First neurologist appointment, and already recommending surgery!?

General
1

Okay guys, Opinions are NEEDED PLEASE.

Ive know about my chiari for about 6 years. It was never a problem until 2 years ago and I started having issues on and off ( neck pain, ringing in the ears, numbness in mt left arm, and leg. problems finding words.. and of course the HEADACHE)

I was always told from different doctors ( PCP, neurologist, physiatrist) it was not chiari related, and they always had a different diagnosis. Until today.

I finally was sent to a NS, and he pretty much came into the room all ready to talk to me about surgery.

He went over how the cerebral tonsils were crowded. and what we have to do about it. If I do nothing, its only going to get worse..

I guess im so skeptical because of being told for years that it was never a problem ( it was considered "borderline" chiari at 6 mm, with no syrnix or any other problems)

Ive been waiting on this answer.. and now, im flat out scared. Should I get a second opinion? how bad is surgery?

The NS i saw today, said he does about 30 a year, and its a lot more common than what most people think.. pretty easy surgery, with little recovery time. two days in hospital and 2 to 3 weeks rest.

My brain is over loaded, I dont know what to think. I just want my life back!

Any feed back is MUCH appreciated. :)

( why do our brains have to be so BIG!)

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Because we are just too smart. Lol my husband says its because I read too much.

3

And your doctor is wrong about recovery time. Sounds like a very optimistic man lol.

I know it depends on where you live, but my best advice is to get the surgeon who has the most experience with Chiari . 30 a year isn’t very many. He may be a great doctor, but that isn’t tons of experience imo. Where do you live?

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I hope my last post didnt come across as negative. This is just really major surgery, this is when you really want the best of the best. He very well may be that, just my two cents

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If you click on my name, i think my posts will be listed. I wrote a post not long ago detailing my surgery experience, if that helps :slight_smile:

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Wendy, I highly appreciate your opinion! Its exactly what I was looking for actually :)

Im luckily in MD so I can easily go to John Hopkins for a second opinion. I know they have a NS that is recommended for chiari on here.

Ive been doing my reading on chiari, and it really took me off guard at how ready he was to do surgery, before I really even got to say anything on my issues. I know he had my records and all because I was sent to him from another doctor in the practice. and he had all of my MRIs to view before he came in the room. But he made it all seem so simple.. and im no NS or anything, but its kinda my skull hes talking about removing, and although its causing me a great deal of pain lately, im not ready to just jump into getting it cut apart. I need to know what to expect, I work full time, married and have to young boys. I need to know if im going to be laid up for awhile.

ya know, that crazy little thing we call life, it's kinda important when it comes to these decisions ;)

maybe I should quit reading so much too, and maybe my brain will shrink on its own. LOL

I'll check your posts out on surgery. THANKS! :)

Wendy said:

If you click on my name, i think my posts will be listed. I wrote a post not long ago detailing my surgery experience, if that helps :)
7

Excellent, you have access to some of the best NS and one of the best hospitals.

It is a big deal and while odds are that he is right and surgery is a good option for you, you need to really be sure you are comfortable with your NS and your decision. And you are right, he will be cutting open your skull and exposing your brain. This 'ain't no' root canal, lol.

You are going to find that NSs are a strange breed and not fazed easily. They were the ones paying attention back in high school when we were passing notes lol. And in their neurosurgery world, this IS a relatively simple procedure. So they talk about it like deciding between the roast beef or turkey club. But this will hopefully be the most major surgery you will ever face, so it's important to gather all the info you can ahead of time so you feel you are making the right decision for you and your family.

If you have any questions or just want support, let me know!

~Wendy

Tabykat13 said:

Wendy, I highly appreciate your opinion! Its exactly what I was looking for actually :)

Im luckily in MD so I can easily go to John Hopkins for a second opinion. I know they have a NS that is recommended for chiari on here.

Ive been doing my reading on chiari, and it really took me off guard at how ready he was to do surgery, before I really even got to say anything on my issues. I know he had my records and all because I was sent to him from another doctor in the practice. and he had all of my MRIs to view before he came in the room. But he made it all seem so simple.. and im no NS or anything, but its kinda my skull hes talking about removing, and although its causing me a great deal of pain lately, im not ready to just jump into getting it cut apart. I need to know what to expect, I work full time, married and have to young boys. I need to know if im going to be laid up for awhile.

ya know, that crazy little thing we call life, it's kinda important when it comes to these decisions ;)

maybe I should quit reading so much too, and maybe my brain will shrink on its own. LOL

I'll check your posts out on surgery. THANKS! :)

Wendy said:

If you click on my name, i think my posts will be listed. I wrote a post not long ago detailing my surgery experience, if that helps :)
8

I wanted to add another thing.

Because Chiari is a structural issue, surgery is really the only treatment per say. Medication can help deal with the issues, but they will not resolve anything that is caused by a herniation.

You have three choices, you can live with the problems and hope they don't get worse. You can take medications and/or try alternative medicine to alleviate symptoms. Or you can have surgery.

So, it makes sense that a neurosurgeon is going to be on the side of having surgery if you seem like a candidate that would have a high chance of good outcome and low risk for complications.

9

i know the feeling i just want my life back too,i am going to have the surgery on feb. 27th and i am scared to death, but hopefully it will go well and i will be better