Health Organization for Pudendal Education

After more than 5 years it has been recognised on a local level that I do have PELVIC nerve 'entrapment's,' after a revealing sciatic nerve conduction test, rather than any spinal issue, as my lumbar MRI was fine . . . . . well, that is the only reason I can possibly think of for such a lack of treatment , or NHS referral up till now.

This new situation is totally due to my magnificent, local pain consultant, Dr Joanne Parkins, who took Dr Greenslade's (Filler's and Jenner's) diagnosis of sciatic, pudendal, post femoral cutaneous and cluneal neuralgia at piriformis level on board and sent me for these further tests as I was getting no where at all.
This 'rare' diagnosis is the only one to make any sense of my symptoms so at least it was proved, giving me a total of 4 concurring pelvic neuralgia diagnoses (I'm just greedy that way!)
From this I have seen an orthopedic surgeon (local) who has offered me pelvic, sciatic nerve decompression. He said that the pudendal nerve is too deep to decompress.
It will be uni lateral and transgluteal. He will cut my piriformis muscle and neurowrap the sciatic nerve if I agree to the op.
It is scheduled for September 27th
I still need to ask the question about how many pelvic nerve decompression surgeries has this guy done so far. . . but I expect the answer is none.
I am breaking all of the advice 'rules' that I give others by saying yes (so far) and would like to know what others think. Would they go ahead with only the sciatic decompression? Knowing that this will be it, it's not a first stage, it is the only stage.
Helen

Wow, Helen. That's a huge step to take. Is there any chance you can go to someone who has experience. I hate for you to lose this opportunity but on the other hand after being on the forum with you this long I am a bit fond of you and I would hate to see this botched.

Violet

Hi Helen

Have you got another appointment scheduled with Either consultant to be able to ask further questions ?

Wishing you well

Rosemary x

Hi Helen,

Would it be possible to discuss this with Dr G. perhaps a telephone consultation. This is the only petson in the UK other than Dr B with whom you,ve had no contact, that might be able to give you an informed, intelligeent response.

Regards Molly

HI Helen,

You have given others wonderful advice time and time again. I wish you the best if you do decide to have the surgery. And I would definitely want to know how many surgeries he has done in the past and the outcomes (if possible).
All the best,
Rea

Sorry for no good advice when you finally ask! I think the others covered it though. I do wish you the very best, now that you finally have a diagnosis it would be great to have a fix. It is never a simple decision but I know you will make the best with what you know, that is all we can do. Take Care.
Janet

WOW! thanks for your responses
Yes I do need to ask the question re any similar surgeries before. . . .I almost don't want to as I have a feeling the answer will be none, but I will ring and ask his secretary.
As my problem is that my nerves are stuck in scar tissue created by a haematoma in my piriformis muscle and he is going to cut that muscle ( but where?) and decompress the sciatic nerve from the 'mess' in there, what will happen to the other nerves that will remain stuck?
If he only cuts one side of the muscle will the 'mess' ping across to the uncut side, as the muscle is in spasm? making the rest of the nerve pain possibly worse although I'm sure that is too simplistic I still need to know where that muscle will be cut.
I'm fairly sure that Paulette and Ellie have had this muscle cut and haven't had an issue with it in particular, although they both do still have problems; but I am less worried about this part of the scenario than I was.
Asking Dr Greenslade is a very good plan, He was at the last pelvic pain workshop and if I'd known that this may be on offer then, I could have asked him. . . hey ho! so I will write instead, although my letters have taken an absolute age to answer in the past, I will ring them/him. He has also observed pelvic decompression surgery first hand so is the best one qualified to answer.
The best (well only) team in the UK offering pelvic decompression surgery, are the Bristol team and Dr Greenslade Violet. I have already been told that they will only tackle a Pudendal decompression and if there are any more nerves involved they advise going to Nantes. I have already found that there is no NHS chance of this.
Hmmm, decisions decisions!
Thank you all so much again, lovely ladies.

Helen x

Oh my goodness Helen - what a decision. I have not been on here very much for a while - we've been away, very dodgy internet access, and it isn't so brilliant now - what can I say.

I would go for it. It is, after all, this or nothing at all. But yes, I would also want to try to talk with Dr G. I do hope that you can get through to him.

Thanks girls,

I have GOT to say that getting responses to an actual question,Is SO wonderful I usually don't ask, I guess.
Lots to consider but thanks again
xxx

Helen
Hmmm! Thought carefully over my response ! If? And I have in the past been offered a chance ( albeit a small one) of release from this , sometimes torturous pain I would grasp it) now after awfull failed surjurys, I would stand well out(of the box) so to speak! And in your own words?? Examine the risks against the gains? No one could blame you for"grasping the nettle" but you have obviously gained many friends here, and I would go totally with them on this one! It does take bravery to ask questions when you almost fear the answers! Don't risk yourself if you feel in your gut that your man is just pioneering this surjury? In your heart you will find your answer!
Good look Helen keep us posted
Anne