I'm now at 4 months since having MVD surgery. After the surgery, I have continued to have soreness in my face below my cheek bone. Dr. Sekula has had me taking daily Ibuprofen ever since the MVD. He thought maybe the jaw joint or muscle had been strained when I was intubated during surgery. I have been completely shock free since the surgery. This past week the soreness has now changed to spasms. The spasms feel very close to being shocked. I found out yesterday that Dr. Sekula has left the practice where he was working & has taken a new job. I've sent him an email to call me, but haven't heard back from him yet. Has anybody had soreness & spasms after having MVD surgery in the jaw area of the face? I'm thinking the jaw joint or muscle was damaged during the surgery & the spasms are coming from there & not the trigeminal nerve. I've been putting heat on my face & thinking that I probably should go for about 2 weeks eating only soft food to see if this will help the damage heal. Anybody have any experience with this one?
All my best,
Judy
Judy,
I just read your post, I am now almost 7 months passed my surgery. I also get from time to time those tingles and spasms beside of my nose and above my lips. They are like you described; as being very close to a shock but not. I am still on 400mg a day of carbamazepine and this month I am supposed to cut back to only 200mg then hopefully in Aug. which will be a year following my surgery I should be able to stop the medication. I have not had any soreness as you described but I have had numbness around my lips, tounge and above where my incision was. I have also not had a strike "shock" since my surgery.
I have put in a call to my Dr. and his nurse is supposed to call be back this afternoon and talk with me about my concerns "which" are the spasms. My Doctor told me to stay on the medication for about a year because he said the nerve itself had to have time to heal when it was very irritated, he said if not it could cause "shocks" (TN pain) and he said if I was tolerating the medication why then take a chance, I almost started crying when he said this because I wanted totally off the medication, so, I am wondering if this is from the irritation still of the nerve. I will probably always have some numbness to live with because my Dr. has already told me that and that I can deal with. Hopefully they will be able to tell me something this afternoon as to what they think is causing the spasms. I will post and let you know what I find out.
Linda
Thanks Linda. I will be interested to know what you are told! I'm considering beginning my trileptal again today to see if that will make any difference. All I know is that whatever is going on appears to be getting worse. I didn't have any spasms following the surgery...only soreness in the jaw muscle. Soreness was one thing, but these spasms have me very worried now. Plus, I leave for Jamaica this weekend.
Linda Kindle said:
Judy,
I just read your post, I am now almost 7 months passed my surgery. I also get from time to time those tingles and spasms beside of my nose and above my lips. They are like you described; as being very close to a shock but not. I am still on 400mg a day of carbamazepine and this month I am supposed to cut back to only 200mg then hopefully in Aug. which will be a year following my surgery I should be able to stop the medication. I have not had any soreness as you described but I have had numbness around my lips, tounge and above where my incision was. I have also not had a strike "shock" since my surgery.
I have put in a call to my Dr. and his nurse is supposed to call be back this afternoon and talk with me about my concerns "which" are the spasms. My Doctor told me to stay on the medication for about a year because he said the nerve itself had to have time to heal when it was very irritated, he said if not it could cause "shocks" (TN pain) and he said if I was tolerating the medication why then take a chance, I almost started crying when he said this because I wanted totally off the medication, so, I am wondering if this is from the irritation still of the nerve. I will probably always have some numbness to live with because my Dr. has already told me that and that I can deal with. Hopefully they will be able to tell me something this afternoon as to what they think is causing the spasms. I will post and let you know what I find out.
Linda
Dr. Sekula called, & it is the Trigeminal Nerve. I have to stay on the Trileptal for the next 2 weeks, & then he wants to talk to me again. Sometimes the pain will return briefly because the trigeminal nerve isn't completely healed. There is also the possibility that I will have to fly back to Pennsylvania for him to do a glycerol rhizotomy surgery. I'm wondering if I will ever be free of this affliction...
All my best,
Judy
I found out the same thing yesterday when my Dr. called. He said hopefully it was just the trigeminal nerve still healing. He reminded me again, that is why he wanted me to stay on the medication for about 6 months to a year. He told me, I could possibly have the spasms for 1 , 2 ,3 years are more depending on how severe the trigeminal nerve was damaged. He said to continue on carbamazepine 400mg one in the morning and one at night for who knows along, might just be the rest of my life. But if the pain continued to progress, and if it became like it was before,then to come back in and he would consider the same thing"glycerol rhizotomy surgery".
I am wondering the same thing to. I thought having MVD I would be free of this affliction. I am so disgusted right now. The glycerol rhizotomy surgery is what I wanted to begin with instead of MVD because it seemed to be the only thing that helped my Aunt, her son and my brother. I so wished now I would have tried it first. Although, my Aunt is 88 and had the glycerol rhizotomy about 20 years ago, she is once again, having TN pains now in her lower jaw area, instead of where it was originally in her lip and eye. Im sorry, I am just a little disgusted right now.
Judy Baird said:
Dr. Sekula called, & it is the Trigeminal Nerve. I have to stay on the Trileptal for the next 2 weeks, & then he wants to talk to me again. Sometimes the pain will return briefly because the trigeminal nerve isn't completely healed. There is also the possibility that I will have to fly back to Pennsylvania for him to do a glycerol rhizotomy surgery. I'm wondering if I will ever be free of this affliction...
All my best,
Judy