Pediatric chiari 1 and vision, hearing and scent issues

[22amber44]

I have a child recently diagnosed with chiari malformation type 1.  His age is 4.  It started with vision and hearing issues, then breath holding spells when hit in the head.  All started at age 2. He has strabismus with esotropia. Recently started having spells where he will drop to the ground and cover his eyes (photosensitivity) complains of spinning, they last 2-4 hours followed by 24 hours of vomiting.  The neurologist believes this is unrelated to the chiari. I have scheduled a second opinion with a neurosurgeon.  He also is constantly smelling everything. Any thoughts on that part?  I was wondering if this is all related to chiari and if he has the decompression surgery will it fix his vision and hearing?

[selmaS]

  I had a MRI and yrs later when I got my Chiari DX they wanted copies of ALL my MRI's I had....so I went to the hospital that did mine and got a copy of the report...mine stated I had tethered cord...but I was never told...so if I had not gotten my Chiari DX I might not have found out that it was visible on the MRI and I was told all was fine....since then I do not always trust what they say and I look at both myself and then get a few opinions....scary they do not always tell us what is there or that they do not feel it important enuff to inform us.

[22amber44]

I was wondering if it was overlooked on the first MRI also, I did get a copy of that MRI and am going to ask the NS when I see him if he could tell if it was just missed.  He hasn't had any other testing other than the MRI.  

As with all of his different thing I always called the pediatrician first and he had me take him to the ER, he sent in the order for the MRI to be done there.  Except for the hands I waited till the next day and brought him to the pediatrician for that.  

[selmaS]

  The ER does not DX only treats the current symptoms do tests and send you to your Dr for an eval of results...ER is only really good for life threatening situations...as they will not try to figure out what the issue is.

Did they ever do a CINE MRI to see if he has an obstruction of CSF flow or a MRI of the cervical, thoracic and lumbar spine to rule out a syrinx?tethered cord?

I wonder if the Chiari was present just over looked on the first MRI?

[22amber44]

No he is a neurosurgeon that specializes in pediatric chiari.  I have researched him and he seams to be good.  I went ahead and got all of his medical records from birth to present and all of his test on cd plus all of his emergency room visits.....most of his medical history and er visits have been odd....never diagnosed...problems.  

He had an MRI at 2 that showed nothing-(this was after a complaint of total vision loss just for seconds),  then the eye started going cross, then the breath holding spells, then hand (numbness)-he would just cry and I would have to rub his hands. I took him to er and followed up with pediatrician.  Then the recent MRI showed the chiari.  

[selmaS]

   Trust your mom's radar on this ...keep pushing for answers and find a true Chiari specialist as a reg NS  or NL  usually can not help....or will just dismiss it and say it is not Chiari related...

Make sure you get copies of ALL testing including the reports...so contact the facility that did the studies and request copies of both..going forward when he is signed in for tests tell them then you want the report as well as copy on a disk....this is so helpful in getting 2nd or 3rd opinions.

  So this Dr is just an eye Dr?

I have read that some children with symptoms that present earlier in  life can have some developmental delays....speech is related to hearing and I know I have had many ear issues and they seem to have gotten better since my surgery,....I still have vision issues but I was 48 when I was finally DX'd with Chiari....some of the vision issues for me can now be age related....so hard to tell.

  We only have one Dr listed for Alabama....you will have to research him as I have no idea if he treats children....Dr. Anthony Martino
Mobile, Alabama -  I do know there is one that will treat children in Orlando, FL......also NY....Baltimore, MD......

Waiting is the hardest for all of us and we all hurry up have a test to wait to get answers....you will need patience with this condition as the patient or parent to one...so all this waiting is helping us learn patience ..at least that is what I tell myself,....hang in there, <3

[22amber44]

He has a scheduled appointment with Dr. Oates at Birmingham Childrens hospital.  No other test have been run at this point, just the mri to check on the spinning, head pain and vomiting. I am just concerned.  I don't want him to be on medication for the rest of his life.  I also don't want his vision and hearing to continue to get worse.  he has also been in speech since he was 14 months old.   All the waiting is very hard for me....plus the first neurologist acting as if it were not that big of a deal.  I have done a lot of research lately and to me it is a big deal.  I am having a hard time.

[selmaS]

Hi and welcome to the Chiari forum.

Surgery is not a fix or cure, it only helps slow progression and restores CSF flow...that said it should help relieve many of his symptoms like the vertigo if it is Chiari related and I feel it could be...that is the spinning he is talking about and explains the vomiting too.

As for his eyes, that is a muscle issue and may need to be corrected  with surgery once this one is done.....

Do you know does he have any related conditions? Syringomyelia, tethered cord, sleep apnea, disk issues, ICP, POTS, ehlers-danlos?

B4 I had surgery many things were offensive to me in the odor department....so he may be trying to get a handle on what smells bad to him??  Not sure with the age what it could indicate....

Chiari can affect everything as it affects the spinal cord and everything in it....so we can have hearing, vision  issues.and heart palps and it can be all Chiari related...

Keep in mind should he have surgery it can take a long time b4 all benefits are known as he can continue to heal for  up to 2 yrs post op.

Do you have a true Chiari specialist to help guide you?