seems like the longer you wait the more damage is done to the nerve, so wouldnt sooner be better? i read about how long people suffered in some cases, makes me sad to hear that. i all ready hate the meds, and it has only been a week! ;-]
should i get used to them? i would love to hear what you all think.
Those meds made me have to search for words… Even dogs name!
Some ins. Or MVD surgeons make you try 3 meds…or… If meds compromise quality of life… I had no life! Newer studies say 3–7 yrs after onset is higher success rates. My number one mission became to get surgery after only a few months of diagnosis and IQ lowering meds.
I researched here and found a top TN surgeon and flew to his state… I was lucky… Getting the right dr. Who has done mannnny MVDs is crucial for raising the odds in your favor…mannnny MVD stories here lately…
Keep learning, asking and posting
<Those meds made me have to search for words... Even dogs name!> lol that is how i feel!
i guess it is in the insurance companies best interest to keep pushing meds instead of surgery. im 55 and have insurance now so i would like to get mvd...im jumping the gun though as i have not had the mri yet so yea...if it is TN in the classic version i will push for surgery. It would seem though that the sooner it is discovered and the veins separated from the nerve the better the chances for full recovery. Kc Dancer Kc
what studies can i find online?
My first TN shock was in the Spring of 2012. My MVD surgery was in December. My pain did not become moderately severe until November and I immediately scheduled the surgery as I hated what the meds did to me. I am 100% pain free. I have read studies that state the sooner the surgery the more lasting the results but I believe each case is different. I am 68 and healthy but was concerned that might not last and did not want to be denied surgery because of health concerns. Most importantly, find the best surgeon you can. Mine does an average of 2 MVD's each week, is a professor teaching skull based surgical techniques and is a very likable, compassionate doctor.
Good luck to you.
right on MimiK ! that was the feedback i was looking for i think. where did you find the info on surgrey results?
yea i would most likely go to a different place after diagnosis since all this place does is gama knife. the doc told me all they could do was try to kill the nerve! lol wow, just wow. http://www.neurocenter.com/the-neurology-center/our-doctors.aspx
they seem to deal with ms more than anything at this place. i will ask the doc to recommend someone if that is the case though. and weird since i always thought scripts was a top hospital. i have a lot to learn i see ;-]
I've been wondering the same, especially discovering the disease is progressive and periods between remissions become shorter as you become older... and i'm becoming older now!
I've been on the meds 3 weeks, am on the top dose of carbemazapine and not far off with topiramate, but being told I have to wait anything up to 8 weeks to see if they're effective.
The fact that i'm up at 2am suggests they're not that effective.
To be fair, its the first time I've given up on trying to sleep, but I've spent several nights crying out in my sleep because of the pain, and my days have been spent either stuck in bed or on the couch. I cant walk further than to the bathroom - and that's because of the dizziness/nausea of the meds. I've lost my life pretty much.
I imagine you have too. I imagine surgery would give it back, without the side effects. Seems like a no brainer to me.
But I haven't done much research yet, that's just my gut reaction.
I first had shocks/ATN pain in March of 2012. I researched and found that Johns Hopkins treated TN. I live an hour from there so I ended up with a consult in June, that was the first I could get. I had a glycerine Rhizotomy in July, which helped the TN pain but not the Atn, so JH sent me to Dr. Brown in NY and I had an MVD in October of 2012.
I am an insurance adjuster on the road all day, so I could not work on the meds or drive, so I had no choice but to attempt surgery. I will say it was successful and I am pain free from TN.
I was told that if you have an MVD in the first 7 years, that is the best chance, time wise for a successful one
Wendy "crashgirl"
This is a good publication on results.
The MRI they give is to rule out MS or tumor --- most MRIs do NOT find compressions --- even specialty types of MRI - they just have to get in there --- then they find them. Getting the diagnosis for many is half the battle - after some lives are ruined an MVD becomes their biggest hope.
For TN1 rates are at or above 90% -- I'm 50 and mine was 1.5 years ago..... TN 1 comes back somewhat at 2% -- I can live with that.
May have to have another in my lifetime and that will have to be okay.... Not a permanent cure... but some can last 10+ years.!!!
Keep Posting!
Hi Mace,
From personal experience my TN did nkt get diagnosed after suffering for 23 years, yup thats right. Had MVD left side, diagnosed in Jan 2013 with right sided , surgeon wanted to operated in Feb had to cancel because of bone infection. Infections gone , here I come. I am so ready. Even with other nerve compressions in other areas such as the back, if not tended to no one knows if the nerve will bounce back. The literature says if you have mvd within a few years time the percentages are very good for pain relief. Thats how I feel Mace, tired of the meds making me feel like marshmallow. The memory loss, cognitive thinking, so damn emotional on a dime. Not happy with this at all. If they had this procedure 23 years ago or diagnosed properly would have jumped in the OR table LOL! I truely mean it. Gool Luck Mace wish you the very very best! Excuse mispelling thats another problem for me
My Best
joannexo