whether to have surgery or not

[Guest guest]

I think this question comes up all the time here. It is very valid,

but also a very personal one you need to ask yourself.

We have all had our symtoms come and go. Myself they would go away

for so long that I thought there really was nothing wrong. All that

changed last year when I fell. After the fall they never went away. I

just had days when I did not feel as bad as others. There were no

more good days. After I was diagnosed with TC the decision for

surgery for me was easy. I still had the little voice in my head

asking if I was making the right choice. When I was in the hospital

and had a CSF leak and was really sick, I really questioned myself.

Now, 5 weeks later, I am so happy that I did it.

Dr B told my dh that if I had waited 6 months or a year longer, than

I really would have been in bad shape. That for me was scary. My body

really made the choice for me. I just could not take feeling like

crap any longer.

None of us here can make this choice for you. We can tell you about

our stories and how things turned out for us, then you have to decide

for yourself. If you are not sure, then wait. If you are feeling

well, then I don't see why you can't wait. If there are no more good

days, well then........

Good luck! and Good health!

Wendi in PA

CM

TCS 1/3/08

[Guest guest]

can anyone please tell me what made them decide to have surgery?

I know that they say, you will know when you are ready. I thought that I

was ready a month ago, but now my symptoms aren't so bad...

what there a time when you were like I am now with the symptoms back and

forth??

makes me question myself....

Kathleen's response:

When I was diagnosed in 1990 I was told I couldn't live without the surgery,

I had it the week I was diagnosed. I did go for a second opinion with a

neurologist and they said the same thing. They had to give me valium to get

me through the hospital doors.

My second surgery for hydrocephalus I didn't have much of a choice either. I

went to the hospital in extreme pain, nausea.... They didn't let me go home,

they did surgery on a Sunday.

I was pronounced healed and released from neurosurgical care at that time.

It wasn't until 1997 that I couldn't take it anymore and I insisted on a

second opinion and was referred to Dr. Milhorat. He offered answers and

solutions to my problems and I was so thankful and ready for surgery once

again I didn't hesitate.

When symptoms do fluctuate, it makes you wonder why you would have surgery.

I've been fortunate, if you could call it that, to have quite a bit of pain

when ever I have to have surgery.

Have trust in your doctor, and know that you are doing the right thing. TCI

will leave surgery up to the patient, I've known each time that I am ready.

It's taken some soul searching for a couple of the surgeries, asking myself

if I can do it again, but my faith has always pulled me through. My husband

taking me to the hospital helps

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Syndrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

[Guest guest]

Dear Friends,

I am possibly someone who would maybe benefit from one of the eye

operations to improve vision that so many people are having lately.

But, I would not dare have that done unless I really, really had no

other choice. I am sure that with the right surgeon, it is safe and

very helpful but it is just not for me.

In contrast, for the Chiari surgery, I was pleading for help. I had

lived for so long with the pounding in my ear and hope was just

elusive for so, so, so long. Finally, I was so happy that someone

would decompress me the first time that I hoped for the best and went

to the hospital praying for relief. When that first surgery failed,

I just prayed to find another doctor who could help me. I knew there

was no other alternative at all for me. I really had no sort of life

at all. I just spent every day with my ear throbbing and listening to

water roaring in my ear.

When I met Dr. Milhorat and Dr. Bolognese, I really had no fear at

all about the decompression revision. I knew I needed it and had

waited so long for their visit that I was very relieved when they

said they could help me. I do not know what I would have done without

them. The shunt scared me though and I asked not to have it but after

a while, I knew that whatever they suggested was the right course for

me.

Now, if the shunt fails and they need to change something, I honestly

do not think much about it. For me, it is better to just do what has

to be done.

When I was diagnosed with endo, I saw a few doctors and there was

confusion. But, the momemt I met the surgeon who would be the one to

operate, I knew it instantly. As he spoke to me, I saw we were on the

same wavelength with what to do and I just felt a sudden calmness. I

did not have to think about it anymore. When I needed that sugery

again, I saw his associate and had the same sense of calmness toward

her.

I still am nervous outside the operating room doors and I still shake

until they put me to sleep, but I know I am with the right doctors

and that I am doing the right things.

With some procedures, you cannot dwell on it for too long. If you

have trust and faith in the surgeon, you have to go by that. You can

usually tell when it is right.

Dana