Mulan's MRI -help!

[Mulan]

Here is my MRI report with Dr. Potter.

Primary pain: internal pain between vagina opening and urethral
Secondary pain: rectal/anus pain sometimes

MRI of the pelvis:
MRIof the pelvis was performed utilizing coronal and oblique axial inverison recovery followed by coronal,sagittal and oblique axial fast spin echo techniques. Clinical concern is to assess the pudendal nerve.

There is focal scar formation at the superficial perineal muscles, anterior to the levator ani muscle and posterior to the vestibule, affecting the posterior margin of the dorsal nerves to the clitoris. A band of scar extends posteriorly from the vestibule and anterior to the anus, noted on series 7 image 9. This is noted at the anteroinferior margin of Alcock's canal. Mild hyperintensity is seen on fat suppression at the anterolateral margin of the left levator ani muscle, abutting inferior perineal branches of the pudendal nerve distribution to the anus. This is seen on series 8 image 9. There is no dense scarring of thelevator ani muscle proper.

The coccygeus muscle apprears symmetirc. The coccyx tip is deviated minimally to the left without scar entrappment. The fat planes around the presacral and precoccygeal plexi are unremarkable.

The pudendal nerves in the posterior margin of Alcock's canal are unremarkable. Both the SS and ST ligaments apprear symmetric without scar entrapment of the pudendal nerve.The sciatic nerves lie anterior to the piriformis muscles and do not pierce the piriformis muscles. Thin coronal images through the posterior margin of the sciatic nerves demonstrate no scar formation around the posterior margin, adjacent to the posterior femoral cutaneous nerve. There is no ischial bursitis although there is bilateral hamstring tendionosis with partial detachment bilaterally, irght greater than left. The fat planes araound the obturator neurovascular bundles are unremarkable.
There is a dominant right adnexal cyst. No pelvic adenopathy is seen.
Of note, there are no extensive pelvic floor varices or features to suggest that of pelvic venous congestion syndrome.
The genital branches of the genitofemoral nerves are unremarkable, as are the ilioinguinal nerves.

Impression:
MRI of the pelvis demonstrates a very focal scar formation at the inferior margin of the vestibule and anterior margin of Alcock's canal, abutting small inferior perineal left side and vulvar branches of the pudendal nerve distribution bilaterally. There is no scar formation of the levator ani muscle proper and the pudendal nerves in the posterior margin of Alcock's canal, as well as adjacent to the SS/ST ligaments, are unremarkable. There is no evidence of pelvic venous congestion syndrome.


I feel so hopeless after the MRI. Who is willing to address small vulvar branches ? It seems to me all doctors address either the PN or its branches. Do you know any doctors who do so or do non invasive surgery to remove the scar ? Any feedback is appreciated.

[Lernica]

Don't feel hopeless, Mulan! You are getting closer to the answers you need to get better. Every piece of the puzzle is necessary. Your MRI is just one of those pieces.

I'm afraid I can't answer your questions but I'm sure you'll get some answers from others soon. We will help you figure this out! You're not alone.

[nyt]

To me the positive aspect of this MRI is now you can start thinking about a much more specialized treatment plan as you know exactly where your problems are.

Good news is that it appears you don't have scarring or entrapment of the pudendal nerve at the SS/ST ligaments or the posterior section of Alcock's canal. To me this means if you are thinking surgery you should consider an approach other than the TG because these are the two main areas the TG approach addresses (SS/ST and posterior AC entrapments). The TG approach usual does not address the anterior portion of the AC but I do know some of the newer changes some of the dr.'s are making during the TG approach they are getting some access into the anterior portion of the AC. Since it appears that the scarring is in the branches and the anterior portion of Alcock's canal the individuals who could address this the are very limited. Dr. Dellon in Baltimore, Dr. Azsman in Austria (I'm sure I've spelled his name wrong) and Dr. Hibner was just trained with Dr. Azsman for the approach for the dorsal branch decompression. I don't know if Dr. Hibner is starting doing the new surgery yet. These are the dr.'s I would contact if I was thinking surgery.

The deviation of the coccyx might possibly be addressed by PT or a chiropractor. You might notice some improvement in any rectal symptoms if this was addressed. I know my chiropractor has worked on mine and even though it was quite painful initially after about 2 adjustments I did notice my rectal symptoms did improve a little bit.

Do not confusion tendinosis with tendonitis as they are different. Tendinosis occurs when there are muscle tears, the tendon does not heal properly and is a chronic change to the tendon. For the most part treatments for tendinosis are conservative and very limited. Some dr.'s will go into the tendon and scrape it with needle to try and get proper healing to occur but it is difficult because tendons are quite avascular. Recenlty there has been some success with injecting the tendon with platelet plasma rich therapy.

As far as the hamstring tears, you must have a fair amount of pain and tightness in your hamstrings. An orthopedic dr. would send you to PT. PT will do things like massage, electrical stimulation, ultrasound, heat, ice, mild stretches to see if they can get them to heal. If they are bad sometimes they have you use crutches for a while. Last resort is surgery to fix the tears depending on how bad they are.

It is good that the obturator nerve looks good and if you had problems with that you would have pain on the inside of your legs and difficulty closing your legs.

The right adnexal cyst you should see your ob/gyn about. The adnexal area is in the area of the fallopian tubes and ovaries. These cysts occur during egg maturation and release. The majority of them are benign and resolve on their own but you should take the MRI to your regular ob/gyn to talk with him/her.

Talking with your primary care dr. about what this MRI shows and potential treatments is also a good place to start with other things on the MRI besides just the pudendal information. That is what I have done to try and treat the other issues I have in my pelvis that are contributing to my pain.

Good luck and I'm so glad that you have this wonderful information, even if it seems overwhelming, it is information that explains why you pain.

[Griff522]

Mulan, I know it feels very overwhelming to get those MRI results and then try to figure out what they mean and what to do next. Nyt gave some excellent advice, and I agree with her. Now that you know what your problem is, you can focus on how to correct it. Good luck to you in your search for a dr that can help you with becoming pain free as soon as possible.

[Karyn]

Hi Mulan,
Congrats on your MRI! I understand how exciting, confusing and overwhelming all that information is. I felt the same way when I got mine. I was so excited to finally have something show up, but then I was like, "OMG! What does this all mean?!?!" So, now you have a good indicator as to where your pain is coming from and a direction to go for treatment. Hoooraaaay!
NYT provided excellent feedback and I agree with her, too. I know you have some tough decisions to make and a lot of issues to deal with. Please remember that you're not alone and we're here to support you.
With love,
Karyn

[Mulan]

Thank you all for your kind words !
What is the next ? My PT told me one of a few her PNE patients who has this problem for 3 years has got much better by doing PT and having her husband doing PT for her at home. My PT said now her patient sit at work without cushion. It is encouraging.
I don't think Dr. Dellon will decompress the small nerves under vulvar. I haven't checked it with him yet but I doubt. Removing the scar to free small nerves will create new scars. right ? Any thoughts?
I am not sure if shockwave in Canada is worth to try. How much does it cost ? anyone knows ? how many sessions is required? has anyone tried this ?

[Karyn]

I am not sure if shockwave in Canada is worth to try. How much does it cost ? anyone knows ? how many sessions is required? has anyone tried this ?

Griff522 has tried this, as well as Pelvis Stressly. Hopefully they can provide you with some feedback about it.

I don't think Dr. Dellon will decompress the small nerves under vulvar. I haven't checked it with him yet but I doubt. Removing the scar to free small nerves will create new scars. right ? Any thoughts?

Well, there's only one way to find out for sure. I'm under the impression that Dr. Dellon is very responsive to email inquiries. Please try to contact him to explain your case and include a copy of your MRI report.

My PT told me one of a few her PNE patients who has this problem for 3 years has got much better by doing PT and having her husband doing PT for her at home. My PT said now her patient sit at work without cushion. It is encouraging.

Yes! That is very encouraging! But I'm wondering if this person had a true entrapment. Did your PT happen to say how long it took to achieve these results?

[Mulan]

I am not sure if shockwave in Canada is worth to try. How much does it cost ? anyone knows ? how many sessions is required? has anyone tried this ?

Griff522 has tried this, as well as Pelvis Stressly. Hopefully they can provide you with some feedback about it.

I don't think Dr. Dellon will decompress the small nerves under vulvar. I haven't checked it with him yet but I doubt. Removing the scar to free small nerves will create new scars. right ? Any thoughts?

Well, there's only one way to find out for sure. I'm under the impression that Dr. Dellon is very responsive to email inquiries. Please try to contact him to explain your case and include a copy of your MRI report.

My PT told me one of a few her PNE patients who has this problem for 3 years has got much better by doing PT and having her husband doing PT for her at home. My PT said now her patient sit at work without cushion. It is encouraging.

Yes! That is very encouraging! But I'm wondering if this person had a true entrapment. Did your PT happen to say how long it took to achieve these results?

Three years. My PT told me she doesn't think about pain /PNE stuff much now. So I assume PNE doesn't bother her too much now. I wish I could talk to her in person.

[Karyn]

3 years??? Would you feel comfortable asking your PT to contact this person, to see if they'll talk to you? It would be helpful to know the particulars of Cured by PT's case before getting your hopes up. I'm not saying this wouldn't work for you. We're all different and all have different pathologies. All PN or PNE is not created equal. I don't know if your PT realizes this or not.
xo

[nyt]

Mulan one caveat I forgot to mention is we don't know what the threshold of detection for scar tissue is for the MRI by Dr. Potter. I don't know is she knows or if anyone has asked her. I say this because even though on the MRI there appear to be areas without scar tissue there is always the possibility there could be scar tissue that is under the threshold of detection of the MRI.

As with any surgery you do run the risk of creating more scar tissue and re-en trapping the nerve. That is why so many of the dr.'s really want surgery as a last resort.

Dr. Dellon is great about answering emails and hopeful can answer your questions about how much of the nerve can they remove scar tissue from and at what point is the nerve too small for them to work on.

There are several threads on this forum on the use and results of pelvic floor PT. Read through but ultimately we are all different and what works for me may not work for you. If PT is helping you than by all means do that, if it is not or causing more pain than save you pennies for a different treatment that does work.