Is there Hope

I am so discouraged. I use to have a life until this t.n. got worse. I had radio surgery. Not the gamma one. I have more pain now then when I had the surgery. No medicine works. Anyone have surgery that helped them. I just feel like giving up. No hope.

Dear Catlover,

I am so sorry to hear that you are in so much pain, especially after enduring a surgery that you hoped would help you to feel better. I'm afraid that haven't had any surgery myself, so I don't have any advice that I can offer on that front, though I am sure that there are others who would be willing to share their experiences with you. If you haven't done so already, it might be helpful to do a search of the site for the type of surgery you had so that you can see everything that has been posted in the past. (There is a search box in the upper right hand corner.)

When you are trying to cope with a condition as painful and unpredictable as TN, it can be difficult to keep your spirits up, so I can understand why you are discouraged and feeling down. I think it is especially cruel that you are not able to sing right now because of your pain. I can't even begin to imagine how hard that must be. I'm not a singer myself, but if I raise my voice, it aggravates my pain. I wonder if it is the act of singing itself that triggers your pain or if you might be raising your voice and triggering it? Is there another way that you could participate in the choir until you can sing again? Would you be able to play an instrument, write lyrics or contribute in another way? That might help you to feel connected while you recover from the surgery. And, yes, there is hope. There is no question that you are faced with a very tough situation right now, and that it is taking its toll, but there is still hope and you will find your way through this to the other side, I know it. You just have to hang in there.

I will be sending good thoughts your way.

Take care,

Chris

p.s. By the way, I have three kitties hanging out with me right now, so I'm a catlover too!

Hi Catlover,

I'm in exactly the same situation! In February of this year I had Gamma Knife radio-surgery. We were hoping that after that I would be able to get off of the medication (which was a lot) an go back to my normal un-brainfogged self... It didn't work that way.

Two months after the procedure, the pain got worse. My doctor has changed medications many times since, and nothing is working. The pain is now deep in the cheek bone, the orbit of my eye, around my nose, the face muscles, and half of my tongue. On top of the sharp pain, it feels like deep needles that penetrate my face bones. The triggers are still the same including slight touch on my skin. I've been unable to talk over the last few days and on liquids and soft food because I can't chew... I can't even kiss my husband.

I've been out of work since April when my husband had to go to get me from work because I was having an extremely painful attack that was lasting 45 minutes already. Twice I've tried to go back to work, but after a couple of days I have to stay home again.

I'm applying for long term disability now, I just got the form filled up by my doctor. The word "disability" feels like a life sentence, even though I know I can can get better any time and stop the process. My work wants me back and they need more and more explanations from my doctors. My benefits have been exhausted and I dread the bills continuing to come. I've had hope each time we try a new medication or up the dose, but nothing is happening the nerve is not responding.

I know how you feel. I wish I can turn the calendar back and undo the Gamma Knife, but the damage is already done.

There are still other procedures we are looking at with the neurosurgeon, but I have to admit, I am scared...

Carolina

Don't give up though, even though the exhaustion would make us think there is nothing else to do, there is always a way... It's OK to be discouraged, depressed, and to cry, we have valid reason to do so... But after that (it may take days , weeks, or months), we need to accept the results, catch our breath and continue on... with faith. Something good will happen.

I know it's hard, I'm also in the "discouraged" and scared phase, I don't have energy... but I know it will get better.

For now, hugs to you...

Carolina

Sorry you are having such a difficult time. Unfortunately T.N kinda takes over your life but there is always hope. I didn’t use to believe that myself. I tried every possible medication with no luck. Gamma Knife was no help and the MVD surgery in my case actually I believe made it worse. My savings grace has been my pain pump. Before I got on the pain pump I was on 100 mcg of fentanyl which made me sleep 24 hours a day and turned my mind into mush. I was also having to take oxycodone for break through pain which really didnt help anyway. My pain doctor has changed my life. I still have pain, but for the most part it is much more bearable. I dont have the side affects with the fentanyl in my pump like I did using the patches. Whenever my pain increases we can just increase the pump. If you can find a good pain doctor it is always an option. If you have a pain pump installed I would definitely have a neurosurgeon do it rather than just a general surgeon.

Hi Catlover,

Talking about hope, I have better news... things do get better. My pain started to get better about 10 days ago. I noticed my face stating to get numb. The bad pain remains deep in the tissues and bones, but the surface of the face cheeks and lips are no trigger any more. I went to neurosurgeon and he said it was a good sign, very delayed effects, but it's a good sign. He said it will eventually subside. I have more better days. I'm eating normal again, I can sleep well. I had Botox in August.

The numbness feels wired, but it's not as bad as I feared it would. If I don't touch my face it feels the same. The thing is that the pain is getting better. I'm still super medicated, but I feel better.

My doctor, a wise man, said "the body heals itself, it is a matter of time,we are just helping the process. I know you will get better."

Best wishes to you,

Carolina

Dear Carolina

You just had me sobbing. My mother has had an almost equally terrible experience. We don't know what to do now but pray to God that the pain stops. I pray that you get well soon and that you are relieved of your pain.

love,

Asmara

Carolina said:

Hi Catlover,

I'm in exactly the same situation! In February of this year I had Gamma Knife radio-surgery. We were hoping that after that I would be able to get off of the medication (which was a lot) an go back to my normal un-brainfogged self... It didn't work that way.

Two months after the procedure, the pain got worse. My doctor has changed medications many times since, and nothing is working. The pain is now deep in the cheek bone, the orbit of my eye, around my nose, the face muscles, and half of my tongue. On top of the sharp pain, it feels like deep needles that penetrate my face bones. The triggers are still the same including slight touch on my skin. I've been unable to talk over the last few days and on liquids and soft food because I can't chew... I can't even kiss my husband.

I've been out of work since April when my husband had to go to get me from work because I was having an extremely painful attack that was lasting 45 minutes already. Twice I've tried to go back to work, but after a couple of days I have to stay home again.

I'm applying for long term disability now, I just got the form filled up by my doctor. The word "disability" feels like a life sentence, even though I know I can can get better any time and stop the process. My work wants me back and they need more and more explanations from my doctors. My benefits have been exhausted and I dread the bills continuing to come. I've had hope each time we try a new medication or up the dose, but nothing is happening the nerve is not responding.

I know how you feel. I wish I can turn the calendar back and undo the Gamma Knife, but the damage is already done.

There are still other procedures we are looking at with the neurosurgeon, but I have to admit, I am scared...

Carolina

Dear Catlover

I would recommend getting an MVD. My mother had an MVD. We were told it's the only surgery that actually attempts to heal rather than destroy the nerve. The good thing about the MVD is that the attacks became noticably less frequent and less painful and manageable by small doses of tegretol. The bad thing is that 2 years after the MVD the pain is starting to become more frequent and more severe, she's at 1000 mg of Tegretol and the pain wouldnt stop. We have no idea what to do anymore. She's in a contast state of dizziness and depression. It's heartbreaking. I wish there were more doctors on this forum.