I went to my neurosurgeon for a follow up of my MVD in August. I have been having attacks on the other side lately though. We looked at my MRI and you can see an obvious vein wrapping around my left nerve now. So, basically, I will need an MVD. I go back in 3 months. He wants to see the longterm effects of my mvd before we even think about another. I feel like my life has become hopeless. All i do is "wait and see," and then go back to the doctor for more bad news. I am failing in school because the tegretol makes me stupid and the brain surgery makes me weak and exhausted. The thought of waiting another 3 months makes me have panic attacks. I hate this disease. It has robbed me of my teenage years and now it may rob me of college too next year. This sucks...
Oh so sorry! I know just how you feel, as I had to have MVD on both sides within a year. I know it seems like you are losing so much time, but try to keep your chin up. You WILL beat this. A year seems like such a long time, but I hope you can hold on and start college healthy when you have healed from surgery.
Best
Christine
I am really sorry!Yu are right it does suck...you should be angry! Our lives have been changed forever with this. I guess when I first got TN I was really upset and depressed and in a lot of pain. The medication unfortunately has those side effects at work I think i'm going crazy sometimes so forgetful and my eyesight is so blurry its hard to drive. I made a decision a while ago though that I know its not going to kill me like cancer or something terminal. That I was always going to try find one thing everyday to be positive about. A sunset, my comfy socks, my dogs. etc. holding the door for someone. The one thing that would take my mind off of what I was going through. What do you want to study in college next year? My daughter is a senior this year too. where would you like to go?
Hi Brbgrl
I’m so sorry you are going through this whole MVD business on your right side now. That’s a ton of pain and disappointment to deal with and a heavy burden for your young life.
You probably feel a whole range of emotions and we all need to acknowledge our emotions. Emotions are dynamic. They move and change from moment to moment, day to day.
But I do not agree with Kristin that you SHOULD be angry. Who should you be angry with? Your anatomy? That would be directing anger at yourself and I don’t think that will help your pain. You can only get stuck there and that won’t help. If you feel anger come up with your situation then that is real. Acknowledge it and let it pass. But please don’t get caught up in “should”. It won’t help you.
It’s tough to feel like your life is hopeless. I’ve been in that place too. It’s not something that belongs to one age or another. Hopeless is hopeless. But perhaps after some time you will see that you’re really strong. You’ve come through one big surgery already. It’s no fun to face another one, I’m so sorry that is what you’re up against, but now you know you can get through it. You know what to expect. You can prepare.
Mourn the loss of what you expected this time of your life to be. Mourn well and move on. Find ways to adjust to your Tegretol head. Make plans for your future. Believe in them. The next year will go by whether you are engaged with finding a way to live with TN or not.
Stay strong, find a way to have some fun - pain or no pain - and whatever you do, Keep Heart.
Xo Bellalarke
I know you are supposed to be going to college now - probably with your peers? But It IS one thing that can wait.
I had no focus and no way to remember anything - and kept raising my trileptal before my MVD
So I found here --- have neuro get you short term prescription of Ritalin - to counteract fatigue and help focus!!!!!
Get some lidocaine patches - so you can lower the meds some too --- works for many.
Waiting is the game -- but there are things to do in the interim..... even if you take a class for no credit, on line, for fun, you could do that to feel like you were still moving forward in life.
Keep Posting!
My heart just goes out to you, sweetie! I know exactly how you feel in having pain on both sides. The pain on my right was dominant and did not show a vein or artery in the MRI. Yet the left side showed a good vein snarl. After the MVD, I had to face the fact that the prior radiation from gamma knife 2x had damaged this nerve and the pain that was there would slowly, hopefully dissipate. Well, 12 years later, I'm in the TN boat with pain from the radiation on the right, and on the left soft pains are beginning to surface again to the point of my noticing them. Would I have another MVD? Maybe if the pain began to scream. Happily, the MVD surgery went well, accomplished the task of removing the artery from the nerve, thus bringing down the pain.
These days, every 6-8 weeks I get botox shots for migraine pain and it takes the TN pain way down. This could be something for you to explore?
Also, Dr. Burchiel at OHSU is doing a study to look into the DNA of those of us with Type 1 TN. He said that I would not be the first line candidate for the study, due to the residual pain from the gamma rays, but when the study goes nationwide, I may be a good fit. His words to me stung so deeply when I saw him last month. He said that he could do nothing for me but damage the nerve more and since we had tried that and failed, he would only do it if I wanted to jump off a bridge!! Forget that noise! So, it's tie to make the best of it…Lidocaine patches, or compounded cream everyday!
Yes, this is one of the toughest cards to be dealt…but know this, if it comes your way, YOU have what it takes to stand up and make it meaningful. We can learn from this, as well as other things that come our way. Sometimes we find ourselves in hard times when we are young because we are being prepared for things to come later. Or, as one of my best friends spoke to my heart, we go through things for the sake of… OTHERS, as well as ourselves. There are those who are watching us who derive strength and meaning for their lives BECAUSE they see us do this in ours. Maybe, this time out in your life to care for yourself and build yourself up is something that is really needed for your upcoming college years, or maybe your career choice? Just remember that being good to yourself and managing your pain well is top priority. Just like KC Dancer said, school will ALWAYS be there, right now it's important that you're becoming well after your surgery. I will say that it is nice to have 7 years, post MVD, there are no harsh, knife stabbing pains in my right ear anymore. It was hard to care for a young family and heal from an MVD simultaneously, but somehow with love, hugs and encouragement from family and friends, I healed from the surgery very well. I'm betting you will do the same.
Take Care,
LyndaS
I'm sorry if my comment might have been interpreted like that. I guess what I should have completed saying is the same as you that it should be acknowledged and that hopefully moved on from..I meant anger at the disease also part of the mourning and grieving process. I am not very eloquent and hopefully my comments aren't detrimental to you Brbgrl. Thoughts and positive prayers for you always.
Bellalarke said:
Hi Brbgrl
I'm so sorry you are going through this whole MVD business on your right side now. That's a ton of pain and disappointment to deal with and a heavy burden for your young life.
You probably feel a whole range of emotions and we all need to acknowledge our emotions. Emotions are dynamic. They move and change from moment to moment, day to day.
But I do not agree with Kristin that you SHOULD be angry. Who should you be angry with? Your anatomy? That would be directing anger at yourself and I don't think that will help your pain. You can only get stuck there and that won't help. If you feel anger come up with your situation then that is real. Acknowledge it and let it pass. But please don't get caught up in "should". It won't help you.
It's tough to feel like your life is hopeless. I've been in that place too. It's not something that belongs to one age or another. Hopeless is hopeless. But perhaps after some time you will see that you're really strong. You've come through one big surgery already. It's no fun to face another one, I'm so sorry that is what you're up against, but now you know you can get through it. You know what to expect. You can prepare.
Mourn the loss of what you expected this time of your life to be. Mourn well and move on. Find ways to adjust to your Tegretol head. Make plans for your future. Believe in them. The next year will go by whether you are engaged with finding a way to live with TN or not.
Stay strong, find a way to have some fun - pain or no pain - and whatever you do, Keep Heart.
Xo Bellalarke
I understood what you meant. I know it isnt healthy to be angry, but for me, its inevitable. And it is better to direct my anger at the disease, rather than my doctor, family and friends.
Kristin said:
I'm sorry if my comment might have been interpreted like that. I guess what I should have completed saying is the same as you that it should be acknowledged and that hopefully moved on from..I meant anger at the disease also part of the mourning and grieving process. I am not very eloquent and hopefully my comments aren't detrimental to you Brbgrl. Thoughts and positive prayers for you always.
Bellalarke said:
Hi Brbgrl
I'm so sorry you are going through this whole MVD business on your right side now. That's a ton of pain and disappointment to deal with and a heavy burden for your young life.
You probably feel a whole range of emotions and we all need to acknowledge our emotions. Emotions are dynamic. They move and change from moment to moment, day to day.
But I do not agree with Kristin that you SHOULD be angry. Who should you be angry with? Your anatomy? That would be directing anger at yourself and I don't think that will help your pain. You can only get stuck there and that won't help. If you feel anger come up with your situation then that is real. Acknowledge it and let it pass. But please don't get caught up in "should". It won't help you.
It's tough to feel like your life is hopeless. I've been in that place too. It's not something that belongs to one age or another. Hopeless is hopeless. But perhaps after some time you will see that you're really strong. You've come through one big surgery already. It's no fun to face another one, I'm so sorry that is what you're up against, but now you know you can get through it. You know what to expect. You can prepare.
Mourn the loss of what you expected this time of your life to be. Mourn well and move on. Find ways to adjust to your Tegretol head. Make plans for your future. Believe in them. The next year will go by whether you are engaged with finding a way to live with TN or not.
Stay strong, find a way to have some fun - pain or no pain - and whatever you do, Keep Heart.
Xo Bellalarke
Thank you all for the encouraging words. They really help. I have always been a straight a student, and very conscientious of my grades. It has been VERY hard for me to convince myself that my health MUST come first! It has been very hard to miss many days of school and get bad grades. Last year I got my first b and cried for hours... This disease has taken so much from me. It has been especially hard in the last couple months because i thought this would be over with after the surgery. I thought i would be okay.
Brbgrl
My heart goes out to you! Its frustrating being in limbo and receiving had news. Hang in there! One day at a time! Find something relaxing to do to get your mind off it, massage/yoga/pedi/mani.
Xoxo Erica
So sorry for this news and understand how you are feeling, not sure if it helps, but keep in mind how blessed you are to have these options. We were once a very financially set hubby and wife with a beuatiful life with our fur kids, then suddenly hubby lost a leg and is in kidney failure, lost job, no insurance for me, I have no options. I share this to let you focus on your blessings because TN can sure make them almost unbearable to see, but they are there. You are young and strong and you can get through this and live once again!! TN will always be part of our life but it does not have to consume our life unless we let it and yes, on days I do, but I get back up, I have too. So sweet friend, hang in there, your life is just beginning and TN cannot take that from you, don't let it!!! Those straight A's will come back, I have followed all this with you and know you are much stronger than you think you are, we all believe in you, now you believe in you! No sugar coating, it does suck, I have days I cannot even imagine what I am going through, what I have been through or yet to face, but it is my life and it sure beats the alternative, living is good :) My Saint Bernards are sending you sweet, gentle, drooly kisses and I am sending a gentle hug, know you are cared about a lot here, embrace that.
Much love and prayers,
Betsy
Brbgr,
I can truly understand your frustration with the bad news. I had my MVD 14 almost 15 months ago and am struggling with multiple issues from the surgery that have yet to be resolved. It seems that every time I go to a doctor to get something fixed, something else breaks or pops up. The headache I had when I woke up in the ICU has never gone away, my ear is still plugged up, the mastoid bone is still swollen and extremely swollen - yet I am alive and the TN is no where close to being as bad as it was prior to the surgery. I just completed 6 weeks of IV antibiotics for a bacterial infection I have most likely had since surgery- presumably in the mastoid bone with possible meningitis - this caused "black hairy tongue" and has caused my teeth to become very dark in color, and they will not be able to be bleached to correct the color. But, I am alive and am now working with a team of doctors that have promised to solve the mystery of the headache and the pain behind my ear.
I guess the long and short of it all is that I am a firm believer in that God NEVER deal you a hand that you are unable to play. I will get through this and you my dear will get through your dilemma. Yes, your health has to come first -- I too was a straight A student when I completed my MBA in my mid 40's and understand how important that can be. However, you have to have your good health.
Hang in there - this may sound a little old fashion but stop and smell the roses......watch a butterfly and think of the beautiful gifts you will be able to enjoy once you have your health back.
HUGS.............................Mary
Brbgrl1017, it's so hard when people tell us that we should be focusing on our health and not to be worried about school and college and such because it can wait. Of course it can wait, but it still sucks! I know, it does. Vent away! I couldn't afford college when I first graduated from High School so I had to work for a few years before I could go. It was really difficult to watch all my friends go to school when all I wanted was to be there studying. I know how upsetting the prospect of putting off college is. But I will tell you this, once I got there I worked harder and more diligently than I ever would have if I hadn't fought for it.
Right now I too am being told to focus on my health and not school, as I am trying to fit in being a graduate student and having a bad flare up. But as Kristin says, we need to find the positives in life. We can make it through this. There will be disappointments, and frustrations, and difficult periods, but we can't forget that there will be good times too. You are going to make it to college and have a wonderful experience, be it next year or the year after! Don't worry, it WILL be ok. You will be okay!!
I wish you all the best, and keep us posted on your ups and downs.