It's now less than 2 weeks for my surgery and I'm excited yet apprehensive. It's like being caught between a rock and a hard place. I am now on 1500mg's of Tegratol and just had to add 900mg's of neurotin. I don't know how anyone can function with that amount and do their job. I can't drive, and have a hard time working. What scares me is I feel I don't have a choice to have the surgery, but...my god...what if it doesn't work?
This is the only place I can go to share and read about how people cope with this horrible condition. I am so surprised when you talk to most anyone (outside this forum) about it...they have no idea what this is. Then when you describe it, they can't believe anything like this even existed. Interesting I think.
Can there ever be a cure for this? Who knows, but I wish they would hurry. :)
Hang in there eveyone and good luck with your daily fight against this monster we have in our head.
Bob, I want to wish you all the very best with your op. Many have had great success with it. And then often we never see them again as they go off and enjoy their life with vigor, and who shall blame them? So it is important to remember that the stories of the op not being successful are often what we see on a support group. Don't forget the statistics are heavily stacked in your favor.
I am new to this site and I am curious about your surgery. The doctors at Wake Forest Baptist Medical Center really want me to do the Gamma knife surgery; is that what you are having done? Scares me also. I have been dealing with this for around 15 years and have had period with no pain. I am just coming off of a two year hiatus and it is back. I am in so much pain and my meds have expired. I am trying to get in to see the doctor.
Unless you have some health condition that renders you vulnerable to complications from an open-skull surgery, I would advise strongly against Gamma Knife. The procedure has a 50% failure rate within three years, and it can cause complications for any follow-on procedure. MVD is significantly superior in both initial success rates and long term persistence. About 70% of all MVD patients have pain relief or significant improvement for 12 years or more. MVD works better for Type I TN pain than for Type II, but even there, the stats are not zero-success. About 50% of Type II patients have a 50% improvement or pain free rate after five years.
If you want to read the practice standard for Gamma Knife, you can send me mail at ■■■■■■■■■■■■■■■■■■■. I cannot append the standard here because it is copyrighted.
Thanks Red! I have heard some "iffy" results as well which is why I am keeping with the drugs until I can't stand it anymore. I will look into the MVD as I am not sure what that involves. I hate living with a time bomb that lays dormant (for lack of a better word) then rears it's ugly head again at some unspecified time. *sigh*
There is a group on MVD here at Living with TN, Sandy. A lot of people in that forum have had failures -- which is understandable when you consider the nature of our membership. Former patients rarely stick with a support site for long after they get a viable solution.
Hi Bob, I am eating my meals with a spoon also. Right now I have vanilla yogurt with strawberries cut really tiny and it is difficult. I hope your surgery goes well and you can report back your results.
Red, Thanks for steering me in the right direction. I am very new and am just figuring out where it all is. I work from home also so I haven't had time to play with all the information on here.
If you are in NC, you should look into neurosurgeons at Duke. I met with a Dr. Fukushima and will be going to him for surgery when I am ready to travel that road. I had it scheduled and postponed it for now as the Trileptal is currently controlling my pain about 95%. If the med starts to fail and/or the pain returns at its previous level I will contact his office to reschedule. He too told me what Red advised you...that Gamma Knife often does more harm than good. Do your research and find a doctor who will truly listen to you! One thing I've learned with TN, there are no easy answers!
Thank you for that! I am in NC and certainly could go that route. The gamma knife surgeons were actually doing a procedure on my father to remove a tumor which is why I even spoke with them. My doctor would probably recommend a different route based on the info. I do want to say back when they spoke to me it was in 2004, lots of changes since then I am sure.
I am 15 days post MVD. DO IT, DO IT, DO IT! I have had 6 years of this nonsense. I went in with no clear compression on any MRI. I went to Duke as well, Dr Zomorodi. Not only did he find 1 compression but found 3. Two arteries and a vein. He said my nerve was scrunched up in an ‘S’ curve. He sai the vein was literally running thru the nerve so he cauterized and removed it. He tacked up the arteries away from the nerve and padded it. Surgery was a breeze. About 3 hours. Recovery has been really rough and some of the pain dod return today, but I am also weaning off oxycontin and the gabapentin so a little is expected. Apparently nerves take a long time to heal. But the moment I opened my eyes I knew the pain was gone. K started poking my face at the trigger points and when they were pain free I bawled like a baby. A few weeks of recovery are worth a lifetime of freedom…
Like you, Bob, I was terrified that it would fail. We really don’t have a lot of other options. But it was so worth getting this thing straightened out. Good luck my friend…
No. I actually don’t work outside the home, but I heard you get released to return to work at 3 weeks.
I tried and tried to put off this surgery for one reason or another and my dr looked me square in the eye and asked me. “Its up to you…how much longer do you want to live in this present condition.” I scheduled my surgery that day. I just want it over. I am almost there…a couple more weeks of medicine weaning and its all over.
The drugs have made me very emotional. Has anyone else experienced this? Sometimes I could cry at the drop of a pin. I just can't control it. My son thinks I'm weird and laughs at me.
I do believe that stress played a major part in onset of my pain. I am a very stressful person, also have great deal of anger issues. But First trigger was my dental cleaning. But before that I was under a lot of stress as my son graduated and was trying so hard to get a job. Great deal of stress right there.
Sandy said:
One other thing, do you see any correlation between stress and the onset of the TN? I have had several on and off periods and I wondered.....
Eight weeks is long, Teri. I've talked with patients who were back to work in two weeks, and the majority seem to be able to return between two and four.
My onset was after a root canal. It is strange about the stress though. I made it, without pain, through my Dad's journey with cancer that ended in his death but.......that may have been a God thing. I certainly had a lot going on then. :)
Pebbles said:
I do believe that stress played a major part in onset of my pain. I am a very stressful person, also have great deal of anger issues. But First trigger was my dental cleaning. But before that I was under a lot of stress as my son graduated and was trying so hard to get a job. Great deal of stress right there.
Sandy said:
One other thing, do you see any correlation between stress and the onset of the TN? I have had several on and off periods and I wondered.....
