Hello everyone…I have been fighting TN for 2 years now and I’m ready for surgery. I had the radiation on my brain but it has came back and the pain is more intense.I’m wondering if anyone lcoal has had the same procedure with Dr fullest at UNMC of Nebraska.if so please give me input on the surgery itself and the Sucess rate. Thank you in pain…
Brenda, I assume by "radiation" you intended Gamma Knife, and by "ready for surgery" you are implying MVD. If either doesn't happen to be the case then correct my assumptions please and we'll start over.
In classic (typical) TN the success rate for Gamma Knife as a first procedure is about 85%, with half of all patients having pain recurrence within three years (from 2010 statistics quoted in the practice standards of the International Radio Surgery Association). Stats on MVD used as a second procedure are harder to come by in medical literature. Talking with a couple of neurosurgeojns (including Peter Janetta and Ken Casey) over the years, I was told that GK can make a following MVD more complicated by causing scar tissue around the nerve and in some patients arachnoiditis (attachment of the nerve through scar tissue to surrounding tissue). MVD used this way drops statistics from 90% successful in typical TN to something more on the order of 50-70%. MVD is these days being used less often in cases where the dominant form of pain is atypical TN with its constant burning and throbbing 24-7 -- partly out of concern for possibly causing further damage, and almost certainly because success rates for atypical TN are more on the order of 40-50% rather than 60% as a second procedure after an earlier MVD.
If anybody else has references from authoritative medical literature, please join the discussion and add your information.
Regards and best
Those number sound about right. The problem I have with them is they reflect cumulative figure from the "great" and "not so great" Not to mention each of the centers reporting USUALLY have a differently defined cohort.. Meta Analysis examines a number of valid studies on a topic and mathematically combine the results using accepted statistical methodology to report the results as if it were one large study. While meta analysis is large part what I did for 40 years, the only GOOD use for it in my opinion was to determine the validity of the studies you were studying. There is some real bad research/studies out there.
While I would never discount this data, it would only be a small part of my decision process. What is important there is just how many cases LIKE YOURS (and I mean just like yours) Dr fullest and UNMC see a year, what they do and what the results are for them. Red has I believe some recommendations as to numbers of procedures performed, that indicate whether or not the guy is any good.
For example he could claim a 100% success rate but if he only did 1, he has no data. While Red and I both lived by numbers in our professional lives we have a few differences of opinion. But I think we can agree that a sample of 16 cases only has about a 75% chance of being accurate.
The other issue is there really doesn't exist the cohort studies to make meta-analysis valid. MUCH of what we read comes from "headache Centers" and private "neurolgy centers" that as is much sales material as evidence based data. Here is a pretty good explanation of evidence based medicine. and the pyramid for research:
Thanks for wading through this, TJ
Facial neuralgia and neuropathy are relatively rare. It's often difficult to find a precise comparison between one patient and others that a doctor has seen over a period of years. I do encourage patients to ask how many others a doctor has treated and over what period of time, whose symptoms closely resemble their own. I also encourage them to ask how many times in a year a doctor performs MVD or Gamma Knife with facial pain patients. If the answer to either question is three or four, then I'd be cautious in recommending the doctor to a family member as it seems to me that there may be a substantial learning curve still to be climbed. If the answer is closer to 50 patients per year, then I'd have more confidence.
As far as meta-analysis is concerned, the sorts of references that doctors have suggested to me in the past are outcomes analyses of multiple consecutive cases in a given hospital or practice. Stats on MVD for both Typical and Atypical TN have been reported that way, for numbers of cases varying from 300+ to over 1200 (Peter Janetta's papers in the NEJM. While there are certainly sources of error in these large case collections, there are fewer opportunities for statistical errors to creep in. I would agree with TJ that 16 cases is a relatively small cohort, for which a variation in conditions for one case might cause significant changes in outcomes overall. Thus that small a study is inherently subject to uncertainty, even granting all of the good will and skill in the world. The surgeon may very well be very good. But the patient has no reliable way of being certain when the numbers are small.
Thank you for all the information you are providing me with. I have an appointment Friday with the neurosurgeon. My pain doctor upped my medication today to 200MG of Tegretol three times a day, and Lyrica 300MG a day, Also gave me a new script Amitriptyline 25MG at night. I am not getting any relief, but am hoping to sleep this evening . I am making a list of things to ask the doctor on Friday. So again thank you for all of your input.