Removal of cerebellar tonsils

[noahsmom2]

Hi I have a 2 year old that was diagnosed with Chiari 1 Malformation last year. He had decompression surgery in August 2011 and a dural patch was used. His most severe symptoms pre-surgery were waking up screaming in pain in the nights and drop attacks. His symptoms went away for a few months after surgery and now the headaches are back with a vengeance. We have also noticed that he falls for no apparent reason. A repeat MRI was done and the doctor has now recommended removal of the cerebellar tonsils. My question is has anyone had this done before? And if so what are the chances of the symptoms reoccurring? Any feedback in regards with this would be greatly appreciated. Thank You...

[selmaS]

  6 months is short time to expect all symptoms to be gone...it can take up to 2 yrs for someone post op to fully heal inside...

  This can be a slow process and especially for those of us with EDS we heal slower then most....

  AS we heal we may see an increase of symptoms as the nerves reconnect ...this is not uncommon and many r not prepared for this to happen...the only thing is, he should not feel worse then b4 surgery...or develop symptoms he did not have b4...

  Hope this helps

    "selma"

[Sexybare]

Not sure this will help....i am 32, had decompression in aug. 2011 also. Never felt any relief. Headaches are 10 times worse. Maybe its time for a second opinion?! I am goin to the chiari institute in colorado in april. I hope u find answers and relief for your ds. I cant imagine watchin my  boys go thru this horrible journey
Keep faith and praying and fightin. It can only get better from here. Again im so sorry your lil one must deal with this

[noahsmom2]

Thank you so much for that. God bless...

[noahsmom2]

Yes he does have bladder issues but that's under control now. No issues with walking, but he does fall for no apparent reason. He also tends to drop stuff. His surgery was done 6 months ago and because of this shouldn't the symptoms be lesser now? or completely disappeared? The new MRI also shows that the 4th ventricle is being compressed. Sorry to keep pestering you Selma, but this forum has been a wealth of information for me and my family. Thanks again and God bless...

[selmaS]

  Hi...I do know if a person has TC and it is very tight having the PFD it can make things feel worse...I do have it, but I am not as tight, but I am older and my cord was stretched over the yrs, but ur guy is so young and is still growing so it makes sense to me that the cord is tight and by doing the decompression it weakens the area from the laminectiomy and the pulling down just hurts like crazy....I was told it can be noticed in the time frame up to 6 months post op, but it can be seen in the first 6 weeks....

  Does he have ne bowel or bladder issues, tip toe walking, and or leg issues?

   "selma"

[noahsmom2]

Thank you all so much for your advice, prayers and support. I will definitely ask the question Selma. Also, why have his symptoms returned? He also goes into these fits of screaming, something he's never done pre surgery. Thanks again...

[linnielou232]

I have your dear son in my prayer's.  I just can't inmagine what you and your family is going through.  Wishing the best for you and your DS.

[irislita]

I think that nowadays they shrink the tonsils rather than remove them.there are some people here that got shrinked their tonsils and i am sure they will answer.