1 MVD, 2 Gamma Knife done / pain bakc

[mkoop2surgeriesdone]

Had an MVD done in Jan 2002 by Dr Tew in Cincinnati. That was after years of doctors misdiagnosing me, then

finding out what I had all by myself by typing in symptons on the internet in 2000. In Dec 2001 pain got so

bad they rushed me to hospital on Xmas Eve as I could no longer talk, eat, drink or swallow. Pains lasted

45 minutes or so with a 5 to 10 second pause then another 45 minutes. Swallowing would always set off a new episode.

Within a week at hospital I started feeling better, I was taking lots of tegretol even before pain got bad

After Dr Tew MVD pain went into remission until Sept 2010. I got on tegretol again and before pain

could totally disable me this time I had a Gamma Knife procedure in Sept 2010 at Kettering Hospital

near Dayton, OH. Funny thing is my pain went into remission before the Gamma Knife but proceeded

with it anyhow as I remembered how bad it could get. By the way I lost 30 pounds in about 30 days prior

to my MVD in 2002 as I could not get anything, liquids or solids, past my lips. After Gamma Knife in 2010 I stayed pain

free until my Retirement in Nov 2013 - where I went to Florida for the winter . I am an Ohio resident. So I was a

snowbird. By mid-Nov 2013 I was back in pain and the local neurologist put me on trileptol, even though I asked

for tegratol. I was now in Fla trying to enjoy retirement with my wife and the pain got so bad I again could not

eat,drink,swallow. Again I was rushed to hospital in Naples,Fl this time just before Christmas. They tried

shooting Dylantin in me which for about 30 seconds relieved all pain, then they had to transport me to ICU

as my blood pressure was about 40/20 and dropping. They kicked my wife out of the hospital room and would

not let her in ICU. They obviouslby overdosed me. They kept me on trileptol even though it did nothing to

alleviate pain. I just wished to die. Again, nothing could pass my lips. On Xmas eve I walked out of the hospital in Naples.

On Dec 26 I went to Fla Hospital in Orlando and met with Dr Melvin Field. He immediately discarded the trileptol and other meds Naples NCH Hospital had me on and put me on tegretol and gabapentin. I asked about side affects of sudden withdrawal from other meds and he stated the side affects were nothing compared to getting my pain towards remissionl

Again I had lost a lot of weight from no food or drinks. On New Years Eve I was released from Fla Hospital in only minor pain and a 2nd Gamma Knife was scheduled for Jan 24,2014. After that Gamma Knife I was pain free until I visited

Fla again this current winter and the pain started again Jan 13, 2015. I am currently taking 900 mg daily of Gabapentin and 900 mg daily of tegretol and pain is moderate. 1 thing to mention is that after all surgeries I went off all meds within a month of post surgery. I am now thinking I should stay on some sort of moderate medication all the time and am currently considering a 3rd Gamma Knife by Dr Field in Orlando , then staying on a moderate dose of medication for possibly years.

Any comments on my situation or on Dr Field in Orlando would be appreciated.

[erin3]

how awful for you-I am so sorry! as bad as mine has been for 23 yrs you have had it worse. what helped me were homeopathic meds-spigelia 200c and hypericum perf 200c and staphysagria 200c-also mag phos and hylands migraine -very safe and they have helped me a lot . I get them from 1 800 homeopathy-reasonable cost and quick delivery.i had to experiment a bit and I started with 1 then added another til I found what worked for me.homeopathics help your body to heal itself. also I take oil of oregano every day to help avoid colds etc because that can trigger pain. boiron sinusalia is good to have on hand. there is a new pain cream available online called gallixa-type that in-scroll to bottom of page-click on reviews as there are people with tn that have been helped-I plan to try it in case of a bad attack.also there is a supplement-benfotiamine-a synthetic b1 created in the 50s in japan and it helps diabetics save their eyesight and renal function and it helps with peripheral neuralgia-it has app. helped with a reported case of tn-going to go no that as well-$6 from swansons vitamins. last, I saw a video for tn helped with hemp oil-swanson has that as well. I have been helped so much with natural meds and want to take it further. I have type 1 and 2 tn after a dentist tore cartilage and pulled my jaw way out of alignment, so add tmj and some lock and instability as well-I hope that you find some useful info here . natural medicine can take a bit longer but its working to heal not just mask symtoms. I had little bursts running up and down the side of my face one nite and was out of meds-it went on 21/2 hrs and I realized I did have hylands migraine so I put 3 under my tonque and it stopped instantly!it was such a surprise! the next day it started again with same result-none of those for ayr- and I seldom get tha burning head and face pain either. I wish you help in getting relief and hope!God bless you!