after 3 years of discomfort after MVD my surgeon has recommended me try the procedure of dorsal root entry zone. I hope I'm spelling it right. Has anyone had this experience? They go into the brain again and I am skeptical. Any suggestions?
I just looked it up in a medical book, Trigeminal Neuralgia, edited by Peter J. Jannetta, 2010: DREZ is a lesioning procedure where they go right into the sensory nucleus. You’d sure want to get someone experienced in this type of thing. Ask for stats. Other than that I don’t know about it. Let us know what you find out.
Bellalarke
I had my MVD done by one of Dr. Jannetta's associates. He taught him everything but Dr. Jannetta had retired. It was Dr. R. Sekula. He called me at home this morning from Pittsburg to suggest the procedure. I have had so much trouble since the MVD. He really thinks the trigeminal nerve is so terribly damaged. Reason unknown. It was 3 years ago I had it done. He has hung in there with me all along. I'm getting to be pretty desperate with being so uncomfortable. I'm in Kentucky and he suggested some one here. I will have to do a lot of checking if I can figure out how. I'm also on medicare now so that could be a problem. Thanks for answering me so soon.
Bellalarke said:
I just looked it up in a medical book, Trigeminal Neuralgia, edited by Peter J. Jannetta, 2010: DREZ is a lesioning procedure where they go right into the sensory nucleus. You'd sure want to get someone experienced in this type of thing. Ask for stats. Other than that I don't know about it. Let us know what you find out.
Bellalarke
Just found this link from an old thread here at LwTN.
I don’t know much about it.
I’ll try and read a bit more …Message Red, I bet he’s got some knowledge about drez!
Thinking of you, Mimi xx
Hello again,
I was on my way out the door earlier but looked up your surgeon in the book and he is co-author of a couple chapters and often cited so very impressive doc to have on your side. I’m in Canada so not sure how your Medicare system works but perhaps if Dr. Sekula writes on you behalf it might ease things along. Ask him to do that. So sorry you are in such discomfort for so long.
Peace and Kindness
Bellalarke
Thank you for your concern. I'm really undecided about what to do. I just don't know where I stand with all of this. Maybe I should leave well enough alone. I just don't know. I wish I knew somene that has had this other procedure done to ask them personally about it. Thanks.
Bellalarke said:
Hello again,
I was on my way out the door earlier but looked up your surgeon in the book and he is co-author of a couple chapters and often cited so very impressive doc to have on your side. I'm in Canada so not sure how your Medicare system works but perhaps if Dr. Sekula writes on you behalf it might ease things along. Ask him to do that. So sorry you are in such discomfort for so long.
Peace and Kindness
Bellalarke
Unfortunately yes. I had it done at the University of Kentucky in the town where I live. That was 2 years before the MVD> I wonder if that caused the problem with what is going on now. Thanks for asking.
Cleo said:
Did you have gamma before mvd?
After the Gamma Knife I was pain free for 6 months. Then came back full force. So went back on all the drugs. Then 2 yrs. later I decided to have the MVD before my good insurance ran out. I was retired but still had the insurance for years. After 1 month all these side effects started and continue to get worse. My surgeon, Dr. R. Sekula called me yesterday at home and he thinks I need this other procedure. He feels the trigeminal nerve is just so damaged that no drugs will help. I have tried them all. Even lidocaiine patch. I don't have the original lightening bold pain, its many other kinds of discomfort.
Cleo said:
Did the symptoms take a change for the worse after gamma or mvd?
santafered said:Unfortunately yes. I had it done at the University of Kentucky in the town where I live. That was 2 years before the MVD> I wonder if that caused the problem with what is going on now. Thanks for asking.
Cleo said:Did you have gamma before mvd?
May I ask where you found this informaton? I'm just curious. I guess I don't know where to look or how to research it. dr. Sekula is my surgeon. but thanks. The more I read on Drez I don't think I'll go that route. It's too risky. I'll just continue to suffer in silence and cry myself to sleep most nights. Like last night. It's okay once I get to sleep. But my sleep history is not good. If I'm lucky I get 5-6 hours. Being tired I think makes my discomfort worse I do believe. I call it discomfort because it is not the same pain, pain, that I suffered for so many years before the MVD. But it sure plays on your nerves and keeps me miserable. then I think how lucky I am. I just lost a good friend and neighbor across the street from Bladder cancer. She was only 66, a fine Christian woman. She only was sick 2 months. So I should count my blessings I guess. When I think of her daily I remember how luck I am. I get to see my precious Grandchildren whenever I want to. Life is sure strange isn't it? I guess we all have our demons.
Thank you so much for your interest.
Cleo said:
Microvascular decompression after failed Gamma Knife surgery for trigeminal neuralgia: a safe and effective rescue therapy?
Source
Center for Cranial Nerve Disorders, Department of Neurosurgery, Allegheny General Hospital, Allegheny Neuroscience Institute/Drexel University College of Medicine, Pittsburgh, Pennsylvania 15212, USA. rsekula@wpahs.org
Abstract
OBJECT:
Stereotactic radiosurgical rhizolysis using Gamma Knife surgery (GKS) is an increasingly popular treatment for medically refractory trigeminal neuralgia. Because of the increasing use of GKS for trigeminal neuralgia, clinicians are faced with the problem of choosing a subsequent treatment plan if GKS fails. This study was conducted to identify whether microvascular decompression (MVD) is a safe and effective treatment for patients who experience trigeminal neuralgia symptoms after GKS.
METHODS:
From their records, the authors identified 29 consecutive patients who, over a 2-year period, underwent MVD following failed GKS. During MVD, data regarding thickened arachnoid, adhesions between vessels and the trigeminal nerve, and trigeminal nerve atrophy/discoloration were noted. Outcome and complication data were also recorded.
RESULTS:
The MVD procedure was completed in 28 patients (97%). Trigeminal nerve atrophy was noted in 14 patients (48%). A thickened arachnoid was noted in 1 patient (3%). Adhesions between vessels and the trigeminal nerve were noted in 6 patients (21%) and prevented MVD in 1 patient. At last follow-up, 15 patients (54%) reported an excellent outcome after MVD, 1 (4%) reported a good outcome, 2 (7%) reported a fair outcome, and 10 patients (36%) reported a poor outcome. After MVD, new or worsened facial numbness occurred in 6 patients (21%). Additionally, 3 patients (11%) developed new or worsened troubling dysesthesias.
CONCLUSIONS:
Thickened arachnoid, adhesions between vessels and the trigeminal nerve, and trigeminal nerve atrophy/discoloration due to GKS did not prevent completion of MVD. An MVD is an appropriate and safe "rescue" therapy following GKS, although the risks of numbness and troubling dysesthesias appear to be higher than with MVD alone.
- PMID:
- 20136393
- [PubMed - indexed for MEDLINE]
Guess you must have fallen in the bad luck %
Oh yes. That was so long ago. I even changed Dentists because mine of many years began to think I was crazy with this continual pain. I stayed with the one that did the root canals. So long ago.
Cleo said:
Did you have the same symptoms before the root canals?
Hi Santafered,
I see you don’t get enough sleep. I think you’re right. Lack of sleep definitely contributes to daily pain. Have you tried a sleeping medication? It can make a big difference.
On the one hand it is always good to aware of how others suffer in the world. But we all also need to take our own lives for what they are and do everything we can to make them as livable as possible.
Also a thought: Botox injections.