Hi,
I am 25 years old and yesterday I saw a neurosurgeon here in wenatchee who feels I would benefit from surgery for a chiari malformation that’s 6-7 mm.
I have done just about every treatment in the last five years to try to get relief from this headache I have with no success.
I am just curious what the surgery is going to be like? When I arrive at the hospital? After surgery? Recovery in the hospital? And recovery at home? I understand the risks and benefits Im just super scared of what its going to be like. The physician said he can’t guarantee relief of my symptoms but thinks it is the best option I have at this point.
Thanks
Krissy
Krissy, I think we have two krissys on right now I’ll try not get confused…I’m glad you found an NS who has validated you, that’s a big deal. Unless your case is serious with a syrinx or apnea you should feel ok to take your time with the process and be fully informed about exactly what you have going on in your noggin. I’m going re-post this from another feed just in case this info is new to you- if not sorry! It’s all important but to the EDS is something that should absolutely ruled out in every Chiari person.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Dysautonomia- Dinet.org
Tethered cord syndrome
Sleep apnea- dangerous, especially if Cranio cervical instability is involved
I am glad you found us,
Jenn
Thank you! Ya I just saw that idk if they’ve tested for all that or not but I think he is thinking of trying to get me into surgery as soon as he can … I have uncontrollable nausea and vomiting on top of headachees. I know there is no syrinx.
I find out more what he’s thinking on Tuesday but thanks for all that information it really helps.
Thanks
Krissy D.
Krissy d so sorry you have vomiting too 
hang in there.
I’ll look into it, I know I tried to get an appointment with Dr ellenbogan in Seattle and he wouldn’t see me bit that was a year ago and my MRI was shoeinge a 3mm decent this last MRI shows it at almost 7mm.
I looked this neurosurgeon up and his specialties are craniectomy, which is what I thought the chiari surgery is along with shunts and some others I don’t know.
I will look into contacting Dr ellenbogan to see if he will take a second look but the first time he totally dismissed me like I was making it all up.
I appreciate your help and advice.
Thank you!
Krissy D.
Thank you!I appreciate evetything and I hope all goes well for you too. 