Join Date: Dec 2007
Sorry to hear that you are having problems, all of us here can understand where you are and the fear of where you are going,,,so I have some questions if you feel comfortable enough to answer,,
how old are you, do you have any other medical issues (chronic), did your MD say why he feels the balloon treatment is the best for you or is it just the one he prefers, is it a Neuro? what drugs have you taken and at what doses and what were the side effects?
If you can give us some more info we might be able to give you some insight as to why your being given the direction you are,
That being said,,,Balloon compression is not the "go to" treatment of choice for most MD's so that's why I'm asking. It seems unusual, at this stage if an MVD is not indicated than usually you would be starting on a good drug program, often being more than one drug, that covers the pain before it starts,,that's the goal. You may have occasional breakthrough pain but the goal is to not let it go that far, taking meds on a constant and consistent basis to prevent the pain from happening. I find it curious that this MD is not moving you in that direction.
Next, just because he does not see anything on an MRI,,I get, did they do an MRA (checking the vascular system with a dye or contrast) gives a better look at what's going on. And that an MVD is not indicated what about a gamma knife (not my favorite) or radiofrequency rhizodomy? both are viable and last longer with better results...
It just feels odd without more info about you.
If you haven't gotten it yet, I would invest in "striking back" probably the best book out there on TN, it helps and can be very reassuring.
From the little I have what I would suggest first and foremost is "get a second opinion", the advise you are getting seems old and out dated (unless you have other medical issues) not taking into account your pain and your fears, both of which play a large role in adding to your stress and then adding to your attacks,,so it needs to be addressed and it sounds like this MD is not doing that. Perhaps think about finding another MD that does listen better and deals with your issues.
The chances are you need to be either on a larger dose of medication (to prevent attacks, twinges, ticks etc) or a combination of meds. All of us end up there at one point or another and it does work and for some people depending on the severity of the TN and how quickly it progresses, it may be as far as you need to go. You sound like you are at the beginning of this journey there are still many options out there, don't be so willing to just jump at something that sounds like it will fix it....nothing fixes it, there is no magic pill or procedure. Some things work for some people and not others. I had an MVD early on, it didn't work, that does not mean I tell everyone not to have it, I think it can be a great procedure for the right person but not for everyone.
There are some things you can do to start taking control of your own health and make some significant changes for the better.
A good B complex vitamin, don't just assume the stuff at walmart is as good,,it isn't . Buy the best vitamin you can afford to take,,,
stop using aspartame, MSG, Caffeine and sugars (if possible).
Learn to control your breathing,,,learn to meditate. It doesn't have to be anything off the wall but getting a CD that will teach you simple meditation techniques will help you control stress (always waiting for that shoe to drop, when is the next attack?) control your breathing and learn to relax your muscles all those things can really play a big role in controlling chronic pain,,,this is the one that everyone avoids doing and helps the most!!!
From there give us a bit more info and maybe between myself and some of the other folks here that have lots of experience and ideas, we may be able to point you in a direction to really get you on a good track,,,remember we have all been there and we get it. If you have questions, ask,,someone will have an answer,, if you need help or just need whatever,,we do get it. We can't fix it but we can probably help.
Good luck, we are all here with you. Keep us posted on how things are going,,,, all the best, Beth