Unfavorable Impression After Speaking with Physician's Office

General General TN & GPN (Old Site)
1

Over the past year, my wife has seen a dentist, an internist, an opthomologist, and a neurologist in an attempt to address her issues with what appears to be TN-II. She has been tested for Lupus, Lyme Disease, and whatever other blood tests a neurologist typically orders. She had a CT scan of her sinuses, and the opthomologist ordered an MRI of her orbital area. She has not had a Fiesta MRI. All of these tests came back negative, and she is currently on neurontin after having a severe allergic reaction to carbamazapine (Tegretol).

I am in the process of trying to find a physician or clinic that sees a lot of TN so that we can start anew and possibly get a more comprehensive evaluation and diagnosis. At this point, I am not in search of a surgeon for the purposes of surgery--but it appears that the vast majority of physicians who have expertise with TN are, in fact, neurosurgeons.

I just got off the phone with a neurosurgeon's office at a major teaching institution. I wanted to discuss the possibility of bringing my wife there and to learn about such thing as insurance, wait time, referral requirements, etc. The "help team" member was more interested in whether or not I've discussed this with my wife's current doctor than she was about my wife's condition, history, etc. She readily admitted that her employer sees TN patients and that they accept self-referrals, but she left me with the impression that I was somehow doing something wrong. She even suggested that it might be more appropriate to have our local neurologist order a Fiesta MRI to be done at this distant institution to determine if surgery were actually necessary. By the time we were done talking, I felt like I had screwed the pooch and should be going to a neurologist rather than a neurosurgeon.

The next time I will be certain to preface all of my questions with a detailed explanation of the level of incompetence that we've experienced thus far and why we want to cut ties and move on. Maybe some of you more experienced sufferers can tell me what I did wrong and how one goes about accessing the keys to the castle.

2

You got good advice UK. I realize you feel some frustration, but it appears to me that you have also not been treated with incompetence.

At this stage your wife needs a reliable diagnosis before anybody starts talking about MVD or RF Rhizotomy. That is normally accomplished after a neurological workup and is done solely on the basis of her patterns of pain and triggers. MRI can at most confirm that there are vascular compressions. But your wife can still have Type II TN, even if conclusive evidence of compression is not found in imagery.

You'll need to have your wife's medical records duplicated and/or sent digitally to the physician you intend to see for a second opinion. That means contacting her primary care provider and arranging for the records to be forwarded. Likewise, a FIESTA MRI procedure may be more expensive in a University setting than at a local MRI center. Many neurosurgeons won't see a patient at all unless that procedure has already been performed and assessed by a radiologist. So you have a few things a bit backwards, UK. Not hard to straighten out. But beating people up for their "incompetence" isn't a particularly constructive way to form a relationship with somebody whose help you need.

Go in Peace and Power

R.A. "Red" Lawhern, Ph.D

Resident Research Analyst, LivingWithTN

3

I'll tell you what I did ---- I emailed Dr. Ken Casey in MI

He wrote the book on TN

He gave me free consulations on email --- you can give it a try --- just google him

I flew from MO to MI to have my MVD with him - he's really, really helpful --- that is an understatement

I did NOT start out with surgery questions -- I was looking for somebody local to help me besides neurologist here --

Sometimes best help is not in our own back yards unfortuneately