Re: Is it possible to go without surgery?

August 7, 2002

If I was in decent shape (asymptomatic) meaning not having progressive

serious issues or in danger of permamant damge nope I wouldnt have surgery

personaly I can say that 100%.

Just know that surgery is not a cure, its not a death sentence, its not the

worst thing to happne in ones life belive me there ARE far worse for most, I

cant say that some on here are not in serious shape yes we are, seirous

meaning endangered health wise, but that number is pretty damn small to put

it bluntly.

Ive had several freinds on here who opted not to have surgery, doenst matter

if they have huge herniations or syrinx donw the entire spine, it matters

what THEIR body is doing and how its being affected medicaly and the

ramifications of NOt having surgery would be for thier future.

Seomitmes people do fair badly after srygery and MORE do better and go on

with thier lives.

Its personal in the fact that only YOU know what kind of shape your in and

what your anatomy is doing, are you losing vision, falling down (drop

attavcks), choking on all your food, having numbess that wonyt go away and

its spreading, not feeling parts of your body, or progressive weakness or

Atrophys in your limbs, having Apenas and NONE of these are responding to

interventions???, if so you want the BEST possible NSG to help YOU detremine

if your situation is imminenet for suyrgery , is your Stem being compromised

badly, is your flow(CSF) not flowing as it should , have you been to NSG

after NSG and haerd diffrent things or that your NOT a surgery candidate and

ONLY after seeing NSGs that KNOW what chiari is and SM or SB or SC or BI or

Hydro ect........

I always say if the Qulaity of life is being HIGHLY compromised by your

illness then its time to consider surigucal options OR if NSGs have told you

that you have a siaution that could cause you harm, paryalisis, severe

progressions at possible rapid rates or Death (know you dont want to hear

that one but its reality and SMALL% wise but fact as in all surgeris).

I will say one thing for sure, if you Brain stem is being compromised you

need to address it, you NEED it to work .

you may not have options if your progressing quickly, but if you DO have

time, take it and learn all you can and KNOW your body and KNOW your NSG

well, its a team effort.

If I were stable I would do Everything in my power to stay that way on my own

first and use my noggin! Brain farts and all.

hugs and peace,just my 2 cetns tongiht. Off to bed.

Love Dahil Dawn

August 7, 2002

Rhonda from: may20050@...

writes: Is it possible to go without surgery?

I was diagnosed in Aug of 2000 - 10mm (had problems a year before that).

Do I just put up with it because I can handle it? Or should I do the

surgery to hopefully correct it before it causes major problems?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Rhonda,

I have not yet had surgery either. I have 7mm herniation and a lot of

problems. I am still in the examination stage. My neurosurgeon is Dr.

Oro at The Chiari Clinic in Columbia Missouri. He is referring me to a

Movement Disorders Specialist for Dystonia (a Parkinson's related ailment)

It is my understanding that if left untreated you can develop a Syrinx and

Syringomyelia in your spinal cord creating more serious problems for you.

Many in the group have progressed to that point. Others have problems in

additional to Chiari; for instance,

MS, TN, Fibromyalgia, Parkinson's and so forth

Many chiarians have had successful surgeries and have moved on with their

lives......some have returned in a year or two or three.....that's simply

the " nature of the beast " .

You need to discuss your personal situation with your neurologist then you

will be better able to make a decision based upon that discussion.

My two cents worth.

Charlotte in MO

ACM 1 7mm 4/19/2002

Dystonia

Surgery pending

August 7, 2002

Hi all,

I think I've been VERY lucky in the doctor department... My NSG AND my neuro

both understand chiari to a great extent. My NSG is chief of pediatric

neurosurgery at Emory University, and My neuro is chief of pediatric

neurology at Emory, both work out of the children's hospital associated with

Emory. Both are not only skilled medical professionals, but genuinely caring

and nice human beings. What can I say? I've been blessed in the MD

department... I love the guys...

Joanna/Atlanta (16 years)

Chiari 1 Malformation- 17mm

Syrinx from C1-T6 <---------dissipating as we speak!

Neurocardiogenic Syncope (Resulting from miscommunications between my

brainstem and heart). My medications are helping tremendously!

Decompression, Laminectomy, Duraplasty-7/27/01

Dura exploration and surgical debridement of staph infection-9/8/01

IV antibiotic allergic reaction (gave me 105 fever for a week and shut my

bone marrow down). -9/15/01-9/24/01

Serum Sickness from reactions/allergies to so many meds-9/25/01-9/30/01

STILL allergic to EVERYTHING, but hoping not to make any more trips to the ER

anytime soon! I have some residual problems, but I am doing very well, and

life is great!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

The first thing the angels sang is peace...

~*~*~*~*~*~*~*~*~**~*~*~*~*~*~*~*~*~*~*~*~**~*

August 7, 2002

>

> I don't post often, but I read the mail everyday. I was diagnosed in

> (10mm) Aug of 2000 (had problems a year before that). Anyway, I have

> constant pain in the back of my head, constant neck pain, and I feel

> sometimes like someone is trying to choke me, I also have lower back

> pain. I hate the way I feel, but after reading some of the posts on

> here, I'm afraid to have surgery. I feel I have a very high pain

> tolerance. I read on here of so many problems after surgery.

Just read this and thought... " Gee we haven't posted our disclaimer " in

awhile <g>

Here goes:

This list is WONDERFUL...it helps soooooooooooooooooooooooo many people

who are dealing with Chiari and related problems. It is probably one of

the single best sources for current, valid information of the topic.

There are many, many truly caring people here who want to help, in

anyway they can.

But someone new to the list MUST remember....this is NOT....NOT...NOT a

true cross-section of the chiari population as a whole. There are MANY,

MANY people who come here...gain information...have successful

surgery...and then LEAVE...to go on with their lives.

This leaves the list made up of a combination of newly diagnosed

people...a few " oldies " that hang around to help out when they can...and

another group of people with lingering chiari issues that they are

trying to solve. When, particularly new, people read the posts asking

for help/information..it is sometimes FAR too easy to get the impression

that everyone with ACM has many serious ongoing issues, post surgery.

Just thought that I needed to mention this again...I hope it helps to

put some of the posts into perspective.

I also hope that it might encourage people who have had their surgery

done and feel pretty darn good, to sick around and share this

information with others. It really helps....

Please let me know if I can be of help to anyone with

questions,whatever!

All best wishes,

Sally R

ACM...decompression '91..Hydro..VP shunt..2 revisions..no

medications...Played 3 sets of tennis this morning<g>

August 7, 2002

Fellow Chiarians,

I was diagnosed with ACM I in 1989. My symptoms have stabilized and I do not

plan to have surgery anytime in the near future. I credit the symptom

alleviation methods posted at www.pressenter.com/~wacma/bhm-list.htm for the

stabilization.

Bernie Meyer, WACMA staff, diagnosed in '89, Not decompressed

, age 61, married 32 yrs, wife Judy, three kids, ages-

25, 28, 30, symptoms of tinnitus and minor balance problems are

stable

Is it possible to go without surgery?

> Hi All

>

> I don't post often, but I read the mail everyday. I was diagnosed in

> (10mm) Aug of 2000 (had problems a year before that). Anyway, I have

> constant pain in the back of my head, constant neck pain, and I feel

> sometimes like someone is trying to choke me, I also have lower back

> pain. I hate the way I feel, but after reading some of the posts on

> here, I'm afraid to have surgery. I feel I have a very high pain

> tolerance. I read on here of so many problems after surgery. But, I

> do get tired of living with this pain 24 hours a day 7 days a week.

> The question is does this always progress to where you need surgery,

> or can some people just deal with it? And how do know when it's to

> late? Since I have a high pain tolerance, is that my body telling me

> there is a problem? Do I just put up with it because I can handle

> it? Or should do the surgery to hopefully correct it before it

> causes major problems?

> Rhonda

>

> 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/

>

August 7, 2002

Sally,

Your question brings up a good point but hind sight

tends to be 20/20. I THOUGHT I had found a very

skill neurosurgeon VERY familiar to chiari, my sister

a DR had checked with a childrens chiari specialist

about the DR I was to see and stated he was the 4th in

the nation..... He just wasn't 4th in the nation as a

chiari specialist, like I thought..... I continue to

have problems and am waiting patiently for a responce

from UCLA on my MRI's (or at least trying to be

patient )

So I thought I was prepared both with a neurologist

and neurosurgeon prior to surgery but have only come

to know after the fact and after finding this site of

how little I knew, and how few surgeries my neuro

surgeon does on chiari (1 per month).

This kind of decision it is very important to get the

information you need from the Dr so that an educated

decision can be made. I didn't even KNOW what to ask.

I don't feel I had any choice but to have the surgery,

with the symptoms I had going on and would still have

the surgery again, I would just have a chiari

specialist from the beginning so that I might not have

needed to go through the problems that I have and will

continue to go through.

Pam in Oregon 41 years

MVA 3-4-97

ACM1 10mm

decompressed 7-21-99

--- Sal wrote:

>

> > You need to discuss your personal situation with

> your

> > neurologist then you will be better able to make a

> decision

> > based upon that discussion.

>

> Hi...I'm usually trying to answer questions...But

> this statement made me

> a little uncomfortable. I would prefer that the

> person to discuss this

> with would be a neuro surgeon with A LOT of chiari

> experience.

>

> This just got me thinking ( always dangerous) and I

> want to ask for an

> " informal poll " .... I was curious as to how many

> people felt that they

> had found neurologists ( not neurosurgeons) that

> REALLY understood

> chiari????

>

> I was decompressed about 12 years ago and have yet

> to find a neurologist

> with much knowledge/understanding in the area of

> chiari. I am fortunate,

> in that my surgeon is willing to help and answer

> questions that I have.

> I have been fortunate in that I haven't required

> medications post

> surgery.

>

> I was just wondering how many really up to date

> neurologists are out

> there??? I am not looking specifically for

> myself...just to more fully

> understand what is available " out there " for our

> people and how far the

> ACM knowledge has made it in the " neurologist "

> world???

> Sally R

> ACM...decompression '91....hydro....VP shunt...doing

> well in

> Bethlehem,Pa

>

> 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/

>

August 7, 2002

Hi Sally,

All I can say on this subject is that since being dx in 1987, I have never

met a neurologist yet, that understood Chiari! Hugs Robin

> I was just wondering how many really up to date neurologists are out

> there???

August 9, 2002

Dear Sally,

I have been a member since May, of this year when I was diagnosed.

Thank you for reminding me about the success stories!

At this point, I have seen a NSG 2 weeks ago and am waiting to hear back

from him. He showed us my MRI films and explained I have a mild chiari. He

did say he wasn't gung ho about surgery, but may refer me for a second

opinion because my symptoms for the mild chiari I have, baffles him.

I am kinda frustrated and so is my husband.