I recently had MVD surgery three weeks ago, so for NO TN pain but I was wondering if anyone else having this surgery, had a problem with a 'tingling" sensation on the side of there face where the TN was. I notice this “feeling” more when laying down. My Dr. said this was normal and that it was from the packing he put in place, he said the packing may be touching the nerve and it would eventually go away. I was wondering if anyone else had experience this before. And if so could you please let me know.
Hi Linda, I am getting ready to have the surgery myself at UVA in Charlottesville, Va I am scared to death. My date hasn’t been set yet. Was it bad?
I had my MVD about 3 weeks ago and I have some tingling as well.
I also have had painful twinges around my upper ear area.
Rick Smith
Hi, Kelly,
No, it wasn’t. but I know exactly how you feel. I only had two weeks from the time I decided to have the surgery until I did. I had my surgery on Aug. 30. I was scared to death. My surgery was at 8 o’clock on Monday morning and I was out of surgery by 10 o’clock, from there I went to ICU and I stayed there 2 days. I do not remember having any pain at all from the surgery. They gave me morphine and that made me throw up so they quickly changed my med. to something else. I went home the morning of the 3rd day and I have not had even one strike since surgery. My Dr. told me I could, but I could tell he seemed confident I wouldn’t. The only thing I had was a stiff neck, from the way they have to hold and position your head during surgery, but Tylenol takes care of that. I was waking up with Headaches, but that we found out was from Hydro condone, which my husband had me to take the medication just has the Dr. prescribed whether I needed it are not, and I can honestly say I didn’t need it.
I was asked if I would do it again if I had to (hopefully my TN is gone for good) and yes, I would. My Dr. ask me last Tuesday when I went back to get the staples taken out if I was glad he talked me into it and I told his YES!! I had decided to have the balloon compression procedure because I was so afraid of MVD surgery.
I was even dreading the terrible headaches I was told by some that I would have and I have had worse sinus headaches than those were.
I had also joined a group called Daily Strength, and there I met a lot of people who gave me a lot of support. One ladies husband had just had surgery a few months before and she gave me a lot of helpful advice and told me exactly what would happen and she was right. Just a question: Do you have a lot of confidence in your Dr. and the hospital, that helped me a lot. If I can answer any questions from my experience, just let me know, take care!
Kelly Hatcher said:
Hi Linda, I am getting ready to have the surgery myself at UVA in Charlottesville, Va I am scared to death. My date hasn’t been set yet. Was it bad?
Hi, I mentioned this to my surgeon, last Tuesday and did not seem surprised, he said it was probably from the packing he put into place to keep the blood vessel from touching the nerve. I also have the tingling feeling around my incision and around my upper ear and I have had sudden sharp twinges in my upper ear and my incision area. He also said that it would go away. So for, everything he mentioned that would happen has , so hopefully it will soon go away. It does seem that I have noticed it more when I lay my head down to sleep, so I am trying to keep my head elevated more.
Rick Smith said:
I had my MVD about 3 weeks ago and I have some tingling as well.
I also have had painful twinges around my upper ear area.
Rick Smith
Linda Kindle said:
Hi, Kelly,
No, it wasn’t. but I know exactly how you feel. I only had two weeks from the time I decided to have the surgery until I did. I had my surgery on Aug. 30. I was scared to death. My surgery was at 8 o’clock on Monday morning and I was out of surgery by 10 o’clock, from there I went to ICU and I stayed there 2 days. I do not remember having any pain at all from the surgery. They gave me morphine and that made me throw up so they quickly changed my med. to something else. I went home the morning of the 3rd day and I have not had even one strike since surgery. My Dr. told me I could, but I could tell he seemed confident I wouldn’t. The only thing I had was a stiff neck, from the way they have to hold and position your head during surgery, but Tylenol takes care of that. I was waking up with Headaches, but that we found out was from Hydro condone, which my husband had me to take the medication just has the Dr. prescribed whether I needed it are not, and I can honestly say I didn’t need it.
I was asked if I would do it again if I had to (hopefully my TN is gone for good) and yes, I would. My Dr. ask me last Tuesday when I went back to get the staples taken out if I was glad he talked me into it and I told his YES!! I had decided to have the balloon compression procedure because I was so afraid of MVD surgery.
I was even dreading the terrible headaches I was told by some that I would have and I have had worse sinus headaches than those were.
I had also joined a group called Daily Strength, and there I met a lot of people who gave me a lot of support. One ladies husband had just had surgery a few months before and she gave me a lot of helpful advice and told me exactly what would happen and she was right. Just a question: Do you have a lot of confidence in your Dr. and the hospital, that helped me a lot. If I can answer any questions from my experience, just let me know, take care!
Kelly Hatcher said:Hi Linda, I am getting ready to have the surgery myself at UVA in Charlottesville, Va I am scared to death. My date hasn’t been set yet. Was it bad?
Thanks Linda for your help! Did anyone have headaches before the surgery? I am having the MVD surgery is that what you had? You said balloon decompression and that threw me off some. Can you work or do you get disability or is that a bad subject with folks ? I need one of those books for dummies I guess… LOL I feel like I am shooting in the dark without a gun! I am on Dilaudid Liqiud and Fentanyl 50mg patches and boy do you get addicted to them quick. I have not had a attack in a couple of days but I feel so bad and I have been getting headaches and to make it so bad I have a bad tooth on the left side where they are telling me to eat on. Ouch! I am thankful to have someone to talk to. Thank you…
Hi, Kelly
Yes, I had MVD surgery. I was going to have the balloon compression procedure, but my Surgeon talked me into going ahead with the MVD surgery and I am so glad he did. I really didn’t have any headaches before surgery. I was told by the TN board to file for total disability because most do and to hurry up and do so because there was some kind of waiting period, but, I decided to wait and try to get this fixed so I could go back to work, I wouldn’t be able to draw very much disability anyway.
Could it be, that it is your medication giving you the headaches?
I come from a strong family history of TN members. When I first starting having TN strikes I had a pretty good idea I had developed this horrible condition. My brother gave me some carbamazapene (ms) pills to take and I got relief almost instantly. It is the generic to Tegretol. I have been told that if you think you have TN to take carbamazpene and if it stops your pain then you definitely have TN. I have also found that there are a lot of people with TN taking this medication. My TN progressed and I had to start increasing it so much, that my neurologist added Lycrica to it.
There is a book out there called “striking back” and it is a very good book to read if you have TN, it has a lot of answers. I am still on 400 mg of carbamazpene and I will not quit taking it until Dec. 14. I am dreading coming completely off the medication even though I have had the surgery. My Dr. told me that I would have to be weaned off of the medication, even though I will be so glad to get off of the medication , I am nervous about it ( and Yes, that is even after having the MVD surgery) take care!
Kelly Hatcher said:
Thanks Linda for your help! Did anyone have headaches before the surgery? I am having the MVD surgery is that what you had? You said balloon decompression and that threw me off some. Can you work or do you get disability or is that a bad subject with folks ? I need one of those books for dummies I guess… LOL I feel like I am shooting in the dark without a gun! I am on Dilaudid Liqiud and Fentanyl 50mg patches and boy do you get addicted to them quick. I have not had a attack in a couple of days but I feel so bad and I have been getting headaches and to make it so bad I have a bad tooth on the left side where they are telling me to eat on. Ouch! I am thankful to have someone to talk to. Thank you…