? Removal of Cerebellum Tonsils

[Guest guest]

Question

Is the anyone that has had the Cerebellum Tonsils removed at the decompression

surgery?

It has been suggested to me as an option and I wanted to find out if this was

beneficial in their recovery and if they have noted any deficits long term.

Lurena

[Guest guest]

Hi,

Not yet, but my daughter will be having this done. They will cauterize and

amputate both of the tonsils. I don't think this is common, but because of how

impacted hers are, they feel doing this is the best way to decompress her

brainstem. This way there won't be anything left to cause problems. I was told

that this has been researched for many, many years, and they have not found any

functional purpose for cerebellar tonsils. Kinda like the appendix. I don't

think God would have made us with extra parts, but at least removing them

doesn't seem to cause a problem.

Beth, mom to Ari (12, ACM 22mm, EDS, RO, BI, scoliosis, spondylolisthesis,

scoliosis, Spina Bifida Occulta, and possible TC)

Sent from my iPhone

> Question

> Is the anyone that has had the Cerebellum Tonsils removed at the decompression

surgery?

> It has been suggested to me as an option and I wanted to find out if this was

beneficial in their recovery and if they have noted any deficits long term.

> Lurena

>

>

[Guest guest]

Lurena- I have had a portion of my " tonsils " removed and my hole made bigger as

my second surgery!

It's been a while and I'm just glad it's done and over! I was so sick back

then!

It's a long recovery, but well worth it!

So yes, someone has gone through it and done very well!

If I remember Dr.B said to do nothing but very little for six months! But

trust me she won't want to, and a motorized scooter for mall shopping or dog

walking works great!

But the brain needs time to heal and other areas to compensate! I do remember

having some memory lose but once I saw a picture or someone told me a story, I

would quickly remember!

But I did cry a couple of times when I could not remember people who would come

up to me and ask how I was doing, when I got home. Time heals all!

But with in time her new normal will be one without much pain and a better

quality of life! :-). Every case is different, and therapy is very important

afterwards! Write any time! When is her surgery?

Bea

Sent from my Verizon Wireless BlackBerry

Re: ? Removal of Cerebellum Tonsils

Hi,

Not yet, but my daughter will be having this done. They will cauterize and

amputate both of the tonsils. I don't think this is common, but because of how

impacted hers are, they feel doing this is the best way to decompress her

brainstem. This way there won't be anything left to cause problems. I was told

that this has been researched for many, many years, and they have not found any

functional purpose for cerebellar tonsils. Kinda like the appendix. I don't

think God would have made us with extra parts, but at least removing them

doesn't seem to cause a problem.

Beth, mom to Ari (12, ACM 22mm, EDS, RO, BI, scoliosis, spondylolisthesis,

scoliosis, Spina Bifida Occulta, and possible TC)

Sent from my iPhone

> Question

> Is the anyone that has had the Cerebellum Tonsils removed at the decompression

surgery?

> It has been suggested to me as an option and I wanted to find out if this was

beneficial in their recovery and if they have noted any deficits long term.

> Lurena

>

>

[Guest guest]

In my decompression, they described it as cutting each tonsil and taking out the

middle so they would " shrink " up to where they should be. I know there are a

couple different ways to do it but that's how my surgeon did it. My dad asked

the doctor if there would be any long term affects from having this portion of

the brain removed and this was the answer we got. " God put every thing in our

body for a purpose, but we have not figured out the purpose of the cerebellar

tonsils yet. So, we have not seen any negative affects of removing it either.

Though I am sure they do have a purpose. " I am about 98% back to normal since

surgery and wouldn't change anything! Hope this helps a little. Blessings,

Cortney