Hi again.I just thought if anyone was interested,I would put an update for anyone to read on the site.
As of today I am back on 2 pills a day (carbamazepine) from no pain for a month,back to 4 pills again,for a short period.Well my pain is even different.It moved from one place to another and is not nearly as severe as before the GK.Most of the time it is a soreness like pain not sharp or stabbing.When I try to eat or drink it seems like I am stretching the nerve,which causes a sharp pain.I found a way to eat,very slowly,but it works.It has been 6 weeks since my GK procedure was performed.The problem area is right under my lip that covers about a 2 inch square area.As I sit here, I have very little pain.I was told for the GK to take full effect, it will take time.I am not sure if I really need the pain med but I don't want to abruptly stop taking it....Happy Holidays...hope everyone is pain free.
I just wanted to thank you for your post. I had an appointment with my neurologist yesterday, and this is the third time he has suggested Gamma Knife to me. I hope you will find time to update as the process goes along.
Thanks for the helpful insight. I'm waiting 6 months so that insurance will cover CyberKnife surgery--the quote was an unbelievable $85,000 for outpatient treatment[!] at my alma mater, Stanford.
My jaw pain is similar to yours while eating--sharp stabbing pain, and also includes pain moving the tongue, jaw, touching gums or teeth or even talking.
I'm tempted sometimes to believe the pain comes in periodic attacks and I'm fooled to think the medications really help. Like after an attack rendering Cymbalta+Tegretol ineffective recently, I switched to Oxcarbazapine. The side effects (nausea, dizziness, disorientation) were nasty. After 2 weeks, the pain gratefully receded, disappearing completely. I gradually backed off on all the meds and am doing fine so far.
Hope your GK treatment frees you from all pain soon.
Hi Dave, Its been about 6 months for me and overall I would say Gk worked. I went from pain all day to having a attack maybe one a week. Your right the pain is different, but still hurts. I hope you have a wonderful christmas and pain free.
Dave,Im sorry you are still in pain.It took 9 weeks for my TN pain to go away.It continues to work the area for 2 years + i have heard so hang in there.Im so glad i did it.I have a very slight tingle sometimes around my eye and that is it.And no meds!A AVM caused my nerve to flair up.That was treated 2 years ago with a Cyber knife and it showed no change last MRI,but they still wanted to give it time.Merry Christmas!
Difficult to chew! Taking 150mg of oxcarbazepine every other day and no pain for more than a year. The numbness is bothersome but better than the pain!
I had exactly the same experience after my gamma knife. It lasted 6 months total. Mayo and other specialist said I should of had the MVD first. They are finding out that the other procedure that damage the nerve does just what it is doing to you. My MVD lasted 6 weeks and I have had to other procedures. The TN controls all the nerves in your face. You will get relief in one area then it start in another area. Good luck. I hope you do better than I have.
I had GK in 2009 and went off drugs within a week or two. Have not had any TN pain since then needing meds.
I do have a different result which is a burning numbness of the upper lip and mouth corner. It is more annoying than painful and I will gratefully trade it for the TN1 pain I had before the GK.
The numbness began 1 I/2 yrs. after the GK. A side of the tongue, a nostril and upper/lower gums are numb as well, but do not burn ( like a sunburn) as does the upper lip and moth corner.
I ordered a book from the Facial Pain Assn. called STRIKING BACK! The Trigeminal Neuralgia and Face Pain Handbook.
The book has been invaluable to me. My GK was done at Hoag Hospital Neuro Siences Institute in Newport Beach, CA.
I hope your recovery advances to a point where you can feel better off than you were before the GK.
Hi TLorain. Thanks for the reply to my comments.I don't think I would mind some burning and numbness if I were off the carbazepine,and having very little pain for as long as you have.
TLorain said:
Hi Dave,,
I had GK in 2009 and went off drugs within a week or two. Have not had any TN pain since then needing meds.
I do have a different result which is a burning numbness of the upper lip and mouth corner. It is more annoying than painful and I will gratefully trade it for the TN1 pain I had before the GK.
The numbness began 1 I/2 yrs. after the GK. A side of the tongue, a nostril and upper/lower gums are numb as well, but do not burn ( like a sunburn) as does the upper lip and moth corner.
I ordered a book from the Facial Pain Assn. called STRIKING BACK! The Trigeminal Neuralgia and Face Pain Handbook.
The book has been invaluable to me. My GK was done at Hoag Hospital Neuro Siences Institute in Newport Beach, CA.
I hope your recovery advances to a point where you can feel better off than you were before the GK.
I had GK in 2007 and it took about 3 months for the pain to go. I then had almost two years with no bad sensation or pain, but then I had a tingling in my face and tongue which has now increased to numbness, non-stop pain, twitching, burning sensation and stabbing in my eye and tongue all the time except;when I am asleep. I had very bad TN which used to make me scream with agony and did not stop with Tegratol which I was taking in increasing doses with bad side effects. Last week I saw a surgeon and he showed me on the MRI scan where the nerve is being affected by a blood vessel. He is going to do an MVD so let's hope that works.
I hope you will continue to recover and that your pain will be completely gone in the new year! I have not had any kind of surgery but always realize that it could be in my future. Take care.
sorry if this is a repeat, im confused about how to do things on all the meds im on ... that being said, i had GK April 2012 ... after the procedure the pain was worse ... i found this support group and learned a lot and i took that information back to my neurologist ... i was taking gabapentin, 2 piils, four times a day and baclofen three times a day ... the pain was managed and by managed i mean i had the burning sensations but not the stabbing ice pick pain ... the pain came back so we increased some of my meds ... tha worked for awhile ... now it is the holidays and the pain is back ... i will try the doctors office after the first of the year if i can hold out