Scared

Hiya Guys

I come here mostly because im scared and confused.
Its great to see there is a comunity here that is talking and working for each other.
i see a lot of very brave people here that are willing to share their experiences with other people.

For me:
I just want to know my options, im supposing the operation to the head is what i need to happen.
Guess im getting way ahead of myself in assuming its readily available and will be sorted by default.

I see the op has its risks.
To be honest, i have a wife and 4 children with 6 grand children, i should be in the element of my life i should be feeling etopia.

I feel crap and a burden to all.

The quality of life i now have!!!
Should i have a 50% suvival option i would gladly proceed.
Its not just me that feels the pain. My wife is feeling it too,
Guess im just another to the ever increasing list of people moaning and complaining,
Not feeling sorry for myself here, just looking to see whats round the corner.

HELP !!!


Hi Paul,
I am sorry you are having pain. And it is normal to be scared. And I know there is a lot of confusion as to what course of action one should take. I too am confused on what to do next. I had MVD in April last year but my pain is returning. I think I will try MVD again but then I am considering other treatment. It is a very difficult decision. I wished we were all pain free. The pain does affect those closest to us. Just hang in there. Please feel free to ask questions. We are here for your support.
Liz

Hello from San Diego,
I feel your pain from way over way here in California…you are not alone…I have had TN for four years…I have had five different procedures and I am still fighting this curse…I am under the skull drill July 23 for MVD…I am scared of what the outcome may not be…scared and pain is what we with TN deal with day to day…I wish you the best in your battle and am here to support you as best I can.

Paul,
Hang in there. You are doing the right thing by sharing. bob

Hi Paul,
Sharing your cares and concerns is important for you. Also, so many people here have information to share that will help you with your fears. I know what you mean about it just not being about you, but also those other people who love you and watch you suffer not being able to do the things you want to do with them. That’s a tough one. Just remember you are doing the best you can day by day. Good luck. I will be thinking about you.
Jamie

Hi Paul,

We know how you feel. This disease is hard not just on you, but also on your family. I wish someone could give us an answer. This community seems to have a lot of great people who offer their support. It certainly helps to speak with other people about this.

jamie leigh said:

Hi Paul,
Sharing your cares and concerns is important for you. Also, so many people here have information to share that will help you with your fears. I know what you mean about it just not being about you, but also those other people who love you and watch you suffer not being able to do the things you want to do with them. That’s a tough one. Just remember you are doing the best you can day by day. Good luck. I will be thinking about you.
Jamie

I apologize this article written by my husband is political, please look past that part of it but it tells my story and I would be happy to get you in touch with the doctors who helped me.

Hi Paul-
I think that if we were not scared of what our life is not that we would be crazy. I have days where I have no fear and no depression, but then other days I am a mess. It is so annoying because it affects ALL other aspects of our life. Just like you said, your wife feels it too. I am 20, so no husband yet, but I tend to take out my anger on my boyfriend, the people who are there for me most. I feel bad, but at times I can’t help it. All we want is to be able to enjoy our lives! I have had 4 MVDs, DREZ procedure and 2 other surguries for TN. And I still have pain…I am TERRIFIED about what the rest of my life is going to be like…
Are you comfortable with your dr? that is SO important. My last surgery, May 27th I was so scared pre-op, but then I saw my surgeon, Dr. Casey and I just felt comfort and started crying hysterically.
Just know you are not alone and what your feeling is normal.

You are not the only one feeling this. None of us see your worries as feeling sorry for yourself. We have good reason to feel so low. You will find your answer. My outlook is pretty similar sometimes. I have a husband and a small child; I always feel like a burden. It is hard for me to see him so upset because there is nothing that he can do for me. In everything that you experience in life there are positive things that come out of them. You might find that you have strength you never knew was there!! There are plenty of options, I have been able to talk to people about procedures that they have undergone, I have learned alot more than just googling them. If you would ever like to chat, please, message me.

Hi Paul, the fear and anxiety that this dreadful disease brings to us is at times as difficult as the pain. I strive to remain in control as much as possible. The community here helps alot. Even if i do not comment or repond just reading and knowing that I am not alone is a comfort. So many people have never heard of TN and they simply cannot understand no matter how hard they try, even our family. But the people here know exactly how you feel. There is so much great advice. Seek it and rely on it. I pray for your healing as well as healing for us all. Hang in there and let someone know when you need to talk!