RE: Success stories

[Guest guest]

Kathleen,

Thank you so much for sharing your success story! And I couldnt agree with

you more about hearing from others out their about their success stories as

well. We all need a little pick me up during this Holiday season. Happy

Holidays everyone!

Coulson

[Guest guest]

I am a success story....although I don't believe it all the time...LOL

I was diagnose out of the blue on Valentines 2001.....no symptoms by my

condition was very severe and I was warned that I either had surgery or

death was a very real possibility. My condition involved a rare cranio

cervical malformation that among other things cause Chiari and basilar

invagination.

I was extremely lucky because even though the problem is congenital I was

diagnosed before serious symptoms developed, I was also scared badly enough

that I searched for the very best nsg....for my conditions there were very

few options and I clicked with a marvelous man in the University of Iowa.

The biggest scare was when my doc asked me to have my kids tested.....I held

my breath until we determined they were OK....no malformations

I found this group 3 months after diagnosis and had surgery 5 months after

diagnosis......surgery was in Iowa, far away from home. The surgery was 10

hours long, 9 days incubated and a total of 3 weeks in the hospital. The

nsg corrected what he could but I still have medullary compression and a

wide syrinx in a dangerous place that is resolving. I was in a halo for 4

months, in a SOMI brace for 2 months, a Miami j collar for 2 months and a

soft collar for 2 months........it sounds like torture but it really was not

that bad......we made the best out of the experience and the kids enjoyed

having me as enstein for Halloween, I had the perfect costume!!!!

I started working 6 weeks after surgery....halo and everything!!!!!! I was

not able to drive for many months so my husband would drive me back and

forth...... I needed the office, the clients, action.......it did tons for

my recovery.

After my surgery I have closely supported 5 patients that have undergone a

similar surgery......the 5 of them have become dear friends and I hope to

organize a reunion next year....two of us and a PRO on these kind of

surgeries had a mini reunion this year that was a blast.

I have had ups and downs, cognitive problems, depression, grieving, spasms

etc but 90% of the time I am fine......I see a neuropsychologist for

cognitive therapy and will start seeing a psysiatrist that will help me with

my neck limitations (I lost most of the neck movement). I have been able to

ignore the bad stuff and find peace, I have also reduced my work load to a

decent number of hours, I lift weights, swim, ride the bike, walk.....take

care of my kids, do the room mom thing, soccer, basketball......but I

haven't done laundry or cooked dinner again, hubby found out he enjoys

those.....I am married to an angel.

I continue to find new things about my condition and have decided to get

educated.....my nsg is the best for my problem but he has only seen 25 cases

like mine......soooooo the reality is that the future is uncertain. My

story is NOT OVER....I don't think it will ever be over.....after brain

surgery things change forever, new doors open and I have decided to enjoy

the wonderful world that I discovered after brain surgery.

The truth is that people can not tell I ever had surgery and I am able to

have a very close to normal life.....having had redefined normal along the

road.

YOU CAN DO IT TOO......be positive, be flexible and believe in yourself,

learn to live with your limitations and take charge of your health

care....never give up.

Alba in Dallas

Success stories

Hi Friends,

In light of the holidays, I would really like to see some members post about

their success stories. I know we tend to get down around the Holiday's when

our health isn't optimal and to hear some good stories would be wonderful.

Myself, I was diagnosed in 1990, decompression then VA shunt for

hydrocephalus. I was left with severe 24/7 headaches that were diagnosed as

migraines. I took all kinds of meds to help prevent the daily pain for 7

years.

Symptoms progressed after a fall in 1997, and made my life miserable.

Doctors telling me my chiari was gone, get on with my life, when I couldn't

get out of bed.

At the same time I found WACMA in 97 I convinced my local surgeons to refer

me out, and they sent me to Dr. Milhorat.

Dr. M, and then resident Dr. Bolognese did a second decompression for me. I

felt like Heaven for 6 months post op and was involved in a small motor

vehicle accident, bringing on symptoms of a different nature.

I was soon diagnosed with cervical instability, had a craniocervical fusion.

The fusion limits my range of motion, and if I behave, I can keep the

muscles pretty much under control.

Within the year, my VA shunt failed. Yikes, another surgery! We changed it

to a VP and I have since had a couple of revisions on that.

It appears to be working well at the time. I have some blurred vision, but I

deal with that by finding new things to do. I used to sew reproduction

needlework and I taught classes, but my vision doesn't think that is a good

thing any longer.

I don't suffer from the daily pain that followed me for 8 years. I have

adjusted my life style to fit my needs. I am happy, healthy, and proud to

have come this far.

Disability decisions came hard for me. I decided almost two years ago that I

couldn't function in a normal work atmosphere on a reliable basis. I

couldn't meet deadlines with sewing any longer. I always thought applying

for disability was giving up. I DID NOT give up. I asked for help, and I am

thankful the system is available to us.

I still have not given up hope of some day having a neck that will allow me

to do more. Yes, by all means, I am a success. I cherish every day. I may

swear at some of them, but there is always something that I have to look

forward to in each day.

Bless all of you that suffer daily. May health be in your future. May peace

be in your heart. Never give up.

Kathleen

[Guest guest]

LAUGHING HARD HERE YA'LL

I typed fast, did not check and now rereading it I found many errors.....the

worst being I WAS INCUBATED for 9 days.......I am laughing very hard!!!!!

I forgot to share with ya'll that part of my success is recognizing my

limitations and laughing at them.....English is my second language and if I

am excited or upset my English leaves my brain!!!! I could write a book on

all the stupidities I have said these 12 years.......life is FUNNY.

Alba

Success stories

Hi Friends,

In light of the holidays, I would really like to see some members post about

their success stories. I know we tend to get down around the Holiday's when

our health isn't optimal and to hear some good stories would be wonderful.

Myself, I was diagnosed in 1990, decompression then VA shunt for

hydrocephalus. I was left with severe 24/7 headaches that were diagnosed as

migraines. I took all kinds of meds to help prevent the daily pain for 7

years.

Symptoms progressed after a fall in 1997, and made my life miserable.

Doctors telling me my chiari was gone, get on with my life, when I couldn't

get out of bed.

At the same time I found WACMA in 97 I convinced my local surgeons to refer

me out, and they sent me to Dr. Milhorat.

Dr. M, and then resident Dr. Bolognese did a second decompression for me. I

felt like Heaven for 6 months post op and was involved in a small motor

vehicle accident, bringing on symptoms of a different nature.

I was soon diagnosed with cervical instability, had a craniocervical fusion.

The fusion limits my range of motion, and if I behave, I can keep the

muscles pretty much under control.

Within the year, my VA shunt failed. Yikes, another surgery! We changed it

to a VP and I have since had a couple of revisions on that.

It appears to be working well at the time. I have some blurred vision, but I

deal with that by finding new things to do. I used to sew reproduction

needlework and I taught classes, but my vision doesn't think that is a good

thing any longer.

I don't suffer from the daily pain that followed me for 8 years. I have

adjusted my life style to fit my needs. I am happy, healthy, and proud to

have come this far.

Disability decisions came hard for me. I decided almost two years ago that I

couldn't function in a normal work atmosphere on a reliable basis. I

couldn't meet deadlines with sewing any longer. I always thought applying

for disability was giving up. I DID NOT give up. I asked for help, and I am

thankful the system is available to us.

I still have not given up hope of some day having a neck that will allow me

to do more. Yes, by all means, I am a success. I cherish every day. I may

swear at some of them, but there is always something that I have to look

forward to in each day.

Bless all of you that suffer daily. May health be in your future. May peace

be in your heart. Never give up.

Kathleen

[Guest guest]

The really funny bit is i didn't even notice!

Beth in Australia

=============

taliesin@...

ICQ 5162302

MSN bethhar@...

----- Original Message -----

>

> LAUGHING HARD HERE YA'LL

>

> I typed fast, did not check and now rereading it I found many

errors.....the

> worst being I WAS INCUBATED for 9 days.......I am laughing very hard!!!!!

>

[Guest guest]

I would also like to add a success story, or maybe two. My sister was

diagnosed with Chiari and SM, after symptoms resulting from a car accident.

I was supportive through all her misdiagnoses and finally her surgeries.

That was many years ago and today she is doing wonderful, working and staying

active. My 12 year old daughter was a cheerleader. She started complaining

about headaches after practice (back flips probably weren't the greatest

thing for her to be doing). When I asked her where it hurt, she pointed to

the base of her skull. She said it felt like someone was pressing their

thumb really hard. I was lucky, because I was already familiar with Chiari

from my sister. I took her in for an MRI. She had Chiari also.

We chose Dr. Lazereff at UCLA for her surgeon. He is head of pediatric ns

and works with Batzdorf. He is a dream come true. She is fully recovered

and is leading a normal teenage life. She is 16 years old now. Virtually

all her symptoms are gone. Her gag reflex is even returning. She has no

follow-up appointments anymore. She swims (varsity as a sophomore), plays

basketball, rides horses.

I attribute her success to early diagnosis, early treatment, and an NS that

specializes in Chiari patients. (The day of her surgery, they did 4 " Chiari "

decompressions.)

Beth Bucholz

Bakersfield, CA

[Guest guest]

I would say that I'm a success story...I have been through it all

decompressions, laminectomies, shunts, fusion, 2 transoral surgeries,

Halo, tracheostomy, sepsis, etc...you name it, I had it.

Yet, I'm still standing(even if it is a little unbalanced) and

still manage to keep a sense of humor about the whole thing. Even if

my body no longer looks or functions like it once did, I'm still

here, to me that is a success.

Happy Holidays All!

in NY

My full chiari story http://www.angelfire.com/hi5/figgyminute/

[Guest guest]

Geeee...... you are probably the biggest success Dr Menezes has had

......I can tell he was extremely happy when he told you the syrinx was

gone....his eyes shined soooooo bright. I couldn't tell who was

happier......you, your dad or the master....it was great to witness

success!!!!

Thanks for your positive attitude and your sense of humor....I laugh about

your jokes for days!!!

HUGS

Alba

Re: Success stories

I would say that I'm a success story...I have been through it all

decompressions, laminectomies, shunts, fusion, 2 transoral surgeries,

Halo, tracheostomy, sepsis, etc...you name it, I had it.

Yet, I'm still standing(even if it is a little unbalanced) and

still manage to keep a sense of humor about the whole thing. Even if

my body no longer looks or functions like it once did, I'm still

here, to me that is a success.

Happy Holidays All!

in NY

My full chiari story http://www.angelfire.com/hi5/figgyminute/

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

> In light of the holidays, I would really like to see some members post

about their success stories. I know we tend to get down around the Holiday's

when our health isn't optimal and to hear some good stories would be

wonderful.

Hi,all....

I just returned from a brief jaunt to visit our son in Fla.And wanted to get

a quick note out on this....

First of all I would like to do an unpaid commercial for the " Success

Stories " on Chip's page:

http://www.pressenter.com/~chip/chiari.htm

If you haven't read them, please do so...If you have read them, this might

be a time for a re-visit!

Mine is one of these, but breiefly...I went ( in a mioonth's time) from

teaching fitness classes to essentially being bedridden in excruciation

pain. Not fun!

I was diagnosed as having severe sinus impactation and was treated

accordingly with a myraid of medications...nothing helped at all. As a

matter of fact, one I had an allergic reaction to, casusing my tongue/throat

to swell.

Finally after a couple of trips to specialists, the ER, etc...with symprtoms

worsening...I finallt starting having seizures....amazingly the Drs then

starting thing " neurological " as a potential problem. Better late than

never...

The Neurologist that treated me after being taken to hospital via

ambulance...after a c-scan gleefully concluded that I had a massive tumor in

my ventricle. Wrong!!!( needless to say, this was a very difficult time for

my poor husband) Then a neurosurgeon who was new to our hospital asked to be

on the case becasue SHE thought that she might know what the problem was,

and she disagreed with the working diagnosis.

After an MRI ( during which I suffered 3 seizures) , etc...she felt very

strongly that it was ACM that was causing the majority of my problems. The

herniation was causing a hydrocephalic condition in mainly my 4th

ventricle...backing up the fluid and this is what the " rocket scientist " had

read as tumor.

Now, mind you, this was in the " dark ages " for ACM..essentially 12 years

ago. She performed the decompression and removal of MANY adhesions under the

dura...

the surgery took over 8 hours. I felt MUCH better following this, however 6

months later I required the addition of a VP shunt, which I knew was an

option from the beginning.

Since then I have really led a pretty normal life... I have made some

consessions and gave up a few things that I, personally, consider to be

counterproductive to continued good health with chiari...amusment

rides...horseback riding...running...etc. I still do MANY other physical

activites...

If anyone has any questions about my experiences or if I can try to help in

any way..please ask!

All best wishes,

Sally R

ACM..Decompression '91...

Hydro..VP shunt..2 revisions

Doing GREAT in Bethlehem,Pa with NO medications