To have surgery or not

[Guest guest]

You are exactly right Deb.  I too am just expressing my opinion and I am not

wishing to upset anyone.

I too have had no help from the surgery and I have not had 25 years of

symptoms, either.  Now I am continuing my fight so that I might find some

medium ground to stand on.  

I am very positive and I am very happy that some people including Chip have

had great results.  Chip, I had my surgery in 2001, so what does that tell

you?  Do we have to debate who's DR was better or what our attitudes are

like?  

I would hope not.  We are all trying.  We are all dealing with whatever

situation we have.  We should not be judging someone's struggles against

another's struggles.  There are too many contributing factors to everyone's

health situation.

Again I have not meant to upset anyone and I am not picking on Chip...  

Thanks be to God for all of us!  

in Oklahoma

[Guest guest]

Hi gang!

Just had to respond once again to this subject.I

have been posting about return of symptoms since I

joined this group.

I am now at a phase of recovery where I am assuming

responsibility for what's mine.

With the help of a wonderful nuerologist I am seeing

doctors for the condition that ails me.He tells me

what is not his.Like the scoliosis.That's

muskoskeletal not nuerologic.

What I guess I'm trying to say is ACM is not

responsible for all my post surgery problems.I want to

feel as good as I can.I take medication.It helps.

I have also taken a hard look at myself and my

lifestyle before I ever knew I had ACM/Syrinx.Up until

1995 I drank and drugged.By the grace of God I have

been clean and sober almost 5 yrs.

I go to all the websites Kathleen and post.I

saw on one where my claw toe deformity is nuerologic

in nature but can be caused by alcoholism.

On my surgery report it states I had a previous

skull fracture.I didn't know.I had taken alot of

physical abuse from childhood on up.

I broke my legs 6 times.Yea I can blame ACM for poor

balance or I can get honest and say I was 3 sheets to

the wind each time.

ACM is a puzzle that I am sorting out.ACM did not

give me scoliosis.So I guess what I'm saying is in my

case there are other factors combined with the

ACM/syrinx that coz me to hurt.

I am also 43 and have arthritis which is

hereditary.I will never regret the surgery when the

surgeon went in he found that my c-1 was not

completely formed.It was hook like and that's what was

holding me together.

He told me after surgery he had never seen that

before.It could have let loose at any time which could

have caused death.I had alot of medical personnel drop

by my room to see the miracle patient.

Yes by the Grace of God I am a miracle in

progress!Oh and of course you guys help alot too!I

love this group.You guys keep it real for me!

(((((Big hugs)))))

Lee

__________________________________________________

[Guest guest]

Deb...Hey, you have your right to vent...and this is certainly the right

place to do so. People here DO understand.

> I guess I am not in the vast majority.and I don't agree with a lot of

those

> abstracts and studies.

I do think that maybe you should clarify that statement, however. You don't

agree with them, as they relate to you might be more accurate. I don't think

that you mean to say you are questioning the accuracy of the studies. Do

you????

>

> Most of them that I can find are not studies of people who have had all

the

> listed symptoms and more for twenty + years.

Actually, this might be pretty difficult to evaluate. What exactly

constitutes a " chiari symptom " ??? I am suyre that I had what could be

considered symptoms years before I had surgery, but really wasn't aware of

them as such...

>

> I don't believe in giving people false hope, the let down is to

devastating

> when the surgery doesn't help.

On the other hand....there have been many people who have had real

reversals. I personally went from having multiple grand mal seizure @

day....excruciating headaches....etc.etc. ...to leading an essentially

normal life...11 years later.

>

> I had the surgery and I now am up to eight different pills a day just to

get

> through another day.

Do you have accompanying problems such as syrinx/stenosis? Have these been

ruled out????

>

> I am fighting this thing and I am giving it my all, but this surgery

hasn't

> done any thing for me but add more pain.

Well, don't give up the fight.... I really don't understand why there has

been more pain, however, unless there are other underlying reasons. What

does your surgeon say? What is his/her experience level with ACM?

>

> I think in 8 months I should have seen some sign somewhere.

Maybe you are missing the " trees for the forest " <g> Perhaps some of the

lesser improvements have been missed while you were dealing with other

problems.

I also believe that you still have much more time n which to see

improvements. I would also hope that you haven't tried to return to a

" normal " activity level too quickly...this alone can cause pretty

significant setbacks!!! There is a lot of healing that is required....My nsg

gets a little crazy when people have a major surgery and expect immediate

relief...especially with long standing problems...it's not like dropping a

car off for work and picking it up the next day... <g>

Hang in there....Wwe are all with you in this and hoping that you see the

desired improvements....

We are ALL WITH YOU IN THIS THING

Best wishes,

Sally R...ACM..Decompression '91..Hydro ..

VP shunt.... 2 revisions...NO medications... doing well in

Bethlehem,Pa

>

[Guest guest]

My neurosurgeon (a biggie) said that the progression would be halted,

and that I'd also get back some lost function. He said there was no

way to tell how much, but that the surgery would definitely help me a

lot. He also said I'd never be 'perfect'. This gave me a pretty

realistic scenario, and is right on the nose what happened. After

surgery he also said the rest was up to me to recover, and also to

stay out of harm's way.

He gave me positive support and encouragement for the surgery, while

providing a realistic picture at the same time. Not an easy line to

walk.

Barbara in Fla

>

> > Back in 1990 I had a neurosurgeon tell me that if you have the

> surgery for the Chairi you can only hope to stop the progression of

> the symptoms. As the years have gone by, I am finding that he is

> right.

>

>

> Strange- I've found this is totally untrue and there are many

> published abstracts and studies that show how the vast majority of

> chiari patients who have surgery experince a great deal of relief

> from their symptoms. Not a single published study shows that a mere

> halt of progression of the condition is a common result.

>

> Perhaps it's time to join the rest of us into the year 2001 ?

[Guest guest]

> I too have had no help from the surgery and I have not had 25 years

of symptoms, either.   Chip, I had my surgery in 2001, so what does

that tell you?  

It tells me that it's too early for you to adopt the attitude that

you've had no help from the surgery. You're not even done healing

yet There is much truth to the saying " The body achieves what the

mind believes "

Chip

[Guest guest]

I will add my two cents worth on this discussion. We all have different daily

battles, some including more than chiari.

I have had symptoms all of my life. I couldn't stand up, believe me I was, and

still am a klutz. Headaches, tinitis nausea.... The doctors were never able to

figure out what was going on, and didn't link them all together.

It wasn't until I was 34 that I found out about chiari. I had the decompression

within the week, for fear of paralysis. My surgeon said the sooner the safer.

One month later, the hydrocephalus kicked in and I had a VA shunt. I was left

with 24/7 headaches, and multiple medications for " migraines " .

After an injury in 1997, the headaches became untreatable. The pain made me have

thoughts of ending my life. I knew I couldn't live like I was any longer.

Instead of giving in, I started looking for answers. I demanded a second opinion

with Dr. Milhorat.

So, I was then up to ACM I, Hydrocephalus, and a small posterior fossa, with a

retroflexed odontoid.

I had surgery for the small posterior fossa, and lived great for approx. 6

months, then back downhill I went. :-(

After another visit with Dr. Milhorat, we determined that a slight whiplash that

I had was enough to cause the cranial settling to kick in. My odontoid is

tilted enough it was causing problems. He did a craniocervical fusion for me in

1999. Again, I felt well for about six months.

Symptoms started to return, tests showed my 11 year old VA shunt wasn't working,

so I had a shunt revision. Unfortunately, the peritoneal aspect came out a

couple of months later, which required more surgery.

The last surgery was this past January. I have been able to get off the majority

of my meds, (Vioxx, Midrin, Diamox, Effexor, Amytriptoline, and basically all

pain meds). I take Ambien to help me sleep, and Zantac for reflux. My headaches

are mild enough that Advil works for most of them.

I still have some symptoms that come out to play. I am not symptom free, but

they are livable at this point.

Chiari is a very complex disorder. From those that have a normal posterior fossa

volume, to not, some with hydrocephalus or syringomyelia, basilar impression,

stenosis, scoliosis, spina bifida and I am sure I have left some other related

illnesses out.'

Unless every aspect is checked, diagnosed, and treated if need be, there isn't

success. Or, the success is so small it is hard to see it.

I admire each and everyone here that puts up with symptoms every day of their

life. Keep the positive feelings going for hope in the future.

Keep up that daily fight, and know that you are doing everything you can to help

yourself be whole.

Kathleen

[Guest guest]

I will add my two cents worth on this discussion. We all have different daily

battles, some including more than chiari.

I have had symptoms all of my life. I couldn't stand up, believe me I was, and

still am a klutz. Headaches, tinitis nausea.... The doctors were never able to

figure out what was going on, and didn't link them all together.

It wasn't until I was 34 that I found out about chiari. I had the decompression

within the week, for fear of paralysis. My surgeon said the sooner the safer.

One month later, the hydrocephalus kicked in and I had a VA shunt. I was left

with 24/7 headaches, and multiple medications for " migraines " .

After an injury in 1997, the headaches became untreatable. The pain made me have

thoughts of ending my life. I knew I couldn't live like I was any longer.

Instead of giving in, I started looking for answers. I demanded a second opinion

with Dr. Milhorat.

So, I was then up to ACM I, Hydrocephalus, and a small posterior fossa, with a

retroflexed odontoid.

I had surgery for the small posterior fossa, and lived great for approx. 6

months, then back downhill I went. :-(

After another visit with Dr. Milhorat, we determined that a slight whiplash that

I had was enough to cause the cranial settling to kick in. My odontoid is

tilted enough it was causing problems. He did a craniocervical fusion for me in

1999. Again, I felt well for about six months.

Symptoms started to return, tests showed my 11 year old VA shunt wasn't working,

so I had a shunt revision. Unfortunately, the peritoneal aspect came out a

couple of months later, which required more surgery.

The last surgery was this past January. I have been able to get off the majority

of my meds, (Vioxx, Midrin, Diamox, Effexor, Amytriptoline, and basically all

pain meds). I take Ambien to help me sleep, and Zantac for reflux. My headaches

are mild enough that Advil works for most of them.

I still have some symptoms that come out to play. I am not symptom free, but

they are livable at this point.

Chiari is a very complex disorder. From those that have a normal posterior fossa

volume, to not, some with hydrocephalus or syringomyelia, basilar impression,

stenosis, scholiasts, spina bifida and I am sure I have left some other related

illnesses out.'

Unless every aspect is checked, diagnosed, and treated if need be, there isn't

success. Or, the success is so small it is hard to see it.

I admire each and everyone here that puts up with symptoms every day of their

life. Keep the positive feelings going for hope in the future.

Keep up that daily fight, and know that you are doing everything you can to help

yourself be whole.

Kathleen

[Guest guest]

It tells me that it's too early for you to adopt the attitude that you've

had no help from the surgery. You're not even done healing yet There is

much truth to the saying " The body achieves what the mind believes " Chip

Chip and All,

This is soooo true !!! I can truthfully say that even 2 years post

op (decompression surgery Aug. 20 1999) I am still seeing improvements in

symptoms.....some of them have drastically improved since just last

summer!! Last summer I wasn't really able to go out of the house at all...I

was using a cane and a wheelchair was ordered. My balance has dramatically

improved and the strength in my legs has improved in this last year. I use

NO cane now and cancelled the wheelchair order.

Last summer I would faint/pass out ALL the time when going out in the

heat and humidity...I've been out almost everyday this summer (and I have

the tan to prove it!!) not sure what happened that made this improvement

but I'm not going to complain !!!

My peripheral vision is slowly returning and the " black out " episodes

are fewer than last year.....I drove for the first time in 3 years this

summer..now I need to keep it going or I'll chicken out because apparently

I've aquired a " phobia " of driving since I've not driven in so long, but

Robin (who I consider a great friend) Has encouraged me to " keep on

trying " so I can overcome this!!

Many other things have improved over this last year...including my

outlook on life and happiness in where I'm at at the present time. I think

those two things alone have allowed me to work hard (and believe me I've

worked my butt off!!) at achieving my goals regaurding my health...I'm now

going on daily walks (Even if it is just down the street and back or around

the apt. building)..I could not even walk 100 feet last year without

falling over!!

I've been doing some rather odd things to achieve alot of

this..(using sensory integration techniques suggested for autism spectrum

type disorders because this too involves the cerabellum which my son has

also)for instance for my overall imbalance/dizzyness and visual dizzyness

and nauseousness (looking at moving objects would cause me nauseousness and

vomiting during car rides,looking at credits rolling at the end of movies,

watching waves in the water etc.)

I've been swinging on the swings with my son everyday...not sure what

has happened physically to improve my balance and vomiting etc (can't

explain it??!!)....but it has!! The first week I started swinging, I threw

up a few times and was quite nauseous most the time....now I have

significantly less nauseousness (almost none!!) and haven't had a " throwing

up " episode all summer from looking at moving objects, riding in the car

etc.!! (I do still have vomiting with increased pressure though)

I guess my son " naturally " knew what his body needed to balance out

himself....he has been an avid " swinger " and " spinner " (spinning in

circles) since the day he could walk. He says it helps him " focus " ....I

took his lead (found out that they use these techniques for sensory

integration probs)and found out it really works !!

Anyway......to make a Looong story short...don't give up yet!!!

Things CAN improve even 2 years after surgery if you have a great attitude

(the most important factor...I believe!! " and work hard AND research ways

to improve your health (even though some " techniques " may sound " off the

wall " !! as long as they are not harmfull to you)

And remember EVERYONE is different, you cannot compare yourself to

everyone else.... People improve/heal at different rates, many different

factors are involved : attitude, how many symptoms, how long you've had

symptoms, other illness/disorders that are present with Chiari,

complications after surgery, healing rate for YOUR body etc.

I'm not perfect by far (who really is??), I have many congenital

defects/disorders which cannot be fixed and possibly one more surgery to

add support to the back of my skull (which is what the " sponge " does from

Dr. .....it is focusing on your attitude, improving your spiritual life,

if that is your thing (God has played a BIG part in mine) and what you can

do with what you have at the present time....not focusing in on what you

cannot do or do not have.....if you do..your missing out on alot of good

things in life!!

((((hugs)))) Sam

ACM 1- decompressed 8/20/99

Klippel Feil Syndrome

Sacral Tarlov cyst (form of spina bifida occulta)

congenital brain tumors

thorasic outlett syndrome (from extra cervical ribs on both sides)

Aspergers Autism

and a bunch of other usless junk

[Guest guest]

I have the same opinion to Chips remarks. With that remark He needs to be a

poet.

There is nothing wrong with my attitude, and what I go through everyday is

not in my head.

I would trade places with you any day Chip and we would see how optimistic

and posoitive you would be.

I bet you wouldn't come up with those kind of remarks all the time.

Deb

Posteria fossa decompression w/C-1lam.. 12-29-2000,

Anterior Cervical Corpectomy w/strut graft fusion & harms cage w/plate & screws.

3-21-2000.

Demylinating Polyneuropathy w/ mononeuritis multiplex pattern in lower

extremities.

Spinal stenosis.

Carpal tunnel syndrome (cts surgery 1989)to no avail.

Ulnar nerve compression

[Guest guest]

Hope everyone is well and in good spirits. I have just been watching(as

always) all the interesting opinions on surgery. I am at that door now.

My Neurosurgeon is strongly recommending surgery for me NOW.

He has been very straight with me by letting me know there are no

guarantees. However he said its a good chance my quality of life maybe a

little better. He is confident about the surgery in the sense that it is

very safe and simple. So he say's.

So am just listening to everyone share their stories about before and

after. I just can't decide 100% to just do it now. Not to mention I am

scared senseless. You keep talking and I'll keep listening.

I don't know what am hoping to hear to push me in either direction. Just

torn right now. I am not even getting restful sleep any more.

in the Palmetto

trying to decide on surgery or not

7-8mm

[Guest guest]

I have had 2 different doctors who are familiar with chiari tell me that it

can take 1-2 YEARS for our brains to regenerate new nerves. We can

expect to look for improvements/changes for that long.

I was doing so much better until I had a rupture in my dura patch and got

a small leak.

Everything has gone downhill since then. I am scheduled to have a 2nd

surgery in December to repair the leak and resection the tonsils. I had

said that I would NEVER have surgery agian, but that was before all my

symptoms returned and my quality of life got so bad. Now I remember

why I had surgery in the first place.

The decision to have surgery is a personal one and the experiences of

others are to be used only as 'what may happen' incidents. We all react

differently because ACM is so complicated. But I am tired of not ever

feeling good and being unable to take part in so many activities, so

I am willing to go through the temporary results of a 2nd surgery in hopes

of finding long term relief.

Just being able to go to the grocery store alone would be treat for me.

Most of all I want to feel good again and have the energy to enjoy my

precious grandchildren.

Just my 2 cents worth,

Cherry

> I was understand the impression that healing takes about 6 months. I do

> understand that it can take longer; but, I would assume that if the signs

of

> healing aren't there by 6 months then you might as well forget it.