

So, there we are folks, all I can give you at the moment. Karyn, it is tough at this time as you know, but we will get through it, good luck to you and to everyone having surgery. I'm hoping NervyJoe is doing well.

Kind regards,

John

Helen, so sorry, I forgot to answer your question regarding Insurance. Yes, I had it done via my Insurance, but it was a close-run thing as I retired at the end of April and my Insurance ended, (another reason for pushing like mad, and Prof. C. was very understanding in that regard). I have spoken to Romaine a few times, she has been very helpful to me with advice from her experiences.

Actually, whilst on the subject of people being helpful to me, I really want to say how great Nara (from this site) has been, we have had many telephone conversations, helping each other through the difficult times. Nara, you are a star, and I really hope you will get the recovery you so richly deserve.

Katherine (kath) is another member who has been very helpful by giving me lots of information which she has gathered, kath if you read this, I'll phone soon, hope the first block went well.

Regards,

John