my story ....more than chiari (looong)

[Guest guest]

Hello you all!

I have written in the past ...mainly asking questions and trying to sort out

what I have and what to do! Several of you have help a lot and given me tons of

support ....among others Chip, Kathleen, Suzzane, Faith, and

......now I understand what the problem is so I have decided to stop crying and

go for surgery.

Here is my story .....for the benefit of those out there that are trying to sort

this Chiari thing out.

About two years ago my best friend got sick with cancer and I started having a

bit of trouble with my hands, they did not work very good when I needed to open

zip log bags for example. I thought it was stress related. A year and a half

later my friend died and I started having a bit of drooling on the corner of my

mouth. I kept thinking it was all stress, it had been the most difficult year of

my life ..or so I thought!

Because I had an aunt that was diagnosed with MS and died in a couple of months

(which was pretty unbelievable) I went to my family doctor and told her about my

little problems, she sent my to a neurologist. The neurologist at Baylor in

Dallas did not think I had MS but wanted an MRI just for future reference.

Well, the poor technician that did the MRI was white as a sheet of paper as he

completed the test.... he asked several times if I had an old neck injury ....I

keep saying NO and he kept asking. I thought he was silly and did not think

anything of it.

All my life people have asked me if I have a stiff neck because I move it funny

......my husband says he has no idea why people ask, he can't see anything out of

the ordinary ..... so it is not like it is obvious to everyone. In the other

hand my mom moves her neck the same way I do and I thought it was a genetic

thing.

The day after the MRI the Baylor neurologist called me to make an appointment

and said to bring my husband .....I immediately obtained the radiologist report

because I thought they had found MS, I did not have MS .....but a mechanical

problem ...I faxed the report to my father in law (who is a surgeon in

Venezuela) and he called me and said he was glad I was living in the US and that

Baylor was great, that I needed surgery very soon and there were no doctors in

Venezuela that could help me. He was very right.

My husband and I went to see the Baylor guy and he pretty much gave us an

anatomy class, he was very nervous ....in summary he said what I had did not

have a name but it was bad enough that I could die if I was rear ended for

example. I do drive about 2 hours a day ...he said I needed to be around people

that knew CPR and should avoid almost everything...he said to not look up, stop

all sports, avoid dental work and watch myself because if I missed a curb that

could be it.

He also said only 2 or 3 doctors in the world could help me ....one in the US,

one in London and one in Italy ....he was not really sure but he offered to

research it for me. I was crying so hard that I did not hear anythig he said

later on.

I could not beleive it. I have had a normal, active, busy life...have play

every sport there is, have been in roller coasters tons of times and had two

pregnancies where I gained 45 lbs each time ....no pain, no problems .....ehat

was this guy talking about?

The next day we saw a nsg in Dallas ...the best there is when it comes to necks,

Dr Coimbra .....he said he needed 3 weeks to study the case and consult with the

world expert, Dr Menezes in Iowa. Three long weeks later he told me I better go

see Dr. M ....this doctor is from the group that did JJ this week, they are

really very, very good so he sending me to Iowa really made me sick. I made up

my mind that no one could help me and that I better live it alone .....I did not

know what to do, get ready to die perhaps?

About 3 weeks ago my husband, family an friends convinced me I should go to Iowa

....so to make them happy I made the trip to Iowa, I just went to kill that birdm

I was not planning to do any surgery at all ....I met Dr. Menezes and understood

I had to do it. He was the first doctor to mention CHiari and he is a great

caring doctor and everyone I met adores him. He said I need transoral and neck

surgery ....because of a cranio cervical congenital malformation my odontoid is

compressing the medulla and has caused a syrinx and Chiari, he told me not to

explore the Chiari sites because my problem was much more than Chiari .....my

surgery will be 10 hours long, then I will spend 1 week in the ICU and 2 weeks

in a regular room. Then I will be in a cervical halo for 4 to 6 months.

The weird thing is that I have never had real symptoms.....nothing that ever

made me go to the doctor ..........no real problems....and now being healthy, or

feeling healthy I should say, I am going under the knife in a very big way

.......I am in shock still.

The good that has come out of this is that I have met wonderful people, you

chiaris included!!!! I actually met while she was in the hospital ..and I

met other patients of Dr M ...I am surprised we don't hear more from Dr M in

this group..maybe his patients have moved on ..he is such a nice man.

The bad thing is that my kids could have it ......we will have them tested soon

If they have it that could send me to the nut house! I now think my aunt never

had MS but what I have and my mom probably has it ..she is about to turn 60. I

have requested her MRI's but have no clue if I will ever get them.

It has been about 3 months and I have accepted it, not once have I wondered why

me....I have been grateful that it's me and not my kids. Lots of tears, huge

fears and emotions but have kept working and the family has pretty much kept the

routine.

I have no clue how I will go from working 10 hours a day, being room and soccer

mom and having the kids doing sports year round to sit in a halo for

months....my kids have never seen me down, not even with a cold .......now I

won't even be able to go to the grocery store by myself .....at least not for a

while.

I know recovery is hard but my goal is to go back to work ASAP, Dr. M thinks I

should try in 6 weeks but I know it is not that easy......still that is my

goal.....my paycheck is our main source of income and I love what I do.

My surgery is scheduled for July 3rd ..in Iowa ..wish me luck

I hope my story helps someone out there .....

Alba

[Guest guest]

Dear Alba,

I tried to respond and my darn computer kicked me off. Just wanted

to tell you that you will probably be one of the ones that does well

and sooner. I am sure there are many others that have had the halo

and can speak of their experience, but I'd like to share ours.

From what we have learned - recovery is usually easier and shorter

based on how long you were symptomatic....with you not having major

symptoms upon diagnosis....you should be one that will do well.

Basically, with chiari surgery the sooner the better...with less

chance for permanent damage that can come with untreated long-term

symptoms.

When my 24 y/o daughter's symptoms began after a truama induced

chiari at 19....went mis-diagnosed for over 3 yrs....those symptoms

escalated and she developed more and more problems.

At first it was neck spasms, some headaches...then gradually over the

3+ yrs she developed IBS (Irritable bowel - creating a fissure that

had to be operated on), sleeping disorder (alpha over delta-the brain

stays in the active dream state w/little restorative sleep), Horner's

syndrome (uneven pupil dilation and eye droop),

She also developed a kidney stone..(probably from all the meds she

was a quinea pig for),bladdeer problem (loss of sensation), no gag

reflex, and of course the famous fibro-fog (her only post-accident

diagnosis was FMS)and the goose-neck you describe.

All these from what turned out to be initially a mild herniation of 2-

4mm and tonsil wrapped brainstem.

Kari is doing much better - she had to have 3 surgeries....the 1st

one was a standard decompression, 2nd removed a cyst that formed and

laminectomies of C2-top of c-5, the " Last " surgery was to remove the

herniated tonsil that had wrapped and kinked the brain stem.

Her surgeon has changed his proecedures and now doing the tonsil

removal with the standard decomprssion when the mRI and symptoms show

this is a problem.

Kari my daughter feels that to have the surgery in at least 2

steps...allowed her to be one of the few that had...absolutely no

nausea. Since tonsil removal...usually affects that response. The

last surgery was the longest but the easiest in recovery and surgery

pain.

Pls take care, I know that this must be frightening for you and all

that are newly diagnosed....but as my daughter would tell you. You

are a lucky one to find it before it found you.....and knocked you to

the ground like it did her!

We are thinking of you and your family!

Dori

mom of 24 y/o Kari

8 wks post-op...from cerebellar tonsil removal...

she can lift her arms and look up...for the first time in years!!!