Re: I'm new ... Hello ... Help ...

July 30, 1999

Hey guys,

Boy!!!! It took me an hour and a half to read my e-mail. I havent been on

puter for last two days,(have not been doing good). I cant believe some of

the people are writing in a few days after surgery.....you guys are doing

great!!!!!!

Well I missed out on the confrence too:((((( But I did not even know about

it till 2 days before it started. I am new to the group and I have a new set

of best friends:)))))

THANK YOU THANK YOU...for being here for me to talk to. Everyone has a really

hard time understanding my day to day pains and obsticals.

Its like today my hubby threw me the remote control and joked about hoe slow

my responce is....... I was like HELLO at least I have a reason....... anyway

I feel like he wants to pretend its not there. I am so glad I have you guys

to talk and listen to. My daddy was always concerned about my feelings from

day to day. Even when there was alot of comotion going on , he would always

be worried about me and how I was feeling. When I had my surgery and had

chemical menigitis afterwards, He called our church every day to request

prayer...... Well..... now my daddy is gone he died 3 months ago. I miss him

so much!!!!!!! It hurts so bad and I miss not having anyone to " ask " about

me . Sorry to keep on and on but I feel heavy tonight and I needed to

" lighten " my chest. Thanks for listening.....

Also I WILL NOT miss the confrence next year, will It be in the same place??

or does it change each year????

and Kim ????? I missed you this week, sorry we didnt touch base. Hopefully we

can get together next week

I hope all of you are having a pain free friday night..

Lots of hugs,

July 30, 1999

Hello all,

I just want to introduce myself. I've been subbed for a day or so and it has taken that long to get through the list of mail. I had never heard the word " Chiari " until it came out last week on one of the CFS newsletters I receive. I wouldn't be surprised if there are even more new members.

I live in Alabama ... yes, it's hot here! I have a VERY low tolerance to heat and always have ... so I'm always content living on the inside. I see lots of people mentioning the weather ... I'm just SO THANKFUL for air conditioning!

I have reviewed the many links to Chiari, and am convinced this is my problem ... and need to know where to begin to seek diagnosis. I was diagnosed with FM in 1986 and CFS in 1995 although I don't know the number of times I've been sent to neurologists to rule out MS and other neurological disease. I've also been diagnosed with mitral valve prolapse syndrome and am on a beta blocker to control my erratic heart rate. I recall having participated in a FM research project in 1995 and had my second spinal tap done at that time. I recall the technician/doctor (whoever did the procedure) commenting several times about my spinal fluid being SO SLOW in coming out. The nurse told him, " It's not because she isn't hydrated. " I had been drinking a gallon a water a day for a week prior to being admitted for these procedures. I did have an MRI done about a year old on my neck ... and as it was read at UAB only showed degenerative disc disease .. and something else which I can't remember without looking at the report.

Basically, as I have looked over the long list of Chiari symptoms, I have all of them with the exception of one or two! That may sound extreme, but I have been hunting and hunting and hunting ... and had finally accepted I must have only CFS. Now the vision problems, the balance, the tinnitus, my gait, frozen shoulder, chronic neck pain, migraines, headaches, bladder problems, insomnia, low body temperature ... and on and on and on. I may be wrong on this one ... but I don't see how.

Well, I don't need to take everyone's time ... I see there does seem be be genuine compassion and concern on this list for others, and I like that. It makes me feel welcome to begin with.

I have a wonderful supportive husband for whom I am so thankful, am 49 years old ... sick for the last 13 years and have three grand-daughters. I don't like to hear the hereditary aspect of this ... but I'm beginning to understand lots of things. My 23 year old niece is having similar problems already and my sister has also been diagnosed with FM herself. I also find such acceptance, love and companionship with my two dogs, Puppo & Puffy. I never dreamed what a pet could mean to my life until Puppo came to live with us almost two years ago and Puffy arrived last Christmas.

What I need most of all is for someone to recommend a doctor who is experienced in this field. Do you recommend I start with another neurologist or do I begin with a neurosurgeon. I will have to go wherever required if there is truly some hope for me. Sorry to be so long ... but it feels like maybe some hope is bubbling inside of me for the first time in several years ... to think I might get better.

I apologize for taking too much of your time ... but want you to know me a little bit and also want to thank you so much for any assistance you can provide me ...

Blessings to all,

Crystal Haynes

(AKA arefound AKA JC ... I think I already saw a JC on the list, or did I? I mean ... how can I remember? :))

July 30, 1999

Hi Peppi,

Thanks for the welcome ... I'm from 's Gap, AL ... a hole in the road about 40 minutes northwest of Auburn University. I will try to hunt my note and send it to you alone as I hate to take up the phone for .... oops ... it will take me more than a while to learn the names ... but the one in Vermont who shares phone time. So ... I will try to repost it privately. Where in Alabama are you from?

I have changed my background ... actually the white is really bright to me and I have trouble with brightness. Do any of you have that problem or is that only me?

I also wonder if I may be still a little different because supposedly a rare " nerve " hereditary nerve disease runs in our family. My dad never got a diagnosis--no name he was told by the head of the UAB Parkinson's Clinic although three other neurologists all thought he had something different! Thank God, He is out of his pain and suffering now and is with our Father ... but I miss him ... but I take that to the Lord too ... no other place to go with it ...

Blessings!

Arefound (Crystal) (until yall get used to me & my name)

-----Original Message-----From: GPKD4SUM@... Sent: Friday, July 30, 1999 11:31 PMTo: arefound@...Subject: Re: Re: I'm new ... Hello ... Help ...Hi ?I would really like to read your post but the background makes it verydifficult to do so. I thought I saw the word Alabama in there. I am alsofrom Alabama. Would you mind resending it with a white background? Thereare many in the group with vision problems who can read black ink on whitebackground the best. And by the way, welcome to our group. We're reallynice folks who like to help people, if we can read the questions.Friends, Peppi

July 30, 1999

Thanks, Bernie ...

Wow ... everyone is SO helpful. I know that's not the kind of MRI I had because they didn't put anything on my finger. Strangely enough, I had written the neurologist probably a five page letter of my symptoms. I still have a copy of it (it was the first time of seeing him), and I " think " I mentioned the low/slow spinal fluid since that was part of the FM Research results.

I found the list of recommended doctors ... but there's not one on there for Alabama. I might could call UAB and ask for a nsg ... actually I saw one there in 86 at my first dx ... I'm just wondering if it would be best to see one of the ones who are involved in the CFS/FM study related to Chiari ... or to see anyone. How many Chiari patients also have been dxd with FM and CFS? Once the Chiari dx is reached, are the FM and CFS diagnoses dropped? I say that ... my Rheumatologist for the last 13 years has been my main stay ... I cannot imagine losing him as a doctor. He's so wonderful ... believed me years ago when others doubted. He's also good to refer me to where I need to go also.

I am SO glad to read that you have experienced improvement with your condition ... this is another letter of hope. I have all of your symptoms listed ...

Thanks for the great intro ... even to your family :) My family makes my life go around. Thank God they understand me. I have a sister that hardly speaks at all--she thinks I'm lazy ... but then thank God He has shown me how to cope as best I can ...

Blessings to you and thank ALL of you for such support!

JC

Re: Re: I'm new ... Hello ... Help ...

Crystal,

Welcome to the WACMA support group!!!

We have a list of doctors with ACM experience posted at http://www.pressenter.com/~wacma/usdocs.htm. Neurosurgeons have the most experience but do not typically operate unless the symptoms warrant it. Some doctors prescribe the diuretic Diamox for symptom relief. The dosage may have to be changed to get the relief. Also see our symptom alleviation methods posted on our web site at the Onsite Information list of links.

Make sure you get a dynamic MRI (CINE). It is a normal MRI except they put a small clip on one of your fingers and then special software monitors your spinal fluid flow. Spinals or epidurals are typically NO-NO's for Chiarians as they can increase herniation due to loss of spinal fluid pressure.

Peace from Philly,

Bernie Meyer, age 58, ACM 1, not decompressed, diagnosed '89, symp-minor balance problem, minor focus problem, ear ringing(tinnitus), three children, 26, 24, 21, wife Judy, married 28 yrs, symptoms appear to lessen each year

July 31, 1999

Thanks for your reply and the info. This has to be the most friendly

list I've EVER seen!

I'm sorry for your diagnosis; wow, you sound like you really have a bad

case. Have you had the surgery? Did you experience improvement?

The two doctors in particular that I notice are Dr. Oro and Rosner ... I

would have to make arrangements, but I have seen their names connected with

the CFS. Dr. Jon is the doctor in San who is doing the

study between FM/CFS and Chiari ... wish I could have been in the study. I

saw that Dr. Oro also has a study going ... but it requires a 3, 6, 12 mth.

follow-up ...

How I know what you mean about the doctors not referring ... that some think

they " know everything " and it seems that it would be an insult to them for

them to have to refer a patient to somewhere else. I definitely think I

would feel more comfortable seeing someone with experience. My Rheumie has

felt for so long that I have a " neuro " problem ... yet all the neuro's test

are always negative. I began to experience a tremor a few years back which

has gradually worsened--especially over the last couple of years. My hands

tremble at times, but my most noticeable is with my head. I think that may

be something separate. What part of NC is Dr. Rosner in? I forgot!

I do have a friend in Springville, MO ... She might could put me up a day or

so. Trips, etc. are so hard for me ... the fatigue, pain ... although I do

have one of those portable heat massage seats that does help. Oh, well ...

all of that is down the road. Do you think it would be better to try and

contact one of these doctors to begin with for dx or be dx'd locally and

then to one of these doctors? By the way, what city in Florida is Dr. Green

located? The rest seem out of reach for me.

Bless you, little one ... so the surgery never helps the size of the

problem? What does the surgery do in way of correction?

I may be a little scarce this week as my grand-daughters are here to visit

their last time until school vacation. They live in Birmingham and are ten

and almost nine. They are truly a help to me. I don't get to see my

youngest--she turned a year old on July 10 ... was born one year ago, of

course, ... at supposedly 25 week gestation weighing 1 lb. 9 oz. with very

serious handicap predictions. Thank God, she can see, hear, and is very

alert at this point with none of the conditions they predicted. Although she

underwent three surgeries and spent her first five and one half months in

the hospital, the Lord chose to give her life. I believe ALL life is a

gift--we don't understand why some make it, and why some go home with the

Father so early. I just trust that God always knows and has a reason. She

does have the chronic obstructive pulmonary disease because she was on the

respirator for a good 4 1/2 mths. ... long story which yall probably aren't

interested in ... so that's enough for now. See how I ramble ... and just

get carried away! Yall will regret my arrival on this list! But you're

treating me like family already.

Thanks, ... looking forward to knowing you better!

Blessings,

JC (Crystal AKA arefound)

PS: I imagine these doctors have a LONG waiting list ... does anyone know if

they take Medicare? I have been on disability since 1996 ...

Re: Re: I'm new ... Hello ... Help ...

Hi Crystal..yes you do have the problems of a chiarian ...but better

pray you don't have it..alot of us here suffer tremendously every day

....day in and day out....i have 29mm herniation... that is 3 x the

normal... my mom always said when i i do things i did them in big

way...i guess so.... well, back to the chiari ... a doctor near

you...hhmm... this is a problem for all of us... there is a " unspoken "

" BIGGIE " list among us... is includes doctors- neurosurgeons that come

very highly recommended... they are:.... Rosner in NC, Milhorat in NY,

Tew in OH, Heffez in Chicago, Oro in MO, Frim in IL, Baztdorf in CA, and

Green in FL... These just come highly recommended by many of us on the

list....of course there are many other doctors but it is very important

to find a doctor that " truly " knows about chiari...they will lie to keep

from looking like idiots...alot of us have had that problem.... good

luck and email any time with any other questions you may have.... oh i

would not mess to much with neurologist they tend to want to do things

that should never be done to chiari patients...ie... spinal taps

,etc....see ya ... in SC

July 31, 1999

Hello ,

I notice your note wasn't directed to me ... but my dad is also gone. He was

so precious ... I'm so different from Mom and my sisters. They cannot

identify with me whereas my dad was so precious. Everything I know is a

" long story " ... because I don't know how to condense them, so I won't share

this ... but I can tell you I know how it is to miss one with whom you are

so close. Daddy always understood me ... He gave me a special gift ... he

was in my arms when he left with the Father. He left on March 29, 1998 ...

it will never be the same, but I find my memories keep me going.

If you want to write me, please feel free to do so ...

Sorry you have been under the weather and hope you get better--more strength

also.

Blessings,

JC (Crystal)

Re: Re: I'm new ... Hello ... Help ...

Hey guys,

Boy!!!! It took me an hour and a half to read my e-mail. I havent been on

puter for last two days,(have not been doing good). I cant believe some of

the people are writing in a few days after surgery.....you guys are doing

great!!!!!!

Well I missed out on the confrence too:((((( But I did not even know about

it till 2 days before it started. I am new to the group and I have a new set

of best friends:)))))

THANK YOU THANK YOU...for being here for me to talk to. Everyone has a

really

hard time understanding my day to day pains and obsticals.

Its like today my hubby threw me the remote control and joked about hoe slow

my responce is....... I was like HELLO at least I have a reason.......

anyway