Chiari Malformation

[sunny429]

Just was diagnosed with Chiari Malformation Type 1.  Will be having decompression surgery in a month.  Been experiencing many symptoms over the past many years, more recently becoming everyday.  Any comments?

[selmaS]

  Hi...please be advised surgery may not have u back to what u consider "normal" but u may have a NEW normal....

Make sure u get all the info when u speak to ur NS including how many of these he/she has done.....

Keep in mind surgery is not a cure or a fix, just a means to slow progression and restore flow....many will feel a lot better right after surgery while others it may take a few surgeries b4 that happens.

Do have all related issues ruled out b4 u go into surgery.

[candyschug]

Same here. Just waiting on a few things to go through and I will be having it as well. I dont know the full extent of the surgery we will go in here in a couple weeks to get all the info. Not really scared yet but I know I will be when the time comes. I am a mom of 6 kids who need their mommy back to normal> Good luck with your surgery as well.

[selmaS]

  I was on synthroid for  approx a yr and a half, post op from my chiari surgery all tests have my levels in range so no meds....for now....

I had nausea a lot b4 I had my surgery...I get it on occasion now, but not to  the extent I had b4.....

Working full time with Chiari is  hard to do I know as I did it too I worked 70 plus hrs a week and felt I would go crazy from how I was feeling....surgery was the best thing I did, I no longer work,....but I pushed myself for so many yrs I just did not have nething left...I am slowly doing more....

Wow I just never thought someone so young would have to deal with a condition like that...so sorry, I pray she has a wonderful recovery....

Did u rule out ehlers-danlos?

[sunny429]

The dr. will be taking out c1; and putting on the Gortex patch, Do you experience intense nausea? I do, everyday now.  My mornings are tough.  Temple headaches, and off balance.  I work a full time job, have a husband and two kids.  Trying to take it one day at a time.  As for my daughter, she has Graves disease.  Surgery is her best option, because radiation therapy wouldn't do anything, do to the size.  I had radiation therapy years back (at age 16), and since have been on synthroid.  

[selmaS]

  I am glad u found a Dr u r comfortable with and confident in...that is key.

Make sure u have ruled out related conditions...and ask what all is going to be done during ur surgery....ie- lamenectomy, dura plasty, and if a dura plasty what type patch.


  Wow that is young to have a thyroid out, isn't it?...Does she have Hashimoto's? I ask as many of us here with Chiari do have that auto immune thyroid condition,...I have mine checked every 6 months,.

[sunny429]

I was diagnosed in 2003 with Meniere's (inner ear condition) and treatment was water pills to no avail.  My symptoms were vague and for years I just assumed it was from the Meniere's.  I had many MRI's to rule out ms, tumors, etc. and were negative, thankfully.  Nov, of 2011, I went back to my ENT and said that my quality of life isn't where I want it to be.  He suggested getting an updated MRI and sent me to a doctor whose specialty is headaches.  This dr. suggested it was vascular migraines and I tried beta blockers, again to no avail.  This dr. informed me that on this MRI, a brain aneuyrsm (incidental finding) was found.  It is too small to do surgery and along with that an enlarged pituitary gland.  Sought a neurologist who said the symptoms weren't coming from the brain aneursym and that we'd monitor every 6 months, or yearly.  She said I'm very anxious and to speak to a psychologist.  I then took it upon myself to seek out my daughter's endocrinologist; sought an opthamalogist who did a vision field test which came out abnormal.  I made a trip to ER a few weeks back because of severe vertigo.  The ER doctor asked who I am seeing and told him Dr. Pieper out of Royal Oak, MI (Beaumont Hospital) and the ER doctor said I'm in good hands; Dr. Pieper is his doctor, (I knew that was a sign).  We met Dr. Pieper 2 x's and he clearly saw from my MRI that it is Chiari Type 1.  My symptoms fit.  My 14 yr old daughter will be having her thyroid out next week.  And then 3 wks later, I'll be going in.  This had been a journey; I am very thankful for finding Dr. Pieper.  Everyday I have headaches, dizziness, nausea, balance, and neck pain.  I know the good Lord is watching over me and my family.  Sorry, this is wordy.  Hope to hear from you!  

[selmaS]

  Hi and welcome to the Chiari forum.

Wow, seems u got a quick DX and surgery date....that does not happen all that often...may I ask where u r having surgery?

And did ur Drs rule out ne related conditions?....ie- syrinx, tethered cord, ICP, POTS. ehlers-danlos...sleep apnea,....?


Many of us have had surgery while others r waiting for a DX or to find the right Dr....

   Is there info u r seeking ?