I am done...finished...too depressed and overwhelmed to say much. Found out this morning after seeing my NS that I have to have another MVD. I just had one 8-2-2012. It worked for 3 weeks. Then it slowly at first crept back in, the pain that is. At first it was a few minor shocks and I was told to increase the Neurontin. I am now on 3600mg a day of it and still getting shocks, (some minor, some not so minor) burning and just flat out pain!!!
I have a major heart problem and one of my heart drugs interacts with Tegretal so I can't take that. NS told me this morning that if this 2nd MVD doesn't work that I will have to choose between my heart drug or Tegretal for my face pain. The heart drug controls my Unstable Angina. SO, if this 2nd surgery fails...what is it? Heart or face?
I have cried until I can't anymore. Screamed, which only hurt my face. Tried to "walk off my feelings" and nothing is working. I have only slept 4 hours in the past day and a half. I just don't know what to do!
I used to be an intelligent, caring, loving, happy person. Now I am a dumbed down (due to meds), unhappy, don't give a shit, person.
Is it all worth it? At what cost? My sanity seems to be slipping away. I am in a clouded place that is dark...so very dark.
Hi I am sorry you are facing another MVD To have a MVD fail is enough to make anyone depressed .
I hope very much the new MVD brings you much relief .
There are other drugs beside tegretol for TN I know you are taking Gabapentin but maybe you or your surgeon could find another drug that dosn't interact with your angina.
I do hope things improve for you .....sending love ,Lyn x
Betsy…Your post made me think of my own failed MVD 2 years ago. I haven’t had another one. Like you I just couldn’t face going through it all again. You are one brave lady!! I pray this one is successful!! Also as Lynda said there are many many other med choices…tegretal is NOT the only effective drug!! Try to keep your head up, things will get better!! Everything in our lives is for a season, then it passes!! I am praying for you this morning!! ((HUGS))
Betsy, big hugs and my empathy. You have health challenges that need serious consideration. Please write to RED LAWHERN for his help, you need great advice. I am thinking of you and hoping the tears and cloud pass over soon.
Positive energy coming your way!!! Tomorrow will bring brighter days. I see that beautiful little girl with you that I am sure loves you very much and needs you in her life.
I, too, feel dumbed down by the meds. I take 2400 Neurontin and my Neurologist just added 400 tegertrol. I am blessed that these meds have eased my pain so much that it is livable. I told my family "no Forest Gump" jokes!!
As the others said, " don't give up on meds."If you haven't tried other meds, help yourself, and your NS, by researching drugs that help TN that don't interfere with Heart meds. I would try that before another major surgery like that. Bless your heart. Please know that we are all praying you find the answer.
((( Betsy))),
I’m so sorry you are having to think about all of this…now I’m not a medical doctor BUT there must be some kind of med or combo of meds that you can try for your TN that won’t interfere with your heart meds! You do not have to choose between heart and face, there’s gotta be another way! Time for second or third opinions!
Maybe talking to a pharmacist ??
I’m thinking of you and sending positive thoughts be gentle with yourself, you are undoubtably a strong woman ! Cry and scream as much as you need, i completely understand, try not to feel that all hope is lost, believe that there is another answer!
I believe it for you! (((( hugs ))))
Mimi
Well, I'll tell y'all this...all of the prayers and good energy sent my way worked!! :) I CAN do this and WILL do this. Pity party is over. Thank y'all so much for getting me through that dark time.
I am so sorry for you.The MVD may work this time xxxx I was cut down to a low dose of tegretol and took it with lyrica.When I took lyrica on its own, my pain almost went.Lidocaine patches have just started being prescribed in the UK and they might help.I had an MVD which failed, leaving me off balance and deaf in one ear.I set off 1 year ago to walk over the cliffs beside our house.I too was in a deep dark place, I blame the meds. The stupid thing was my chihuahua was pregnant and I could not go through with anything and leave the dog, never mind my husband and children.Thats how sad the pain causes our poor brains too function.One month ago I suddenly without any reason went into complete remission! If the pain comes back they are having success with laser treatment in Leeds, UK.Be positive, the MVD could well work, they will try harder this time!! Get out of the dark, we are all thinking of you, please keep us all posted, everytime you feel low, we are here and we know what you are going through!
wow betsy, im sorry to hear you are going through this. i have been in your shoes many times. i had mvd in may 2011 on left side and am scheduled for right side in nov 2012. in the mean time the left side has returned after just over a year. i am thankful for that time but dont know what to do now. i have a consult on oct 10 to discuss it with surgeon. i have crawled out of a dark hole many times in the past 6 years before being diagnosed when i was not taken seriously about the pain. i kept being told for years it was sinus infections then it was cause i was depressed. at one of my lowest points they had me believing i was bi-polar. it is such a painful thing to experience and sometimes you want to give up because you cant imagine living the rest of your life like this. hang in there. i am new to this forum and just finding others who can relate to me is encouraging in its self. something will change eventually, just keep talking to people and dont become isolated. people want to help. take care. jacqueline
Hi, Betsy, I am so sorry for you to, I had MVD 2 years ago and I still have to take tegretol for stings and now it has started on the other side of my face as well. Has your surgeon mentioned other procedures to you such as the rhyztomy procedure. My brother had a failed MVD and they went back the second time using this procedure (which is less evasive) and it worked for him. He later on developed TN on the other side of his face and he was going to try the rhyztomy procedure again instead of surgery because he felt it was so much better than MVD. The numbness was more so in his lip area then with the surgery but he said he had rather have it than the procedure not work at all. You might ask your surgeon about this procedure before surgery again.
Just saw this thread. I'm so glad you felt at least a little better emotionally after reading responses. I wish I could tell you there's a magic combo of meds with out Teg (I think I'd be on it). At least there's a chance your MVD hasn't exactly failed as of yet. I've read often it takes up to a year to be sure as KC mentioned above. Please, if you feel it was for nothing and feel down, remember that.
I have started telling friends it's the best weight loss program you never want to be on, as it's very effective! But when my meds are "in sync" and I can eat, I pig out, and man I crave sweets worse than ever. My neuro (not surgeon) has only mentioned killing the nerve as they can't see any compression (claim the vein\artery and the nerve aren't close together).
Remember, you just has surgery recently, I'm sure there are some things in there that are going to seem haywire while you heal, along with swelling etc. I had major jaw surgery 20ish years ago and omg, that took 3 months to settle down to a tolerable level. I often wonder if it was one of the factors leading up to this TN issue for me.
Hi Betsy, I've read your post and can only voice what the others have said. please, please don't give up, I was unable to take tegretol and am now on Lyrica, which I still can't tolerate but it works far better for me than Tegretol. I just hope that things soon improve for you......don't let go of that rope and please don't make any rash decisions and take the others advice on talking to Red. Big hugs sent your way : )
Betsy, I’m new to this site but I just want you to know that I am sending you lots of love and light. You WILL Make it through and we are all here for you to call on during those dark moments.
