Scaredgal's MRI with Dr. Potter

[scaredgal]

Here's my MRI report from Dr. Potter - according to two neurosurgeons (one of them Dr. Ansell in Houston), the areas where it appears that I am entrapped (scar tissue) are areas their surgery does not go into. Is it hopeless for me - am I doomed to live this way forever? If so, it's no use going on....

Any thoughts, suggestions or help is appreciated. Not really sure where to go from here...

MRI of the pelvis was performed utilizing coronal and slight axial inversion recovery followed by coronal, sagittal and axial and oblique axial fast spin echo techniques. Clinical concern is severe vaginal pain with particular concern of compression of the pudendal nerve. Per request, images were obtained throughout the pelvis with high resolution images through Alcock’s canal and the dorsal nerves to the clitoris.
There is anterior angulation of the lower coccygeal segment asymmetric to the left, as seen on series 3 image 96. There is scarring of the anococcygeal ligament and scarring of the inferior margin of the perirectal fat plans with bilateral scar surrounding the pudendal nerves to the rectum, seen on series 7, image 45. More inferiorly there is scar in the subcutaneous fat surrounding the vestibule superficial to the superficial perineal muscles. This is noted on series 7 image 31. In addition, focal pelvic floor varices are seen coursing with the dorsal nerves to the clitoris, right greater than left. There is also a prominent varix coursing with the branch of the left pudendal nerve to the rectum. Some prominence of the pericervical venous plexus is seen, which in the appropriate clinical setting may reflect pelvic venous congestion syndrome. More posteriorly, the sacrotuberous ligaments appear symmetric without focal scarring or scar entrapment. Coccygeal muscles appear symmetric.
Bilateral adnexal cysts are seen, containing hemorrhagic content with fluid levels. There is no bulky pelvic adenopathy. More anteriorly, the genital branches of the genitofemoral and ilioinguinal nerves appear unremarkable. Mild degenerative changes are seen in the pubic symphysis. There is no evidence of recent injury to the adductor tendons or hamstrings. Perineural cysts affect the sacral foramina.

Impression:
MRI of the pelvis demonstrates scarring of the perirectal fat plans as well as the anoccoccygeal ligament, with scar surrounding the branches of the pudendal nerves to the rectum bilaterally, as well as pelvic floor varices coursing with the dorsal nerves to the clitoris bilaterally, as well as the left branch of the pudendal nerve to the rectum.

[AliPasha1]

Hi Scaredgal,
In my opinion,Dr. Hibner should be able to help you.It seems like a OBGNY problem.The rectal branch shouldn't be too difficult to address.

Warmest of Regards,
Ali

[scaredgal]

Hi Ali,

I sure hope so - I called his office last Thursday, and they have a copy of my report - but I still haven't heard anything back. I'm also wondering if I have entrapment in this area, if I even need the TG surgery - from all indications my Alcock's canal or my ST/SS ligaments do not have scar tissue. The second neuro consult I had said that the nerve was just too small in this area - so no one messed with it because of possible risk of incontinence and neither the TG or TIR procedures addressed it. Certainly some surgeon must be able to fix this area!

[Karyn]

Hi Scaredgal,
I don't have any anwers for you but here's a great, big HUG! Why do you think your entrapments can't be addressed with TG or TIR surgery?
I'll be keeping my fingers crossed for you, hoping Dr. H contacts you soon!
Warmest of regards,
Karyn

[scaredgal]

Hi Karen,

Thanks for the hugs.... because it's what Dr. Ansell and another leading neurosurgeon told me - they said their surgeries do not go into that area. They said the nerve branch is too small at that area and there would be too large of a risk of damaging the nerve. Dr. Ansell said for me to try more injections or get on meds and the other neuro (he's not one listed on the PNE sites - just one I sought a second opinion from locally) offered possible neuromodulation to stop the pain pathway to that branch of the nerve. Neither is a good option in my opinion.

[Karyn]

Oh, dear. I'm going to go out on a limb to suggest it may be time to consult with another PN doctor. It may be true that Dr. Ansell can't access it, but I would find it hard to believe that no surgeon can. Have you been following the "dorsal nerve" thread by any chance? There's lots of info about those hard to reach places. So, what are you thinking about the injections? I don't understand why Dr. Ansell would think they'd be successful this time, especially in light of the fact that you've got true entrapment. A's Mommy would be a great person to hook up with regarding the pelvic floor varices.
Please don't give up, Scared! You're NOT doomed to live this way forever.
Hugs,
Karyn

[sgrandy]

This caught my attention: Perineural cysts affect the sacral foramina.

Are these tarlov cysts? Is it possible that these are also affecting your pain?

Stephanie

[scaredgal]

Hi Karyn,

Thanks - yes I have been following that thread - however, not sure if the doctor's mentioned (Dellon or Aszmann) are doing anything with the rectal nerve, just the dorsal nerve. I will probably try to contact them depending on what I hear back from Dr. Hibner. On the pelvic varices - yes and what is interesting about this is my symptoms started with sexual arousal (and it's still ongoing although not quite as bad as it was initially). So the varices to the dorsal nerve must be causing havoc in that area. what's interesting is what I've been reading about Persistent Genital arousal syndrome is that that is one big common factor in the pelvic MRI's with women with that condition. I flared pretty bad from the first injection to the ischial spine - haven't had one to Alcock's canal - so I guess he wants me to proceed with that. I've just heard so many bad things about this second injection and I can't handle a flare right now - anyway I don't really think they are very successful and worry it could make me permanently worse. I can't stand feeling this way and can't imagine going the rest of my life not ever being able to sit comfortably again.

Hi Stephanie - yes, I've been doing a lot of research on the Tarlov cysts, and mine (from a previous pelvic MRI are at S2 and S3). But both doctors have insisted they "are nothing" and don't cause any symptoms......However, I do think that from the location of my pain, that the MRI was pretty accurate in pinpointing the areas of issue. I knew all along that my problem was not at the ST/SS ligaments - but had I not gone through the MRI, I'm sure I'd be headed to a surgery that probably would have done nothing for me at all.

I just don't know about doctors anymore.....

[A's Mommy]

Hi scaredgal,

Potter did find "large evidence of pericervical venous plexus indicative of pelvic congestion syndrome" or something like that on me. I did not have them surrounding the dorsal nerve, or if I did, she did not mention that in her report. I have never had any hyperarousal symptoms and really whenever my clitoris is touched it's just annoying and tickly so I just ignored the darn thing my whole life (back when I could have sex, the only way I could orgasm was through vag. penetration, but that could just be me). I sent you a private message.


By the way, a LARGE area of interest for Dr. Hibner also involves treatment of pelvic congestion syndrome.

Here's hoping he contacts you soon. I have heard in the past that he goes to Poland over Christmas but who the heck could verify that?!

Hugs,

A's Mommy

[scaredgal]

Thanks A's Mommy - I replied back to your PM!