I have begun research to identify centers and researchers who are working toward cure for trigeminal neuropathic pain. Although the results are very thin on the ground so far, early in the process of this research, I was tipped off to a relatively new Internet resource that looks very useful for anyone who deals with a chronic medical disorder.
After you've signed up, Medifocus Digest Alert will send you a monthly list of new abstracts on your medical disorder(s) of choice, which have been published in the Pub Med database at the US National Institutes of Health. This service saves you from having to periodically wade through Pub Med on your own. I note that some of the other disorders with communities at Ben's Friends, are also represented in their disorders list.
Though I haven't purchased one for myself yet, Medifocus offers a 125 page guide book on Trigeminal Neuralgia which promises the following summary table of contents:
What are the risk factors of Trigeminal Neuralgia?
What standard and alternative treatment options are available?
Where are the leading doctors, hospitals and medical centers that specialize in Trigeminal Neuralgia research and treatment?
What are the results of the latest clinical trials?
Where are the support groups and additional resources in my area?
What are the promising new treatments on the horizon?
Please feel free to share this resource (link above) with other patients among Ben's Friends.
Read this post with lots of interest. Trying not to get too overwhelemed with info. Need a binder for everyting I've printed already and trying to spend time each day reading. The last links you sent me except for the doc from SB Inst. have been read.I was thinking that some of the material from PubMed was dated 2009 and wondering if there is more current stuff. Seems this info you have might be it. The link to Fosters account raised a ?? for me when she mentioned the surgeon wasn't doing multiple surgeries during her OR visit. Big question for me was is this sometimes standard practice??? especially when it is MVD surgery and what does that mean? I'm still all over the map having to look up meaning of words like "merocel, rhizotomy, venous compression but maybe I'm just not starting to research with the right material first. It's a journey. Deb
The most important research you can do is to determine what type or multiple types of TN you have. You may spend untold hours doing research on procedures that are not recommended for your particular type of TN.
Secondly, it's important to learn all you can about your type, so that you can communicate your needs, questions and concerns with your doctor.
It's an unfortunate fact of life here, but too many doctors aren't trained in TN since it's considered a rare disease/condition. You will meet many members here who can tell you that they have had to "train" their doctors.
I've never heard of a surgeon doing "multiple surgeries" at one time. I rather doubt that it is standard or even acceptable practice.
Realizing that the terminology is foreign to many, Gloria has started a Glossary as a tab from our top menus. She, Stef, and I have also written a set of "Face Pain Info" pages (click directly on that tab) that organize a lot of this material into a series of logical questions. Feel free to visit.
Hi Gloria ...nice to have another friend. Thanks for your response. I have seen a vascular surgeon a year ago who was ready and willing to operate...sign on the dotted line he said and I backed off for a couple of reasons. I went running to him because I had been living in pain for 2 years as a result of being undermedicated which I didn't know but having switched Neuros is how I found out. So basically from 2008 to Nov 2010 I just wasn't on track with anything because of the pain.
Had I been connected to this website I might have had a different experience....but it is a learning process and I know now that the learning has to be done by me. I think every Neuro office should have a literature book of resources for TN diagnosed patients. Mine has none and she's in a hospital. A friend sent me a link to a support site a year ago but I couldn't connect for some reason...good thing I tried again.
I'm a hard head though, just coasted these past 10 months cause I was finally out of pain. My blinkers were on and I had other issues mainly major dental to deal with so........maybe I'm still not with the right neuro yet. The doctor I saw briefly was top notch in our city and listed on Kaufman's website but I think I gave the impression I didn't need to know any more about the surgery...big mistake but sometimes that's the kneejerk reaction to pain and when you learn a little you hesitate, fear, etc.
It's an unfortunate fact of life with TN, that patients become so desperate for a "cure" that they are willing to "sign on the dotted line" before they understand what they're getting themselves in to.
It's also unfortunate that many neurosurgeons are more concerned with their bank account or gaining numbers in their surgical experience statistics, than the well-being of their patient. That's one of the benefits of being a neurosurgeon...do the surgery and then never see the patient again.
Another little known fact is that many neurosurgeons are on retainer with MVD equipment supply manufacturers and receive a monetary bonus for each surgery they do using that equipment. That has to color their judgement.
It breaks my heart to hear from members here who jumped into surgeries or procedures before they did their homework. Even on a good day, any brain surgery is a risk. There are a long list of surgical complications that members here would tell you they never imagined would happen to them. That's why I started the FAILED PROCEDURES group. In the hope that some here would have information available to them to make an informed, intelligent decision.
With Gloria, I see the same economic self-interest in Gamma Knife being pushed on patients by doctors who wish to remain affiliated with hospitals that have spend millions on a Gamma Knife Center. I'm not sure the retainers are always quite so obvious, but certainly the economic self interest does occur. It even operates in unrealistic outcomes statistics quoted by the International Radio Surgery Association in its practice standards.
It doesn't always help, but there's an interesting question that one may ask of a surgeon who proposes to "do procedure X" on you: "if I was a member of your family, to whom would you send me in this area to do the operation you recommend?" If the doctor doesn't address that question immediately and without argument, I'd have reservations about having them operate on me.
Great question to remember when that time comes again for consideration Red. I think that the #'s of surgeons in Canada able to do this work are probably more limited than in some other countries and Gloria I hear your comments about the "self interest"factors that are at play too. I have cast my eye to the US only as another locale for the surgery but may be starting to backtract a little on that.