Frantic Mom

[Guest guest]

Hi ,

I was in your shoes last week of February when we found out my husband

had ACM1. The only symptom he had was getting out of balance once in a while, no

headaches or anything, so I took him to the neurologist. I was surprised that he

failed half of the test and was in shock the next time for the result of the

MRI.

I did the same research and was so grateful for the WACMA group. I went

through 3 NSG and even placed an appt. to go to NY(Milhorat/Bolognese) around

2nd week of July, but decided Dr. Barth Green from Memorial/Miami was

in the list that WACMA recommends, was nearer and also in my insurance network.

He had surgery 3 weeks ago and is doing so great right now, even the doctors

were impressed. As you would find out, everyone is different. The only advice I

would give you is to follow all the guidance(list of good doctors, questions to

ask the NSG, all the information you could get) from the WACMA site. It is a

wealth of information from people who has experienced Chiari(on their own or

their loved one). While my husband seemed so normal, the surgery that was

supposed to be 4 hrs took 12 hours and he had to go thru 6 procedures

(suboccipital craniectomy, C1 & C2 laminectomy, tonsillopexy, duraplasty,

cervical fusion C4). I was told that he had much scar tissue and that the

cereberal tonsils just busted open, it was & #8216;like delivering a baby & #8217;.

The surgery plan had to be revised because these panel of doctors( is a

teaching hospital) would find other things while they were studying all his

MRIs, x-rays & cat scans.

From all the research I did( a lot came from this support group), this

condition could affect a multitude of symptoms and seemed so logical as it

affects the spine which is the network of nerves one has. It has only been 3

weeks but I see other improvements in my husband ( he could now taste whether

the soup/coffee is hot, his speech and hearing has improved, nystagmus has

lessened, there & #8217;s feelings in his hands where it felt numb,etc) that even

he seemed to have ignored before. When he had the sutures removed, the nurse

practitioner said she can & #8217;t wait to see the improvements on his 3month

follow up.

Your fear is a motivation to learn everything you can about Corey & #8217;s

condition and that makes it good. You found out about and now belong to this

support group, the battle is half won already!! I believe you are doing your

best for him and I could only offer my prayers for all that you are going thru.

If there & #8217;s anything else I could do please don & #8217;t hesitate to send an

email.