Hello all. I am an ATN patient. Failed MVD (12 days) was 8 months ago. My pain is constant, and in the second branch of the left side. I am unable to take anti seizure or anti depressants due to the strong side effects I experience. My current neuro has me on long acting oxy, (which barely covers the 24/7 pain) and vicodin for the breakthrough pain, because I tolerate narcotics well.But at 30 years old, I would like to think about a day when I am not dependent on pain meds so that just maybe...I can think about having babies, or going out for drinks with my friends.
Last week, he scheduled a consult for "radiation therapy" which I assume to be Gamma Knife. He also mentioned Botox injections, and later his nurse called and asked about a nerve block.
I am just looking for feedback or advice from people with similar pain, procedures, or knowledge on these topics.
You are way too young to have to go through this! I'm 10 years in as it began at age 37 for me. After two failed Gamma Knives (which work better on the elderly) and an MVD that took care of the TN1 symptoms, I am left with a constant pain plus attacks that are a lesser degree of the TN1 level 10 pains. My tolerance on meds are pretty low since the onset of this disorder and I do use 7 meds in a rotating fashion with Neurontin (a low dose at 1200 mgs divided in 3 doses p/dat) and tegretol 100mg 3x p/day.
For migraine and advil, I use Amerge and funny thing is that it takes the TN pain down along with the migraine pain. Since April 2009 I've been getting botox to my scalp in a crown area for injections, very little in my face near my ear to block the TN pain. I paid for the botox out of pocket to the tune of $5K+ and then the FDA approved the med for migraines, so now the insurance takes care of it ($293 every 6-8 weeks for 200 units). It cost me eleven dollars p/unit, so paying out of pocket would not buy 200 units every 6-8 weeks! The injections hurt like hell. My pain tolerance has dropped drastically since the onset of this disease and experiencing daily pain. BUT it is well worth the pain of the injections because it causes bigger windows of manageable pain or no pain at all. There is part of the nerve that will not be stopped with Botox, but using the migraine distribution model is of great help. The allergen company that makes botox has a financial help plan where they will pay for your treatment up to a year. Your doctor has to fill out paperwork and so do you but it might be worth giving it a try. I over-wished on this med, hoping it would be the saving grace road to a pain free life, but it isn't quite what I'd hoped.
The doc who treats me also is using a bit of steroid to block certain areas of the scalp that are still extremely painful since the MVD. He says the only downfall with the steroid nerve block is that it can thin the skin over time. So he uses this on one area every 6 months. I hope this is helpful for you. If you have specific questions, fell free to message me. Take care, MissTammie! Sincerely, LyndaS
I'm so sorry you're going through this, but PLEASE don't allow your doctor to decide what your treatment will be until you have the time to fully research your options and what the procedures he's recommending could cause. And don't let him rush you into anything!
It's your right to say, Yeah or Nay! There are many members here who wish they'd never heard the words Gamma Knife, let alone gone through with it. You can do a search here on the subject and speak with other members who have had this procedure done.
As a second procedure, medical literature suggests that another MVD will have a better chance of success than Gamma Knife. Even as a FIRST procedure, 50% of Gamma Knife operations against typical TN will fail within three years. In second procedures, there is an elevated risk of deafferentiation pain from GK, which is an even more intractable form of trigeminal pain.
Hey tammie, I know this is an old post, but did end up trying botox and did it help ? My neurologist see's it as a possible treatment option for myself but in Australia it isnt covered under the PBS scheme so I would be out of pocket a pretty penny. Thanks