life with chiari/sm

[Guest guest]

Hello friends,

Because we have so many newer members, I wanted to express my concerns and

best wishes.

I was diagnosed in 1996 with Chiari 10mm herniation. The length of the

herniation is not always the biggest concern. It can be a very mild/small

herniation and cause symptoms. The herniation can be small yet, it can grow

wider in diameter and, can actually block the regular flow of spinal fluid. This

is when symptoms will present.

When my GP told me I had Chiari, he failed to say anything about my having

syringomyelia also. This is because he had no clue about either one of these

illnesses. He told me I have a little birth defect in my neck causing the

headaches, and, the other things I was experiencing.

I was very lucky to find Dr Oro only 5-6 hours from my home. He advised surgery

the first time I saw him, but, I was too afraid. I knew that both Chiari and a

syrinx were progressive, yet, I felt if I was just very careful and took it

really easy, I would not continue to progress. Dr Oro asked me to find a

neurologist at home who could monitor me for any progression. I had agreed to

have the surgery if there was any sign of progression or any negative changes. I

found a neurologist who assured me he was capable of watching everything. He

failed to do that for me and,because te pain became so bad, I knew I had to be

getting worse so I went again to Dr Oro. I took along the same MRIs that the

local doctor had been viewing. Dr Oro was very shocked at how much I had

progressed in the year and a half when I was being monitored by the local guy.

We scheduled my surgery.

The surgery was a success, however, because of the progression the syrinx had

become very large, so much larger, I now have permanent damage to my cervical

spine.

Now, after surgery, the headaches are much better and, the numbness I had in my

feet isn't as intense but, I still have pain always.

Would I have the surgery, if I had it all to do over? You Bet I Would! What I

would do differently is to have it as soon as I could, before the syringomyelia/

syrinx had time to cause this damage.

If you have the chance to have the decompression, please don't wait too long to

have the progress halted by the decompression surgery. The most important thing

I can offer is this: Please be certain you have a capable surgeon, and, please

don't rush into surgery with just any surgeon.

Make certain he has a lot of experience with this surgery because if the wrong

doctor does the surgery, it can cause your illness to become even worse. This is

a sad fact but, many doctors may tell you they are quite capable when they are

not. This happened to my son and, he just recently had to go through a fouth

surgery.

You must really do your research and, you may need to travel. This is a

serious illness and it is all about your life and your future. I don't mean to

scare anyone, I only want to inform because it is so very important to have your

own knowledge about what has happened to you.

There is a wealth of information on-line. Please don't let any docor discourage

you from getting online and searching for the info you need.

God Bless,

Judy Marie

I just realized that someone received this message twice. I am so sorry...I hit

the wrong button!

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