Surgery with Dr Azsmann

[Earl]

Ive read in Dr Hibners surgery information packet that one of the causes of pudendal neuralgia can be from a spinal abnormality. How can the pudendal nerve, which originates from branches of S2 and S3 ,be affected by vertabra S1 and above? I have definite problems with L3-4-5-S1 though not severe enough to cause pudendal nerve distribution pain according to some, but not all, of the neurosurgeons I've seen. Is it not true that to cause pudendal nerve pain from spondilolisthesis of L5-S1 it would have to be severe enough to disrupt the course of the whole nerve bundle going below to S2-S3? Dr Hibner did not look at my MRI of the lumbar spine . Has anyone else answers for some of these questions? Maybe I should show my newest MRI to another neuro surgeon first ?? I'm tired of their 'maybes' ,'not sure' and even one' let's fuse all 4 together(L3-S1).
Please excuse my essay .Any input would be appreciated. Thank you! Earl

[helenlegs 11]

This is a question I would definitely like to be answered properly too Earl.
I would say, in my no medical training whatsoever way, that there HAS to be a problem at S2, 3 or 4 to have actual pudendal neuralgia and therefore S1 or above won't do it.
There is cauda equina too of course but you do have to have a massively centrally herniated disc or something that shows on MRI for that.
I have also had a problem at S1/L5 and have had a micro discectomy at that level (shave the disc so there is no more nerve impingement)
It worked a treat! The local Dr's, including my own GP can NOT get past the idea that my lumbar spine and former, resolved problem is the issue now too and nothing to do with my pelvis. It irritates the hell out of me!!
I'm not saying that a back problem can never be responsible for PN pain as I'm sure that pain 'wind up' can occur. Some people may have spinal pain and guard against it, hold themselves differently, cause other muscles to overwork and therefore irritate other nerves. Some people may have an already tight pelvic floor and an additional spinal problem could be the tipping point to PN. This would always be a secondary problem tho' and I have to say that I have had a herniated disc in the past and know that the pain from that is very different to pelvic entrapments. Yes there can be similarities if you have sciatic entrapment, pain distribution wise, whether the problem is in the lumbar spine or the pelvis but there are many different and particular problems too. However the pudendal nerve has a specific area of innervation and is definitely served from S2 and below (I read somewhere it is mainly S3, but could not swear down to that as fact)
Even though I've had a scan (MRN) that shows pudendal neuralgia, I have a diagnosis for nerve pelvic entrapments at piriformis level from an expert and I have NO nerve impingement in my spine, I am still lumbered with the 'well it's your back problem again' with local medics!!!
I really wish some one medically would get to grips with this properly.
What would others say please.
Helen

[Earl]

Thanks Helen,
You having had spinal issues too understand the predicament . I often do have pretty severe low back pain but with the posture I now have ,do to never sitting or exercising, its no wonder. Neurosurgeons say the only repair of my spine is fusion because of it moving around . I will tackle that problem if I have too later on. A lumbar CT , 2 MRIs and 2 bending X-rays (to show movement ) don't reveal the eminent need for surgery. My pain being sit pain between my legs where the pudendal nerves are and penile numbness seems fairly clear I need a PN surgeon. I'm not sure if the spinal fusion surgery is less of a surgery than the pudendal TG surgery anyway. You've added more clarity that I'm not too far off base in my diagnosis . Thanks,
Earl

[Violet M]

Earl, my understanding is that you can have a spinal radiculopathy that causes symptoms similar to pudendal neuralgia. Also, I have heard of variations in pudendal sacral root anatomy. Here is one article that discusses variations. http://www.ncbi.nlm.nih.gov/pubmed/9257309
The fact that you have increased genital pain with sitting seems significant though. What about on pelvic floor exam when the PN is pressed along the course of the nerve?

Violet

[Earl]

Internal exams are painful and my sit pain is very pronounced. I sit absolutely zero.i Also have the other hallmarks of PN ,not awakened at night with pain, the numbness issue , and the specific location of pain where the pudendal nerve is located. I am going to look at that link you sent me though. After seeing 4 neurosurgeons only one thought my spine could contribute to my pain and he seemed doubtful it had anything to do with the numbness. Earl

[Karyn]

Hi Earl,
I can relate to your frustration. By no means am I an expert in this area and can only offer my personal opinions on spinal pathology and sacral nerve roots.
When one has a "lower lumbar MRI", they usually cover L1 - S1. Occasionally, they'll pick up a portion of the thorasic area. Very rarely, anything below S1 is studied. What I've been hearing from neurologist, physiatrists, etc .. is that the sacrum is a fused structure, with no chance of a bulging, herniated disc impinging on nerves. I was even told by the last physiatrist I saw the "sacral nerves don't do anything". When he noticed me peeling my eyebrows off the top of my head, he quickly added, "oh, except for the pudendal nerve". I'm not sure if this is the general concensus of the medical community, but it sure does seem that way. As you probably know from visiting with spinal surgeons, their work stops at S1. It appears the sacrum is grossly overlooked and under treated.

Even though I've had a scan (MRN) that shows pudendal neuralgia, I have a diagnosis for nerve pelvic entrapments at piriformis level from an expert and I have NO nerve impingement in my spine, I am still lumbered with the 'well it's your back problem again' with local medics!!!

Good point, Helen. I also have severe sciatic nerve symptoms, but haven't had an MRN. Therefore, sciatica has been been dismissed by my doctors because imaging of the
lower lumbar spine doesn't show an impingement at the level of the spine. No consideration that the impingement could be coming from somewhere AWAY from the spine, such as at the level of the piriformis, the sciatic notch, etc....

If there's one thing I do know for sure it's that we all have issues with nerves coming from the sacrum. Not necessarily from "the roots" themselves, but that's where they trace back to!
Kind regards,
Karyn

[helenlegs 11]

As you probably know from visiting with spinal surgeons, their work stops at S1. It appears the sacrum is grossly overlooked and under treated.

I do think that this is the main issue Karyn and as neurosurgeons abound, and are far too clever to get things wrong , any sensible medical information about the sacrum and pelvic nerves goes unnoticed.
I have numbness too Earl and know exactly the path of much of my pudendal nerve, as it hurts! Other typical PN symptoms too but when they are coupled with sciatic, post femoral pain and numbness and clunial (middle and inferior) numbness, the diagnosis of nerve entrapment at piriformis level is such a logical and medically sound answer. It just makes sense but try telling that to people who don't think past S1.
Actually the last person to give a judgement on my medical situation (for a tribunal) now says that I have 'Central Sensitisation', i.e. my central nervous system is now reading the signals wrongly and reading pain when none exists, as there is nothing showing impinging on MRI. Of course this is still put down to my 'old back problem'. . . . and my lower spine isn't painful at all! and I haven't ever said that it is since my successful op.
Even tho' I pointed out that I'd worked for 5 years without any back problems until my fall. It really is SO frustrating! I almost think that I will need to be on the operation table and have piriformis pictures taken for them to realise the problem is as diagnosed by 3 separate dr's who DO know about pelvic nerves.
Thanks for the link Violet, going to have a look now.
Take care all,
Helen

[Earl]

Im questioning My periformis diagnosis given by Dr Filler because the surgery did nothing for my sit pain and genital numbness.
I have maybe what is a board question. I started this topic as 'surgery with Azsmann ' and now I've steered it all over the place to probably something that should be called , "Surgery with Dr Hibner" . Yet there is a lot of information on this topic that would be missing if I started a new one. What would you recommend?
Earl

[Earl]

I had looked briefly into ketamine infusions and wondered if you looked at that Helen ?They claim to help central sensitization and supposedly help nerve pain . Not that you have central sensitization as it seems they are giving you that diagnosis because they don't know PN. I have burning and pain down my legs and to my feet a lot of the time . It's not necessarily when my back is bothering me. I think it is my pelvis that is restricting blood flow and nerves that pass thru to the legs.
In having only the right side TG surgery with dr Hibner I'm wondering how soon they would decide the left needs it too. 2 months, a year ? Also though i started with pain on the right and then eventually the left is it likely the left would go away on its own? There was not an injury there although I did have bilateral surgery with Dr Filler a year ago. Also why do I have pain both sides although less on left. Does anyone have any ideas?
Earl

[nyt]

Dr. Hibner requires his patient's to wait six months between sides. He has had some patients improve enough when they have one side done that they decide not to have the other side done. Plus, it usually takes about 3.5-4 hours or longer for him to decompression one side and to do both sides makes it a longer surgery than he wants to perform due to fatigue on his part. This is only my theory but I think that when one side is spasming, we all tend to sit all cockeyed or stand weight bearing on one side, that results in stress on the good side which then causes the good side to spasm and through us mechanically out of alignment. Like I said, just a guess on my part.