I had a successful MVD surgery two weeks ago, and I just wanted to share with this community. I have been dealing with Type 1 trigeminal neuralgia symptoms for a little over a year. I experienced horrible allergic reactions to four different anti-convulsant medications, so in the end it was determined that I could not take those. For the past three months I was taking baclofen and amitriptyline. Both worked to mute the pain, but I was not close to pain-free, and my symptoms began to worsen over the summer. I was even having 30-50 minute attacks when the pain woud just repeat without a break. It was truly horrible.
Many times over the past year I felt there was no hope. So now I want to write and share that there was a solution for me! The MVD worked and I have had no facial pain at all since the moment I woke up from my surgery. I am still healing from the procedure, but any headaches and incision pain I am experiencing pale in comparison to the horrific nature of the TN pain.
I am happy to speak to anyone who is in the process of considering this surgery. I had a very difficult time making the decision to do it, but now I am so thankful I did.
Good luck to everyone, and know that there is hope!
Hello. I have been dealing with TN for only two months and can’t even imagine how you did it for a year. I just had an MRI this week Monday and I an waiting for the results. Dont know what I’m waiting for I already know I have TN It has gone from bad to really bad in a matter of days. I’m already thinking of the surgery. Yes it is a lot to take on. Already been thru a pituitary tumor for the last five years now this. I may take you up on your offer and would like to speak to you about the surgery. Thanks
Hi, I am so glad everything has worked out for you so far. I have had TN for three years now but it's only been a year since a doctor has called what I have TN. Anyway, I will have my MVD on 9/16...I'm a little scared, a little nervous, but I want this monster to go away because it's taken so much from me so far. Let us know how you're doing and what you've gone through since the operation. Fill me in on any tricks for my recovery. Again, I am so glad you're doing better and I hope soon to be able to report the same thing...
Scott - I'm sorry for your pain. I'm happy to share my experience if you are thinking about the surgery. The MRIs are to rule out any possible causes for the pain that should be treated. By the end of my journey, I had four different MRIs done. Good luck to you.
Houston Man - I'm sorry that you have been dealing with TN for so long. Good luck with your surgery! I was so scared and anxious beforehand. My suggestions are: 1. Get a stiff neck pillow (like the ones people use on airplanes) and have it at the hospital. When I woke up from surgery I wanted one immediately! And I am still using it to sleep sometimes. It is difficult to find a comfortable way to sleep for me because I usually sleep on my right side and that is my surgery side. For some reason the neck pillow really helped. I don't know exactly why it helps; there is something about the way it holds your neck. 2. Make sure you have someone to stay with you and take care of you for the first 10 days or so. I was in the hospital for two nights, so about 2 1/2 days. But once I was home I really couldn't do much for a few days and I was very dizzy and nauseous. So it's good to have someone around during that time.
My surgery was on August 4th, so it has been a little over 2 weeks. Immediately after the surgery my headaches were really bad and also the pain at the incision was awful. The first night in the hospital was definitely the worst, so just be prepared to struggle through that. That pain improves. I am still having some headaches and incision pain, but as of yesterday I am off all of my TN medication as well as the percocet I was taking after the hospital. Now I'm taking Advil and Tylenol throughout the day. But I can't wait to be off everything. Now I feel pretty good. I have up and down days, but I think that is just my body adjusting after the surgery. I also think coming off all of the medications affects your body in weird ways too. I'm walking every day and have even started lifting some light weights. My surgeon said that the more I move the faster I will heal. I think the most frustrating thing for the next few months will just be getting my energy level back up. I am very tired, and I'm sleeping 9-10 hours a night. The only other slightly annoying thing is that my face is very numb. It is getting better but very slowly. My surgeon says this is normal and the numbness will eventually go away, but it may take a few weeks. But I will say that ALL of the surgery after effects are worth it since I have absolutely no facial pain. It is truly a life changing experience. I wish you the best of luck with your surgery!!
That's so great! Thanks for Sharing.MVD is the best solution from my study of this horror.Even though i had Gamma Knife for TN pain my situation was a bit unique due to a AVM causing the problem.
I am so glad you said you were numb. I just had mvd on August 13th. The worst for me is the numbness. My right side from the outside corner of my eye down to the corner of my mouth is numb. Also the top of my head,inside my ear and my right sinus. It is horrible at night it feels so heavy. During the day I feel great just a little vertigo but otherwise really good. The numbness has kept me from feeling the incision so that is good. I was beginning to wonder if I was abnormal or going from pain to no feeling at all
Hi LANded Congratulations on your successful MVD. I have considered MVD but because my TN meds are mostly effective (not today-the Monster decided to strike up the band). some members of our Community recommend I pass on the surgery. I was misdiagnosed for three years and have now been on meds for 5 years. There is some speculation, according to Dr Chang-Neurosurgeon at Stanford University Medical Center, that suggests TN may evolve into Type 2 if not diagnosed and treated early on. Going over my history of 8 years, I wonder if that is my case. I believe Red mentioned,some time ago, the chance of Type 2 MVD is higher than previously thought. Sooo many mysteries with this Dreaded Disorder .There is a link to Successful Stories at the top of the page. Congratulations. Stay in touch. Many successful surgery Members drift away from active participation on the site.We are encouraged and inspired when a successful Member stays in touch, again, Congratulations.
Hi TB - I am about 9 days ahead of you, and I still have some numbness, so it may last for a while! Mine has greatly improved, but is not gone yet. My surgeon said that it is completely normal and may last a few weeks, but will then go away. He said it is just the nerve readjusting after having been manipulated during surgery.
And yes I noticed when I was researching surgery that there are so many horror stories on here. So I wanted to share a positive outcome! For me it was definitely the right decision.
My husband had MVD surgery 4 days ago. So far, he is TN pain free, but of course has surgery pain. His nausea is subsiding and he has begun to get his appetite. back. He is still on a lower dose of tegretol, but we are slowly weaning him off. Praying the TN pain stays away...forever...
Weeza it will take a couple days but then you will be surprised at how much better he will feel. Once you get all the drugs out of your system and your body can begin to heal. One thing I recommend is stretch your body. All the laying still makes everything ache after awhile. Wishing your husband a speedy recovery
Congrats to those who have undergone their MVD's and have been successful. Its a life altering surgery when it works and can very well last a lifetime. I am 31 yrs post my MVD surgery and thatnk God every day that I have not had the slightest twinge since the surgery. A little numbness here and there off and on but thats it. Hope you all have a lifetime of no more tn PAIN.. It will take awhile for the fear of TN returning to go away but over time that fear will disappear. God Bless.
Ed...WOW 31 years!! I can only pray my husband will be pain free that long! I have this nagging fear. My husband's job is outdoors, and he sometimes uses a jack hammer. Some months more than other (summer time). I wonder if that will set off the TN again? Any thoughts? Of course we will talk to the surgeon, but I am wondering if anyone has encountered a similar question.
I myself wouldn't go near a jackhammer.Im a knifemaker and went to a friends house that was using a power hammer on steel billets..It set my TN off big time.With vibrations that shake the ground how could it not.I always have to qualify on here that i have(had i hope) a AVM which is a bulged vein sort of thing at the base of my brain.The thinking is that is or was "tickling the nerve".
A man has to work,but perhaps they can get him another assignment.
Weeza said:
Ed...WOW 31 years!! I can only pray my husband will be pain free that long! I have this nagging fear. My husband's job is outdoors, and he sometimes uses a jack hammer. Some months more than other (summer time). I wonder if that will set off the TN again? Any thoughts? Of course we will talk to the surgeon, but I am wondering if anyone has encountered a similar question.
I had mine 10 days ago recovery is going ok except for the deadness I have on my TN side. It is numb but as night comes on it is as if I have a 50 lb weight on it. Very uncomfortable