I was originally on 1800 mg Neurontin (gabapentin) and 900 mg Trileptil (oxcarbazepin) daily. I am weaning off by one pill a week and have only two more weeks to go. I don't feel completely normal but am just about there. My balance is still a little off when I am walking or going downstairs and I have not been doing yardwork at all because of the unevenness of the yard. Our yard used to be a pasture! I had the most trouble when I had to lower my head. For example I could put laundry into the washer which is a top loader but not take it from the dryer which I had to bend down for. That is much better now but I am still not dusting baseboards! It was never my top priority anyway! What I have missed most is babysitting my grand- daughter who is a lively 2 year old. I hope to get to that next month! Dixie said:
I'm trying to cut down on my caffeine intake and am not doing well. I just slept for an hour because I had no caffeine as usual @ noontime. Well, I just downed a Moutain Dew and feel better. BTW, Wendy, that is "carotid" artery. How about that, I just used, "BTW"? Ha, ha.
Yes, Wendy, I agree, we are going just where we were meant to be.
How are you doing, Julie? Are you completely "normal"? What meds are you weaning off & are you off everything?
crashgirl said:
I am the friend that is having surgery in New York , it will be at Winthrop University Hospital, with Dr. Jeffery Brown, he is listed under the doctor tab on this site. It was great talking to Dixie yesterday...we are all in this together!!
I think I have found the doctor who will fix me, its funny, Dixie and I said the same yesterday, we both think (correct me if I am wrong) that we ended up where we belonged and with the doctor that is best for us. I had originally gone to Dr. Lim at Johns Hopkins, he had done a glycerine rhizotomy on me, but he did not want to do an MVD because I have mostly atypical symptoms. Dr. Lim referred me to Dr. Brown, who is also the head of the tn association. Dr. Brown also found a compression on my cartoid(sic?) artery and will be repairing that as well, hopefully ending the migraine headaches I have had since i was a kid as well.
You give me hope!!
Thanks, Wendy
Julie said:
I was just curious. There are wonderful hospitals in Manhattan. It is so important to trust your surgeon, don't you think? I had my surgery at Northern Westchester Hospital in Mount Kisco, NY. All the rooms there are private and my husband could stay with me. I always feel so vulnerable when in hospital so having him there was good for me.
Dixie said:
I know she said the hospital is in the Manhattan area and the surgeon's name is Brown. Does that information tell you anything? When I talk with her today, I will ask her the hospital.
Julie said:
What hospital is your friend in NY using?
Dixie said:
I am SOOOO happy to hear from you--and what great timing! I am scheduled to have an MVD on Oct.18 @ Johns Hopkins. I would really like to chat with you about your experience. How "helpless" were you the first week postop? I have another friend on this site who is going to have an MVD Oct.3, in New York. We plan to phone each other today. I really hope to hear from you and I am so happy for you!
how did you and your dr finally come to the agreement of surgery? I am just about ready to demand something be done surgically because I am worn to a tiny little nub of patience. This has caused me to quit my job and basically be a hermit. I am always waiting for the next attack. The rest of my day is dealing with the residual pain and numbness in my ears, throat, face, neck etc.
Laura, Perhaps Wendy (Crashgirl) could better answer your question. I am dealing with only (ha-"only") type 1 TN and probably don't have as many issues to deal with. In my case, I did a lot of research on this website and had a MRI and clinical presentation of symptoms that respond well to MVD. Knowing that I do not want to be on medication long term to only alleviate the symptoms (pain) and knowing that I want to do whatever possible to be painfree and off meds, I consulted with the best surgeon for my situation. I feel that MVD done in my case by a superb surgeon and his team is my only choice.
If I can answer any questions, feel free to message me. What do you think, Wendy?
For me it was simple. I had maxed out on the amount of medications I was taking. My sodium level was low and I REALLY hated the way I felt on the meds. It seems to me that if your doctor is truly your partner in healthcare (which I feel strong about) then he or she should explain all the options and let you decide. There are options for surgery too. MVD is only one. Gamma Knife is another good option.
Yes, there are other options and each need to be discussed with your surgeon and decide, together, which is right for you.
Julie said:
For me it was simple. I had maxed out on the amount of medications I was taking. My sodium level was low and I REALLY hated the way I felt on the meds. It seems to me that if your doctor is truly your partner in healthcare (which I feel strong about) then he or she should explain all the options and let you decide. There are options for surgery too. MVD is only one. Gamma Knife is another good option.
laura, I am the same way, I rarely go out, and am on long term disability. I guess to answer your question, i researched the best hospitals out there. My local neurologist didnt even know what this was and put me on a waiting list for 5 months to see him, so i cracked out the ole laptop and started researching. I went to Hopkins first and had a glycerol rhizotomy done, which got rid of a lot of the pain, but Hopkins wont do surgery for a-typical pain, so they referrred me to Dr. Brown in Ny, he will be doing my surgery.
I am a weird case, that there is no medication out there that does well in my system, I have the strangest reactions, the tegretol made my legs so painful I couldnt walk, gabapentin made me so dizzy after one dose that i fell over. etc etc. Dr. Brown did find a compression, so he feels surgery will be successful. It all comes down to, I drive as an insurance adjuster over 100 miles per day, so on the meds it is impossible for me to do my job, plus a compression was found , so surgery is really my only option if I ever want to work again. If it doesnt work I am basically screwed, but I am very confident in the doctor.
If your quality of life sucks , and believe me I know, then you must insist answers on your doctors appointments and if you dont get them, then move on. Do your research, keep a clear mind, but be forceful as to your own body!!
Message me if you have any questions! And Dixie, i drank 5 pots of coffee yesterday, if I drink anymore my head will explode, but it helps this damn tooth pain. I got sick again today, and found out my sinuses are messed up, yay!
Wendy
Laura Terry said:
how did you and your dr finally come to the agreement of surgery? I am just about ready to demand something be done surgically because I am worn to a tiny little nub of patience. This has caused me to quit my job and basically be a hermit. I am always waiting for the next attack. The rest of my day is dealing with the residual pain and numbness in my ears, throat, face, neck etc.