After suffering from TN for a year and a half and having pain on daily basis (tegretol failed to help), neurosurgeon suggested an MVD. Sept last year I had the operation in desperate hope that my life could get back on track to how I was prior to this ugly condition rearing it’s ugly head. it was quite clear an artery was pressing on nerve in MRI.
Early December I was admitted to hospital with a case of acute pancreatitis - thought to have been caused by large doses of tegretol. After coming off meds I was fine till mid Jan, when facial pain started up again. Went to dentist to write off dental work needing to be done - everything was fine…the realization hit - the TN had returned… Anxiety attacks became a daily thing, sleep deprivation, depression and of course the electric shocks in mouth. Referrals and long waits to see Neurosurgeon saw me return to rely to medication to get through. Amitriptyline, tramadol and morphine (for my worst moments), became my friends.
Returning to neurosurgeon in late August this year, I was offered two things; balloon compression surgery and different drugs to cover pain. An MRI was ordered to see the cause of the return of TN.
I am currently waiting for next appointment with hospital to see what scan shows. Am only 38years old and feel both options I have been offered suck. To potentially loose use of left side of face or end up destroying body with more meds at high doses. Really feel stuck between rock and hard place trying to work it all out. Am currently toying with idea of visiting alternative therapies.
Aww Mel, I completely understand what you’re saying…but you are not alone. I promise.
Being able to talk/share/ learn from others here at LwTN has helped me feel less alone …I hope you continue to post here so you’ll too feel less alone in your pain.
I’m 41 and my life has changed completely due to TN, it’s consistently inconsistent!
I’m in a similar place with my bilateral TN and almost 6 months post MVD.
Until a cure is found, there are no guarantees with any of the current treatments available, it’s really all about pain management and personal choices on how to achieve that individually.
You’re right, for many of us we’re truly stuck between a rock and a hard place.
Definitely look into alternative therapies, you never know…
Huge ((( hugs ))) I just wanted you to know, you’re not alone…and I understand. I hope you find some relief, Mimi
Thank you Mimi. It’s so hard somedays to put one foot in front of the other. I am determined not to let this condition control every aspect of my life…if only we had a magic wand or two!
Mimi said:
Aww Mel, I completely understand what you’re saying…but you are not alone. I promise. Being able to talk/share/ learn from others here at LwTN has helped me feel less alone …I hope you continue to post here so you’ll too feel less alone in your pain.
I’m 41 and my life has changed completely due to TN, it’s consistently inconsistent!
I’m in a similar place with my bilateral TN and almost 6 months post MVD.
Until a cure is found, there are no guarantees with any of the current treatments available, it’s really all about pain management and personal choices on how to achieve that individually.
You’re right, for many of us we’re truly stuck between a rock and a hard place.
Definitely look into alternative therapies, you never know…
Huge ((( hugs ))) I just wanted you to know, you’re not alone…and I understand. I hope you find some relief, Mimi
You're not alone.We all suffer or have suffered just like you.Some worse.Look at other options like the nerve stimulator.I cant have the MVD surgery due to a AVM.I had a Gamma knife procedure that after 8 to 9 weeks has left me pain free.YEA! But that procedure is known for letting the pain return.But i'm sure glad i did it.The nerve stimulator will be my next tool if needed.Yea,the meds suck big time.Big Pharma gets rich and we suffer.That said,the carbamzepine did offer me some small relief.Hang in there buddy.You CAN get help.
So sorry to hear of all you have endured, but as said, one thing for sure is you are not alone and we care! TN can be so isolating and the unknowns of it are so frustrating, I have not had surgery but can only imagine the frustration to have the pain return. Look into any treatment options there are, alternative or otherwise, maybe some more opinions since the options given are not what you are looking for. Hang in there and post and let us know how you are doing. Sending a gentle hug,
It’s so lovely to wake up early in the morning and find that so many people care. Thank you! Sadly here in New Zealand the options are limited as to what we do for trigeminal patients, we are a little archaic at times! I don’t regret having the MVD, with the meds not working, I had to try something to help relieve the symptoms. I do get upset with the results of the surgery though. I have been left with partial numbness on the inside of my mouth near my lips and although no one can see that I find it harder to speak/eat, it makes me feel like some kind of ugly freak. I also have an extremely sensitive side of face (different from pre-surgery), the nerves are continually crawling like there are insects on skin. I saw a Naturopath a few weeks ago who put me on cod liver oil and magnesium powder to try and help boost healing and relieve stiffness. It has worked somewhat, which made me realise I should try other things to help aid my body’s well being, rather than potentially poison it like I had with the carbamazepine.
Helen, I don’t regret having the surgery - at all. It was not easy deciding on what to do - but I felt that I had to take the chance offered to me at a potentially painfree life. With four children to care for, all I wanted was to be normal again. Don’t be put off the idea if you are considering an MVD as an option, many people have endured one and have come out pain free. I had 3 months of blissful peace after the operation, I am very grateful that I had that time. M xxx
Helen said:
Oh god Mel. I have no idea what to say. All I can do is send love. I haven’t had surgery yet but I am getting slightly frantic. Xxxxx
Helen, I don't regret having the surgery - at all. It was not easy deciding on what to do - but I felt that I had to take the chance offered to me at a potentially painfree life. With four children to care for, all I wanted was to be normal again. Don't be put off the idea if you are considering an MVD as an option, many people have endured one and have come out pain free. I had 3 months of blissful peace after the operation, I am very grateful that I had that time. M xxx
Helen said:
Oh god Mel. I have no idea what to say. All I can do is send love. I haven't had surgery yet but I am getting slightly frantic. Xxxxx