I am headed to see a neurosurgeon tomorrow.(Dr. Casey) I have had tn for 3 1/2 years and it has progressed rapidly the last year.I am very nervous. I have done research and read stories about mvd. Surgery is not what anyone wants but I feel that living on meds will only last so long since this disorder is progressive Any advice I should consider or any questions I should ask please share with me. I am currently reading Striking Back I know every mvd is different and he may not think I am a candidate but something has to be done I want my life back my kids want their mom back and I have a job I dont want to give up...Luckily I am a teacher and I am done for the summer I barely made it throw the last two months of school as I have not had much relief from the pain
Please share anything I may want to ask the Dr or consider
Thank you
Andria
If u r a candidate go ahead with it!!! I had mine 15 mounths ago the recovery is different for everybody…its hard but is worth it …Im about 80% pain free have pinches & discomfort but nothing like before…I highly recomend it !!
All surgery is not without risk but six weeks of recovery to be 100% pain free was worth it for me. I woke up from the surgery with the TN pain gone, spent several weeks weaning off the anti-convulsants and am enjoying every day of my new life. I wish you good fortune and a pain free future.
Best wishes to you on your visit with Dr. Casey tomorrow. It seems there are many of us on here visiting Dr. Casey this summer . . I'll be there on July 29th. I've only had TN since January and I've already had enough with the drugs and inconsistent pain relief. I feel trapped with this until the problem is solved and I feel that the MVD will do this. Dr. Casey is very skilled in this surgery and working with TN patients. I think reading his book is a must before a consult. I read it the first month I was diagnosed and will read it again before my consult. Please update us on your visit tomorrow.
Thank you I have the book I have been working on reading it ..lol I wish I would have bought it sooner I bought is about 2 months ago haha with 2 small kids working full time and trying to deal with the pain I have not finished but i have been on this site for awhile and I have learned so much I will keep you posted. Very nervous!!!
mybell said:
Best wishes to you on your visit with Dr. Casey tomorrow. It seems there are many of us on here visiting Dr. Casey this summer . . I'll be there on July 29th. I've only had TN since January and I've already had enough with the drugs and inconsistent pain relief. I feel trapped with this until the problem is solved and I feel that the MVD will do this. Dr. Casey is very skilled in this surgery and working with TN patients. I think reading his book is a must before a consult. I read it the first month I was diagnosed and will read it again before my consult. Please update us on your visit tomorrow.
I read the book, "Striking Back" soon after my diagnosis with type 1 TN over 2 years ago. I did as much research as I could and educated myself on management & options. As you know, making the best choice for the surgeon and institution is very important. I am glad you are seeing Dr.Casey. I am 68 yrs, (young!) and traveled a long way to Johns Hopkins in Baltimore to have Dr.Ben Carson perform my MVD about 8 months ago. I am pain free and have my life back. For me, that was the ONLY choice. Let us know what the plan is for you. You are in my thoughts along with so many others'.
Its 8 months for me as well, I had my MVD the week before Dixie!! I am also pain free for the most part, I have an occasional jolt, but it is minor compared to before and I had both TN and ATN. I had a bunch of complications because I am allergic to almost every med on the market, but I would do it again in a heartbeat if I had to.
Ask what percentage of pain he would hope to relieve if you are a candidate for surgery, they should give you a number, my surgeon said 90% but I am closer to 100,
Its a personal decision for all of us, I couldnt tolerate any of the meds and really had no choice, so I was actually counting the days til surgery because I was looking forward to it.
I will keep you in my thoughts as well, and let us all know how you make out
Wendy "crashgirl"
Hello, it also took me 3yrs to decide on surgery. My neuro suggested MVD a yr after i’d been diagnosed with TN. Being only 27yrs old i wasnt going to give up without a fight. I was on the highest dosage of meds and was beginning to forget things. My dizzy spells were getting out of hand and nothing was working for me. I tried Acupuncture, Naturotherapy and Homepathy. Nothing worked so i gave into MVD. I was fine when i came around after 5hr surgery. My thoughts straight way was ‘why didnt i just listen to my neurosurgeon when he suggested it 3yrs ago’. It was the best decision i had made. I was painfree and drugfree for almost two years. For a tn sufferer that is better than being in pain every single day. Whatever you decide we are behind you 110%. xoxo