Hi everyone, I hope that you're all doing well. My question is have any of you ever had a trigeminal nerve block, if so, was it helpful? And for how long?
My other question, my neurologist said that MVD for TN is rare, but it seems that a lot of you have had it? I'm just confused, that's all. Did you get a referral to a neurosurgeon, or how did that go?
Sending you all my best wishes; take care. <3
I can’t speak to nerve blocks, but in regards to MVD, I started researching and had my neuro refer me to a neurosurgeon to get his opinion.
Then I personally emailed a 2nd neurosurgeon to get his opinion.
I have 2 opinions and they both had similar reccomendations so I’ve agreed to an MVD with one of the neurosurgeons.
MVD for me ( and this is my opinion only) is a last ditch effort to find relief, it is not a cure, its a hope that I will gain relief for months but hopefully years and be able to lessen the meds I am on.
Research with your parents as much as you can about all options available to you. Read about others successes and failures with all the different procedures.
Good luck!
How is your pain lately? Have you found some relief?
((( hugs))) Mimi
Even in this group MVD is not common. Many members do not meet the op criteria. Some cannot afford it, some are not eligible As Mimi says, do your research, check out your neurosurgeon. Ask RED LAWHERN for his opinion.
I have heard mixed reports about the nerve blocks. Use the search box in the very top right hand corner.
I've had nerve blocks, actually going for my 2nd on Friday. The first helped for about 2 weeks- doesn't seem like long but to not have for even a day is a blessing. I've had many done for occipital neuraglia and to control headaches. The procedure for the trigeminal block itself isn't too bad, I was lucky to have a doctor with a light touch.
I'd be happy to answer any questions you may have about the procedure if I can.
Stephanie
I had nerve blocks a few days ago.. and the pain relief was only for one day.... the pain is now back... so I dont really know if maybe the doctor didnt get the right nerve with the injection, or if its something else... I dont think I will consider going thru those injections again, if its only going to give me 24 hours of relief....
For a while the tegretol was helping, but now....it's effect is starting to wear off. My neuro recommended nerve blocks and that MVD was uncommon, so we'll see. I'll probably get the nerve blocks see how they help, and then get 2nd and 3rd opinions. :)
Mimi said:
I can't speak to nerve blocks, but in regards to MVD, I started researching and had my neuro refer me to a neurosurgeon to get his opinion.
Then I personally emailed a 2nd neurosurgeon to get his opinion.
I have 2 opinions and they both had similar reccomendations so I've agreed to an MVD with one of the neurosurgeons.
MVD for me ( and this is my opinion only) is a last ditch effort to find relief, it is not a cure, its a hope that I will gain relief for months but hopefully years and be able to lessen the meds I am on.
Research with your parents as much as you can about all options available to you. Read about others successes and failures with all the different procedures.
Good luck!
How is your pain lately? Have you found some relief?
((( hugs))) Mimi
By the time I was sent to a neurosurgeon I had been suffering for so long and the pain was so excrutiating that he told me I could try other things but that in my case he thought a MVD would be more beneficial. I’m 5 weeks post op with no TN pain. I no longer take pain meds, I will be taken off Tegretol in January, but best of all: I can think again. It’s like this slowness of the brain has gone away. I feel like I can work again! (I was on disability from the age of 24 to now, 31.)
I'm so happy that MVD worked so well for you! I can only hope the same for me.
It's good to hear that the feeling of not being able to think due to pain has gone away for you. :)
Best of luck.
ihold said:
By the time I was sent to a neurosurgeon I had been suffering for so long and the pain was so excrutiating that he told me I could try other things but that in my case he thought a MVD would be more beneficial. I'm 5 weeks post op with no TN pain. I no longer take pain meds, I will be taken off Tegretol in January, but best of all: I can think again. It's like this slowness of the brain has gone away. I feel like I can work again! (I was on disability from the age of 24 to now, 31.)
Sometimes you may have to up your dose of Tegretol. I have had 2 increases in about 3 months. And for some odd reason, I had a bad attack this weekend and had to take extra a couple of times to try to settle it down. I am hoping I won't have to increase again. I will just have to watch and see. Good luck sweetie!
tooyoungtosuffer97 said:
For a while the tegretol was helping, but now....it's effect is starting to wear off. My neuro recommended nerve blocks and that MVD was uncommon, so we'll see. I'll probably get the nerve blocks see how they help, and then get 2nd and 3rd opinions. :)
Mimi said:I can't speak to nerve blocks, but in regards to MVD, I started researching and had my neuro refer me to a neurosurgeon to get his opinion.
Then I personally emailed a 2nd neurosurgeon to get his opinion.
I have 2 opinions and they both had similar reccomendations so I've agreed to an MVD with one of the neurosurgeons.
MVD for me ( and this is my opinion only) is a last ditch effort to find relief, it is not a cure, its a hope that I will gain relief for months but hopefully years and be able to lessen the meds I am on.
Research with your parents as much as you can about all options available to you. Read about others successes and failures with all the different procedures.
Good luck!
How is your pain lately? Have you found some relief?
((( hugs))) Mimi
I had two nerve blocks and personally did not find them helpful. They were CT guided so should have been in the right spot (gangloin), but I had minimal numbness form each one other than to my left cheek from the local anesthetic. The second one was very painful.
MVD is not the answer for everyone. I underwent mine 6 days ago and told myself I would have no regrets. I also meet with two neurosurgeons and am in the medical field, so I really did my homework. If you have Type I pain at some time, a visualized compression and are generaaly healthy otherwise, then MVD may be the right choice for you. The surgery and recovery are no cake walk, but a risk some are willing to take if the symptoms fit and a good surgeon thinks they can help. Best wishes to all.
I am also looking to see if anyone has had a trigeminal nerve block. I am willing to do it and soon. I have atypical on my left side. Nothing brings it on. Its always ache and my face feels tight. Wind brings relief. When I am an outside I feel better. If I put a Hairdryer on cool and blow it on my face I feel relief from the pulling and cramping. When I stop it comes right back. My ears feel full and I have ringing in my left ear. I had MVD. It did not work. For Atypical there is a small chance that it would work and yet 2 surgeons independent of one another both said the nerve looked wrap around the blood vessel. The Dr. who operated on me wanted to go back in thinking maybe he missed something. I said no. He is one of the top Dr. in this field and I just didn't want to go through this again with a good chance the outcome would be the same.