Updata-Athletica pubalgia, pudendal neuroma, atrophy

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc

Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby nyt » Wed May 18, 2016 5:57 pm

I have three updates on my case: 1) athletica pubalgia, 2) pudendal neuroma and 3) obturator internus muscle atrophy

1) I've had a set of symptoms I've complained about since my hysterectomy and transobturator tape surgery 9 years ago. My new neurologist that treats my Complex Regional Pain Syndrome practices at the Vincera Institute which specializes in core injuries. The neurologist was concerned that I might have structural damage in my pelvis from the original surgery that needed to be repaired. After seeing a surgeon and a specialize MRI that focuses on the pubic bone I was diagnosed with athletica publagia also referred to as sports hernia.

The doctor believes when the transobturator bladder sling was placed some of the adductor muscles of my legs and rectus abdominus muscles that attach to the pubic bone were torn off the pubic bone. Because of these tears I've had uneven loading on the pubic bone which has caused chronic changes to my pubic bone. I have a lot of scarring from both the sling placement and surgeries to remove the sling which is causing constrictions of my adductor muscles. When I saw Dr. Dellon about 5 years ago he thought I had some tears of the adductor muscles and showed my mother and I that the lumps in my legs he thought were muscles that had been torn off the pubic bone. This surgeon said pretty much the same thing as Dr. Dellon. I choose not to have surgery with Dr. Dellon because in consultation with Dr. Howard we felt all the surgery that Dr. Dellon was recommending could cause more harm than good. At this point, the surgeon and I both agree that I have managed to compensate to walk,the surgeon wasn't sure that after all these years that he could pull the muscles back onto to the pubic bone to attach, concerns that because I have other pathology in my pelvis (right obturator internus muscle atrophy and pelvic floor dysfunction) that I probably couldn't do the PT to make the surgery a success that I am not going to have surgery to reattach the muscles to the pubic bone. We are going to try some obturator nerve blocks then send me to PT and see if PT can break up some of the scar tissues and do active release therapy on my adductor muscles. I can't tolerate my adductors being touched and I my adductor muscles spasms anytime PT or my massage therapist try to work on them so we are hopeful that if the signal to my brain is blocked using a nerve block my legs won't hyper-react to treatment by spasming.

The moral of the story, if you are one of the women on the forum who had a transobturator tape bladder sling and are still having groin pain, difficulty taking a full length step, difficulty with resistance walking (for example, water walking), difficulty with a full stretch of the inside of the legs this might be a diagnosis to consider. The surgeon told me right after he saw me he had another woman patient that had the same type of bladder sling and woke up from her surgery in such severe pain they immediately removed the sling. He said her adductor muscles were totally torn off her pubic bone by the sling placement.

2) Another finding on my MRI was a pudendal neuroma at the ischial spine on the right side. Explains the continued complaints I've had since my pudendal surgery that I still can't sit and that it was very painful to put pressure on the right sit bone. Now I know why. This was probably caused by my pudendal surgery. The interventional radiologist at the Vincera Institute has injected the pudendal neuroma twice. Not sure what the plan will be to deal with the neuroma. Not excited about any surgery but may have to see if they can remove this.

Therefore, another moral of my story, if you continue to have problems sitting after your pudendal surgery a pudendal neuroma might be a possibility. Even though the pudendal neuroma was on my pelvic MRI I had in December the radiologist missed it on their read :evil: . It was only because I needed the special MRI of the pubic bone that the 2nd radiologist saw the pudendal neuroma. I asked them if it was on the MRI in December and they did relook at the MRI for me and it was there.

3) Another finding on my MRI was severe obturator internus muscle atrophy on the right side. I know just enough about how to read MRIs that I saw this myself and when it wasn't on my MRI report I made multiple calls and finally spoke with the attending radiologist. The MRI was updated to reflect this finding. The doctors are quite sure it is a deinnervation atrophy, in other words, the nerve to the muscle was damaged and can no longer make the muscle contract so basically the muscle dies. There is no way to know what caused the damage to the nerve. Options include when the bladder sling was placed, when the bladder sling was removed, or when I had my pudendal surgery. My gyn is absolutely convinced it was when the bladder sling was placed. This finding explains what was seen on my pelvic floor biofeedback traces.

Overall, don't trust if your MRI says it is normal. I had several findings that were missed on both MRIs I had, I've only mentioned two of the missed findings. Also, there can be physical causes that explain your pain, sometimes it just takes a long time to figure them out.
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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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby stephanies » Thu May 19, 2016 2:44 am

Nyt,

You have been through a tremendous amount from the placement of that bladder sling. It sounds like you have made progress with determining causes of your pain and hopefully what the doctors are proposing will be successful. I remember hearing from a patient of Dr. Robert's years ago that he cut (maybe the wrong word to use) the nerve to the OI muscle so the muscle would atrophy and this would give the nerve more room as it passes through the pudendal canal. Was your PN surgery right side only? You are fortunate to have good doctors who are willing to help out the puzzle pieces together and also to have some skill in that area yourself.

Sincerely,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby Violet M » Thu May 19, 2016 4:52 am

Amazing how you have figured out so much of this yourself, NYT, but it sounds like you have a group of physicians now who are committed to figuring out what is really going on with you. I hope all of this information will allow you to pursue treatments that are helpful although it sounds like some of what was done during that initial surgery is difficult to fix at this point. :(

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.
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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby nyt » Thu May 19, 2016 1:13 pm

Stephanies, Dr. Hibner did both sides. It was never mentioned that he would cut the nerve to the OI muscle even though when you mentioned I remembered I read it somewhere, maybe on this forum.

Thanks Violet. It has been a slow process trying to figure all that happened in my pelvis 9 years ago.
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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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby April » Fri May 20, 2016 4:24 am

Many thanks for the update, nyt. It does sound like it will all be difficult to treat, but it must be a relief to finally have a clearer sense of what happened. Thanks also for the cautionary tale on MRI readings—I remember you posting on that once before. It’s a useful message to hear. I had MRIs of my back, pelvis, and hip last year, and the back MRI was so different (minor bulges) from the MRI two years earlier (“very severe stenosis”) that I have wondered how carefully the second radiologist examined everything.

April
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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby wannagetbetter » Fri May 20, 2016 9:32 pm

I am glad you are getting some clarity on this. Do you recommend the neurologist at the Viscera Institute? Would you be willing to share their name? Also, do you recommend Dr. Howard and would you share where s/he is located?
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Re: Updata-Athletica pubalgia, pudendal neuroma, atrophy

Postby nyt » Sat May 21, 2016 6:30 pm

April, it is concerning when radiology reports don't agree with each other. I told the radiologist that when reports don't agree or they miss information in reports it can have huge repercussions for any on disability ie it can potential cause them the loss of their disability. It was something he said he never thought about. He also told me they don't have to report every thing they see if they think it is an incidental finding. To me that is concerning because they don't know your history like the doctor that has sent you for the test.

Wannagetbetter. Dr. Howard has retired. Dr. Carrillo and Dr. Benjamin-Pratt have taken over his pelvic pain patients. I only met Dr. Benjamin-Pratt once so I don't know her. I see Dr. Carrillo and like him. They practice in Rochester, NY.

At the Vincera Institute, located in Philadelphia, I see Dr. Aradillos-Lopez. He is a neurologist that specializes in Complex Regional Pain Syndrome. I do not know if he sees pelvic pain patients or only patients with Complex Regional Pain Syndrome. I've been seen by the general surgeon in their group, Dr. Poor. Dr. Poor specializes in pelvic and abdominal pain and he figured out I had athleticia publagia. I've had several ultrasound guided procedures by Dr. Roedl that were order by Dr. Aradillos-Lopez or Dr. Roedl. Below is the link to their main website. You can at least take a look at the bio on these three doctors and look at what the other doctors specialize in that treat patients within the group. The receptionist are wonderful there so I would imagine if you call they probably would tell you which doctor would be the best for you.

http://vincerainstitute.com/index.php
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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