Is it possible to have both Classic TN and Atypical TN at the same time? I was labeled as Classic TN, but my neurosurgeon believes it is Atypical now. Most of my attacks start with a horrible shock and then followed by the stabbing, throbbing pain most attacks now last about an 25 to 30 minutes (before Tegretol they last about an hour). Then boom there is the horrible shock and it ends. But then the following day I have a stabbing constant pain all day in my jaw and will feel occasional shocks and also have a bad headache.
On Monday November 12, I had off and on pain all day at work and by the time I got home the pain was building and didn't stop...I had a 5 hour attack!!! I would get a shock followed by stabbing pain in my upper jaw lasting anywhere from 2 minutes to like 10 minutes followed by another shock and it would stop only to have the same thing then happen in my bottom jaw. Occasionally they would be in pain at the same time. This went on for 5 hours while I ignored my babies and cried in my room all night.
I was only diagnosed back on Oct 2 and have maxed out on 1200mg of Tegretol within that month. He is referring me to a neurologist to see if a second medication can be added to help me with the pain. He again told me my best option would be the MVD surgery, which after Monday's attack I told him I would definitely schedule at my appointment at the end of December. Of course even with my neurosurgeon's help I can't get into see a neurologist until December 5 which is still 3 weeks away...I am keeping my fingers crossed I don't have any more bad attacks.
Though I had one attack that was horrible attacks off and on for about 6 days once on my left side. My TN has always been on my right side. So my neurosurgeon isn't comfortable doing the surgery himself at the community hospital and told me he would find me a neurosurgeon I would like at University Hospital's downtown Cleveland main hospital and assist in the surgery. He said he hasn't really dealt with a bilateral case before and he thinks that the surgery might be more complex than originally thought.
I feel some comfort that he is telling me this and doing the right thing bringing in another surgeon as well, but at the same time it is SCARING me making me think the worst!
Has anything like this happened before to any one else????
Yes it is possible. And if you present with classic tn 1 first and then type 2,there is a good chance you can be treated with MVD successfully. The statistics are under the Face Pain info tab at the top of the page.
Hi Sara,
I have bilateral TN, it started on my right as TN1, and then I have TN2 on my left. More recently I’ve had a few zaps on my left side too, we’re considered a bit unique to the medical community BUT there’s a few others here like us, so not as unique as the doctors think.
Your doctor sounds very caring and sounds like he’s looking out for your best interests.
I’m currently looking into MVD, I’ve had one consult with a neurosurgeon who is willing to do the MVD, and I’m currently waiting for a second opinion from a neurosurgeon who specializes in TN, and MVD.
I’m on 1600mg Tegretol ( my max) 40mg Baclofen and I’m weaning off 100mg Neurontin
( gabapentin) struggling to get pain relief since a relapse in September.
My advice to you is to read up as much as you can about MVD and make sure to get at least 2 opinions from neurosurgeons. This will help you to make a decision that works for you.
I know it’s scary, last year this time, I would never even consider brain surgery BUT, now with the pain becoming harder to manage with meds I’m looking to have my life back, there have been lots of success stories here, ultimately we have to make a decision that works for us, as we are all unique.
Best of luck to you, keep me updated!
(( hugs )) Mimi
The first neuro surgeon I saw does not, but is very skilled with the MVD process. Highly reccomended.
The 2nd neuro surgeon does deal with TN a lot and specializes in MVD , studied under Dr.P.Jannetta in USA
( I’m in Alberta,Canada 1st NS is in my city, 2nd NS is in Winnipeg,Manitoba)
I would say I had the symptoms of TN2 when it first started, but after treatment with Tegretol, I'm more like a TN1.
A doctor I saw (not mine, thankfully) actually told me that what I was feeling wasn't pain, because TN pain only lasts for a few seconds at a time. I was describing the achy sore feeling you get AFTER the electrical shocks.
Hello, I just returned from my appointment in NY with Dr. Jeffrey Brown, who is a leading expert in TN, and MVD surgery. I was pretty sure I had bilateral TN, and the high resolution MRI I had in his office confirmed it. He suggested we do the MVD on the right side( which is the more painful side) first, and then wait a few months at least before doing the left side. Is your surgeon proposing to operate on both sides at the same time?.
Christine
By the way, I have bi-lateral venous compression TN2. My nerves are being compressed by a vein, instead of an atery
Wow, that would mean my achy sore feeling last for hours (my longest 5 hours) but is excruciating before my next shock and then it is all over! Thankfully my doctor agreed attacks can last for hours.
Roselyn said:
I would say I had the symptoms of TN2 when it first started, but after treatment with Tegretol, I'm more like a TN1.
A doctor I saw (not mine, thankfully) actually told me that what I was feeling wasn't pain, because TN pain only lasts for a few seconds at a time. I was describing the achy sore feeling you get AFTER the electrical shocks.
Yes, that is how mine is on the right side. We are going to do that surgery and then wait and let left side play out. So far I have only had one attack on my left side...so hopefully that side will progress slowly!! I think he was more concerned that the surgery might be more complex than he thought?? I will talk everything out with the neurologist on the 5th and make sure everything is clearly laid out to him. Most of my conversations with my neurosurgeon have been over the phone and I am thinking something didn't come out right...because I don't have 24/7 pain or burning.
I might have confused him when I said my left side is different from my right as it is more sensitive to triggers than my right. Right sides main triggers is chewing and stress...where as my left it was touch, anything that moved my jaw (chewing, talking, sucking, drinking). Heck I am actually so afraid of another attack coming on I have stopped eating solid food altogether and have gone on a diet of homemade fruit and vegetable smoothies! I also drink a Shakeology shake for breakfast to make sure I get the vitamins and protein I need. UGH!!!
Christine said:
Hello, I just returned from my appointment in NY with Dr. Jeffrey Brown, who is a leading expert in TN, and MVD surgery. I was pretty sure I had bilateral TN, and the high resolution MRI I had in his office confirmed it. He suggested we do the MVD on the right side( which is the more painful side) first, and then wait a few months at least before doing the left side. Is your surgeon proposing to operate on both sides at the same time?.
Christine
By the way, I have bi-lateral venous compression TN2. My nerves are being compressed by a vein, instead of an atery
I have constant burning on my right side, but the shocks are mostly controlled with Gabapentin. I started to have burning on the left side for the past month,along with a few shocks. My doctor told me the procedure can differ (in my case)from a classic MVD because a vein is causing the compression, not an artery. When a vein is involved, he will attempt to cut it instead of padding it, which is what he would do to an artery . The chance of pain relief is still quite high, so I am definitely moving forward with the surgery. I cannot wait!