You are misquoting a private conversation, Ezer which really is a violation of the terms of use of this forum''
Violet, I have not mentioned a single private name. I have not disclosed any confidential information. I did not mention what group of patients you selected. I do not have access anymore to the private section of the forum where our discussion took place so I cannot quote the exact terms you used (significantly better, cured, or whatever term you used). But if you feel I have violated some rule, feel free to ban me.
@nyt: I started to write a long response but I gave up. I have addressed already many points that you are raising in my prior posts. I am a scientist like you and I wrote and presented papers at international conferences so I am well versed into how to conduct proper studies. My objection to PNE surgery is not some sort of juvenile and exuberant response to my own cure.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
My dear friends
Let's cheer for every sufferer who crawls out from the devastation of this disease.
Does it matter how, when, what or why as long as a human being is able to smile and enjoy life again?
Friends, lets not derive from our common goal of finding solutions that will ease our pelvic woes. I think it makes sense to conclude, that there's more to pelvic pain than PN or PNE. Also, every person is different. I do agree with Ezer though, that there definitely needs to be more refinement and improvement on the diagnostic process for PN or PNE, because currently, its frankly not enough. With the mixed surgery results, Doctors should have more responsibility on their suggestions and treatments they recommend. They need to be more THOUROUGH with their evaluations.
I remember when I went to the USA, I had normal latency tests, failed block at ischial spine, the only thing I had as indicative of PN was a temperature sensitivity test, and to be honest, even that one was the most subjective of all! Was I able to feel a slight temperature change in the right side of my groin? I was guessing all my answers, even when I nailed them! I'm not sure I would had been able to comply if the probe was put on my belly either...I mean come on... Even with these results, I was diagnosed with right pudendal neuropathy and suggested decompression surgery, when most of the pain that affects me is on my left side. I don't have a single problem with sphincters either. The Docs did told that, at that time, 2 out of 3 persons had "some improvement", whatever that is.
No, that is certainly not enough. And reading (in my case) about failed surgeries more than successful ones should put anyone aware that this is your body, not the Doctors, and certainly you can't take decisions so lightly. After all, at the end, the decision to take the surgery route is ours, not the Doc's.
Moving ahead, I personally can say I've been better, doing daily exercise (light stretching, walking, jogging, elliptical trainer) and trying to keep my mind from the pain obsession. I'm not cured by any means, but I can sit more with less pain. I was just able to take a 10 hour drive, to and back from, with my family for vacation these holidays with a simple tens device placed on my back at the level of the sacrum. Something I never thought I would do again.
Btw, I strongly recommend these simple tens devices by Icy Hot brand. The PSU unit mounts in the patch itself and its small and practical, don't have to carry cables around and attract curious eyes. You can put the whole thing under your underwear and keep it pretty much private.
I met any pain specialist here, he's young, hands on, and pretty brilliant. We are going to get back to the basics, and try some diagnostic blocks without steroids to try and find the source of my pain. We both believe it must be originating either from the sacrum, or the coccyx, not the PN nerve itself. I will share observations afterwards.
I had surgery 5 weeks ago, bilateral, and I feel like I am living in a nightmare......I was not told much about what to expect during recovery, though I did ask questions.....my pain is so bad.....I cry, I am so disappointed and so depressed....Will I be this way forever???? The burning pain is worse than before surgery, I cannot have a normal bowel movement, have tried all natural remedies, but only a harsh laxative works for me...I feel so depressed, I don't want to get out of bed..I am a nurse, which just makes being unwell even more unnerving!!! I have been seeing a therapist for some time, as well. I felt good for about 5 days postop, then we had to make a 2 day trip back to our home...at the end of the first day, I knew we had made an error in judgment, should've taken a plane!!!!! I was in tears and Lortab got me home. I am still using Lortab and started Lyrica. The lyrica has made my ankles swell terribly....so, even though I have had good results with it, I may need to switch to Neurontin, or one of the SNRI drugs, cymbalta or savella. If anyone can enlighten me on anything helpful, I really would appreciate any input.....I feel really desperate for relief, and feeling like I made a huge mistake with surgery, or am I just in too much of a hurry to leave this pain behind, or at least wind it down a notch or two. Help, please!!!!!
Don't give up yet although I feel for you the pain was tough the first few weeks post op. I took painkillers oxycodone with acetetaminophen 5-325mg and since the have used tramadol which may help. They also had a temporary pump with medication that helped the first week or until the line came out. The pain was still worse than before surgery however it did go down over time. Can you get some temporary pain meds to get you through the initial phase from your local dr? My surgeon wanted me to start working after 4 weeks and although I was not in your pain I was not ready for work.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
It takes a long time to recover from this surgery. I too was worse for a while after my surgery and then over time things improved. I am not cured but I do have things that are totally gone since my surgeries.
First, take it easy. Do not push yourself, listen to your body.
The constipation, we have discussed this quite a bit on the forum many ways to deal with it. If you put in constipation in the upper right link "Search" area the threads related to constipation will come up. There are recipes with applesauce, prune juice and wheat bran that help some people, some individuals use magnesium citrate tablets, some use a regime mirolax, colace and prune juice. As a nurse you know it is best to try and not use harsh laxatives but sometimes one has to do some things temporarily to get through the worst part of things but finding something a little gentler on your system that will keep you regular will help keep down flares after surgery.
Have you tried some heat or ice or alternating the two? Some people find them helpful.
Try to take a little time and listen to some meditations, there are many free ones on the internet you can download. Sometimes calming the mind and distracting for a bit can be helpful.
But like I said above, just be very gentle with yourself.
I'm very sorry to hear you are going through this. It is way too soon to draw any conclusions on your surgery. I was temporarily worse after surgery too with severe burning pain and wondered if I had made a mistake. The important thing is to take it easy and use pain medication. I took clonazepam and oxycodone for abut 9 months post-op. Use plenty of ice gel packs and once the incisions are healed you could try alternating hot/cold sitz baths.
In my experience, slowly over time the new burning pain faded and the pain I had before surgery was mostly gone. It just takes a lot of time and patience because nerves heal slowly.
I agree with Mod15 -- it is better to use some laxatives in the early days after surgery than it is to become constipated and strain. I still use magnesium on a regular basis and have been for almost 10 years with no problems.
Just from your name I am wondering if you are from Mexico and whether there are physicians who treat patients with PN in Mexico. When you feel up to it, I would be interested in getting more info from you on this. We have no doctors from Mexico on our provider list so far.
Remember....take it easy.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Far too soon to get panicked... I have heard so many like you that have a lot of pain (it is major surgery) for a few months after surgery that start feeling much better 3 or 4 months out. Just keep calm as you can with some kind of pain relief drugs and you will feel better soon.
