Hello to all,
My neurosurgeon is considering Gamma Knife to the 5th cranial nerve because there has been no improvement in pain at all after MVD.
Has anyone had experience, good or bad, with this.
Sincerely,
Janice
Hi Janice: Very sorry to hear you have no improvement. What a bummer. It doesn't help your situation, but April Discover Magazine does feature a successful mvd. I only mention this to show that mvd and trigeminal neuralgia is now in the press and that will ultimately be good for all of us. I am hopeful more relief is on its way with this site and others bringing this horrible condition to more general study. I am sorry that I cannot offer any opinion on gamma knife Anne
Hello a5150k0
I searched in the box on the upper right hand corner of the home page "gamma knife after mvd" You'll find useful information particularly from Red Lawhern
sfbill
Red has serious advice on gamma knife procedures. I have had an mvd which was not successful. My neurologist isn’t too keen on them in that there are possible irreversible additional pain related risks as a result of the procedure. Get lots of advice and medical opinions before proceeding. I would get the procedure if there were no other options and my pain was intolerable.
Janice, glad you started this discussion - I also had an MVD which was a total failure, & my neurosurgeon (here in KS where I live) said I have 2 options left, either go back in & try a 2nd MVD or go the Gamma Knife route which he does not support at all...he actually said to me that he is the "neurosurgeon everyone comes back to after the GF temporary relief wears off & the patient is in even more pain than before." Needless to say, that freaked me out & I have since heard too many horror stories of how severe the pain is once it returns (which it always does from what I've been told by my drs.) at some point after the GK procedure. I'm so sorry your MVD failed like mine...it is a very difficult disappointment after going through the trauma of the MVD surgery & lengthy recovery period...my suggestion would be to get a 2nd opinion before going through with it. That is what I'm doing - heading to Johns Hopkins next month to meet with neurosurgeon Dr. Michael Lim (he has already gone over my records sent last week) to discuss any OTHER procedures that may be available there for him to do that are not even being done where I live...I've already read of a couple procedures he & Dr. Ben Carson (who is retiring in June) do at Johns Hopkins with much success that I had never even heard of before! Best wishes to you, Janice! Let us know how things go for you! We are all in this together! ♥
I am also considering Gamma Knife. I had MVD in 2010, and it failed. The surgeon said that my nerves are, "like a spiderweb... tangled all together." No wonder he couldn't fix my problem. My new doctor wants me to consider Gamma Knife. I'm mostly afraid of facial paralysis. But I need to do something. I've been suffering for 9 years with minimal pain relief, and I know my husband is behind this procedure, so I'm starting to consider it.
I had my failed MVD in 2010. The Neurosurgeon said with it failing, the other procedures had a much less chance of working than ever. I had the surgery that had the greatest chance of success and it failed.
xxOxx
Lori,
Will be very anxious to hear about your trip to John's Hopkins, please let us know how it went.
Good Luck,
xxOxx
Lori (Lefty) said:
Janice, glad you started this discussion - I also had an MVD which was a total failure, & my neurosurgeon (here in KS where I live) said I have 2 options left, either go back in & try a 2nd MVD or go the Gamma Knife route which he does not support at all...he actually said to me that he is the "neurosurgeon everyone comes back to after the GF temporary relief wears off & the patient is in even more pain than before." Needless to say, that freaked me out & I have since heard too many horror stories of how severe the pain is once it returns (which it always does from what I've been told by my drs.) at some point after the GK procedure. I'm so sorry your MVD failed like mine...it is a very difficult disappointment after going through the trauma of the MVD surgery & lengthy recovery period...my suggestion would be to get a 2nd opinion before going through with it. That is what I'm doing - heading to Johns Hopkins next month to meet with neurosurgeon Dr. Michael Lim (he has already gone over my records sent last week) to discuss any OTHER procedures that may be available there for him to do that are not even being done where I live...I've already read of a couple procedures he & Dr. Ben Carson (who is retiring in June) do at Johns Hopkins with much success that I had never even heard of before! Best wishes to you, Janice! Let us know how things go for you! We are all in this together! ♥
Janice,
So sorry to hear about your story. I had Gamma Knife in August of 2012 and unfortunately it did not work for me.
I am in so much pain this week I have gotten into Mayo Clinic in Rochester MN. Unfortunately, the appointment is in October. Until then, I will do the best I can.
I did not have a "bad" experience. I had a great doctor, great nurses, it just did not help. One clear thing, you have one heck of a headache after!
Good luck! I wish you all the best.
Joan
My husband had both Gamma Knife and MVD surgery. He experienced relief for a short period of time (six months with Gamma Knife and two weeks after MVD). His TN was a symptom of Multiple Sclerosis. He is very frustrated and depressed. I read about a new drug in trial in the UK. Hope it is on the market soon. Janice, Gamma Knife might be the answer for you.
Cass said:
My husband had both Gamma Knife and MVD surgery. He experienced relief for a short period of time (six months with Gamma Knife and two weeks after MVD). His TN was a symptom of Multiple Sclerosis. He is very frustrated and depressed. I read about a new drug in trial in the UK. Hope it is on the market soon. Janice, Gamma Knife might be the answer for you.
Hey Janice…
My story… diagnosis 2002. MVD 2010. GK 3 months later. Here I am now 3 yrs later in the midst of the worst episode I’ve experienced yet. My neuro started me on topiramate. Doubled it to 150mg. I couldn’t take the emotional/suicidal thoughts that med was giving me so I dropped it to 125mg. With 2700mg at least of trileptol a day. 3-15mg oxycodone and 2-20mg oxycontin. It’s still coming when it wants as we all know. Funny, I sit here and actually consider doing anything to make it go away. Oh… I’m atypical right lower mandibular… living the American dream.
Hi Pam,
With failed MVD, horrified to try anything else, especially when the Neuro Surgeon says chance of any other procedure helping is very low. On so many meds and loss of balance from the meds and the surgery, walking around like a drunk and then the attacks which also worsened after surgery I too actually consider doing anything to make it go away.
We just have to Pray a lot for help to just get us through the pain.
I figure my life as a normal person is over, I was Blessed with the years I had, just wished I would have used them wisely and appreciated them more. yes, I agree, living the American Dream
Guess we just have to grin and bear it, oops, grinning might make it hit, (smile)
xxOxx
pamf said:
Hey Janice...
My story... diagnosis 2002. MVD 2010. GK 3 months later. Here I am now 3 yrs later in the midst of the worst episode I've experienced yet. My neuro started me on topiramate. Doubled it to 150mg. I couldn't take the emotional/suicidal thoughts that med was giving me so I dropped it to 125mg. With 2700mg at least of trileptol a day. 3-15mg oxycodone and 2-20mg oxycontin. It's still coming when it wants as we all know. Funny, I sit here and actually consider doing anything to make it go away. Oh... I'm atypical right lower mandibular... living the American dream.