New and desperate for help - please!

[Laramarie]

Hi Desperate

I had the TG approach in December 2013. I am from Toronto and am a patient of Dr Gordon and Peng. According to my operative report I had a true pudendal nerve entrapment encased in scar tissue between both both SS and ST ligaments and attached to pudendal vein. The surgeon released this nerve and I am recovering, this was my left side only.

I thought I should mention that I never had the "back pain or leg burning" that you are mentioning..... My pain was more localized in the pudendal nerve area.

Were you able to get OHIP to help you out with the potter MRI or did u fund that yourself?

BTW: I went to same physio as you pre op....

Hope you are doing better today?

Lara

[desperate]

Hi Desperate

I had the TG approach in December 2013. I am from Toronto and am a patient of Dr Gordon and Peng. According to my operative report I had a true pudendal nerve entrapment encased in scar tissue between both both SS and ST ligaments and attached to pudendal vein. The surgeon released this nerve and I am recovering, this was my left side only.

I thought I should mention that I never had the "back pain or leg burning" that you are mentioning..... My pain was more localized in the pudendal nerve area.

Were you able to get OHIP to help you out with the potter MRI or did u fund that yourself?

BTW: I went to same physio as you pre op....

Hope you are doing better today?

Lara

Hi Lara,

Thank you for the reply. No, OHIP did not cover any of that, it was all out of my own pocket (roughly 3500 for Potter MRI).

I find it very strange that my symptoms go far beyond the localized pain majority of ppl are speaking of. I now get lower back pain when standing for greater than 20 mins and my legs are tingling and feel cold. My toes get numb and feel like they are alseep (while cold also). I really do not understand these symptoms what so ever and it is freaking me out.

And no, sadly i feel worse and worse each day. Symptoms seem to be progressing more and more. I went to church yesterday for a 'healing' service and stood the whole time (approx 2-3 hrs) and afterwards my feet and legs were extremely cold and numb. I have no idea what my next steps are going to be but i do not know how much more of this i can endure. I do not think there is one day that goes by that i do not shed a tear (sorry to be so straight forward but its true).

I really hope Dr.Gordon will be able to help me or at least provide me some more knowledge on my MRI results from Potter. I would have loved to speak to Potter about my results to hear what her thoughts are my images. The MRI did not really provide me much information that i could run with.

Also, how long ago did you do this surgery? how are your symptoms now? have they gotten better, healing?

-Dom

[Laramarie]

I had my left side done 4.5 months ago in Phoenix. I suffered greatly for over 2 years with PNE and tried everything (nerve blocks, meds, physio, rest).... Nothing worked for me! I was in 10/10 pain everyday....and on narcotics. Now I am healing.... I am still in some pain but I am hopeful that I will get better slowly.

[Violet M]

Dom, you are not alone. I shed many tears going through PNE. I'm saying some prayers for you now that you will be strong and get through this and that you will find healing. I was in a very dark place as you are right now but I have come out a better person, more able to understand other people who are in pain. There is a special plan for your life and you will find what it is once you get through the worst of this. Your gal is a special person for staying with you through this.

With the low back pain you are experiencing you definitely need to get the SI joints and ligaments checked out. If the ligaments were strained in the accident it could take time for them to heal. Ligaments have poor blood supply and don't heal as well as some other tissues in the body. Often PT's have you stretch to release the tension in the muscles but it's important to remember that if the ligaments are strained, stretching can just cause them further injury and if they are impinging on the nerve, can cause further irritation of the nerve. Just speaking from my own experience with strained, thickened, ligaments. In another post I mentioned the Hesch method as a possible treatment if you do have SI joint dysfunction and pelvic misalignment due to the accident.

Violet

[desperate]

There have been a number of Potter MRI reports that have found pelvic varices (varicose veins) and some people have gone so far as to have these varices embolized. I can't remember anyone ever reporting back that this procedure was successful.

The thickening of the left sacrospinous (SS) ligament could be significant especially if it coincides with your symptoms.

Hi Violet, I'm referring back to this now as I called Potters office today asking if she could elaborate on my MRI results as unfortunatley Dr.Gordon and his assistant did not have much to say...along with my PT and Physician.

Potter said that the thickening of the SS ligament can't really depict if there is a true entrapment or compression - it's not clear enough to say. However, she did say that if I were you then I'd be more concerned about the prominent pelvic floor varices rather than the ligament...now reading over what you had stated...that not many people reported back if their procedure was successful (if at all anyone did) has me concerned as to what the procedure is to remove these varices. I spoke to a PT in NY and she has a patient who recently went under surgery to remove the varices and got worse! I was trying to find a sense of hope that perhaps if I remove the varices (i understand its not an easy procedure) then there will be some released tension on the nerve...

I'm not sure what to think, I'm trying to get as much done as possible as the days go by.

Thank you

[HerMajesty]

To me the assymetry in the ligament suggests possible pelvic misalignment and I see Violet has mentioned Hesch method to you, to evaluate and correct that. If you are looking as far afield as New York, you should see Robert Shapiro of Gold Coast PT, http://goldcoastpt.net/staff/huntington/ , who is probably the foremost practitioner of Hesch method aside from Jerry Hesch who is in Nevada. I got significant relief from Hesch Method and then I worked with Jerry Hesch for a time (I am an RN), and learned a lot about biomechanics. During that period I saw several pudendal neuralgia patients come through his office with various levels of success or non-success: Pelvic realignment can only help if pelvic misalignment is the actual cause, and can only cure if pelvic misalignment is the only cause. However, I can definitely say the most dramatic 100% cure i saw during that time was in fact performed on somebody who had acute PN symptoms after an auto accident. I did not see the original post before it was deleted, but it does seem you were in some kind of accident (?). If it were me I would see Robert Shapiro NEXT before more tests or any procedures. Because there is a chance it might be that simple.

[Violet M]

Well, obviously Dr. Potter knows a lot more about what her MRI's show than I do, but keep in mind Dr. Potter is a radiologist, not a surgeon, and some patients have reported back on the forum that some of the surgeons who perform PNE surgery have told them that the MRI reports don't necessarily coincide with what they find in surgery. That is why I try to remind patients on the forum that MRI's and MRN's aren't 100% accurate in determining whether you have an entrapment. I think it is very telling that she says the image is not clear enough to tell if there is a ligament entrapment.

I don't know, I could be wrong, but it just seems to me like common sense that a tough object such as a ligament has more potential to harm the nerve than a soft object such as a vein. I honestly can't remember one patient who has reported success with vein embolization surgery for varices in order to treat pudendal neuralgia. If any of our other forum members can remember someone, please correct me if I'm wrong. I just can't remember anyone. There may be patients who don't post on the forum who have had good results so I don't want to discourage you from having a procedure that might be helpful to you. Maybe it would be a good idea to contact several of the PNE surgeons for advice.

The only peer-reviewed literature I have seen that suggests varices can play a role in nerve entrapment is an article I posted by Dr. Possover awhile back. Most articles on PNE describe the nerve being entrapped by ligaments or fascia, as in this article by the former Houston team. http://www.pudendalhope.info/sites/defa ... ment_0.pdf
So does Bautrant's article. http://www.pudendalhope.info/sites/defa ... utrant.pdf
And Robert's article. http://www.pudendalhope.info/sites/defa ... Robert.pdf
They don't mention varices.

My urogyn told me that she sees large varices in women who have no pain at all and did not feel that varices would play a significant role in pelvic pain. So, Dr. Potter may disagree with these surgeons but I would be more inclined to go by what the surgeons say since they actually go in there and see things for real, rather than on somewhat unclear images.

Now, if you have enlarged blood vessels near the area of the ligament grip, suggesting that there is a back-up of blood in the vessels due to compression by the ligaments, my understanding is that, that would be considered to be an important finding since the nerves typically run alongside the nerve and if the blood vessels are compressed, the nerves may be also. I have seen a number of MRN reports showing that there is a backup of blood in the vicinity of the ligaments, suggesting a nerve compression.

I know that in my case the ligaments were thickened and entrapping the nerve. Sorry, I don't have all the answers for you and I know it's difficult when you hear conflicting information. I can only tell you what I have read. I was diagnosed without a 3T MRI or an MRN. I believe history, clinical exam, and symptoms are more important than images that aren't entirely clear.

Best,

Violet

[desperate]

Yes of course, very valid points have been made - I too also find it hard to believe that such small veins can compress a nerve...and the thickening of the ligament is something much more prominent to be looking at.

I'm now in the midst of looking for Dr.Hibners contact info (the secretarys email got rejected) as well, as Dr.Roberts - I've heard he is retiring and have been trying to look for who will be replacing him does anyone know?

I also understand that Hibner is a gynecologist...and treats women - and most of his care is to women...however correct me if I'm wrong are there not men that have gone to him?

[janetm2]

The number for Dr Hibner's office is 602 406-6017 as listed off the home page and in worldwide-USA section of the forum. He does treat men as well as women.
Janet

[desperate]

Apparently Dr.Hibner no longer works with male patients. Called his office today to inquire about some information and his secretary said that he is no longer accepting male patience and told me to go on the HOPE website and check the remaining doctors. So, we know Dr.Hibner no longer accepts male patients, Dr. Antolak i believe is retiring/retired also?? and Dr.Robert is retiring soon? So are their any doctors to help men or does it seem like everyone is retiring?