MRN: I found this place I’m going to... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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MRN

Vicknb profile image
14 Replies

I found this place I’m going to check it out. They are located all over.

If you have nerve pain please consider.

neurography.com/?gclid=EAIa...

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Vicknb profile image
Vicknb
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14 Replies
Vicknb profile image
Vicknb

click on the link

Pelviccrusader profile image
Pelviccrusader

I did it once. $4000. Got detailed info but never led to actionable data. Planning on trying Johns Hopkins neurography which is in network. Would love to know what others have found.

Traz60 profile image
Traz60 in reply toPelviccrusader

Please keep us informed. I live relatively close to Johns Hopkins and have been suffering w/pelvic nerve pain since my hysterectomy in June of 2016. Other devastating systems are beginning to manifest, literally from head to toe. I'm unsure if the symptoms are related to the Mesh surgery i had in 2016. I've just now begun seeing a new Neurologist for all the other symptoms, which have basically caused me to become housebound, except for Dr. appointments. I'd truly appreciate any update you can provide after your Neurography at Johns Hopkins.

Thank you!

Pelviccrusader profile image
Pelviccrusader in reply toTraz60

Will do. If I can take the hour and a half procedure with almost no padding! Your case sounds a little but like mine-issues head to toe. Do you have high neural tension leading to tight muscles and finally pinched nerves? Let me know if you find a good neurologist-mine are all worthless. I live in Rockville MD - Let me know if you want the names of two top rate physical therapists in the area. I would have no chance without them.

Traz60 profile image
Traz60 in reply toPelviccrusader

Pelviccrusader, I'll definitely try to keep you updated about my experience with this new neurologist. Unfortunately, his appointments are spread so far apart, I'm not too sure how this Dr./patient relationship is going to work out. My next appointment isn't until July 31st. The tests he initially ordered were completed on 7/2 & 7/3. In my opinion, that's a long time to wait for results. I could've had further testing already completed (if those tests didn't reveal what's causing my issues.) He could've saved me a great deal of anxiety with a short phone call to let me know whether or not those tests provided any answers. Oftentimes, I believe it comes down to how they can squeeze more money out of the insurance company and me, rather than a true desire to help patients find answers & possible solutions. In all honesty, I've become very dissatisfied with doctors in general. Especially specialists and their approach to helping their patients. I guess I've had too many bad experiences. It sounds like you've been through a few yourself. I wish I could answer to your question regarding "high neural tension leading to tight muscles & finally pinched nerves." I'm just now restarting this journey after my last failed neurologist visit back in 2016. Both my mother & MIL became ill and passed away over the same period of time. My focus was on taking care of their needs instead of my own.

I would really appreciate the names of the therapists you've been seeing. While Rockville is probably too far away for me, (I'm in Harford Co.) maybe they can offer the names of therapists closer to me? My ability to travel by car has been greatly compromised. I'm sorry for such a long reply. I can't seem to keep my responses to a minimum. Thank you again! Wishing you all the best on your efforts to find answers and help to lead a better quality of life.

anne77 profile image
anne77 in reply toPelviccrusader

I had a Tesla 3D MRI at Johns Hopkins about 6 months ago. I was told that it was the best machine out there (better than the outdated MRN equipment at the various locations @ The Neurography Institutes, which by the way are owned by Dr. Aaron Filler). This MRI did show that I had a couple of small labral hip tears, and a tear in my right hamstring, but did not show the nerves. In a followup appointment with an Orthopaedic doctor at MAYO, Jacksonville, he felt that neither of these very common problems in older patients had NO bearing on PN pain (although I have read a few articles that said it might). He sent me to a Physical Therapist who is teaching me some simple low impact stretches. I have felt some improvement, but from what I understand, it takes time and commitment!!

Godsgurl profile image
Godsgurl

I had a MRN with Dr. Filler. Be aware it is $2300 cash with an office visit with him extra. You can get detailed info but not every doctor including Dr. Hibner finds these reports credible. It was a very detailed report. Be prepared that Dr. Filler will push his procedures and surgery, He is a very smart guy however. Developed the technology.

Pelviccrusader profile image
Pelviccrusader in reply toGodsgurl

Wow-that’s a lot better than the $4000 that I paid. Maybe there are different rates in different parts of the country? What state are you in? Or did you somehow get your insurance company to pay part of it? I had no such luck

Godsgurl profile image
Godsgurl in reply toPelviccrusader

I had to pay to see Dr. Filler to get discount. I didn't even try to get reimbursed. Too much hassle being in so much pain.

Pelviccrusader profile image
Pelviccrusader in reply toGodsgurl

In your case did you get any information that provided a path forward on how you should be treated?

anne77 profile image
anne77 in reply toGodsgurl

I feel like Dr. Filler is very brilliant, but he is all about the $ now!

Pelviccrusader profile image
Pelviccrusader

Will do. If I can take the hour and a half procedure with almost no padding! Your case sounds a little but like mine-issues head to toe. Do you have high neural tension leading to tight muscles and finally pinched nerves? Let me know if you find a good neurologist-mine are all worthless. I live in Rockville MD - Let me know if you want the names of two top rate physical therapists in the area. I would have no chance without them.

Godsgurl profile image
Godsgurl in reply toPelviccrusader

Not really. I'm still going from doctor to doctor. Just had nerve blocks and botox with Hibner. Waiting on insurance approval for the Stimwave with Dr. Peters in Michigan. I am in San Diego!! Trying pelvic PT. The doctors who value the MN are Dr. Hashemi and Dr. Tollestrup. I have large Tarlov cysts in sacral. Trying to avoid surgery. Its been 8 months of hell. I was managing it for almost two years. Its crazy how this can flare up again no matter where you are in recovery.

kalecolbe12 profile image
kalecolbe12 in reply toGodsgurl

Hi I live in Phx and have pelvic floor dysfunction...going to a pt and on Flexeril..i may be a candidate for pelvic floor Botox but doc hibner is not on my current ins although my colorectal doc does it also .what symptoms have you had and what is your story...just trying to connect and see how Botox works for other people.they say it takes a few weeks to work if it's going to work.. my name is Audrey and my email is mbhs21@gmail.com if you wouldn't mind staying in touch with me

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