desperate for answers

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lookingforanswers22
Posts: 7
Joined: Sun May 22, 2011 1:50 am

desperate for answers

Post by lookingforanswers22 »

Hi there,

I haven't written in such a long time because i was feeling terrific. Back in March I got in a minor flare and with help from my wonderful PT she got me out of the flare and I was continuing going to PT. Back in April we were still doing some internal work because I was still around a 3 and in the past I could actually get to a 1-2. The great news is that a couple of weeks ago I found out that I was pregnant and was thrilled. I continued to go to PT and she didn't go as deep but worked on the dorsal nerve (which she never touched before)which put me in this horrendous flare now for over 4 weeks. I can't seem to shake this. This is suppose to be the best time of my life but in the meantime I am so miserable. This flare will not subside. And to make matters worse is that I can't take anything. She is trying to descensitize the nerve but it's not working still horrible pain, itch, burning, prickling etc. I did have an Mri with dr Potter that shows some impingement on the dorsal nerve. Does anyone have any suggestions? I've been icing all week, nothing is helping....
Thanks so much for listening!!
AliPasha1
Posts: 739
Joined: Fri Sep 17, 2010 2:35 pm
Location: New Orleans,Louisiana

Re: desperate for answers

Post by AliPasha1 »

Hi there,

Your best bet is Dr. A Lee Dellon in the Baltimore area or Dr. Oskar Aszmann in Vienna,Austria for the doral nerve decompression.I am not sure whether Dr. Hibner in Phoenix,Arizona has started doing dorsal nerve decompression surgeries or not.


Kind Regards,
Ali
Last edited by AliPasha1 on Sun May 22, 2011 5:18 am, edited 2 times in total.
Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Quesda left me with sitting pain.
Unilateral TIR approach with Dr. Bautrant on 18 Febuary,2010 with no major improvements and sitting is much worse.
MRI By Dr. Potter reveals nerve entrapment in the ST,AC and DN.
Dorsal Nerve Decompression surgery on April 8,2011
Redo surgery by Dr. Hibner on July 18,2011
lookingforanswers22
Posts: 7
Joined: Sun May 22, 2011 1:50 am

Re: desperate for answers

Post by lookingforanswers22 »

Hi Ali,

Unfortunately I can't do anything right now because I'm pregnant. Any other options to get out of this horrendous flare??

Best
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Violet M
Posts: 6889
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: desperate for answers

Post by Violet M »

Wow, I'm sorry this happened to you and at such a difficult time. Are you allowed to use topical ointments like extra-strength vagisil? Did you try ice balloons internally?
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.
lookingforanswers22
Posts: 7
Joined: Sun May 22, 2011 1:50 am

Re: desperate for answers

Post by lookingforanswers22 »

Hi Violet,

I haven't tried the ice balloons. I have tried the vagisil but it mad me more itchy ..the pt did tell me that I was out of alignment as well. It's so frustrating because I was doing great. I'm just praying that it's just a flare and it will die down soon..can't take much more. :(

Best,
K-
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Amanda
Posts: 454
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
Contact:

Re: desperate for answers

Post by Amanda »

Hi Lookingforanswers

Congrats on your pregnancy, its hard to feel happy right now when you are in such pain; have you tried ice to soothe your delicate tissues?
Perhaps some aromatherapy remedies make ease things for you, however there are certain oils you should not use when pregnant so you should consult your medical advice on this matter.

Lets hope that your current flareup may ease on its own, in the meantime maybe try to concentrate on your own personal wellbeing and the health of your unborn child....this is a special time for you and the baby.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
lookingforanswers22
Posts: 7
Joined: Sun May 22, 2011 1:50 am

Re: desperate for answers

Post by lookingforanswers22 »

Hi Amanda

Thanks so much! It is so hard not to be depressed when I'm in excruciating pain 24/7.. I have been icing the area constantly with no relief. I'm going crazy here with this pain.. :evil:
K-
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: desperate for answers

Post by nyt »

Have you tried warm epsom salt baths? Maybe going to a pool and putting on a flotation device and just relaxing to try and get the muscles to relax, I know this helps me. What about a TENS unit? Now sure if it would help or not if you could find a spot on the sacrum that might block some of the pain signal. Not sure any of this will help and only time will settle things down. I also don't know how much of this is aggregravated by the change in hormones from pregnancy.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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