wamca: Reasons for Post-op Problems

[Guest guest]

In a message dated 08/07/2000 9:05:29 AM Eastern Daylight Time,

DizzyInSC98@... writes:

<< Sandy writes: > Thanks everyone for the input on the surgery and

herniation.

I have >another question-For those of you that feel the surgery didn't work

well, what >reasons have you been given from your Dr.s as to why you are

having symptoms >after a " successful " surgery? Hugs Sandy

writes:

<<Would you please reply to the list. I am interested in this also. >>

Wasn't going to respond to this cause has lots of other contributing

factors.

But thought I would as some of the things she experiences, others do also.

In 's case - she has hydrocephalus (VP shunt) which she had before all

this Chiari stuff started acting up. Also, her entire skull is too small, not

just the posterior fossa. Don't know the medical word for this, but the back

side of her head is not symetrical, so that in itself is enough reason for

things to be squished in there. She also has basilar impression.

These are different types of things that can possibly keep one from being

adequetely decompressed after a " successful " decompression.

Eurico mentioned:

<< ....decompression/laminectomies at the foramen magnum a

workaround " fix " rather than addressing the true root of the problem - which

could explain why some people have recurring symptoms some time post-op. >>

My own opinion leads me to believe, that at some point in the future, " they "

will find this to be true in many cases.

Tory ('s mom)

18ys. old, craniofacial abnormalities, midline facial cleft, hydrocephalus,

growth hormone (weighs 53lbs.) and thyroid deficient, blind, severly delayed,

choanial atresia, optic nerve hypoplasia, artificial tear duct, 12-P

chromosome deletion, sensory integration disorder, latex allergy, probable

malignant hyperthermia, ACM II w/30mm herniation, basilar impression. June10,

98' suboccipital craniectomy and lamenectomy of C1 & C2. Aug. 10, 98' dura

graft. History of 39 surgeries. (and musically talented) SUCH A SPECIAL

LITTLE GIRL!

----------> <A HREF= " http://www.pressenter.com/~chip/heather.htm " ></A>

[Guest guest]

Thanks everyone for the input on the surgery and herniation. I have

another question-For those of you that feel the surgery didn't work

well, what reasons have you been given from your Dr.s as to why you

are having symptoms after a " successful " surgery? Hugs Sandy

[Guest guest]

> Sandy writes: > Thanks everyone for the input on the surgery and herniation.

> I have >another question-For those of you that feel the surgery didn't work

> well, what >reasons have you been given from your Dr.s as to why you are

> having symptoms >after a " successful " surgery?

I was told that my 24/7 headaches were migraine in nature. I was told that for

7-8 years until I said " I don't think so, I want another opinion " .

Never doubt what your body is telling you. If you feel that symptoms are still

related to chiari, but are being told otherwise, act on your intuition.

Kathleen

ACM I

[Guest guest]

Sandy,

My nsg has no idea why my symptoms have returned. He recently told me my

surgery could of been a placebo affect and some of my other problems may be

due to psychological problems. Go figure!

Chalk it up to yet another " 's psychotic episode " !!!!

Love,

G in Idaho

12/99 decomp

1/00 repair csf leak & staph

2/00 all symptoms returned

Would never know I had surgery if it weren't for the scar & bad hair cut!!!

wamca: Reasons for Post-op Problems

> Thanks everyone for the input on the surgery and herniation. I have

> another question-For those of you that feel the surgery didn't work

> well, what reasons have you been given from your Dr.s as to why you

> are having symptoms after a " successful " surgery? Hugs Sandy

>

>

>

> Help section: /help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> Unsubscribe Yourself: chiari-unsubscribeegroups

>

> WACMA Home: www.pressenter.com/~wacma

>

> WACMA List: www.eGroups.com/group/chiari

>

>

>

[Guest guest]

I am guessing that it feels as though surgery was not successful because you

are still in pain. Is that accurate?

I ask because our daughter continued to have headaches - at some times worse

- that prior to surgery. The surgeon kept telling us she was " anatomically

correct " . Which meant they had surgically done a good job - Thank you, thank

you - I truly will never be able to be grateful enough for their skill. It

still left us with this young lady who felt terrible.

At that point - about 1 year post op - she found great relief and we were

encouraged to hear that her post-op pain was due to lack of rehab

postoperatively. The muscles at the back of the neck had been retracted for

six hours during surgery. They were then laid back onto the skull and she

was sewn up and a few days later we were sent home. What would have been

much more helpful - and we did 1 yr. later - was to have follow-up physical

therapy, massotherapy - and we also did acupuncture.

We were told the muscles were so traumatized there was very restricted blood

flow going through them and up into her head. We were also told that when

the muscles have been retracted like that - they need to be able to be healed

and strengthened in order to be able to do their job - namely holding up your

head. Your head is extremely heavy - those muscles work very hard.

She is now pain free and doing extremely well. I hope this is helpful info.

Truly,

[Guest guest]

,

Your sign-off says:

> 12/99 decomp

(> 1/00 repair csf leak & staph)

> 2/00 all symptoms returned

Maybe the nsg doesn't want to accept that in part, your non-

resolution of symptoms could have been due to the above...it is so

much easier to blame it on the patient!

There are many that had similar after-surgery problems.... just

wondering if there is a connection.

...did the staph infection totally clear up...did you get any aqua PT,

massotherapy or ultrasound muscle therapy, did he recommend any help

in this area? Sometimes the body needs " help " to heal properly.

Sorry, your problems are still there, did you also have stenosis?

Dori

> Sandy,

> My nsg has no idea why my symptoms have returned. He recently told

me my

> surgery could of been a placebo affect and some of my other

problems may be

> due to psychological problems. Go figure!

>

> Chalk it up to yet another " 's psychotic episode " !!!!

>

> Love,

> G in Idaho

> 12/99 decomp

> 1/00 repair csf leak & staph

> 2/00 all symptoms returned

> Would never know I had surgery if it weren't for the scar & bad

hair cut!!!

>

> wamca: Reasons for Post-op Problems

>

>

> > Thanks everyone for the input on the surgery and herniation. I

have

> > another question-For those of you that feel the surgery didn't

work

> > well, what reasons have you been given from your Dr.s as to why

you

> > are having symptoms after a " successful " surgery? Hugs Sandy

> >

> >

> >

> > Help section: /help/

> >

> > NOTE: NCC refers to posts with No Chiari Content

> >

> > Unsubscribe Yourself: chiari-unsubscribeegroups

> >

> > WACMA Home: www.pressenter.com/~wacma

> >

> > WACMA List: www.eGroups.com/group/chiari

> >

> >

> >