I'm going to see a neurosurgeon on Friday. There is a chance that I have an Arnold-Chiari Malformation. In absence of gluten ataxia, this would be a diagnosis that I wouldn't want. However, if I have this, which is a congenital deformity, IT IS FIX-ABLE!!!!! It's a pretty easy surgery, as far as brain surgery goes. My neurologist, whom I respect SOOOO much (he was my mentor in PT school), is having Seder meal with the neurosurgeon I'm going to see as I write this! His wife is taking my medical records to his house!

I think it would be so great if this is fix-able! I might be able to walk again without ANYTHING!!!!!!! Please keep your fingers crossed, and if you're spiritual, maybe say a little prayer for me?? I would appreciate it. I'm trying NOT to put my eggs in one basket, but I am really looking for this to be the answer -- I hope that I'm right! Will let you know . . . . . . Lynne

Said a prayer for you.

Fingers crossed, Lynne!

Hopefully this is the answer you've been searching for! We can hope!

Goooooooooood luck!!!

I'm praying for you to get the results you want and it can be fixed.
love
judy

Thanks, guys! I'm afraid that if this isn't the answer, though, the poor doctor is going to have to deal with a bawling, disappointed patient! He's a really great guy, though -- I've worked with him -- and he is my sister's hero since her surgery. I'm going to tell him first thing that if he can fix this, he'll be an even BIGGER hero to me!

I have said a prayer and continue. What a glorious day it would be to have that diagnosis confirmed and ultimately fixed.

Prayer said!

Definitely a matter for prayer. Am praying and hoping that this is the answer for you!

Thank you so much. With all these prayers, surely the doctor will have such POWER! Love, Lynne

Praying for your sucess with this doctor.

Lynne--Just seeing this this morning. This would be so wonderful--please know that my prayers are with you. God--I'm excited for you

Lynne-
I am praying for you today. Where two or more...

I tell you solemnly once again, if two of you on earth agree to ask anything at all, it will be granted by my Father in heaven. For where two or three meet in my name, I shall be there with them. Matt 18:19-20

No good news, guys. I do have a Chiari Malformation. I have a 5-7mm descent of the left cerebellar tonsil through the foramen magnum. The neurosurgeon, though, said that he doesn't think that it has to do with my ataxia. He thinks that it's solely due to the gluten damage.

He said that, because I have cerebrospinal fluid circulating throughout the cerebellum, there is no compaction of the brain -- that is when you are a surgical candidate. He also said that articles tend to portray the surgery as easy -- and compared to removing a malignant tumor, it is. He said that it is no surgery to be taken lightly. He said that I could doctor shop and I would find someone who would operate. He also said that the risk of surgery doesn't outweigh the benefit. He said that, in one situation, the woman ended up with ataxia like I have -- due to an unusual amount post-surgical swelling and complications. He said that if I had surgical complications, he hates to think what would happen to me. I know and respect this surgeon. I don't even feel the need to get a second opinion.

I am pretty bummed about this. What it means is that there is no way my condition is going to change. I had looked to this man as my "knight in shining armor" who was going to wisk me off to the operating table and make me the person I was two years ago. Not going to happen.

I need to work now on resigning myself to living with the abilities I have. I think I'm going to call my counselor for a few more sessions -- need someone objective to help me figure things out. Not doing very well right now, but it's the same day that I got the news. I know tomorrow will be a better day . . . . and the next, and the next and the next . . . .

Thanks for your prayers and good thoughts . . . Now, if you don't mind, I need prayers for the "serenity to accept the things I cannot change" . . . . and for G-d to show me my path. I feel as though the bread crumbs I left have been eaten . . . and I just don't know how to get back -- but I'm not supposed to go back, I'm supposed to go forward, with different abilities. I just don't know the path . . . .

Sorry for the long post. Thanks for listening (or reading). Love, Lynne

Aw Lynne, my heart is breaking for you

I just saw this today and was going to post prayers but you had the results on here already.....

I am saying prayers for you anyway - for strength.....

Hugs (lots of 'em)
Karen

Lynne, Wishing you strength to forge ahead and calmness to deal with this hand you have been dealt.

D.

Oh, Lynne, I am so sorry. Just read this thread for the first time. I will pray for you to be strong in dealing with this blow. But, I really feel that you are already strong and that you will forge ahead and find the path that you now need to follow. Bless you and your family.

Hi Lynne--I am truly sorry that things did not work out the way you'd hoped. I will say a little prayer that you will have the strength to come to grips with and begin to move forward despite this news. I have a strong feeling, though, that you will do just that

Lynne, I am so sorry this did not come out the way you hoped it would. However, perhaps he was your knight in shining armor. If you think he is an excellent doctor and he told you that the surgery could go the other way then, perhaps he is afraid that could be the end result. Then you would be worse off than you are and that would not be good. I hope something shows up to help you in the near future.

Prayers for you, with tears in my eyes. So sorry the news wasn't what you were hoping for.

Thanks guys . . . I think I'm starting to get over the disappointment. My parents sure aren't. My dad wants me to go to South Carolina and have the surgery. My husband (God bless him) had a long talk with him tonight. Hopefully, my Dad got the gist of the conversation, and won't push for the surgery. My mom is sure that we're going to swim EVERY DAY, and that is going to make me better. Period. If it were my daughter, I would believe the same thing!

Thank you for all your support . . . I appreciate it so much. Give me a couple of days, and I'll be back to my silly, laughing jokester. Right now, I think I still need to absorb that I'm going to be in this stupid chair for -- well, forever. I'm pretty bitter about that right now.

My doctors are all calling this "Celiac Disease" now because of Peter Green's book. I told Karen that I want to tell them "this is NOT Celiac disease. I can tell you what celiac disease is: I have a friend who is up all night, almost every night, with diarrhea that won't quit. She has damage which may be permanent to her small intestine and she has other ramifications which may be pretty serious. Walking like a drunk, falling all the time and slurring your speech is NOT Celiac Disease."

I guess I am starting into the "acceptance" phase -- I bought some car polish for my wheelchair! I was told that I should wax it every six months. Didn't do it the last six months, because I thought I would be chucking it into the closet until someone needed it. WRONG. So, if I have to have a wheelchair, at least I want a nice one. It is kind of pretty. It's candy-painted Teal. I just bought some flashing stars that kids put on their bike spokes so that at least, if I have to have it, it can have some "flash"

Okay, I'm getting into the really bad jokes now -- will have to go. Seriously, thank you all again -- so much. You have turned out to be not only great support, but great friends. I appreciate each and every one of you. . . . . Love, Lynne