Don’t know what to do..

[Stroud5393]

My symptoms the lightheaded feeling, shortness of breath, and just feeling really unwell and disconnected are getting worse.. Is this signs of progression or worse? I don’t see the neuro until next week but I do have an appointment with my pcp this Thursday. I just don’t know if I can make it till then :(...

[Stroud5393]

Just a little update, I saw the neuro in October about the results of the mri. She pretty much told me she didn't think it was bad enough for surgery, but she said she didn't know much about chiari. She said she was giving my scan and everything to a neurosurgeon and he would review it and decide if I need surgery.
Last I heard I someone one from neurosurgery would call after he read everything. I still have yet to get a call and my symptoms are getting worse fast...

The head pressure in the back of my head is almost constant now and feels like my head is in a vice and I can hear spinal fluid popping in the back of my head. I'm so scared that's it serious or something now.. I called the neurologist about the worsening symptoms and they scheduled me an appointment February 7th. I went to the ER last week because of the worsening head pressure and everything. They did a ct scan which was normal. Should I go back to the er since things are getting worse or is that pointless??

[Stroud5393]

I’m going on a family vacation to Florida and I’m so terrified everything will get really bad because I’ll be in the heat.

[KerriC1]

You should get copies
Of the report and read it for yourself. Even if they say it’s “normal” something important could be written on it. I went 15 years being told I was normal and after being diagnosed and getting copies of all prior MRI’s saw chiari written in black and white...

Also I hope you can go to Florida and enjoy yourself instead of feeling miserable. Try to relax and take it one day at a time

[selmaS]

There is a really good Chiari Dr near Disney...not sure where in FL you are....there is another Dr down in Miami......if you should need help. Try to relax and enjoy your vacation....and try to keep cool.....in a pool or inside during the higher heat of the day.

[Stroud5393]

Ok today I’m really concerned I’m feeling real out of it and confused it’s hard to describe but I find it really difficult to think clearly. The past couple of days I’ve been feeling off like something different is up idk. Could I have hydrochepalus causing these symptoms?  Or could this just be chiari causing the confusion and stuff?

[Stroud5393]

Please someone respond I don’t know what to do I don’t know if I should go to the er or what because I’ve been 4 times in the past month or so :(

[Stroud5393]

I know that a lot of my symptoms can be caused by brain stem compression I don’t understand how my brain stem being compressed doesn’t warrant emergency surgery I’ve read people can die suddenly do to it... I’m sorry I’m just a wreck and don’t know what to do.

[selmaS]

Hi...I am sorry I was not able to get on my computer and missed a few posts.....and I am so sorry as I know just how frustrated and anxious you are about these symptoms.

Sorry I can't remember  if you have had a CINE MRI? If you did it could indicate an issue with ICP or Hydro.
Are you keeping a journal to see if outside events/forces are triggering your symptoms...I know the recent weather here has been awful and will be  a major trigger for us Chiarians.

[Stroud5393]

I believe it’s a cine mri I have scheduled this Tuesday I hope it reveals answers..

[selmaS]

Good Luck Tuesday and I pray you are feeling a little better. Do let us know how the testing goes and remember to get copies of the MRI on disk before you leave....tell them  when you sign in and also ask for a report to be sent to your home ( you should have to sign a release for them to send the report.)

[Stroud5393]

Unfortunately I was wrong about it being a cine mri.... It’s just a regular head mri o really need the cine mri now I may never get answers... I’m fixing to get the mri now I’ll ask for the copies and everything.

[Stroud5393]

Isn’t there a chance that they won’t see the chiari this time and they think I don’t have it all of a sudden?

[selmaS]

Chiari is the malformation of your skull...it can not go away....on the other hand, low lying tonsils is many times referred to as Chiari since the symptoms and treatment are the same...low lying tonsils can sometimes retract on their own, making it appear that it went away....this is not a common occurrence.

Regardless of what they see, you either have it or you don't, ,the MRI may help determine what you do have if Chiari is not the DX.

[Stroud5393]

Well I have to wait till October to see the neurologist about the mri results my symptoms are getting worse by the day.... It’s really terrifying to know that this will never get any better even after surgery :(.

[Stroud5393]

For the past few days I’ve noticed a burning sensation acros my whole back it feels like it’s on fire or something. Is this a chiari thing or could that be a syrinix?

[selmaS]

I don't have a syrinx, so I can't tell you it is not one....but I get that sensation and mine is from my EDS DX.

[Stroud5393]

I don't know what it is but its really concerning me.. It feels like a constant hot sensation in my neck..

[Stroud5393]

Well I saw the neuro yesterday and I believe I’m getting a CINE mri because she said she needed to speak with a radiologist about what type of mri I need and I just expect that to be it. Honestly from looking at my last mri it doesn’t appear to be any obstruction with my tonsils blocking spinal fluid I think most of my symptoms are from brain stem compression abs the fact it’s kinked.

[Stroud5393]

I’m afraid she will come back and say the flow is good and assume my symptoms are cause by chiari but that’s not true is it, it can also be caused by brain stem compression correct?

[KerriC1]

Chiari symptoms are deff due to brain stem compression and diminished csf flow. My brain stem was kinked and I had diminished flow also. I think with brain stem compression, it has to block at least some flow just anatomically speaking.

I pray someone can find the answer for you and you can find some relief

[Stroud5393]

Thank you so much for your prayers I pray they get this took care of..

[sararose9]

Hi, i'm 21 and I got decompression surgey 13 months ago and still experience shortness of breath, dizziness, and feeling disassociated all the time. i totally understand how unnerving it is but it's comforting to hear other people feel this as well. i don't have another MRI or appointment scheduled until october, so please let me know if you find out any more info on this from your doctor. good luck, praying for all of you.