New and desperate for help - please!

[Violet M]

Desperate,

Did this just occur out of the blue or was there something that could have precipitated it?

I think in your fiance's case that it is important for him to see a neurologist just to have possible neurological causes such as multiple sclerosis ruled out. Also MRI of the pelvic, lumbar, and lumbar sacral areas are considered important to make sure these isn't some obvious underlying cause and to rule out cauda equina for sure. Has he been checked for lyme's disease? There are so many diseases that can cause similar symptoms as PN and they really need to be ruled out.

There are some excellent PN physical therapists in Ontario. Definitely have a look at this link and get in to see one of them if possible. http://www.pudendalhope.info/node/62

Violet

[DoubleEdgedSword]

Desperate,

I'm so sorry your fiance is dealing with this, & hope that he won't give up hope that he can be well again.

Doctor Gordon is probably the best one to see in this area, but you MUST get a referral to him from your doctor. The clinic only accepts their own referral form, if I'm not mistaken, so go to the Mt Sinai website, & download the forms. There is also one for patient intake: very lengthy, but have him fill it out, get your doc to complete the referral, & mail them away as soon as you can. It can take about 6 months to get an appointment there, but Dr G is very thorough, & will give your fiance a treatment plan & several options to consider.

In the meantime, if your own doc can prescribe a topical ointment with lidocaine & gabapentin in it, that may ease your fiance's pain until he sees Doc G.. Many of us have tried various medications, & it's a matter of trial & error to see what works best without giving too many undesirable side effects..

Good luck to you, & I hope you'll be on track soon to getting in to see Dr G..

[desperate]

Hello Violet and DoubleEdgedSword,

Regarding the diagnosis of PN that Violet had mentioned - we are strongly certain that this is PN or PNE his symptoms match up exactly and yes this was caused by an accident. We've already done an MRI of the lumbar sacral and results came back negative.

Thankfully, I believe luck has been on our side because we got an appointment to see Dr. Gordon for April 22nd. Our family physician is connected to the Mt. Sinai hospital not to mention we new a chriopractor that knows him as well and sent a letter to him. With that being said could anyone tell us what we are to expect at this appointment, will Dr. G run tests or will he have to book those?

My Fiance (Domink) has also spoken to Dr. Kirk Andrew- and filled out all his required paperwork. Dr. Andrew also believes according to the symptoms and the paperwork Dominik filled out he feels that he does in fact have PN.

Right now Dominik is seeing Kathy Ng - she is parteners with Nelly Faghani and unfortunatley the wait to get a first appointment with Nelly was in May..the 13th I believe. Kathy has treated patience with pelvic floor dysfunction and is following the same practice as Nelly in regards to treating PN. Dominik has not experienced this getting better but I understand this could take time. He continues to do at-home stretches that are from the Heal Pelvic Pain book and from Kathy 2-3 times a day.

This week we got an appointment to do an MRI at Hollis Potter's hopsital - does anyone know if she will review this?- We made the referall look exactly like it is posted on the forum.

Thank you all for your support! We truly appreciate all of the guidance and words of courage.

[Violet M]

This week we got an appointment to do an MRI at Hollis Potter's hopsital - does anyone know if she will review this?- We made the referall look exactly like it is posted on the forum.

In the past Dr. Potter has reviewed MRI's but things can change, so to be certain, I would call and make sure the referral says what they want it to and to make sure Dr. Potter will be the radiologist reading the MRI.

That's great news that you have already gotten an appointment with Dr. Gordon and the pelvic floor PT's. I am a little nervous hearing about the stretches. Not sure exactly what she is having Domink do but as someone who had a nerve entrapment, when I did stretches they made me worse over time. If the nerve is compressed between 2 ligaments, certain stretches will cause the nerve to stretch because it can't glide. What makes it so difficult is that people who don't have a nerve entrapment may find relief from stretching the pelvic floor so it's hard to know whether to do them or not. Anyway, I would just ask Kathy about this and see what she thinks. You might want to read Stephanie's article found at this link. http://www.examiner.com/article/pudenda ... utt-part-2
http://tinyurl.com/lkdaq4u

Take care,

Violet

[DoubleEdgedSword]

Desperate,

I'm so happy you got in to see Dr G so soon. It's great that you have a letter from Domenic's chiro.. That being said, the first appointment is about an hour. Dr G will take an extensive history on Domenic, & will do some sensory tests (touch tests) to see where he is hurting. He's very gentle, so no worries. He will likely make a treatment plan & discuss this at this appointment too. It may include meds, an EMG, or whatever else he may suggest based on his findings..

I wish both of you luck with your upcoming appointments & procedures.. You've finally got your foot in the door, so here's to smooth sailing for you both!

[desperate]

Here is a brief synopsis of the results of the MRI with Potter:

MRI of the pelvis demonstrates asymmetric proximal thickening of the left sacrospinous ligament, effacing the fat planes of the left pudendal nerve. The pudendal nerves in the posterior margin Alcock’s canal are unremarkable. At the pelvic floor, however, there are prominent pelvic floor varices posterior to the pubic symphysis, around the suspensory nerve to the penis, and effacing fat planes of inferior perineal branches of the pudendal distribution. Varices do not, however, course with the dorsal nerves to the penis. Small left-sided varicocele is noted.

I'm really not sure what this all means, has someone come across this type of information before? Can someone please try and help explain this all to me.

My family physician has no idea what this all means...and I'm hoping that Dr. Gordon can help me understand all this as well.

[Violet M]

Hi Desparate,

First of all keep in mind that Potter MRI's are not 100% diagnositic for pudendal nerve entrapment so you will need to see if this report coincides with what a pudendal nerve physician confirms.

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. It would be interesting to know what percentage of the population who are asymptomatic also have pelvic varices. However, with that said, you might want to contact several of the PNE surgeons to find out if they have ever seen successful resolution of pelvic pain after embolization of pelvic floor varices in their practice. My obgyn told me that she sees women with pelvic varices all the time who do not have pelvic pain.

The thickening of the left sacrospinous (SS) ligament could be significant especially if it coincides with your symptoms. The question would be -- is your pain primarily on the left side? The pudendal nerve runs between the sacrtotuberous and sacrospinous ligaments at a place sometimes referred to as the ligamental grip that is near the ischial spine, a bony prominence deep in the pelvis. If the SS ligament is thickened it could be impinging on the pudendal nerve but I think it's important to have other diagnostic tests that would confirm this is what's going on before deciding on treatment. Hope your appointment with Dr. G. will give you more answers.

If your MRI showed a backup of blood in the pudendal blood vessels near the ST/SS ligament grip, according to reports I've heard from patients of Dr. Filler, that could possibly be indicative of pudendal nerve compression since the pudendal nerve typically runs alongside the pudendal blood vessels, but I don't see anything suggestive of that in your MRI report.

If I recall correctly, you were in an accident that may have precipitated your symptoms? If that's the case, I think it would be important to be evaluated for any musculoskeletal misalignments that could be contributing to your problems that might be corrected through manual therapy. Just something to keep in mind.

Take care,

Violet

[desperate]

The thickening of the left sacrospinous (SS) ligament could be significant especially if it coincides with your symptoms. The question would be -- is your pain primarily on the left side? The pudendal nerve runs between the sacrtotuberous and sacrospinous ligaments at a place sometimes referred to as the ligamental grip that is near the ischial spine, a bony prominence deep in the pelvis. If the SS ligament is thickened it could be impinging on the pudendal nerve but I think it's important to have other diagnostic tests that would confirm this is what's going on before deciding on treatment. Hope your appointment with Dr. G. will give you more answers.

Yes, the pain is primarily on the left side and I strongly believe it relates to all of my symptoms perhaps even solves the question why my legs experience tingling sensation because it also passes behind the sciatic nerve (if I'm not mistaken).

Does anyone know how a ligament can be restored? Is this a surgical procedure? I will now be updating my PT on these results and see if she has any suggestions.

Thank you
Dominik

[stephanies]

Hello Dominik,

The pudendal nerve can be entrapped between the ligaments. The ligaments are severed in the typical TG pudendal nerve surgery to release the nerve and, hopefully, allow healing to take place and a reduction in pain to occur. Some surgeons repair the ligament after the nerve is released to help with pelvic stability. The pudendal and sciatic nerve both run under the piriformis muscle, but I do not believe that the sciatic nerve runs near the ligaments.

I am sorry you have had such a difficult time lately. Has your pain changed at all over the last month or so? Have you seen any improvements from PT? How many sessions have you had?

Wishing you better days,
Stephanies

[desperate]

Hi Stephanie, its good to hear from you again

Is there anyone you know that has undergone the TG approach, I'm not to full of knowledge on how this surgery goes. I'm considering seeing Dr.Filler for a second diagnosis and wondering if he can perform an MRN. But I'm trying to understand if I will benefit from this or is it counterproducting Potters MRI.

As for how my symptoms go...they've gotten worse and worse! I am now experiencing lower back pain and the inability to stand for long periods of time. PLUS, my biggest concern is how freezing cold my legs are - but when I get someone else to touch them they are warm. This occasionally occurs in my feet as well...i'm wondering if there are any solutions for this for the time being. I feel as though because the nerve is entrapped PT was not a good solution for me. As Violet has said to me that it may not be such a good idea because you don't want gliding to happen which could entrap it even further...I went for 4 PT sessions and this past Monday is what really made me flare up even more.

Thank you for your help once again,
Dominik