Has anyone had TN caused by vein compression and had succesfull MVD? I met with a neurosugeon who stated MVD for venous compression only 60-70% effective, btu still treatment of choice when meds fail. Studies show may need a second MVD down the road. Just looking for comments regarding someone elses experience with this. The risks of CSF leak, etc scare me.
Hi Msuclemay,
I am going for my 3 week post op appointment this Monday. I had MVD on Sept. 4. I too was frightened of all the surgery risks and then reading some members bad stories. This really made me think of not having the surgery. But the thought of living with TN the rest of my life, the increased dosages of meds that may or may not work and the real possiblity that I would end up out of work and on disability somewhere down the line was not what I wanted for myself. My future looked bleak. I was very fortunate to live 45 minutes from Boston. I knew I would be getting the best Drs & Hospitals. My Dr has done hundreds of MVD's.
He went over the risks as with any surgery. The other risks that accompany MVD is the CFS leak and hearing loss. My Dr also gave the surgery 90% success rate. After reading a lot of members stories, I really think that the more experience your Dr has with this procedure, the better outcome a patient will have. I went in with a list of 20 or so questions when I met with him and I felt he was the best guy for the job. My MRI did show a vien compressing the nerve and that is what he found when he went in. Mass General Hospital also has audiologist from Mass Eye & Ear attend in the surgery. They put about 4 probes into your head and monitor the patients hearing during the surgery through brain wave activity.
I can tell you that I have had NO TN pain since Sept. 4. My meds stopped working last April so I had about 40 zaps per day since April. I do believe I have been fixed and am weaning off the mind fogging medicine. The surgery is a bit uncomfortable, incision site etc is sore, but it is NOTHING like the TN pain we feel.
I don't know where you live or if your Dr/hospital has had a lot of experience, I can just tell you I am so happy with the choice I made. I was also able to connect with a fellow member on this site who went to the same Dr and had the surgery about 6 weeks before me. He was such a great support to me.
I hope my story helped you.
Mary
Mary, can you let me know who you saw for your surgery. You can drop me a personal message at Tinkerbell or at ■■■■■■■■■■■■■■■■■■■■■■■. I'm considering going to Dr. Ben Carson, someone at Duke or I've heard some good things about some docs at Mass General. But I need a name because I'm getting weary of the run around to find the "right" doctor. If you found someone who gave you a good experience, I'd like to have his name for a possible consultation. Thank you very much for your assistance. Thank you!
Mary,
I am so happy to hear you surgical experience has been a good one this far! I worry about the risks of surgey as I read so many horror stories on here. I agree with sentiment in your first paragaraph. This is no way to live and at the age of 29 I hope to have a lot of living left. I am leaning more towards having the surgery. I was seen by a neurosurgeonb at Mayo in Rochester. He has a lot of experience and would do a great job, so the extra traveling is/would be well worth it.
I may PM you with some personal questions if you don't mind?
Wishing you a speedy recovery.
mary said:
Hi Msuclemay,
I am going for my 3 week post op appointment this Monday. I had MVD on Sept. 4. I too was frightened of all the surgery risks and then reading some members bad stories. This really made me think of not having the surgery. But the thought of living with TN the rest of my life, the increased dosages of meds that may or may not work and the real possiblity that I would end up out of work and on disability somewhere down the line was not what I wanted for myself. My future looked bleak. I was very fortunate to live 45 minutes from Boston. I knew I would be getting the best Drs & Hospitals. My Dr has done hundreds of MVD's.
He went over the risks as with any surgery. The other risks that accompany MVD is the CFS leak and hearing loss. My Dr also gave the surgery 90% success rate. After reading a lot of members stories, I really think that the more experience your Dr has with this procedure, the better outcome a patient will have. I went in with a list of 20 or so questions when I met with him and I felt he was the best guy for the job. My MRI did show a vien compressing the nerve and that is what he found when he went in. Mass General Hospital also has audiologist from Mass Eye & Ear attend in the surgery. They put about 4 probes into your head and monitor the patients hearing during the surgery through brain wave activity.
I can tell you that I have had NO TN pain since Sept. 4. My meds stopped working last April so I had about 40 zaps per day since April. I do believe I have been fixed and am weaning off the mind fogging medicine. The surgery is a bit uncomfortable, incision site etc is sore, but it is NOTHING like the TN pain we feel.
I don't know where you live or if your Dr/hospital has had a lot of experience, I can just tell you I am so happy with the choice I made. I was also able to connect with a fellow member on this site who went to the same Dr and had the surgery about 6 weeks before me. He was such a great support to me.
I hope my story helped you.
Mary
Hi,
Yes I had TN caused by major vein compression and MVD was successful. I am now 2 months past surgery. NO TN Pain and off all medications. The same doctor, Emad Eskandar MD , and same hospital, The Massachusetts General Hospital, fixed me and Mary. Both were outstanding. Heres what I wrote 5 weeks ago. Let me know if you ( or anyone) has any questions. Happy to help. Good luck. Best, Rick
http://www.livingwithtn.org/forum/topics/a-positive-mvd-surgery-experience-and-outcome
Hi RickRI,
You had compression due to artery or vein? Artery has 95% success rate versus 60-70% for vein compression. Your positive expericne is welcoming on this site. Thanks.
RickRI said:
Hi,
Yes I had TN caused by major vein compression and MVD was successful. I am now 2 months past surgery. NO TN Pain and off all medications. The same doctor, Emad Eskandar MD , and same hospital, The Massachusetts General Hospital, fixed me and Mary. Both were outstanding. Heres what I wrote 5 weeks ago. Let me know if you ( or anyone) has any questions. Happy to help. Good luck. Best, Rick
http://www.livingwithtn.org/forum/topics/a-positive-mvd-surgery-exp...
Hi,
Sorry for the confusion , it was not a vein.
It was a cerebellar artery . Compressing the right trigeminal nerve in 2 places.
Best
Rick
What a good story--thanks. I am scheduled for MVD on Oct.18 by Dr.Ben Carson at Johns Hopkins and am reading all I can in preparation without being totally obsessed with it. I have made all the right choices and know without a doubt that the outcome will be excellent!
mary said:
Hi Msuclemay,
I am going for my 3 week post op appointment this Monday. I had MVD on Sept. 4. I too was frightened of all the surgery risks and then reading some members bad stories. This really made me think of not having the surgery. But the thought of living with TN the rest of my life, the increased dosages of meds that may or may not work and the real possiblity that I would end up out of work and on disability somewhere down the line was not what I wanted for myself. My future looked bleak. I was very fortunate to live 45 minutes from Boston. I knew I would be getting the best Drs & Hospitals. My Dr has done hundreds of MVD's.
He went over the risks as with any surgery. The other risks that accompany MVD is the CFS leak and hearing loss. My Dr also gave the surgery 90% success rate. After reading a lot of members stories, I really think that the more experience your Dr has with this procedure, the better outcome a patient will have. I went in with a list of 20 or so questions when I met with him and I felt he was the best guy for the job. My MRI did show a vien compressing the nerve and that is what he found when he went in. Mass General Hospital also has audiologist from Mass Eye & Ear attend in the surgery. They put about 4 probes into your head and monitor the patients hearing during the surgery through brain wave activity.
I can tell you that I have had NO TN pain since Sept. 4. My meds stopped working last April so I had about 40 zaps per day since April. I do believe I have been fixed and am weaning off the mind fogging medicine. The surgery is a bit uncomfortable, incision site etc is sore, but it is NOTHING like the TN pain we feel.
I don't know where you live or if your Dr/hospital has had a lot of experience, I can just tell you I am so happy with the choice I made. I was also able to connect with a fellow member on this site who went to the same Dr and had the surgery about 6 weeks before me. He was such a great support to me.
I hope my story helped you.
Mary