Possible PN and hoping for help!

[Violet M]

I agree it would be a good idea to see if someone could read the old MRI's but even if they were to find tarlov cysts, some tarlov cysts don't cause symptoms so it's possible to have an asymptomatic tarlov cyst but have PNE I would think. It might depend on where the cysts are located --if they are located near S2, S3, S4 the symptoms could be similar to PNE. So maybe you want to at least see what the Potter MRI says? I don't know -- just a thought.

Violet

[Meliora]

I just got the results of my 3T MRI using Dr. Potter's protocol at a local facility. It showed acetabular labral tear on the right anterior/superior. I have had issues with my right side mainly, but it's now bilateral. I don't think that would explain my altered sensation or why my pudendal nerve tends to go numb in areas when it's irritated. Might explain some of the pain maybe? I was hoping more would be shown regarding the actual nerve. Maybe Dr. Potter could have found more. It showed no mention of cysts in the sacral area either. I don't really know what I should do with this new information.

[Julia]

Hi Meliora,

Is that a labral tear of the hip? If so, there are others on here who have labral hip tears contributing to their PN pain. Use the search bar to find posts about labral tears, I am sure they can help you.

[helenlegs 11]

Yes Meliora, as Julia said there seems to be a distinct correlation for some people between labral tears and PN symptoms. If I can find I will post. Found
http://webdoc.nyumc.org/nyumc/files/obg ... ooklet.pdf Here's something faith posted fairly recently.http://healthyfocuspt.com/wp-content/up ... rticle.pdf

also theseHealth Organization for Pudendal Education • View topic ...
http://www.pudendalhope.info/forum/view ... p?f=9&t=69
10 posts - 7 authors - 17 Sep 2010
I believe that labral hip tears are the undiagnosed source/cause of many pelvic pain conditions. How can I be of service in your research.
Health Organization for Pudendal Education • View topic ...‎ - 4 posts - 15 Jun 2012
Health Organization for Pudendal Education • View topic ...‎ - 6 posts - 7 May 2012
Health Organization for Pudendal Education • View topic ...‎ - 6 posts - 23 Jan 2012
Health Organization for Pudendal Education • View topic ...‎ - 7 posts - 7 Mar 2011

Sorry though the above would link but here is the page
https://www.google.co.uk/webhp?source=s ... 80&bih=675

Also this from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697339/
More than 90% of patients diagnosed with acetabular labral tears complain of anterior hip or groin pain [6, 7, 13, 35, 38, 42, 44, 48, 50, 51, 83, 89]. Pain is less often reported in the lateral region or deep in the posterior buttocks [7, 44, 48, 54] and pain may radiate to the knee [2]. Burnett and colleagues studied 66 patients found to have labral tears by arthroscopy and reported 92% had predominant localized groin pain, 52% had associated anterior thigh pain, 59% described lateral hip pain, and 38% reported associated buttock pain, while no patient presented with isolated buttock pain [13, 35]. Unique in women is the possible concomitant pelvic-floor pain that may occur [13]. Data suggest that anterior hip or groin pain is more consistent with an anterior labral tear, whereas buttock pain is more consistent with a posterior labral tear [48].
Take care,
Helen

[Meliora]

Julia, yes it is a hip labral tear. I am glad the MRI finally found something. Helen, thank you so much for the articles! I am taking them to my pain doctor today. I would like to try a hip steroid injection to see if that would help. I hope I am on to something here that could help.

[Meliora]

Questions and update...... so, I saw a hip doctor and he thinks my main problem is still pudendal neuralgia. He wants me to focus on that first and my hip tear second. I don't know, I may get a second opinion regarding the hip tear. I know someone wrote Dr.Hal Martin was a good hip doctor. I had a right sided pudendal nerve block last week, went completely numb on that side and still feel it has helped. I am doing my left side this week. I am glad I separated the blocks because its now clear my symptoms are bilateral. Also, I was sooooo numb I doubt I could have even gone to the restroom all day! My pain doctor did a good job with the numbing meds! I have so much pain with any form of intimacy and the block helped calm some of the mixed signals.....pain mainly! The only negative from the block so far was bladder spasms the day after from the side that did not receive a block and being sore/bruised from the actual block, oh and a little stinging from the injection. Still think it was helpful and lets me know its for sure a pudendal nerve issue.

My question is about Hibner vs. Castellanos. I can see Castellanos much sooner, but I have some complex issues and not sure if I should wait to see Hibner instead. Anyone have any thoughts on either of these doctors? I am also hoping to hear about Dr. Conway and Dr. Shobeiri. Anyone??? I know Shobeiri is referral only and Conway I have to wait 2-4 weeks until he calls to see if I am a candidate for his services. I don't know if surgery is my only option, but I am sure tired of standing all day for the last 6 months and still no driving.....not great when your a mom! My veins in my legs are looking icky too from all the standing. Plus, each month the nerve seems less well. Has anyone tried botox?

[biff0101]

Meloria, if you can not wait I say go see Dr. Castellanos. I am currently being monitored by him from the initial consult to the series of nerve blocks I am receiving. He listens to everything and he follows up with you in a quick manner. Also I am sure he consults with Hibner on a daily basis so your concern of experience should be lessened.

cheers
Jim

[Jax87]

Hi,
Please get a second opinion on your hip before you turn towards PN surgery! I also have labral tears in my hips that I will be seeing a specialist for soon, but there are other people having surgery on their hips to fix the tear have eventually fixed the PN issue. Once the hip is stablized, the pelvic muscles can readjust and stop crunching on the pelvic nerves. It is not a quick process, but it can theoretically fix the underlying problem. If you just try to fix the PN without fixing the hip, then the PN may never go away. That said, definitely try all the conservative options such as PT, meds, and blocks before you go for hip surgery. Just know that nothing except surgery will actually repair the tear if that is what you eventually need to do. (no matter what the PTs tell you!) But please please don't get PN surgery before checking out your hip options some more.

I have heard anecdotally that Hal Martin is a good doctor to see. I don't know where you are located, but the doctors at the Hospital for Special Surgery in NYC are experts in labral tear repairs. There are not that many doctors in the country that really know how to fix them, but you need to see someone who knows what they are doing. There are several ladies on this forum who have had hip surgery, and I think Helen gave you the links.

Good luck and hugs,
Jackie

[Meliora]

I have another question....how do you know what surgeon you need? My MRI did not show an entrapment (was not read by Dr. Potter,) although I do feel I have one. Example, I cannot sit because of pain, but also my vagina goes numb. When I quit sitting, sensation returns after a bit. My pain is between the rectum and vagina, and the lower part of my vagina burning. However, the skin to my clitoris has less feeling and is at times hypersensitive. What keeps me from sitting though is the other pain area. I just do not know which surgeon's approach I need. Also, is there a surgeon that can decompress the whole nerve if needed? Is TG/TIR approach better at decompression than laproscopic? I just wish I could have less of an invasive surgery.

As for the hip issues....still looking for a surgeon, Dr. Martin's office keeps not returning my calls for an appointment. UGH!

[Jax87]

Not to be a broken record, but all of those symptoms can be from your muscles that are tightening because they are stabilizing your hips and pressing on your nerves. You can have those symptoms and not have a true "entrapment" that would require nerve surgery. That is why Dr. Potter does not find any nerve entrapment in these kinds of cases.

When you talk to a hip doctor, focus on hip pain and not PN pain, they will be more receptive. That's a tip that Lernica gave me, and it works.

Feel free to PM me, I've been doing a whole lot better lately and I hope with the right course of treatment you will too

Hugs,
Jackie