Newly diagnosed with Chiari I

[2GApeachy]

I just got a diagnosis.  When the doctor told me, I was so nonchalant; however, having done more research, this is rather serious, right?  I have seen Chiari support groups, etc., so that got me rather scared.  Also, I was reading some of the posts that said that their cerebellar tonsils extended 8 or 10 mm into the foramen magnum.  Well, mine says that it's 1 cm.  How bad is this?  What should I expect?  

[baccalynnwv]

I would go back to the main chiari page and start your own question there. Copy and paste this. You will probably get more answers as this is an older thread.  :)

[hockeymom6]

My 16 yr old son was just diagnosed with chairi 1 malformation 2 weeks ago.

He was at cross fit working out we it onset.  while doing a pull up hold he got a sharp pain in the back of his head followed by a throbbing continuous pain in the same area. I immediately took him to the ER where we were set home on 2 seperate days saying it was either a muscle pull or headache induce from working out. On our 3rd trip to the ER on day 5 they finally did a CT scan and found one tonsil to be lower then the other and told me to get him in to see a pediatric neurologist.

his pain level has reduced over the 2 weeks to currently a 1 out of 10 from a 10 initially and that is the only symptom he currently has.

My neurologist had Mri's of the Brain,  cervical spine, and CINE flow and all were clear of any issues. his right tonsil is slightly lower then the left (not sure of the actual number) and according to MRI results and therefore states he is within the realm of normalcy, and does not meet the chairi 1 criteria. My neurologist had said he could go back to all activity just no heavy lifting, straining, bearing down activity but I have yet to allow him to go back to anything.

Since I had never heard of this condition I went on line to find out all I could so I can make sure to do anything he needs in order to keep him safe.  I have to say all of the information out there scares me to death. I understand it is not a life threatening condition but rather a life altering condition.

He is a normal 16yr old active, athletic, adventurous kid whose loves to be physically active.  Has played Ice Hockey competitively all his life. and loves to do anything crazy and adventurous.

After reading all I have, I took all of his scans to the Chairi ! Institute in Great Neck, NY to have a team of specialists look into his case.  They contacted me after review his case and set up an appointment for him to see one of their neurologists who specialize in it but not until Jan 15th (2 months away)  

I am a nervous wreck. this is a long time to wait out to get a specialists to tell me exactly what is going on and what I should do for him.  

Its currently ice hockey season and Im not sure if I should let him go back. Im worried that the neurologist that I saw may not be familiar with this condition and be making the wrong call to allow him back to a contact sport.  

It is breaking my heart the thought of taking something away from him that he loves so much and is such a big part of him but I dont want to risk this condition progressing if it can be avoided. obviously I wont let him back to the gym or cross fit so that his doesnt lift any weights. but he is just a kid and loves roller coasters, sports, adventurous activities I hate to pull his whole love of life away if it is not necessary.  

does anyone have any opinion on this.  I am a single parent (my husband was a cop who died in the line of duty) so its just me to make these decisions. I have no one to bounce it off of to see if I am making the right call and cant handle the stress of waiting 2 months to get some information....

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry your DD is having these issues and it is possible to have a plethora of symptoms and be treated for one as a separate issue only to find later that is not the problem.

Get copies of her MRI and the  report....go to where the studies were done and request them.....and then locate a true Chiari specialist.

Numbness and weakness in limbs as well as facial numbness is common in those with Chiari,....the seizures can be related to the meds she was given or to the Chiari itself,.

More testing will need to be done....CINE MRI to see if there is a CSF  obstruction, MRI's of the thoracic and lumbar spine to check for disk issues , syrinx, tethred cord.....then testing for ICP, POTS, sleep apnea, ehlers-danlos should be done, blood labs to look at vitamin and mineral levels....

I know this can be overwhelming, but take them one at a time....research and educate yourself on Chiari and finding a Dr....having the right Dr is key to helping your DD.....

Know you are not alone.

[Hildabeach]

Hi Everyone, I have a problem. My 19 year old daughter was having chest pain and was short of breath. She was taken to ER. Where she also had a convolution in front of me. She is 120 lbs. Her doctor had given her an Rx for concerta. 108 mg a day. The Nerologist and cardologist both said she had been overdosed. But they could not diagnos her as an over dose due to the insurance would not cover her stay at the hospital so now they are saying she has Chiari Malformation type 1. and the toncials are 1cm. I dont know if this is really moral. After the seizue she is having problems with her left side hand numb and left foot is weak. Any suggestions? Thanks Hilda

[Dirk_Daring]

I used to have those episodes of sweating a lot at night. Not real often, but once in a while. I'd wake up hot as hell and sweaty for no reason.

Haven't had one post-surgery.

[selmaS]

  Hi and welcome to the Chiari forum.

The comment you made that your son has not had any problems yet...does not mean he is not having symptoms....for those of us that have Chiari can  confirm most of us have had issues/symptoms our entire life but did not consider them issues or symptoms...bcuz we considered how we felt to be normal..and for us is was...if you constantly feel a certain way it is normal...and how would you know it's not...so not until it gets worse do we know something is going on....

Chiari symptoms also cycle so they could flare when he is sick and then the symptoms are considered part of the flu or what ever...and not connected to anything else....

The best thing I can suggest is more testing...find out if he has a CSF obstruction and how his Chiari is affecting him and his overall health....

I know I had issues when I was a kid....but no answers until I was 48...surgery at 49.....so it is not always a rush to surgery....try to relax and educate yourself as much as you can on this condition and research Drs to find the best one for your DS.