I was diagnosed with a classic case of TN type 1 last month. I was put on Gabapentin and take 1800 mg./day. It has relieved my pain so I only get a few mild episodes per day. I can live with this. However, after visiting with a stanford neurosurgeon I was told that I would probably have to increase meds as the disorder progresses and my side effects would increase. I am increasingly lethargic and this could get worse with a bit more dizziness. I was also told that I have 3 arterial vessels right next to the trigeminal nerve and that the surgery would most likely fix this for the rest of my life. I have read quite a few blogs and it seems there are lots of issues. This makes me scared. I was also told that I should do the MVD before I get too much older. Iam 57. I now have to make a decision in the next few days about the MVD as my insurance will be running out in next few months. I am wondering how long I can continue to just take the meds and live "normally." Should I just go ahead with the MVD? Please let me know what you think. This is a very hard decision for me.
Lisa, from what I have read, finding a neurosurgeon who is very experienced in MVD's is key to a successful outcome. I have had TN for 3 yrs and on gabapentin for 2 yrs, increasing every year. In the few months I have been on this site I am starting to consider MVD as reading about so many experiences. I don't know how you are able to handle 1800 mg/day...I started getting lethargy, weight gain, brain fog and general stupidity when bumped up to 900 mg over several months, lol.
You are a verrrry lucky person…you have been guided to a gift that can keep on giving! MVD by a TN professional…it takes some people yearrrrrs to get that info
Me: Two years post op MVD and occasional 1% twinge…I went to one of the top docs…no meds now…I hated them, robbed my IQ and self esteem… I had two nerves fixed in less than two hrs. I was 48.
You have to understand, that most MVDs that are successful…90%+ , but most of those patients don’t hang around online … once you have a successful one… You get your life back… So the data you read about is skewed…
I was terrified…but I did it at one year mark of first attack… The sooner the better… One night ICU…one night in regular room, then go home and sleep for two weeks. It does take a year to see where your best results settle in…some people get instant results, some takes weeks or months to find your best results.
That you so much for responding, it almost had me in tears. What a relief.. Its the best answer I could have had in helping me decide what to do. After reading all of the bad experiences and little good ones. I was begin to think my pain wasn't enough to warrant the surgery.
Thanks for your email address, I may just have a few more questions over the next few days.
Best,
Lisa
Kc Dancer Kc said:
You are a verrrry lucky person.....you have been guided to a gift that can keep on giving! MVD by a TN professional.......it takes some people yearrrrrs to get that info
Me: Two years post op MVD and occasional 1% twinge.....I went to one of the top docs......no meds now.....I hated them, robbed my IQ and self esteem..... I had two nerves fixed in less than two hrs. I was 48.
You have to understand, that most MVDs that are successful....90%+ , but most of those patients don't hang around online ..... once you have a successful one..... You get your life back..... So the data you read about is skewed.....
I was terrified....but I did it at one year mark of first attack...... The sooner the better...... One night ICU...one night in regular room, then go home and sleep for two weeks. It does take a year to see where your best results settle in......some people get instant results, some takes weeks or months to find your best results.
It's cranial surgery.....not brain surgery.....
Any other questions....you can Email me at kcdancerkc@yahoo.com
Derrick, I am 63 yrs old now and had MVD done 30 yrs ago. I am one of those whose MVD was a total success. I woke up pain free and have been pain free since. I suffered for 8 yrs with TN prior to my surgery and the episodes and pain just got worse and worse as time wore on. I was on 1600 mg of Tegretol and working FT supervising over 80 people. The side affects of the Tegretol and the pain from the TN was utterly unbearable. This was 30 yrs ago when getting a TN disgnosis was almost impossible. One of the critical choices is to find a surgeon who is experienced and confident that they can Help. I will always remember the words that my neurosurgeon said to my wife and myself, "I know what you have and dont worry I can help you. I will take good care of you." If I had to do it over again today at age 63 I would do it in a heartbeat. Its an opportunity to get your life back and a very high percentage of people get relief if not complete elimination of the pain. Any questions let me know and good luck.
I was diagnosed six years ago with TN and was seen at Stanford neurosurgery, may I ask who you saw? I saw Dr. Jamie Henderson and he was amazing. After I saw neurosurgery, they referred me to neurology so I could receive their support until I decided to have surgery. Neurology didn’t think I should have surgery, so I never went ahead with surgery. I did have a nerve block with the pain center at Stanford as they said that I needed to have it and was forced into it and left with life changes complications. I cannot say whether you should keep trying medications or should pursue MVD, but I did learn one thing from the nerve block, don’t let anyone push you into any type of surgical procedure unless you know that it is right for you. I know you insurance is running out and what they said as they said those same things to me. I just learned that don’t let them push you into something if you don’t feel it is right because when something go wrong you live with the effects. This is just my opinion, but I hope you are able to figure out your next step
Shadow2, Thanks for the input...the 1800mg/day has been a challenge... although it has been better than the alternative. I sorta float through the day and coffee in the morning helps with the early brain fog. Never could drink caffeinated coffee at any time of the day before I began taking the Gabapentin. Also I now sleep all night except I don't feel rested when I wake up in the morning...go figure. However the meds will not be sustainable very long, but I have decided not to rush into the MVD surgery. I will give it a few months and look for the best surgeon, like you suggested. Lisa
shadow2 said:
Lisa, from what I have read, finding a neurosurgeon who is very experienced in MVD's is key to a successful outcome. I have had TN for 3 yrs and on gabapentin for 2 yrs, increasing every year. In the few months I have been on this site I am starting to consider MVD as reading about so many experiences. I don't know how you are able to handle 1800 mg/day...I started getting lethargy, weight gain, brain fog and general stupidity when bumped up to 900 mg over several months, lol.
We saw Dr. Chang, actually he wasn't pushing us, he just said with my situation that I was a good candidate for MVD. I think we (Derrick and myself) were the anxious ones wanting to get this resolved and fixed. However I totally agree with you. My neurologist also believes that surgery should be the last resort, so I will be consulting with her before making any decisions. However the meds will not be sustainable for a very long time. Plus I think I will be consulting with another Neurosurgeon in the next month or so.
Thanks,
Lisa
Beth said:
Hi Derrick,
I was diagnosed six years ago with TN and was seen at Stanford neurosurgery, may I ask who you saw? I saw Dr. Jamie Henderson and he was amazing. After I saw neurosurgery, they referred me to neurology so I could receive their support until I decided to have surgery. Neurology didn’t think I should have surgery, so I never went ahead with surgery. I did have a nerve block with the pain center at Stanford as they said that I needed to have it and was forced into it and left with life changes complications. I cannot say whether you should keep trying medications or should pursue MVD, but I did learn one thing from the nerve block, don’t let anyone push you into any type of surgical procedure unless you know that it is right for you. I know you insurance is running out and what they said as they said those same things to me. I just learned that don’t let them push you into something if you don’t feel it is right because when something go wrong you live with the effects. This is just my opinion, but I hope you are able to figure out your next step
Living with TN is filled with all kinds of BIG decisions that can be life altering. I was diagnosed (and had my first symptoms) with Classic TN1 one year ago. I researched everything I could find and every path I could take. I saw 2 neurologists, a pain doctor and 3 neurosurgeons. I knew my options and knew that all had their up sides and down sides. I decided to have an MVD which I did almost 3 months ago and will never regret it. It was a tough decision to make for me and my family. When making that decision I had to decide what I would most regret regardless of the outcome. I was leaning heavily toward MVD and was confident that I had found the best surgeon (even traveling out of town) that I could have do the surgery. I then thought about the scenario of what if I have the MVD, I have a serious complication (I considered complete hearing loss in that ear), and zero relief from the surgery. If that were to all happen, would I then regret having had the MVD or would I regret even more not taking that leap of faith and not doing the surgery because of my fear of a bad outcome. That along with prayer is how I came to MY decision. MY MVD was a big success btw. I'm left with zero pain and did not have one single complication. I knew there were no guarantees and still this is not a full guarantee but it was the right thing for me.