My experience and update with Dr. Marvel

[Violet M]

That's good you are getting some 2nd opinions and doing lots of research. Good luck with your appointments with Dr. Marvel and with PT. Follow your instincts....

Violet

[Hopeitworks]

October 19, 2017 follow up with Dr. Marvel to discuss MRI results and plan of care.
My MRI results were as follows:
FINDINGS:

NERVES: Intramuscular course of the proximal S2 nerve roots through the piriformis, proximal to the sciatic foramen.

MUSCLES / TENDONS:

Bilateral gluteal insertional tendinopathy with associated mild trochanteric bursitis.

BONES: Unremarkable

JOINTS: Unremarkable

VASCULAR: Unremarkable

MASSES: No mass is seen.

Other: Prominent bilateral ovarian follicles noted.

Dr. Marvel explained that my S2 nerve is going through my piriformis muscle. He suspects I was born with this deformity and as I aged it become asymptotic. Violet you were 100% correct when you replied to my post “I got my MRI results, but don't know what they mean”.

Dr. Marvel thinks my mechanical problem with the S2 nerve being trapped in the piriformis muscle could be the cause of my bilateral burning thighs and PGAD. Dr. Marvel referred me to Dr. Howard Richard, Associate Professor of Diagnostic Radiology to inject a steroid free nerve block in my spine. He will not be injecting into the pudendal nerve, but the S2 nerve through the spine.

I requested a steroid free nerve block as I have read they are bad for you. I even brought the article Violet posted and showed it to Dr. Marvel. You will never believe what he did with the article… He said may I make a copy of that article as I misplaced mine. Guys – I almost fell out of the chair.

He said if the nerve block doesn’t work than he feels it may be a chemical imbalance in the brain marked by high dopamine levels. Therefore, he recommended Ambien or Chantix. I told him I was on Ambien several months ago and it caused my desire for sex to sky rocket. He suggested I try Chantix. I explained my insurance would not cover Chantix unless I was attending smoking sensation classes. He said when I turn the prescription into the pharmacy he will explain I am using it as an off-label drug. Hopefully the insurance company goes along with it.

My appointment to get the nerve block with Dr. Richard is scheduled for November 13, 2017. I requested a call from Dr. Richard to explain to me why I have pain in the front and sides of my thighs, when the S2 nerve usually causes pain in the back of the legs. I asked Dr. Marvel what his opinion and he stated everyone is different.

The next step Dr. Marvel would like to try if the nerve block has no effect is a pelvic venography. I have to do some research on venogram, because I have no knowledge to even express if it would be beneficial in my case.

But you know what Ladies and Gentlemen it was a good appointment with Dr. Marvel. He was welcoming and kind. He talked to me about a conference he recently attended about PGAD and showed his invested interest in helping patients that have PGAD.

Oh I almost forgot... Dr. Marvel said he did not want me to do Psychical Therapy at this time due to the nerve being trapped. The likely hood of PT helping is not hopeful. However I am keeping my appointment in Dec, just in case so I don't get stuck waiting 3 months to get an appointment.

Wishing Everyone Pain Free Days,

Hope

[Violet M]

Hi Hope,

Glad your appointment went well this time. I met Dr. Marvel and Dr. Richards at a conference once. We all sat around a table after one of the conference meetings in the late evening before our flights home and discussed PN issues. My impression of him and Dr Richards was that they truly care about their patients and are trying to help them. Do they always have perfect answers, perfect solutions, perfect bedside manners? I'm sure not, but they are just humans like we are. It sounds like he is trying to help you solve this puzzle in the best way he knows how. I wish you the best in figuring this out and coming to the right solution.

Violet

[Hopeitworks]

Hi Violet,

I requested Dr. Richard call me prior to my nerve block appointment because I have several questions.

1. Since I don't suffer from PGAD 24 hours 7 days a week, if I received a nerve block when I am not suffering from PGAD how beneficial would it be for me. Could we base it off of the thigh pain disappearing if the thigh pain is related to PGAD.

2. If the S 2 nerve is the cause why don't I feel pain in my buttocks or back of legs. I only feel the burning thigh pain on the sides and front of the thighs.

I have a few other questions written down, but can't remember them right now. Either way I will post an update.

I am excited to meet Dr. Richard! I am taking one day at a time. Some days are really bad and I lose hope, other days I fight to get better. Knowledge gives me power and since I don't have control over my symptoms gaining some type of power makes me feel better.

Thank you for replying it's greatly appreciated!
Hope

[Violet M]

Hi Hope,

It wouldn't hurt to ask if Dr. Richards is he could work you in on a day you are having symptoms. The worst that would happen is he would say "no" so it seems worth it to at least ask.

Violet

[Hopeitworks]

October 25, 2017 Update
My upcoming appointments with Dr. Richard (to get nerve block) was rescheduled for November 15, 2017 and my follow up with Dr. Marvel is now November 16, 2017.
Dr. Richard called me this morning and we discussed my questions and preparation for the nerve block.
I asked him if Dr. Marvel sent him the entire report of my findings of my MRI, he said no that he only sent the finding of the S2 nerve roots going through the piriformis muscle. Which I guess is fine considering the bursitis in my hips has nothing to do what PGAD of Vulva pain.
Violet I asked Dr. Richard if he would work me in when I am having PGAD symptoms and he said he cannot do that, it just doesn’t work that way.
I asked him these questions:
1. Since I don't suffer from PGAD 24 hours a day and it varies day to day, but I do have it every day. I just don’t know when it’s going to hit me and for how long. If I received a nerve block when I am not suffering from PGAD how beneficial would it be for me. Could we base it off of the thigh pain disappearing if the thigh pain is related to PGAD.
Answer: Dr. Richard said that is a good question and let’s just see what happens.

2. If the S 2 nerve is the cause why don't I feel pain in my buttocks or back of legs. I only feel the burning thigh pain on the sides and front of the thighs.
Answer: Dr. Richard said since the S2 nerve root is going through the Piriformis muscle ad has been since I was born anything is possible. He said technically if you look at the S2 nerve it should cause pain in the back of the legs.

3. I asked Dr. Richard if the nerve injection would cause PGAD or make PGAD worse.
Answer: No, it would not make any permanent changes since the block will only last 4 hours.

What I don’t understand is why doesn’t Dr. Richard do a face-to-face consult to form his own opinion. Instead he is going off of everything Dr. Marvel says. But maybe Dr. Richard will take some time prior to my appointment to get to know me.

I have been trying to do research own the S2 nerve root being trapped in the piriformis muscle, but I only find piriformis syndrome or complications with the sciatica.

Wishing Everyone Pain Free Days,
Hope

[Violet M]

Hi Hope,

That sounds pretty typical because they probably have to book rooms for procedures ahead of time in the hospital and it's probably not cost effective to cancel procedures at the last minute. Which obviously doesn't help a patient who is in your predicament. Are there any activities that you can engage in ahead of time that you know will flare-up the PGAD? Flaring things on purpose doesn't sound like an appealing route to go though.
Are you having a block with just marcaine/numbing agents but no steroids?

I think you have very good reason to wonder why you would want to have a nerve block to S2 if it's associated with pain in the back of the legs and that's not where your pain is. My understanding is that S2 also feeds into the pudendal nerve, so that might be one rationale to try it. There could possibly be other nerve involvement though such as meralgia paresthetica. https://www.mayoclinic.org/diseases-con ... c-20355635 Another nerve to consider with PGAD and anterior thigh pain is the genitofemoral nerve. I think it is easier to block than the pudendal nerve because it's not as deep and it's just a sensory nerve without motor involvement.

I don't think interventional radiologists typically do consults with patients. They just perform the procedures that other docs order. It's nice that he was willing to at least answer some of your questions before hand though.

Good luck with your procedures. I'm sure it feels like forever until you have them. In the mean time -- might be worth it to try some PT. A good PT or manual therapist might be able to shed some light on your diagnosis.

Violet

[Hopeitworks]

Yes, there are some activities I can engage in to aggravate the PGAD and cause it to flare. I was told the nerve block will only last 4 hours, and they are not using steroids. I am not sure if that means they are numbing it or what, but I will find out.

6 years ago when my thighs started burning I saw a Neurologist one time and he said I had meralgia paresthetica. He didn't do any tests, just told me to stop wearing jeans. I walked away confused and frustrated. I am not overweight or he would of said that is the cause.

Would an MRI show meralgia paresthetica? Maybe I have more than one issue going on. Either way I am tired of being confused. My findings from the MRI don't match my symptoms other than the bursitis. If it where my S2 nerve I would have pain in the back of my legs and I don't. However when I challenge that question I am told everyone has different symptoms. I have tried to research S2 nerve root stuck in the piriformis muscle, and the only thing that I can find is piriformis syndrome. Which my symptoms don't match that either.

I feel the thigh pain is key to PGAD and Vulvodynia, I just have to figure out how they connect. I will ask the doctor about the genitofemoral nerve, since that seems to match my list of symptoms. If you think of anything else please share your ideas.

I will be sure to update after the temporary block in November.

Hope

[Hopeitworks]

Thanks Violet for the info so I could ask my doctor these questions. Below is what I emailed him.


1. Could the lateral femoral cutaneous nerve cause PGAD?
2. If Meralgia paresthetica cause ateral cutaneous nerve pain in my lap (front of thighs), could it also cause PGAD?
The reason why I am asking is because my symptoms don’t match with the findings of the MRI exactly. Meaning I do not have pain in the back of my thighs, and it is my understanding the S2 nerve causes pain in the back of the thighs.

[Violet M]

Hi Hope,

I know it can be very frustrating figuring all of this out. It is very common for people with pudendal neuralgia symptoms to have more than one thing going on so you really need to look at the whole pelvis. That's where a good PT can be helpful because if there are any musculoskeletal anomalies accompanying your PN, they might be able to help you sort those out. Hopefully Dr. Marvel will have some good insights for you on those questions.

Violet