My 8 year old daughter was recently diagnosed with Chiari. She has been experiencing numbness in her hand, headaches and blurred vision as well as weakness on her left side. Another health issue has been chronic tonsil infections in which she has developed a mass under her left ear. This has caused her to lose weight and miss 2 months worth of school throughout the year. The doctors are telling us that her chiari malformation makes a tonsillectomy high risk and unsafe. Is this true, or can she proceed with the surgery? The constant infections have really lowered her quality of life. This plus the symptoms of chiari are difficult for her. Any advice?
Your poor little girl..what a handful to deal with at her young age! I'm so sorry that you and your DD are dealing with all this!!
Honestly, I have no idea on the tonsillectomy..did they list the exact reasons why? It is b/c on the anesthesia, infection or something else?
Also, I am wondering what they are doing about the Chiari and what test have been run. Most of us have found, especially with children, that it is important to find a Chiari specialist if you can. I mean really, they can't just leave things the way they are now, so if that's what the drs you have are saying, then I would start looking for a new one! I hope and pray that you find some answers soon!
I do not know if the dr that said this is well informed on chiari or if ur DD has other issues that makes him feel this would be risky.We all ( members here ) feel that neone with chiari should be seen by a true chiari specialist.Once u have a specialist guiding u with all aspect like this, u know that u r getting the most current info and care.
As for having chiari and it being risky bcuz of chiari...not sure...b4 I was dx with chiari at age 48....I had my tonsils out....they did not do MRI's when I was young....and I was fine, but I would since ur DD has the dx speak to the chiari drs to know if it could possibly affect her.
With the advance of technology in all medical areas including surgery there may be new ways to do the tonsillectomy .
We r so happy to have u join our little family here, so sorry ur DD is dealing with this and u had to seek us out.
Thanks for your helpful and supportive advice! I really appreciate it! I am American but am currently living in India and do not have access to a chiari specialiast. Can anyone tell me what tests I should be having run and what conditions I should be looking for that would be dangerous or need immediate care? I'm sorry to use you all as dr's but this seems to be the best route for my situation!
Hi...MRI's of the brain w/wo contrast...MRI of the thoracic, lumbar and cervical spine...plus a CINE MRI to check for a CSF blockage.....u also want to know if u have overcrowding....the drs should be looking for a syrinx, tethered cord, Ehlers-Danlos....and any other condition that the symptoms fit to rule them out to know that it is in fact the chiari creating the issues...I was tested for MS, lymes, lupus....my thyroid was also checked......if I missed ne I am sure that someone will add to this.
I am so sorry u r in a location that makes it even harder to locate a chiari dr.....I know there is a location in Barcelona, Spain....
I live in Canada and don't have access to an actual "Chiari specialist" either. I was extremely luck to have run in to one who actually knew about the condition and dx me. That is what I would suggest to you...try and check around and see if there is at least a NS who had some experience dealing with Chiari. I knew right away that my NS was the right DR for me b/c he sat me down, validated all my concerns and gave me an hour of his time!! So hopefully you can find someone like that!!
I am 57 and my cm1 specialist wants to remove my tonsils. I had the cm1 surgery at Duke in 96, and my problems are getting worse. I am so worried about the sensitivity of removing them. Can you shine some light on this?
May I ask, do u mean cerebral tonsils ? This tread is about the tonsils in the throat.....
But there r diff of opinions on the removal of cerebral tonsils....I was told it use to be a common practice but they leave them now unless there is a issue with them being compressed and intertwined around the structures ...if so they remove them to allow room for CSF flow, other wise they may leave them alone or cauterize them to help them shrink.
If ur Dr is a CM specialist they all do these diff...just make sure u r tested for CSF flow, and other related conditions b4 u have surgery as they can affect how u feel and heal post op.
Thank you for your returned message. My doctor has done MRI's, Cat Scan' and several Xrays. I also have a swan neck caused by years of me leaning forward to relieve the pressure that the CM causes. I also have sculiosis and stenosis and 5-6 6-7 cervical compression. I will have to have the spine surgery as well. His thought is to do the CM first to relieve the pressure of leaning back, because the disc surgery will attempt to turn my spine back like it should be. I would be miserable if if he did the spine surgery first. If all goes well after the cm and spine surgeries that will be wonderful. But if the disc's don't help the swan neck reverse the spinal direction then he will have to go in the back way.
Alot to swallow................... thanks for any input
No worries, I just wanted to clarify so I answered u correctly....
Did u rule out a syrinx and Ehlers-Danlos, and tethered cord?
Wow u have a lot going on.....I had loss of cervical lordosis from whip lash...and had PT for it yrs b4 I got my Chiari DX...so I know how awful that is...it just adds to all the pain and pressure we already have.
Do make sure u post about ur surgery dates on the surgery list 2013....that way we can post a prayer thread for u : )
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