Opinions needed

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Opinions needed

Postby Chatham chic » Wed Jun 25, 2008 3:06 pm

OK...I think I might be missing something (other than my mind).

I'll start from the beginning, but will try to keep it brief.

My daughter is 3 years old, had some atypical seizures August of 2007, had one short EEG (results were negative) and had two MRIs. They feel the seizures were febrile.However, she has a 13mm CM with 2 syrinxes. She is scheduled for surgery August 1.

She only has some mild symptoms (headache) that we know of since she's so young.

I asked some opinions about chiropractic care and did some research and realized this was NOT the route to go.

We see a neurodevelopmental pediatrician for my son's autism and talked to him about any integrative (alternative) means of treatment (alternative treatment [dietary intervention, etc.], is what he is known for in this area) - to which he responded, NO. Surgery is the only option.
My hubby and I feel that we would be doing her a disservice if we did not seek a second opinion. However, we also feel it is a moot point since two doctors whom we trust wholeheartedly (her NSG and the ND Ped.) both say surgery is her only option.

So, am I missing something that might be able to be done for her, other than surgery?
Should we still pursue a second/third opinion?

Anything would be helpful.
Thank you.
Chatham chic
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Re: Opinions needed

Postby Janice » Wed Jun 25, 2008 3:19 pm

A second opinion with a CM/SM expert would be advisable for such a young child.

Take care and my thoughts and prayers are with you, your daughter and your family.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

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Re: Opinions needed

Postby emarismom » Thu Jun 26, 2008 6:01 am

I would try to get a second opinion before the surgery date. I do think that
in the end, surgery will be the route to go. However, it is a very big step to
take and not feel 100% that it is the "best" option for your child.

Another thing to consider is that Chiari/Syrinxes DON'T always show symptoms
until later in life in most kids. Therefore, waiting to do surgery could lead to the
development of new symptoms. Most research seems to indicate that early
surgery has better results.

My daughter had decompression at 5. Her only big symptom was scoliosis (in hindsight
there were a few others). I knew I had NO other option than the surgery, and I am
convinced that the surgery has preserved my daughter's "quality of life" in the 4 years
since her surgery. The surgery was actually a bump in the road of life with these
disorders. The surgery and recovery went by like a whirlwind and within two weeks every
thing in my life was back to "normal".
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Re: Opinions needed

Postby jen74 » Thu Jun 26, 2008 7:23 am

A second opinion by a expert is a good choice, but I don't think there is anything harmfull in seeking a therapeutic diet. Even if there is surgery, which sounds needed, enhanced nutrition will help healing. They use it for a host of illnesses, especially autism. I'm certianly not saying to rule out surgery in favor of dietary treatment but if necessary use both.You are in my thoughts. I do believe what we eat has an effect on our health. Dr's cringe at the word alternative. Use therapuetic instead and then find a great dietitician. I would not personally reccomed anything more than that, but you need to be as at ease with your child's surgery as possible. A second opinion might just give you some reassurance. which is important.
Ideopathic syringomyelia C1 to conus 10mm, Rod placement in thorasic and lumbar spine , cage placement in cervical spine, pelvic fracture and reconstruction, tailbone removal
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Re: Opinions needed

Postby Chatham chic » Mon Jul 07, 2008 10:41 pm

Thank you all for the responses to my question.

I ended up corresponding with the surgeon-in-chief at Rainbow Babies Hospital (Case Western University).
He said that with the details that I gave him, he would recommend surgery, as well, and that with CH of Pitt. we were in good hands.
He also mentioned "cerebellar fits" in kids with Chiari. After some more research I believe that is what she had that brought all of this to our attention. To me that just confirms that surgery is necessary. So, the total number of drs. to recommend surgery is now 3.

She is scheduled for a 12-hour video EEG on July 15th and decompression surgery on August 1.

Prayers would be greatly appreciated.
Thank you!
Chatham chic
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Location: Pittsburgh, PA

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