Health Organization for Pudendal Education

One more thing:

Fricka:

In your post you said that Dr. Potter suggested "injections to the perineum to help break up scar tissue". Did you ever get this done? What substance did your doctor use? Is this hydrodissection? One of my doctors offered me to get hydrodissection of my sciatic nerve where I have a bad injury and where the nerve might be stuck to my hamstring. It would be great to find out from you, or anyone reading this, what you think of hydrodissection.

Thanks and take care!
Sunshine

Hi Sunshine, Unless there has been a very recent change in policy, Dr. Potter will not read any other MRI's but her own, so you would have to make an appointment for another 3T. From the HOPE home page, if you select "find a Doctor", her contact info is on that list. So you can always call the office to check if her policy has changed.
I know it's off topic for this thread, but can you tell me about shrinkage of your muscles due to botox injection? I have never heard of that. Is it a risk with a single injection, or a possible result of multiple injections only? Thanks!

Hi Sunshine,
The only time I have heard of the piriformis muscle being smaller, is with regard to piriformis syndrome (no clue about the obturator and hamstring however) Of course a hypertense piriformis muscle could be the cause of sciatica. Is you problem on one or both sides? I have piriformis syndrome so have a particular interest.
I haven't heard Hollis Potter mention the piriformis much (or at all? ?/ maybe once but can't remember who) so if you do go ahead it would be best to mention your piriformis involvement, although I'm sure it would be picked up anyway.
Did your botox help the piriformis pain at all? Mine helped the tense muscle, only has one done so had the other as 'a control' but it didn't do much for my sciatica or pudendal pain so it's still a bit of a mystery.
Take care,
Helen

Thanks for your replies. Ii have a flare, really bad, and can't really write. But I will answer hopefully by Monday. Just need to take it easy a few days. I will ttell you about how my pirif and obtu got all better. Talk to you soon

HM and Helen, there have been a number of patients who posted that repeat Botox injections caused atrophy of the muscles such as the obturator internus.

Hello Everybody!! Thanks for replying to my post.
Her Majesty: Thanks for the info. Not great news that Dr. Potter only reads her own scans... but it makes sense. Thanks for the info.

All: Can any one please tell me if it is customary to have a follow up with dr. Potter regarding the scan results? Can anyone recommend a good, really good doctor who might be able to figure out where in my sciatic nerve the scar tissue might be? It would be great if I could see a good doctor with such expertise to order the scan to be done by Dr. Potter. I am sure I have scar tissue and a disc problem, because all of the symptoms I have... My doctors are saying that "something" is irritating my sciatic nerve but they dont know where. It could be my back, the disc, of eventhe pelvis or possibly the hamstring... My case is really complicated with lots of symptoms.

Helenlegs and Her Majesty:

I used to awful pirifromis and obturator internus pain. But, sucess! The pain is mostly gone from the buttock thanks to Dr. Alan Leff in NY. He has helped me so much I will forever be thankful to him!!! In the course of two years, I have had many, five or six, Botox injections into multiple muscles each time, an average of 3 vials total per procedure date, into varied muscles like the pifirormis, obturator internus, psoas and quadratus femoris. Also, in later visits you can point to Dr. Leff where it hurts, he uses CT scan to visualize the muscles and he injects if it is appropriate.

I am so happy I didn't get the surgery as shrinking of muscles via botox is better. That's how my piriformis and obturator internus shrank. In my case it was a very good thing. My hamstring is thin mostly because it hurts to move my leg or bear weight. I don't have pain in my buttock if I am careful not to exercise it. But, I can hardly walk or sit or stand or even lie down on my side. Most of the pain is in my foot though, but is positional and depends on activity.

Again than you all and can somebody tell me how to get a notification when someone replies back to this post? Have a wonderful evening and best of luck.

Sunshine:

In order to "subscribe" to a post and thereby get emails when it is replied to, all you need to do is click on the checkbox next to the line below the reply box that reads "Notify me when a reply is posted".

There is a whole list of checkboxes that look like this:

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Christopher

Another way to be notified of further posts - you can just click on 'Subscribe topic' at the bottom left of this page.

Thanks Christopher! Thanks Calluna!
Now I won't miss the replies.

Hi Folks
I am thinking of getting an MRN to hopefully find out once and for all what is causing my severe anal/rectal pain and ongoing urinary urge/hesitancy dysfunction.
There is a spot on the right peri area that has felt tight and painful for years ...and I would love to get a clearer look at this and all my painful areas.
A 3T MRI from Dr Potter gave me some info, but no sign of entrapment per se or specific scar tissue.
She advised an embolization of the pelvic varicosities she noted in this test. This was done in 2011 with no change in symptoms.

A doctor that I respect,Dr Joshua Prager recommended this test for me and uses them for his pain patients saying that it offers a clearer pic of the nerves.
Sicne I cant get to CA right now I hope to do it locally.

I was wondering what the current thought is on MRN'S these days...I had heard some things about Dr Aaron Filler which made me wary about him, but as said I was not advised by him, won't 'be dealing with him and will be doing this test in the NY NJ area
thx for any thoughts from someone who has experience with this test.

I respectfully request please -- no scary or horror stories, Once you hear such things its hard for me to forget them.
I am in a lot of pain, am very fearful and still trying hard to be hopeful ...this is key in my healing!
Thx so much in advance.
Kathy