Went to a neurosurgeon the other day. He explained both the MVD procedure and the rhizotomy. Said he prefers the rhizotomy. Having a difficult time deciding which way to go. What have people had, and how effective and long-lasting were the results?
In general, MVD has comparable rates of initial success and considerably longer persistence than RF Rhizotomy. RF, on the other hand, is cheaper by a long shot, which is important if your insurance doesn't pick up the entire tab.
Balloon compression is also a form of Rhizotomy, as is Glycerol rhizotomy -- but both procedures have much less consistent results than either MVD or RF. I think you may benefit from reading a scholarly article on MVD and Rhizotomy, which was published by the TN Association in the late 1990s, with permission of the medical journal that originally carried it. Please see attachment.
Regards, Red
Thank you very much for the info! Now all I need is to find the best surgeon that I can. Do you happen to know of anyone in the Pittsburgh, PA area? My doctor had mentioned that Philly was one of the central "hubs" for performing the MVD surgeries. God bless you!
Oops! I meant to say in Pittsburgh, PA!!!!
Allegheny General Hospital in Pittsburgh would e a good place to go, Lisa. Peter Janetta who popularized the procedure trained a number of students there and several are still residents.
regards, Red
Dr. Ben Carson at Johns Hopkins in Baltimore pioneered the injection point for the procedure that elimenated the need to "poke around" for the Trigeminal nerve.
He did my MVD surgery in October of 2009. I am happy with the results. While I am still on medication, it is a very low dose and my pain level stays around a one as opposed to a eight or nine before the surgery.
Whatever you do, I wish you all the best!!
Stefanie
Thank you Red and Stefanie for your suggestions.
I had my MVD surgery in 2007 with Doctor John Y.K. Lee. He is a well respected neurosurgeon at Pennsylvania Hospital in center city Philadelphia. I had great success with 3 years of no pain. Unfortunately, my pain came back in 2010 and now I'm back on meds to treat it. I had an MRI when the pain returned and they found a new vein pressing on the trigeminal nerve. I highly recommend Dr. Lee. He explained my options very well and made me feel very comfortable before, during and after surgery.
I had Dr. Janetta do my last MVD and he was great. I had a Rhizotomy done and it only lasted 6 months for me. some people might have had better results.
Dave
I had MVD surgery in April of this year and thought I was pain free, however in August my pain started slowly returning and I am now back on medications. My Dr. thinks I might need the Rhizotomy procedure done now. I really don't want to go through another procedure, but the side effects of the medication are horrible. I am really torn with this decision. If I am going to have it done, I really need to before the end of the year for insurance reasons.
Anyone have any suggestions on this.
Thank you
Donna
Rhizotomy following MVD can be something of a shot in the dark. A lot of neurosurgeons discourage the use of destructive procedures (ones that deliberately cause a lesion on the nerve) following either MVD or Gamma Knife. Some patients get worse rather than better from a Rhizotomy after MVD.
If you have any options at all with regard to getting a better balance between primary effects and side effects in medication, then you might be well advised to explore them. Alternately, some patients benefit from a second MVD. A lot would depend on the nature of your initial pain versus the pain that seems to be returning.
Regards and best,
Red
Thanks Red,
My doctor does not want to do the MVD again, he didn't explain why. He said if medicine does not work, which it didn't before then the Rhizotomy is the next step. I have type 2 TN. The pain is not as bad as just before my surgery, but I can feel that it is getting worse over time. I have changed from tegretol because of side effects to trileptal, but I have not been on it except for a week or so and just now coming off the tegretol.
Why do some patients get worse after these procedures?
Donna
"Why" is a question that might not have a single answer. However, we know that the response of patients with ATN is not as successful in most of the surgeries, as those who have "Typical" TN. Likewise, one of the causes of pain following destructive procedures may be that when nerve signaling is interrupted, the Central Nervous System "notices" the absence in the same way it does in phantom limb pain for amputees. For facial pain, the result can be a form of "deafferentiation" pain, if the CNS attempts to "find" the areas that have been denied access, and either routes around the blockage or grows sensitized to the least stimulus that DOES somehow get through. In MVD itself, excessive manipulation of the nerve when looking for blood vessel impingements may cause further or deeper damage to the myelin layer on the nerve, or open up unintended inter-communication paths between dissimilar nerve fibers. So there are multiple plausible causes for fast pain recurrence following MVD or Rhizotomy.
Regards, Red
I really want to get the MVD surgery. Would like to get it as soon as possible. I am still trying to find a hospital AND surgeon that are "in-network" for my insurance. One hospital told me the cost of the operation, including everything, is $100,000. Is this what others have found? Or is this hospital wanting to take me for a ride?
From what I've heard, the numbers seem to be up in the range that you name, Lisa. They shouldn't be, but they are. We're talking about a procedure that typically lasts about 2.5 to 4 hours and involves a team of two neuro surgeons, anesthesiologist, radiologist, a couple of technicians and a couple of senior operating room nurses. It isn't uncommon for hospitals to charge over $10K per hour just for the operating room. And an average neurosurgeon is billing for over half a million dollars income per year for ~1800 hours work. Your semi-private hospital room will cost over $1000 per day for a two to four day stay. It all adds up.
Further data on this question are provided at "Answers.com" from which the following notes are extracted:
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"However, in California in 2008, a microvascular decompression procedure which cured a patient of trigeminal neuralgia, was billed at $65,000 for the surgeon alone. This was an inpatient procedure with a two day hospital stay and four weeks of recovery and follow-up doctor's visits. The hospital and operating room costs, as well as anesthesiologist and other associated costs, are not included in that figure.
Negotiations between the insurance company and the surgeon will probably result in the surgeon settling on an actual fee of $40k - $45k.
Here are some links to surgery sites, and support groups!
http://drjho.com/id68.htm
http://www.neurosurgerytoday.org/what/patient_e/trigeminal.asp
http://www.mayoclinic.org/trigeminal-neuralgia/
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
http://www.tna-support.org/newlook/Articles/Destructive%20Procedures/Gamma%20Knife/gamma_knife_surgery_for_trigemin.htm
http://www.emedicine.com/med/topic2899.htm
http://www.medstudents.com.br/neuroc/neuroc2.htm
http://besttreatments.bmj.com/btuk/conditions/1000372977.html
Red...you are such a wealth of information! I appreciate your help so much! Just wondering, do you ever get a chance to sleep?
Lisa, I sleep about six to six and a half hours per night... {:-) However, my output volume is aided by the fact that I type at 95 words per minute and read at an accelerated rate too. Being a bit older than a lot of folks, I don't need as much sleep, and my experience base is wide enough to give me starting points for FAST research when I need to do it. I've long had a trick memory for associating stuff I've read in different sources. Can't always "find" stuff that I know, quite as fast as once I did.
Keep on truckin', lady...
Red
Pretty impressive! Again....thanks for everything you do for us in this support group. My MVD sugery plans have come to a screeching halt after I found out the cost. Will try to muddle along with my buffet of meds until the pain is no longer controlled. Just love being the "stoner" at work. :/