Health Organization for Pudendal Education

Hi,

How long should you give conservative measures to see if it will help, by that I mean medication and lifestyle changes? I am confused because I have read that if a nerve can heal then it takes months and months and I know that the recovery from decompression surgery takes 1-2 years. But I don't get the impression that the PN doctors suggest conservative measures for 2 years before doing nerve blocks and surgery. It is confusing because I know that surgical success is statistically better the shorter the duration of symptoms, so you wouldn't want to add too much time to your clinical history by seeing if things improve naturally.

Any comments or experience most welcome.

Kath

Good question, Kath. I too would like to hear some views on conservative v. more aggressive treatment. I have been suffering from "full-blown" PN pain for approximately 6 months, although I have been symptomatic for close to ten years (trouble sitting, running, walking, etc.). I have been disabled from PN pain for about four months. I am not sure whether to start doing nerve blocks, botox, going to NYC to get a 3T MRI, start seeing PN surgeons, etc., or wait until more conservative treatments such as pain medication and PT fail. An anaesthetist I saw recently said I should be pursuing complementary courses of action, not "sequentially". He wants to do an ultra-sound guided nerve block within the next couple of months, and in fact I have signed a consent to do this (but now I'm on the waiting list). When I protested on the basis that I have not yet tried PT, the anaesthetist didn't care. He wants to go ahead now. But I have also heard on this forum about many complications and worsening pain following injections. There is no diagnostic reason for the procedure because my neurologist/pain doctor is quite confident of the PN diagnosis and so am I, given my symptoms and what I've read on this forum and in the literature.

I would be grateful for any comments.

Thanks,

Lernica

Great topic!! I too have been wondering this same thing. I finally sent a letter to my doctor outlinging all my questions and different therapies asking what is next. They just keep giving me different meds to try every 6-8 weeks. So now he says that I could try PT and blocks. He thinks PN is over diagnosed and isn't convinced that I have it. So now I have to go try to find a PT. I'm going to call Loretta Monday and see if there is anyone her office can suggest in Tucson. But truly, is there any special order to the trial and error that people would suggest? I don't want to make this pain worse. I finally seem to get it down to a tolerable level and then I go and do something stupid, like loading the dishwasher and it flares again.

I am skeptical about this whole "it takes so-and so-amount of time for the nerve to heal" idea (not in relation to surgery but in relation to conservative measures). When I had my SIJD corrected, I got INSTANT relief of about 50+% of my neuropathy. Instant, and then no further "healing" of the remainder of the neuropathy, for the 14 month that have followed that. I have improved my symptom control with meds, but that is only symptom control. I think the instant relief was because part of the underlying pathology was removed, and the continual symptoms are due to further pathology that still needs to be addressed. I am not waiting around for the nerve to heal itself.
I have stayed on neurontin, which I hate, because I have heard from several practitioners that it promotes nerve healing. I don't know if that is even a research based claim or not. Anyway, no further healing seen here; or maybe a little in the 1st month but certainly nothing long term.
I can see how people who have nerve decompression surgery, deal with so much direct manipulation of the nerve that it will in fact take time to heal; in fact I think there is a fairly common pattern of feeling worse after surgery and then gradually improving.
But as to conservative measures, JMO if they are going to work you are going to notice the difference quickly. If it doesn't help, and especially if it hurts, but you keep being told it will help somewhere down the line if you just keep at it...that to me is a waste of time.

Kath, Great question. Any publications that you read on pain caused by nerves, no matter the cause or the nerve, conservative treatments for 6 months is standard across the board. Conservative as in medication, PT, life style changes. Obviously, research has shown that enough individuals are cured or pain is well controlled in the acute pain phase (less then 6 months) that conservative treatment is always the first line of defense. If after 6 months there is no significant improvement in pain and function then it is considered chronic pain and then more aggressive treatments are usually recommended ie nerve blocks, surgery, stimulators, pain pumps, etc. In addition, this is what pain specialists will tell you.

I think what happens with many PN patients is most dr.'s aren't familiar with this syndrome so it takes longer to get diagnosed therefore longer for the appriopriate treatment plan to get started. I wouldn't be surprised if a large percentage of individuals on this forum figured out there diagnosis themselves after unsatisfactory explanations and treatments. So now most PN individuals are in year 2 or 3 before an accurate diagnosis is made. Compared to someone with carpal tunnel that would get diagnosed by the family dr. on the first visit and the appropriate treatment started right away ie medications, PT and life style changes the PN patient is already behind the 8 ball putting all PN patients at higher risk for less than satisfactory outcomes. Hopefully, as more gyn and urologist become familiar with PN the diagnosis will be made much quicker and treatments started.

Kath wrote:How long should you give conservative measures to see if it will help, by that I mean medication and lifestyle changes?

Kath, I'm not sure there is a "right" to this question because it can be different for each person. It may depend on what caused your PN problems in the first place. There are a few rare people who have posted on the forums over the 7 years I've been reading them who improved with lifestyle changes. Eight months of lifestyle changes did not help me. If I had waited 2 years maybe it would have helped but from what Bautrant said he found in surgery, it probably would not have helped.

One thing to consider......are you willing to continue those lifestyle changes for the rest of your life? Depending on the cause of your PN -- if you don't continue with the changes but try to resume your previous lifestyle, you may end up right back where you were.