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 :(...

[selmaS]

Hi...in this heat , weather can be playing a part in how you feel, Are you well hydrated?
Do you have a syrinx?(sorry I can't remember)

[Stroud5393]

Well I work in the air condition so I don’t think it’s that. Yes I drink plenty of water that’s all I ever drink. As far as a syrinix it’s possible. I had a mri of my brain and c spine about 4 months ago which were normal but my symptoms have gotten much worse since then.

[Stroud5393]

I’ve bern getting a lot of pain between my shoulder blades lately too.

[Ttraye]

You sound just lke me, Choking on my own spit, gabbing the counters or a handle because my head is spinning so bad I am scared I will fall. I went to my first neurosurgeon apt he said 4-5 mm is not chiari, smh, I truly wanted to punch him in his face, as long as I have waited to get it. I’m not reading their patients referrals any longer I need appts with someone I’m getting scared. Best of luck!!

[Ttraye]

I forgot to address that as well mine are like they are on fire!!

[Stroud5393]

Ttraye sorry your going through this too... It’s truly scary to feel like this all the time.. I’ll probably never get the surgery I need because I don’t have insurance and my symptoms are progressing everyday and I don’t know what to do... Selma does it sound like I have a syrinix?

[selmaS]

Just from the way your symptoms are changing it is possible you have a syrinx....we have had other members here have a change that went very fast and it was due to a syrinx......I would definitely want to rule it out.

Being in AC does not change the need for hydration....the amount we need has changed from 8  - 8 oz glasses a day to 15 and we should have more during hot temps. Dehydration can cause many of the same symptoms you mentioned except for the swallowing. I had swallow testing done and they said no issues...so it was a neuro issue that has changed post op for the better.

Do you have a copy of your MRI? If not, call the facility that did the studies and request one, they should give you one at no cost. Also ask for a copy of the report and do so going forward with ALL testing even your blood  labs.

[Stroud5393]

Yes I have the copies of the mri's and reports. I just posted a picture here of my c-spine if you want to look at it.

[Stroud5393]

Also I drink a lot a water all day too.

[Stroud5393]

The mri's I had 4 months ago were read as normal it wasn't until I went to the er like 3 weeks ago that they saw chiari 5mm on saggital ct scan.

[Ttraye]

Well my next appt is with my previous neurosurgeon that did my neck and back surgeries. He’s not a chiari specialist so I’m hoping he can get me into someone he knows that is and or getting me in someplace quicker than I can myself. I have been looking at the chiari institute in New York City, even though the thought of having to go that far from here scares me, if I have to travel, which is very obvious, I may as well go to the best. My issue is there are so many different sites and drs, some that have been cited for illegal practices I can’t tell who works where and if they are still there. I’m so overwhelmed trying to keep up with being a professional patient I am so confused, I’m just about ready to say forget about it. I can’t keep track of anything, trying to keep a home running, smh it’s just horribly discouraging all the way around, wishing you the very best!!

[selmaS]

Ttraye- I went to TCI and my Dr is still there and I was very pleased......I know there are other Drs there.....and some of what you are reading online about some Chiari Drs have been exaggerated if I must say so....if you have questions on a particular Dr, send me a PM maybe I can shed some light....

[Ttraye]

Thank you Selma, my life long friend I told you about way back at the beginning, her daughter had chiari was operated on there, she found me her contact that she had for her daughter. I see my pain dr tomorrow, I finally got my eyes working with my prisms in my rx went to eye dr today. So I will see my pain dr make sure we are on the same page with my treatments and I will give you a shout. Just trying to do one thing at a time, I have had 2 very bad dizzy episodes, 1 could have been bad,I almost feel as if someone stopped the fall, but I know that I did some how some way.... this chiari is a mess. Thank you, as always your input is greatly appreciated!!

[Stroud5393]

Has anyone here experienced lightheadedness to the extent of where it’s was almost constant? I’m also noticing my swallowing getting worse to the point of almost choking on liquids.. What worries me is my symptoms have gotten so bad in just a couple of months it makes me scared that it is serious...