Just Diagnosed

[TracyGR]

My 20 year old son was just diagnosed with Chiari Malformation. The only symptom he seems to be having is 10-15 second headache upon standing or upon exertion. He has had these for 5 years. Three doctors told us they were cluster headaches. The neuro surgeon told us he needs surgery. He stated the malformation is about 4 times the size of ones he usually operates on. As you can imagine our heads are spinning, can any of you let us know what the surgery is really like? How did yours go? Have any of you found that more than one person in your family has it? My husband has many health problems that doctors have not been able to diagnose over the past 10 years. I myself have had migraines since I was 16 and the doctor believes I have fibromyalgia. Many of the symptoms are the same as Chiari Malformation, I'm wondering if it could be a genetic. Both he and my son were born with birth defects. Any information would be greatly appreciated.

[selmaS]

  Hi Tracy,

I was dx'd with my chiari in Feb '08 and had my surgery in May '09....I always knew something was wrong, but it was not easy getting a dx.

[TracyGR]

Thankyou so much for your post! I will pass the information along to my son. He will not get on these sites yet. Thanks again

[TracyGR]

So sorry I never thanked you for your response. You seem to be very knowledgeable, how long have you known about your Chiari? Thanks

[Viva001]

I am 5 wk post op & doing well.  The pain is manageable.  my biggest problem is that it's been slow getting the motility back in my esophagus.  I, like a lot of folks here, had about 100 symptoms--but I've she'd most of them.  I'm cautiously optimistic.
I was also mis-Dx'd with chronic fatigue syndrome & fibro--my NS said that fibro is spinal cord damage.  He has a particular interest in those, as so many of his patients come to him carrying those diagnoses.

I hope your DS has further tests, including the cine MRI, which takes a video of the CFS flow.  
I assume you'll get another opinion?

[selmaS]

  Hi and welcome to the Chiari forum.

As to genetics of Chiari, they r still doing research, but chiari is congenital....and it is a birth defect as well...the skull is malformed, as a result it is too small to hold the cerebellum and the cerebral tonsils herniate as a result of the space being too small....

The size herniation is not the real concern, but if it is creating a CSF obstruction....and how it is affecting ur DS's overall health....not all with chiari need surgery or right away...and if u r being told he does, as y and what benefits the surgery will have...and make sure it is a true chiari specialist and not just a NS that does this surgery every now and then....

Do use our list of Drs to research Drs, educate urself, (we'll help) and compare a few Drs to see which one u feel is the best one for ur son.

I had surgery 3 yrs ago and I am doing well....I do have other related issues that need tending, but my chiari surgery went well....

I was also dx'd with fibro....so do look further, and look into chiari related conditions for ur self and ur DS.

Syringomyellia, tethered cord, POTS, ICP, disk issues, ehlers-danlos,thyroid issues...sleep apnea....etc.....