I'm new here so let me give you a short intro first. I was diagnosed with TN in August 2003 and Multiple Sclerosis in October 2003. I went to an ENT doctor in August 2003 for excruciating pain in my left eye, nose and jaw. I also had a numb tongue, throat and chin so he sent me to a neurologist ASAP. I was diagnosed with TN and two months later with MS. For TN, I started out on Neurontin but it stopped working 6 months later so I was switched to Tegretol. I am now on 1200mg a day but I still have break through pain. My MRIs dont reveal any nerve compression so it's felt that MVD surgery wouldnt help me. It's my understanding that because my TN is caused by MS, there isnt a whole lot that any kind of surgery can offer me.
However....
Now for my question. It's being suggested that I have radiofrequency surgery for TN. It may or may not work. Could you share your experience with this surgery? Side effects, lasting and temporary? Did it alleviate your pain? For how long has it alleviated the pain (permanently I hope)? I'm seeing a radiologist on Tuesday. I would appreciate any suggestions you have for questions I should ask him.
This is what I found out from the doctor. The surgery is called stereotactic radio surgery or SRS. We discussed MVD and SRS. I am not a candidate for MVD surgery because there is no vascular involvement so we concentrated on SRS. SRS takes most of a day even though the procedure itself only takes about a hour. You will have to wear a headframe for the procedure. You are observed for most of the day. The stats are fairly good 80-90% some pain relief with 10-15% with resulting facial numbness. If the pain returns it can be repeated one time. You are required to take a few days of steroids prior to the procedure 4mg, 4 X a day for 4 days. There can be some hair loss above the ear from the radiation. There is a rare chance that it could make the pain worse.
I had the radiofrequency surgery done a few months ago.the procedure wassnt bad but i have to say it didnt help with the pain.I also had nerve blocks done before and after the radiofrequency surgery and still found no relief.Keep me updated about SRS procedure and if it works for ya
Marina,
Thank you for your reply. I’m so sorry this procedure didnt work for you.
Is there anything else you can tell me? Why do you think it didnt work for you? The doctor is telling me 80-90% of the people who have this procedure get some sort of pain relief but I’m having my doubts about that.
marina said:
I had the radiofrequency surgery done a few months ago.the procedure wassnt bad but i have to say it didnt help with the pain.I also had nerve blocks done before and after the radiofrequency surgery and still found no relief.Keep me updated about SRS procedure and if it works for ya
I aint sure why it didnt work.Wish i knew so i can fix it.SO fustrated with this pain day in and day out…going to the docs tomorrow to see what else can be done
Joy said:
Marina, Thank you for your reply. I’m so sorry this procedure didnt work for you.
Is there anything else you can tell me? Why do you think it didnt work for you? The doctor is telling me 80-90% of the people who have this procedure get some sort of pain relief but I’m having my doubts about that.
marina said:
I had the radiofrequency surgery done a few months ago.the procedure wassnt bad but i have to say it didnt help with the pain.I also had nerve blocks done before and after the radiofrequency surgery and still found no relief.Keep me updated about SRS procedure and if it works for ya
Marina,
Thank you for your reply. I’m so sorry this didnt work for you and I hope your doctor will have some ideas.
Best to you,
Joy
marina said:
I aint sure why it didnt work.Wish i knew so i can fix it.SO fustrated with this pain day in and day out…going to the docs tomorrow to see what else can be done
Joy said:
Marina, Thank you for your reply. I’m so sorry this procedure didnt work for you.
Is there anything else you can tell me? Why do you think it didnt work for you? The doctor is telling me 80-90% of the people who have this procedure get some sort of pain relief but I’m having my doubts about that.
marina said:
I had the radiofrequency surgery done a few months ago.the procedure wassnt bad but i have to say it didnt help with the pain.I also had nerve blocks done before and after the radiofrequency surgery and still found no relief.Keep me updated about SRS procedure and if it works for ya
Hi Joy! You have dealt with this for quite some time. My first SRS lasted 2 weeks, to the day. My 2nd lasted 3 months…leaving a brachial lesion. Ataxia, memory loss, visual, perceptual; I tend to be the exception, I’m special.
These procedures were after an MVD that turned out to be a craniotomy. That lasted 2 weeks to the day! I can only share hope and gratitude, things could always be worse. bob