stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

  If u don't mind me asking, how did they discover ur condition 49 yrs ago?

Have u ever been tested for related conditions?

Wondering if a related condition could be the root to some of ur current symptoms.

The funny voice could be reflux, or a Chiari related issue....

[BigZip]

no MRI's then.  I had headaches for several years after surgery.  Learned to slow down and not let them build into anything really bad.  I feel pretty good.  Just know not to expect good outcome when I move my head first thing in the morning.  was surprised how well I felt after sleeping on my new pillow. I know the pain can be tremendous, I read the posts. In my case the pain ultimately became less and less.  It is what my Dr said to expect and it happened.  I have poor balance and can't move very fast, I have a funny voice,  I wish the very best outcome for all who find themselves facing this condition.

[selmaS]

  Hi and welcome to the Chiari forum.

Not sure how u looked for a current thread as many find these older ones b4 they join....but no matter....I am glad to hear the Chiari pillow helps u....and 49 yrs ago....may I ask have they done recent MRI's to see if there have been changes?

In all that time u have always had HA's what did ur Drs say in regards to that ?

Do u have ne other lingering symptoms or issues?

[BigZip]

had to post this, so looked for a current comment chain.  I had the decompression 49 years ago.  lots of adventures since.  recently bought a "Chiari Pillow".  it is great.  for the first time I can remember, I wake up without a headache and without nystagmus.  best of luck and courage to all posters.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little guy has had so many surgeries and is dealing with so much already in his young life.

Many if us do have sleeping issues....has he been tested for sleep apnea?

U can have a sleep study done in ur home, instead of a clinic....research NovaSom....

I had swallowing issues that did resolve post op .....but with his Aarskog-Scott condition, I would not know how u can tell what is from which...as he has joint laxity and many with Chiari also have it as they also have EDS which is related and causes the same issue....

I would strongly suggest finding a  Chiari specialist to help u decide if surgery is going to help and answer some of ur concerns...as there is so much going on with him....not all Drs are capable to knowing what may  or may not help....and if his Drs are not true Chiari specialists they may not know how to advise u.

A NS is not the only thing to look for when seeking help with Chiari....u want one that treats and researches Chiari and ALL related conditions.

  Chiari symptoms do cycle, so having good and bad days is typical.....

Does he wear a helmet ?   it may help until he gets help with his balance and help with the concussions,.....

With joints that are lax, u can have pain, pain makes u tired....I had periods where all I wanted to do was sleep....plus he is growing....that has got to be tiring for him. But do have a sleep study done too.

we do have a list of Drs for u to use to research....http://www.medhelp.org/health_pages/list?cid=186

This list is not a referral nor an endorsement....just a tool to help u get started researching Drs....having the right one is KEY !

[LrCrain]

My 3 year old son who has multiple medical conditions was diagnosed with Chiari 1 with 15mm.... My question is I have been to two Drs and both don't know what to do. My biggest concern is that he is all of a sudden sleeping all the time. They have done every test possible to see what it could be but nobody can figure it out. Has anyone else had this issue??? The last Dr just told us that she would do the surgery but we don't know if that is what is needed..... just wanting to know if anyone else has had this issue?? He has swallowing issues but the 5 surgeries have not helped yet and I am tired of all the head concussions he has from falling all the time. He was born with club feet but are good now. He does do better with no shoes on and is small for his age. I am just at a loss as what to do. Husband and I are fighting because we don't know what to do.... They also think my daughter might have it also so we are waiting on her MRI next month!  His other medical problems are Aarskogg Scott Syndrome, a Laryngeal cleft, Unspecified auto immune disorder, asthma, chronic ear infections and hearing loss and vision issues now also, He has always been delayed in everything and with every med he takes he aspirates or with most thins. He wont eat much food due to choking and has to take supplemental drinks to keep us his calories to grow. I do know all the other Drs say its not there issue with what is going on but the neurosurgeon cant give us a straight answer and said she would do the surgery but left it up to us.... it is a big deal for a 3yr old who has had multiple surgeries already and in the last month has been poked over 30 times for tests and or surgeries and he keeps getting worse. We might have a few good days where he is happy and playing but here the last month or so all he does is sleep. Just wondering about any information that might help us figure this out.