Comment

Comment by Peggy Card on December 13, 2010 at 4:01pm

First, to Brenda.  A lot of Acoustic Neuroma survivors have problems with the eye. I once read about a spring that can be installed in the eye lid that lets the eye open and close.  I am not up on it anymore but if you go to www.anausa.org, I am sure you will find a reference to this type of surgery. You never really get used to the changes in your head and face but you learn to love face again.  I have a significant dent in my head by my left temple.  During surgery number 2 a plastic surgeon took fat from my butt (yes, my sister calls me butt head) and tried to smooth out the dent.  Well, after Gamma Knife radiation the fat cells dissolved and the dent returned.  So, to go with my dent I have a large scar on my butt.  I really recommend plastic surgery until all is done and you are well.

And Lisa, Debbie is right.  The first year after all treatment is complete is a time for healing.  If you are still undergoing treatment, your healing really hasn't begun.  I tried to go back to work three times and felt like such a failure but my body and mind weren't healed, I was asking to much.  After two years I was able to work part time.  After three years, I returned to full time.  Keep in mind that did not mean I could handle work and home but I really need the health insurance. Even now, when a migraine hits, nothing gets done.  That's my life.  But its a good life.  You are here for a reason.  Someday you might know that reason, but maybe not.  Maybe its because someday five years from now you meet someone who is just starting this journey and you will say, I know how you feel and you will survive.

Comment by Lisa Turner on December 13, 2010 at 5:40am

Thank you Debbie..... 

Comment by Debbie Higgins on December 12, 2010 at 7:10pm

Lisa, I had a time that I went through that too. I felt like I was just a lump on a log and I would never find myself again. It was about 6-8 months after surgery that it was the worst. And I am a very positive person.

I finally cried and yelled and stomped my feet; got it all out and talked to my husband about how I was feeling. He was very supportive. That made me feel better, but still not good. Then I realized it was my medication. I don't know if you are on anything for seizures but one of the side effects is depression and suicidal tendencies. You might need a change in your medicine. That helped me greatly.

I am 1 year out of surgery, and I am just now starting to feel better. I never thought it would take this long. Feel your mind with good thoughts, not bad ones. And know that God loves you like you are and HE has a reason for you to still be here. He never wastes a hurt. You are probably an inspiration to more people than you know. 

Comment by Brenda Cuellar on December 12, 2010 at 3:35pm

Why? To show the world, including yourself, that you are strong.  

Comment by Lisa Turner on December 12, 2010 at 3:23pm

I hope you guys don't think I am crazy.... but I very often feel like WHY am I here?  I don't always want to be either.  Sometimes I am convinced my husband would be so much better off without this sleeping bag which is me.  Everything has changed for me, housework, school work, shopping, cooking.  Somedays I rather just not deal....  I am six months out of surgery and I just wonder......Lisa  NY

Comment by Beth Rosenthal on December 12, 2010 at 10:27am

Thank you Alice! One day I hope IJB is able to help all of the survivors regardless if it's with medical bills, going back to school, etc.

I know it will be. I might be 90 then, BUT it will happen. Being financially dependent on someone is very difficult. I am grateful, yet angered about the situation. However, I think that it will get better the more verbal we all are to the public. I think, for me, that is part of my healing.

Comment by alice jena on December 12, 2010 at 8:59am

I am trying to be upbeat.  I also have no real "financial Independence."  I know I am lucky that i have maintenance.  But for the rest of my life I have to constantly worry that the "wasband" keeps up the payments, and stays alive himself.  

Medical bills are quite high, still, even almost two years post-op.  and Pain, so much joint pain, but no real help.  

Yet I am so thankful to the Highest Being for life, and seeing the perfect world.  Even the heavy heavy rain that is falling is a blessing.

I hope and pray that you ALL have good health, and strength. 

Thank you Beth, may you have a wonderful good healthy New year to you and yours, and to all reading this and their families.

We are the Strong ones, for we are still Here!!!   Love and peace, alice

Comment by Linda Wilson on December 11, 2010 at 11:31am

Where I live we have a John Moran Eye Center and they look at the nero side plus eye's I've never had a dr care as much for me a stranger as this doctor did.  I took my MRI's and they found another small tumor.  When I went back to my nero -surgen he told me it has been there all along and it's small enough it just has to be watched, besides it's in a bad place and all they can do with it is try radition.  I hope you find the answers you need and my prayers are with you.

 

Comment by Debbie Higgins on December 11, 2010 at 11:06am

Brenda,

I would say get a second opinion! A few people on this site had mentioned seeing a neuro-opthamologist. I did that and got some questions answered. You might also get an opinion from a plastic surgeon. They do surgery all the time on people who have been in accidents. Maybe you cannot have surgery to correct it, but you could at least try. I think it would make you feel better to seek out other suggestions. Then you will know in your heart you did all you could for yourself.

I have struggled a lot with not feeling like myself.  A neurosurgical nurse told me this week that it could take up to 2 years to find what normal is and to learn to find yourself again. I am trying to accept myself as I am and learn to love me again. It is so hard when you look in the mirror and don't recognize that person any more. But I think I am making forward progress.

You are beautiful Brenda, and God loves you! So try to see yourself as He does, and don't be too hard on yourself. I hope you will try to seek out other physicians who may be able to give you some hope back.

 

 

 

Comment by Brenda Cuellar on December 11, 2010 at 6:11am

Because of the incision in my head my right eye-lid is down and I have limited vertical mobility in my eye. I went to see an ophtalmologist for an annual check-up and asked him what possibilties are for the right eye to get fixed are, The doc thinks its probably better for the eye to remain closed as this will prevent from my eye to dry out and lead to a hernia. 

This just gives me no hope to recuperating fully. I know that I'll never be 100% again but I really want to get as close to it as much as I can.  I can see thru both eyes but one lid is closed all the time.  I feel so ugly. I was hoping for better news.

I don't know what to make out of this. I'm constantly feeling more and more left behind. The least thing I wanted was to be thought of someone to take pity on. But more and more I look like someone who needs help rather than the strong woman I strived to be. 

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