Re: [CCIparents] Please Help

[Guest guest]

Dear ,

I have been told by neurosurgeons that as a decompressed child's brain and

skull grows, the decompressed area may appear to become smaller in relation

to the growth. This can make another decompression necessary. That being

said, from a layman's perspective, each additional surgery become

exponentially more difficult that the last, increasing the importance of making

sure

you have the right neurosurgical team for your son's particular situation.

When my daughter had her decompression at age 9 in 1994, duraplasty in

children appeared to be standard procedure. I have noticed a shift, in that

pediatric neurosurgeons disagree. Some always do it, some decide during

surgery, and some are totally against it. There is one pediatric neurosurgeon

in

particular who was always very much against duraplasty, before others were

questioning it, and believed they caused more problems than they solved.

Getting a water tight seal can be a challenge, especially when there was a

necessary change in the type of material used for duraplasty. The material

used in my daughter's duraplasty during decompression surgery was cadaver

tissue. This is no longer used, as far as I know, because new storage rules

years ago made it cost prohibitive. Many patients had complications from

duraplasty as a result, as neurosurgeons tried different materials for

duraplasty and struggled to get a water tight seal. She later had duraplasty 2

more times in the thoracic area (it is a long story why), and freeze dried

allograft was used. She has never had a CSF leak due to her duraplasties. It

is okay to ask your neurosurgeon his experiences with it, and ask for

research articles which discuss the techniques he uses.

Has your son had a CINE MRI? That will produce a video of CSF flow, and

show if and where blockages occur. Some CM/SM experts refuse to operate

without having a CINE MRI, and question the qualifications of those who operate

without it.

Scar tissue can be a cause of diminished CSF flow. This occurred in my

daughter's case due to a thoracic subarachnoid shut in her syrinx, resulting in

additional surgeries. We received many opinions from the top CM/SM

neurosurgeons, and did a lot of research on their procedures, before settling

on

who would do what. Despite the complications she has had, we have no doubt

that each surgery was necessary due to loss of neurological functioning.

I hope this post is not too overwhelming, as there is so much to consider.

Best wishes, and please stay in touch.

Barbara

In a message dated 3/17/2011 10:58:24 P.M. Eastern Daylight Time,

sarahrkirk@... writes:

My son was diagnosed in June 2009 at the age of 5 with CM, it was 18mm in

decent, he had diminished CFS flow so the recommended surgery asap. The

surgery only consisted of removing bone (no dural patch), well his old

symptoms and new symptoms started about 6 months ago and he neuro did not think

anything of it. So his PCP and I decided to get a second opinion and he

ordered a MRI and I just got the results today, after surgery he was a 13mm

decent and now he is back at 18mm decent and his CFS flow has diminished. Has

anyone else had this issue? This new Dr. talked about doing a dural patch and

shrinking of the tonsils, now keep in mind we only saw the report not the

images so I am unsure if the bone may have grown back. I never would of

thought that we would be going through this again 2 years later. Should we do

ahead with the dural patch? We go see the Dr. Monday and I want to get as

much information and advise as I can before we see him. I really do not know

what to do when I have 2 different Dr. doing or saying different things

and I don’t want to put my son through anything he does not have to. Thanks

so much for hearing my story and if you have any advise that you think will

help I would greatly appreciate it.

Thanks,

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