Chiari Malformation Community
Removal of cerebellar tonsils
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Removal of cerebellar tonsils

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...
Blank
620923_tn?1405964489

  Hi...yes, removal of the tonsils is something they use to do more often yrs ago..and as they have gained more insight with research only do it when they feel no other options......

My tonsils were cauterized to help shrink them....and with that they were still herniated , and that is y they do the laminectomy to make room for the CSF to flow.....as not all the tonsils will return to where they belong....


I wonder if the issue is something other then the tonsils??

Was he checked for tethered cord, this will get worse post op following the PFD depending on how tight the cord is....

   Make sure b4 u decide to move forward they checked him for all related issues.

   Praying they find answers

         "selma"
Related Discussions
9 Comments Post a Comment
Blank
1925822_tn?1333709217
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.
Blank
620923_tn?1405964489

  Hi...yes, removal of the tonsils is something they use to do more often yrs ago..and as they have gained more insight with research only do it when they feel no other options......

My tonsils were cauterized to help shrink them....and with that they were still herniated , and that is y they do the laminectomy to make room for the CSF to flow.....as not all the tonsils will return to where they belong....


I wonder if the issue is something other then the tonsils??

Was he checked for tethered cord, this will get worse post op following the PFD depending on how tight the cord is....

   Make sure b4 u decide to move forward they checked him for all related issues.

   Praying they find answers

         "selma"
Blank
1306714_tn?1327260680
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.
Blank
Avatar_f_tn
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...
Blank
620923_tn?1405964489

  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"
Blank
Avatar_f_tn
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...
Blank
Avatar_f_tn
Thank you so much for that. God bless...
Blank
1823499_tn?1370093889
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
Blank
620923_tn?1405964489

  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"
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
Avatar_m_tn
Blank
Ball123 commented on :(
5 mins ago
1755089_tn?1376057155
Blank
drewlevas uploaded new photos
8 hrs ago
620923_tn?1405964489
Blank
selmaS September is CHIARI awarene... Comment
Sep 14
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_n_tn
Blank
wonderchiari
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
Avatar_m_tn
Blank
Ball123
1667208_tn?1333111449
Blank
zygy2
NH
7530528_tn?1405298278
Blank
AKC_75
TX
Chiari Malformation Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
Avatar_n_tn
Blank
wonderchiari
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
Avatar_m_tn
Blank
Ball123
1667208_tn?1333111449
Blank
zygy2
NH
7530528_tn?1405298278
Blank
AKC_75
TX