new guy, old problem, just diagnosed

[Bart]

Hello fellow readers,

While I'll cover quickly what's happened, I'm keen on understanding the need for more pelvic injections and if one can know that more are useful or just wise to get.

For 36 months I suffered awful, changing, pelvic physical pain which started suddenly that many months ago. On really only the right side of my body and also, at times, along the body's midline, I've had in the pelvis, burning physical pain, sickening-nauseating physical pain, numbness and tingling. Earlier this year, I noted that climbing steps caused a low-level discomfort (pain level ~ 2 to maybe 3) in the 2 sit bones-- this was new in this problem. Last month I went to see Dr. SA who looked at my medical reports and tests and did his internal and external tests. He said that I have pudendal neuropathy because of what I did when younger: cross country in high school, marching band in high school and college (but never high stepping as the doc thought- I didn't correct him on this), and, in adulthood, avid bicycling since 1971. He said my pelvic nerves are "stressed". I don't yet have his full report. On the day after he met with me, he did injections of marcaine and methylprednisolone into both the right and left buttocks and said that a 2nd series of injections in ~ 1 month and a 3rd series should be done. Antolak said that if these injections don't work, then surgery could be done.

But two months ago I found the right drug combo (for me) that made the horrible, constant physical pain quickly end. I only take 20 mg amitriptyline at bedtime and 200 mg gabapentin twice a day. Even though I've had the recent buttock injections, I suppose that the rectal burning physical pain (and maybe other pelvic pain I've had in the past 36 months) would return if I stopped the 2 drugs. So I'm wondering if I should run an experiment to know if the 2nd series of injections would be wise. I could phase out the drugs and see how I feel. Correct?

It seems to me that that's the basic problem for me now--> figuring out how I'd benefit from two more series of buttock injections. [I think Dr. SA said that in the 3rd series, injections would be done into or by the Alcock canal.]

Has this same sort of thing happened to any of you? Even before injections, you're feeling much better due to Rx drugs, you're diagnosed by a pudendal nerve expert, you have buttock injections, and you still feel the same, that is, not bad. [Maybe you, as I, can't tell much when drugs only have a quite subtle, positive effect.]

In the 36 months, I only had ice to use for physical pain because I can't take NSAIDs (e. g. aspirin, ibuprofen, etodolac, etc., etc.)

If a bony part of the pelvis bones has permanently changed due to what I did earlier in life, I suppose that injections only end inflammation and that's it-- they don't do a thing about any entrapment of the pudendal nerve if that exists. Do some pelvic pain patients only take the injections and stop there, forgoing the surgery? Dr. SA said that entrapment can only be discovered in surgery. So it's a big gamble--> operation or no operation. Right?

I'd like to be physically active again but due to age, I have some other, lesser (but annoying) medical problems.

[Violet M]

Hi Bart and welcome to the forum. If I understand correctly, you said that your pain is basically non-existent on the two drugs you are taking, right? Are you having any annoying side effects from the drugs?

Regarding pudendal nerve blocks (injections), I know several patients who became worse long-term from them. So that is something to keep in mind when you make your decision.

When it comes to surgery -- it's irreversible and a small percentage of people get worse from it. It's not easy to recover from either. So, that's something to keep in mind if your pain levels are very low.

Best,

Violet

[blightcp]

I just had a nerve block lat week, my first post surgery.

I have Dr. Dianesi who is in the same office as Dr. Quesda in NH.

In my opinion you want a guided prcedure from somone who does this all the time.

I have had 5-6 blocks by Dr. Dianesi and he is done in 5 min, no joke. He has the x ray line up before starting and only takes like 3 shots(x-rays) and he is at the nerve.

They get it right if you feel a shooting pain in your groin, sometimes they use some local aneshetic and you can douple check if half of you peinis goes numb, a weird sensation for sure. But that goes away in a couple hours just like the dentist.

As for side effects, I get massive leg cramps at night, takes about a month or two to subside.

In reality, this is a stepping stone for insurace compainies to allow surgery.

I do know of cases where it has healed people but mostly only if you catch it VERY early, as i am here in NH 20 min from Dr. Conway I have heard of a few cases where this has worked. The only specifics i can think of is a young (college) girl who injured it via impact and our PTs cought it and forwarded it to Dr. conway. But thats a best case secnario.

[helenlegs 11]

I did exactly what you are suggesting Bart. Welcome btw (sorry) should have started with that
Anyway I had botox injection into my piriformis muscle as that's where I have the nerve entrapment problems. So to see how well it worked, I stopped taking Gabapentin, seemed like a good idea at the time but I did have a real problem withdrawl from the drug. The flu like symptoms lasted for 2 months and I really felt ill and for AGES. However, I may just be one of the 'lucky' ones . I was rather glad that the botox was doing a good job, doubt I could have handled both, thing is if you don't give it a go you will never know.
I don't like to take tablets and would hate to rely on them forever anyway, so I think I would have always done this 'experiment' but you have to bear in mind that's what it is all about, experimenting. Everyone is different. I'm sure others have easily stopped taking gabapentin or other drugs.
At least you have the option of starting the drug again if it doesn't work, as you know that this med does works for you. I didn't bother going back on gabapentin as it hadn't really done the trick in the first place and I would rather not face another with drawl obviously.
Injections can be the solution, but as Violet mentioned people have had 'flares' after them sometimes and fewer have reported lasting problems.
No great ray of hope from me is there I'm usually more up beat All we can do is try.
Hope things work out, drug free.
Let us know what you decide and what happens.
Got to say that I agree blightcp, best case scenario's, off they go on their merry way. Joy!
Take care
Helen

[Hugh]

Hi Bart and welcome to the forum. If I understand correctly, you said that your pain is basically non-existent on the two drugs you are taking, right? Are you having any annoying side effects from the drugs?

Hi Violet,

Thanks for your question.

Yes, on the daily 200 mg gabapentin taken 2x/day and on the daily 20 mg amitriptyline taken at bedtime, my pelvic physical pain is faint or absent, but then I'm standing most of the time and I'm not engaging in physical activities that would worsen pelvic pain-- I still bend at times though. When I drove late last month to the Twin Cities to meet with Dr. SA, in the 4th hour of the driving (of the 5 hours it took due to stopping at most interstate rest areas) the area between the sit bones was starting to hurt. Incidentally, since earlier this year I've noted that if I sit on a cushy, reclining, adjustable chair, I can cause a sliding effect of my body and this sliding causes a sort of shearing effect on the area between the sit bones. When this shearing effect goes on a short while, the area between the sit bones hurts just as it did late last month in the 4th hour of driving. It seems to me that the soft tissues between the sit bones (I suppose these are muscles) have no integrity, no soundness, no strength.

When I started the gabapentin in late April 2012, I had annoying dizziness. Even though I discovered that the gabapentin helped me, I stopped taking the drug due to the dizziness, but I resumed taking it ~ mid-July 2012. The dizziness ended some time ago. I know that people can have annoyances from the amitriptyline but I think that since I'm only taking 20 mg of it at bedtime, I don't notice a dry mouth. But in the past (i. e. much earlier in this problem) I took only 75 mg amitriptyline every day and I did have dry mouth, constipation, and a now-and-then, very annoying, out-of-the-blue pounding of my heart. At 20 mg taken at bedtime, I don't notice any out-of-the-blue heart pounding so maybe it only happens at higher levels of amitriptyline.

Yesterday I checked with my doctor and found out it's OK for me to do an experiment cutting the amitriptyline in half (to 10 mg taken at bedtime) and cutting the gabapentin in half too (taking only 100 mg 2x/day). So last night was the start of my experiment. I suppose I'll know more after maybe 7 days of my experiment. Of course, I can't tell if the buttock injections done late last month by Dr. SA did much-- maybe the effect was too subtle or maybe the 2nd series of his injections into the buttocks is needed-- I don't know.

Before I went to meet with Dr. SA late last month, I had been now and then walking forwards and backwards in a nearby lake. When I was with Dr. SA I asked him if I could do water walking. He said "No, that's not good for your pelvic muscles." I didn't say anything but I thought that was an odd answer.

[Bart]

....Anyway I had botox injection into my piriformis muscle as that's where I have the nerve entrapment problems. So to see how well it worked, I stopped taking Gabapentin, seemed like a good idea at the time but I did have a real problem withdrawl from the drug.

I'm wondering if I won't be sleeping well because both the amitriptyline and the gabapentin have been cut in half in my experiment which started last night.

The flu like symptoms lasted for 2 months and I really felt ill and for AGES. However, I may just be one of the 'lucky' ones . I was rather glad that the botox was doing a good job, doubt I could have handled both, thing is if you don't give it a go you will never know.
I don't like to take tablets and would hate to rely on them forever anyway, so I think I would have always done this 'experiment' but you have to bear in mind that's what it is all about, experimenting. Everyone is different. I'm sure others have easily stopped taking gabapentin or other drugs.
At least you have the option of starting the drug again if it doesn't work, as you know that this med does works for you.

I'd read that only ~30% of people having neuropathic pain are helped by gabapentin. It doesn't work then for ~70% of people having neuropathic pain.

[helenlegs 11]

I'm just glad that these regime seems to be working for you Bart. It's often experimentation, everyone reacts differently so it becomes a bit of trial and error but if it's working, GREAT!
What about PT has that been suggested?
There is a list of physiotherapists on the home pages. I always think this is always necessary. Sometimes it works a treat, any muscles that are playing up and causing the nerve pain can be released although it may take some time. Even if it isn't helpful pain wise it may help rule something out, like a tight pelvic floor.
I hope you still get a good nights sleep. The Nantes Criteria, which is the medical bible for PN does say that a sufferer isn't woken in the night with the pain but there are many here would would testify otherwise. That may be because there are other things involved of course. Nerves are strange things.
Take care,
Helen

[konedog4]

I am doctoring with Dr. SA too and so will add my 2 cents worth. I have had 5 blocks and can only say that one helped - my urinary urgency went away after an alcock's canal block. I have suffered no ill-effects from any of the injections. That is not to say the injections are without risk. You know this, as you sign the consent form that lists all the possible complications. In my three blocks with Dr. SA, I have had not had complete numbness of all areas of the pudendal nerve, so I am thinking that the medication is not getting placed in the correct spot, or perhaps I have an abnormality in the nerve anatomy and it is hard to locate. The blocks are not curative, in fact, I have read that perhaps only 5% get a permanent result of improvement from the blocks. But insurance companies want the series of three blocks before surgery is considered. Why three blocks? I cannot answer that. I wonder if anyone can? I was also told that my previous physical activity led to my PN condition. Supposedly, remodeling of the pelvic girdle causes the "clamp" to tighten around the pudendal nerve in about 80% of the cases. Hmmm. I wonder about that. Back in the 1950's and 1960's doctors took out tonsils on everyone, and now they don't. Why the change? Because they were wrong about their basic theory on tonsils. Many unnecessary surgeries were done to take out tonsils that should have stayed in place! So much the same I believe with the idea that previous physical activity causes pudendal nerve entrapment. I say this is a theory and not fact. I know that my pudendal condition started after a bike ride where the tongue of the saddle pressed into my perineum causing a deep bruise. This later scarred over and I was trapped. When I explain this to SA, he dismisses my thought and insists the clamp area is where I am entrapped, yet, no 3T MRI shows any entrapment anywhere.

My point is this: PN is in its infancy in terms of diagnosis and treatment. What the doctors are doing now, cutting ligaments, doing open surgeries instead of laproscopic, and the post-operative care of the nerve after surgery are all experimental at this point. One only has to look at the dismal record of surgery to see that the doctors do not necessarily know with certainty what they are doing. If people were entrapped 80% of the time in the "clamp" area, then I would suppose that upwards of 80% would be relieved when the nerve was cleared from the clamp. Yet, that is not what we see after surgery. Some do get better, perhaps a third get close to a cure. Another third get a bit better, and the final third get no better or get worse. It is unfortunately at this point in time a crap shoot, and when one considers that we are gambling with our bodies, it makes me pause long and hard before considering surgery. For the unfortunate people who do not improve, or only improve a little, the doctor jots it down in his chart and moves on. Unfortunately, the patient does not move on. I wonder if the surgeons truly appreciate this fact?

I am a dentist, and I will not do a procedure if it is only successful 1/3rd of the time. It would be considered too risky. I need a procedure I can rely upon before I will do the surgery. It has to have at least an 85% chance of success before I will do it. Unfortunately, this does not appear to be the case with pudendal nerve conditions. As I have written elsewhere, I would have to be absolutely desperate before considering surgery. Fortunately, I am not desperate with pain. I can tolerate the pain I have if I manage it and limit my activity. I don't like the limitations imposed by PN, but right now I will not rush into a surgery that may leave me worse off.

What we as PN sufferers need is a body of firm data to look at and see what is working and what is not working. When I asked Dr. Becco (Belgium) why he does not wrap nerves after his unique surgical approach, he said there is no evidence either way that it helps "No proof" he said. When I asked Dr. Renney (Houston) about predicting outcomes from their surgical approach, he wrote back that the surgery is totally unpredictable! So even the surgeons do not know what exactly is the best course to take in terms of surgery. Again, the surgery approach is in its infancy and I am quite certain that it will likely change as the results have not been overwhelmingly positive.

Of course, if one is in a desperate situation, one does have to pick their poison. I was in the same situation when I had to pick my poison when I had prostate cancer four years ago. Which mode of treatment to pick? Each man is presented with about 5 options, each of which have side effects and potential complications. Likewise, this surgery for PN also has many potential complications, and a very long recovery period. One picks their poison and hopes it is not too poisonous.

I really don't have any definitive advice, as there is none to give. Each person decides on their own the course to take based on their situation, the diagnostic evidence, and the calculated chance that the condition will improve with treatment.

I hope you are in the lucky 5% of those who get better on the injections alone. Dr. SA has showed me charts documenting certain individuals who have gone through a second series of injections and then miraculously got better. Yet, I have not seen any definitive statistics showing how many out of a thousand people got better. This is what we need as patients to see, so more informed decisions can be made. The same holds true with any surgery. Ask to see the statistics, if there are any, and then examine them to see if they are valid, or if it is representative of a small sample size. Information is power. False information will lead to false decisions, so get the best, most helpful information you can get. That is the best advice I can give you.

kone

[helenlegs 11]

Excellent post kone. Well said!
I am in a similar position to you in that I am SURE that my problem is from a bruise/haematoma. Mine happened after a fall and subsequent buttock muscle spasm. I had one particularly painful spot which I found out was my piriformis muscle (although that took 2 years to discover, I was saying SI joint and bum up till then everyone else medical was telling me it was my back)
I did discover a lump in the p muscle about 3 months after the fall. It had been too painful to investigate that deep, to locate it any earlier. The lump disappeared after a while. I didn't have any one investigate it medically as it hurt so much to touch. I did tell a neurosurgeon about it but back then neither he nor I realised the significance of this lump, he didn't even mention it in his report. He was still only interested in my back as this was his speciality.
Now that I know about haematoma's in the piriformis (and probably any muscle)the more important that lump seems to be. However I still can't get people to agree on the significance. Thankfully Dr Greenslade does (my pain consultant and one of the few people in the UK who can treat the problem)
Unfortunately my treatment has stalled as others either think I am lying about it OR just can't get their heads around the significance of this lump or BOTH.
If you take a look at this, it is piriformis related but I'm sure any damaged and bruised muscle would be similar.
From The Journal of Bone & Joint Surgery, Volume 81, Issue 7
Articles | July 01, 1999
Posttraumatic Piriformis Syndrome: Diagnosis and Results of Operative Treatment*
ERIC R. BENSON, M.D.†; STEVEN F. SCHUTZER, M.D.‡, HARTFORD, CONNECTICUT

We believe that piriformis syndrome can be caused by blunt trauma to the buttock and is a result of hematoma formation and subsequent scarring between the sciatic nerve and the short external rotators. Local anatomical anomalies may contribute to the likelihood that symptoms will develop.

I suppose all haematoma's or bruises have the potential to form lesions and scar tissue. There are some piriformis account of exactly this type of thing happening and some surgical pictures to support this in medical papers. Trouble is getting people to 'get' it!!
I'm struggling too
Take care,
Helen

[blightcp]

Hi, my name is Carl and I have been deling with the warning signs of PN for almost 10 yesr but in the last four years full blown PN.

I first thought i had a hernia, and had laproscopic surgery that ruled that out. I was treated for illionguinal pain for 2 years as my symptoms just got worse.

I spent 8 years in the military and ran 4-7 miles a day for exersise untill 2002 when i blew out my knee. Now i am an engineer and have asiting job. In 2009 the pain got so bad i could not sit.

I went to Dr. Conway in 2010, at that time he had perfomed over 200 PNE decompression surgeries. He presented the surgical odds for bilateral TIA surgery as this 40% chance for improvment, 20% chance for major improvment, 20% no change, 20% it coulld get worse (no issue to begin with), as the pudendial EMG showed propogaion delay he was confident there was an entrapment. The surgery was considered a diagnostic procedure.

My right side was compleatly healed in comparision to my left.

I has some releif on my left but in 2012 the symptioms started to get worse again, I went back to Dr. Conway, In those two years he had learned the transgluteal sugery and had performed a number of second surgerys on patients. The reson for this is that the pudendal nerve is nit visable via the TIA method. The transglutial allows you to see the complete nerve.

If nothing is wrong with the nerve you do nothing to the nerve, it's obvious but he was clear that if there was nothing to fix he was not going to mess with it.

What he discovered was:

1. A fragment of the ligament had scarred onto the nerve.
2. The pudendal nerve had worked its way into an "extra" fold of the (ST?) ligament. The nerve was freed and the ligament was corrected, not cut to pervent this from-reoccuring.

In my case I could feel a diffrence in my groin immediatly. The recovery from the transglutial itself was easy, but the pudendal nerve will take time to heal, 18 -24 months was what i was told.

I guess my opinion with this is that there are at least a few Suregons out there that will adjust to new techniques annd procedures. I would much rather have a larger incesion and allow the suregon a clear view of the nerve than a minimal view that may not find the problem.

I know that Dr. Conway uses the DaVinci robotic suite for other obgyn procedures. So if there was a way to use a minimally invasive method i would assume he would be working on how to propose/present it (i'm an engineer not a doctor so i'm not clear on how somone would go about creating a new type of procedure).

For the ammount of pain i was in i would gladly do the transgluteial operation if:

The suregon was experinced (multiple surgeries of this kind a week) and the only major risks were that of a typical general anesthetic and infection.

The other risks come into play only if something is found to be corrected. I don't want to speak for him but in my conversation with Dr. Conway his expectaion on results was dependant on what he observed and was able to correct. He would only wrap nerves if ther was a reason to expect adhesion to the nerve post surgery. The said the biggest indicator of a unsucessful surgery was if there was nothing found to be corrected. Also, a disection move and reattachment was a last resort method of releasing the nerve, cutting a ligament was a lower risk than dissection.

In closing, i agree with you, the surgeons that handle you as a real person( in severe cronic pain ) are few. I can only tell you that in my case i was informed of the risks and tradeoffs you mention.