I was wondering if anyone has had the Gamma procedure, with short-term success, only to have the pain return? I had the procedure in October, 2011 and initially went through some pain episodes. Then, it seemed all of a sudden, the pain was gone.
Then, over the last several weeks, the pain has shifted and is worse than it was before the procedure. The pain was originally in the upper part of my face and cheek. Now it is in my jaw and includes numbness in my tongue on that side.
Does anyone have any suggestions for me with regard to my re-curing pain? My doctor did say that some people have to have the procedure repeated, which I don't want to do. I definitely do NOT want to have to have the brain operation, though.
Any suggestions/information would be much appreciate.
In the state you’re in right now, it’s not the time to make a decision. Get your pain under control asap. Then, do your research.
When I was on year three of tn, and the pain returned from gk #1, I too, still did not want to have the mvd. (Please see my page for details.) I went in for gk #2 and it worked for a few months and failed again. Shortly after I did my research on mvd and settled on dr carson at johns hopkins. He said since the gk was done twice, he was confident he could help my pain, but not sure to what extent. He took away the high, stabbing ear pain, but I am left with nerve damage from the radiation burns.
Be very careful to research and interview docs for some time before deciding. Try your best to get this pain down and controlled soon. Msg me if you’d like to talk privately.
Sincerely,
LyndaS
I am in my 4th year of symptoms and ended-up with my current doc after dentists, endodontists, etc. I would like to message you to discuss, but don't know how. How do I get in touch with you.
Also, you mentioned not making a decision until I get my pain under control. Do you have ANY suggestions on how to do that? I take vicodin, which allows me to pass-out, but it doesn't help the pain AT ALL :-(
First, you need a neurologist or a pain management specialist. The neurosugeon may be able to recommend the best he knows in either field, or
Google pain specialst and then google neurologist in your area. Your insurance will also have a list on tbeir site within a certain radiois of you. And, here on this site you can find all sorts of info uncluding docs and other important info unfdr the face pain info tab, top right. The endthepain.org site is also helpful. They have normal working hours.
Did you have anti -seizure or -convulsant meds before the gamma knife? I’m on a new time release neurontin called Grallise that has proven highly effective. I take 1200 mg each day w/ dinner as opposed to 2400 mg gabapentin (generic) in four divided doses. Apparently the body absorbs more med when given in small increments more often. This is what the time release does. Unfortunately this type of med is first line for tn. Under the face pain tab above, there is a list of meds for tn with explanation of each. There is also a medial history print out that is recommended to keep with you at all times.
To msg me, click on my name to go to my page. I think on that page there is a place to send msg under my pic on the left. I don’t have this option from my phone at present.
Take care,
LyndaS
Christine P. said:
Thank you for the quick reply.
I am in my 4th year of symptoms and ended-up with my current doc after dentists, endodontists, etc. I would like to message you to discuss, but don’t know how. How do I get in touch with you.
Also, you mentioned not making a decision until I get my pain under control. Do you have ANY suggestions on how to do that? I take vicodin, which allows me to pass-out, but it doesn’t help the pain AT ALL
Hi - I have been off-line for a while, as I was on a break with my husband.
Anyway, I had a couple more questions for you. My mouth has felt like it is burning inside lately. I have never had these symptoms before, but over the last month or so, it feels like the roof of my mouth and gums are on FIRE :-( I even talked to my dentist about the pain, as I thought there were sores in my mouth; there are not.
Have you ever had these symptoms?
Also, I went to my neurologist again, as I need some help. They suggested that I do the Gamma Knife OR Cyber Knife again, rather than going right to brain surgery. I am in misery, so they have also suggested I start back on the neurontin. I don't want to be on meds forever, but I am in so much pain I'm feeling desperate.
I will post something about the mouth pain, to get as much support as possible.
Look forward to hearing from you and hope you are well.
