Posted , 3 users are following.
I have TN for about 4 yrs I am 58 yrs old.I was on 1800mg of gab 600mg ofox 100 mg of topamax for pain did help until one night in June ended up in ER with at least 150 shocks of pain could not stand up.Decided to get Gamma Knife 10/18 seemed to be going well went off most med only take 300 mg gab n100 topamax.Well dammit it's back had a shock in face this morning. I am just so upset ,depressed, sad, hate this!
0 likes, 7 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
army183 carol97272
Posted
I feel really sad for you after all this time of relative comfort. Did you have a MRI before and was the gamma-k treatment offered to you because of the MRI findings?
Keep safe
Big D
carol97272 army183
Posted
I did have MRI with no significant findings . Went to Univ. Of Pa Hosp I'm the one who opt for gamma knife after reading so much about this horrific thing we suffer with. Maybe wrong decision.
army183 carol97272
Posted
Well, after reading the wide variety of plus and minus experiences on the forum chains here and on the TN Association site in the U.K. it's almost impossible to predict what the very best option should be! There's a topic called "Good news " on the TNA site but even that is hardly brimming with encouragement (you can visit the forums without joining but you can't post). Some bods swear by MVD as the best thing ever, some have had gruesome experiences after it and some continue so to do. The gamma-k people are equally different as with the balloon and oil injection people.
The reason is that we're all different and have varying degrees of TN compression, or no compression at all. I guess you didn't show the compression and so you went for the gamma-k, which seems to be a logical way forward. Some have had that treatment more than once and some have had good relief for some years. Others have not.
This makes it very difficult to decide which was to go of course.
Do you think you might actually have got some compression now and that if you'd had the MRI now, it would have been a better picture. I'd press your neuros for another one I think.
What do you think?
Cheers
D
army183 carol97272
Posted
I think my reply is being moderated because I put a web address in it. I'll send another message later today without the offending item!
Cheers
D
army183 carol97272
Posted
Hey Carol
In summary, my message that was moderated said something like there have been many varying outcomes reported here and at the uk TN Association forum topics about the gamma k method, MVD, glycerol, partial abrasion of the nerve, injections through the cheek, putting a balloon in between the nerve and arteries or musculature. If you read of of these, you could be forgiven for not being able to make a clear decision.
It might be that your nerve is indeed compressed now and that MVD is the way ahead. I'd pressure my neuro bids to di a high quality MRI now anyway. If things have changed at the nerve root, you need to know about it as it might suggest the MVD is brst.
Trouble is, we're all very different with different levels of pain and different pathologies.
There's a forum topic in the U.K. TN site called Success Stories or something similar. It's worth a look; you can read the posts without boing but you can't post yourself.
Good luck
Cheers
Big D
(I hope 2017 is peaceful and shows improved health for you)
dan45224 carol97272
Posted
I am sincerely sorry, I am 56 and have been dealing with TN for 4 years like you. I am learning three things. First you better be prepared for a fight, you have to be a fighter, It's like Cancer, I know had cancer twice and as a result of many surgeries I acquired TN. Second be informed information ! is your best defence ! stay informed thru forums such as this one, and research different treatments and research that are continually evolving. Third and most important is patients ! I consider this my offence, by being patient I won't take take just any treatment that comes down the turn pike. I Sincerely want you to know that you are not alone Carrell there are many of us, It is my prayer that a cure is found for our malady.
army183 dan45224
Posted
Well said Dan. Indeed an important strategy is to gain as much information as possible from the many people who have been down this road, with varying amounts of success.
"External" research is also a very good way of getting the current medical views on success rates with different types of therapies. There are a lot of medical/surgical reviews which put each of the several therapies in place. You may know of some of these already by way of your own researching, but I can't put links in here otherwise my reply gets sent off for moderation and then does not appear in the forum at all.
Cheers All
Big D