A second opinion from Dr. Benzel........long....

[Guest guest]

Hi All!

It has been a while since I've posted, as I had a 3 mo. wait

for my appointment with Dr. Benzel at the Cleveland Clinic. Although

he agreed that I had a 4-5mm chiari malformation w/o syrinx, he would

not advise surgery at this time. He was a very compassionate and

conservative doctor, and I do respect his opinion. He has written

articles and given talks on chiari and syringomyelia, and was the

moderator for the 2000 ASAP/Chiari conference. I had rented all the

tapes from the 2000 Conference before visiting him, and had an idea

that he was a very conservative, yet compassionate doctor. I had also

received the same opinion from Dr. Rea, a neurosurgeon in Columbus,

OH.

I am VERY symptomatic and am unable to work, but despite these

factors, he stated my CSF flow was normal on the cine MRI. I told him

that I felt surgery was the only chance of ever being able to work

again. (I am a nurse.) He understood that I am desperate, but stated

that he thought the risk of making me even worse, possibly not

getting better, and the risks of

complications were too great. I also have sarcoidosis (granulomatous

autoimmune ds.) and fibromyalgia. He stated that due to the recent

publicity of the fibro and chiari relationship, (which he feels that

chiari malformation does not really happen in fibro more often than

in the general public), he was organizing a team of Dr's. at the

CLeveland Clinic to work with pt's that are not surgical candidates

with the chiari/fibromyalgia combo. He is currently working with a

rheumatologist there, and that is who he is referring me to. So, I

see him in March. I am willing to travel 3 hours to go back, as there

are no doctors in the Columbus, OH area who even have an interest in

chiari, or some will not even admit it exists.

I have been off work for 5 1/2 months, so, now I am faced

with filing for Long Term disability and Social Security disability.

I am hoping the fact that I have numeoruos medical problems will make

it easier to obtain. (Chiari, Sarcoidosis, Fibromyalgia, Degenerative

Disc Ds. (s/p 2 back surgeries), kidney stones, Mitral valve

prolapse, Postural orthostatic tachycardia, TMJ, anemia, peptic ulcer

ds., Irritable bowel syndrome, etc.) I am single, so I am also having

to sell my home and move in with a friend. I know that God is

watching out for me, as things could be much worse than they

currently are, and I actually am fortunate to have worked for a

company with excellent benefits.

I would appreciate hearing form anyone who has any words of

wisdom to offer, or any advice on the disability process. I admire

all of you for dealing with this physical challenge on a daily and

sometimes minute to minute basis. Take Care!

ACM1 4-5mm

No Surgery Reccomended