Chiari Malformation Community
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Avatar universal

Don’t know what to do..

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 :(...
32 Responses
Avatar universal
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...
620923 tn?1452919248
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)
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.
I’ve bern getting a lot of pain between my shoulder blades lately too.
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!!
I forgot to address that as well mine are like they are on fire!!
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?
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.
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.
Also I drink a lot a water all day too.
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.
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!!
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....
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!!
Avatar universal
Well I may be back to square one again.. I went to a different er awhile ago and they did a ct scan and the the doctor told the radiologist to look for chiari and it was normal. So idk what do now :(
Do you have a copy of that MRI?
The one I had 4 months ago?
Yes and I have and the report but it was normal. I have the ct scan report from a month ago that said there is extension of the cerebellar tonsils through the foramen magnum by approximately 5mm consistent with chiari I malformation.
I am asking if you have a copy of the MRI, not the report...it is good to have both, but the MRI on disk is important to have since not all Drs read the findings the same way, so the report is an opinion of the radiologist that did the testing....while he/she feels one way which is in the report . A  Chiari specialist may see something different....so having a copy of the MRI on disk is important to have.

Chiari is not the herniation, but so many Drs want to see a herniation of 5mm's to classify it as Chiari, but Chiari is a malformation of the skull so, this is why I say you need more then the report.
Yes I have the mri of my brain and spine on a disk.
Avatar universal
I see my PCP tomorrow and theirs so much I wanna mention to him but I don't wanna overwhelm him. Like the er seeing the chiari on a ct scan and everything. Should I tell him I need mri's of my head and full spine? I see a neurologist next week but I just wish my PCP could get these tests out of the way.
Tell your Dr about the Chiari and what other testing is needed.....and let him/her decide what involvement he/she wants to be part of.....your INS will determine a lot of that too...but your PCP should know what is going on.
Avatar universal
Avatar universal
So I went to the doctor today and he pretty much said he’s gonna let the neurologist do everything like he doesn’t want any part in it.. I’m so short of breath today and it’s just getting worse every single day :(. So this is either a syrinix or brain stem compression causing the shortness of breath don’t you think?
From what I’ve read online this could cause respiratory failure I’m so worried....
Hi....there are many things that could be going on, my question is why didn't your Dr get you into see a NL ...I figured he could not treta you since it is a neurological issue.BUT he could refer you or consult with the NL to get you in sooner with the breathing issues.

Try to relax as stress will not help and could make symptoms increase.
I already have an appointment with a neurologist next week I guess that’s why he didn’t wanna do anything...
Well they do not go outside their area of expertise....so, the best he can do is chart your issues but since they are breathing issues he could have consulted with the NL that you are to see to maybe get you in sooner.
He probably won’t think my breathing issues could be caused by the chiari
Regardless, if you are having breathing issues they should be addressed by a medical professional if not a neurological issue, then a physiological approach and   exam should be done.
It’s more than likely neurological because I’ve had a  extensive cardio and pulmonary work up so I know it’s not my lungs or heart.
Selma have you ever heard of someone d with chiari with the same symptoms have you ever hear of some going into respiratory failure ?
The only person I heard of having respiratory issues has Ehlers Danlos Syndrome and it was not respiratory failure..but she is having major issues.
What causes the shortness of breath in EDS?
Avatar universal
I’m at the hospital again I’m having heart palpitations elevated heart rate and shortness of breath I’m so worried... I’ve been working in the heat all day today and maybe that’s a contributing factor.. All day today every time I bend over I feel faint and short of breath :(.
The heat is definitely a  factor.....
Avatar universal
Just left the hospital a bit ago they did an ekg and blood work and sent me on my way my heart still hasn’t come below the 100 mark...
So it is not your heart, otherwise the testing would have shown something,and they would not have sent you home.
Were you tested for POTS?
No I haven’t don’t they do a tilt table test? They’ve checked my blood pressure lying to sitting to standing and it never drops or anything.
Yes, the tilt table is one of the tests they do for POTS...and something I feel your Drs should rule out if they haven't already.
19681337 tn?1531698842
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.
Avatar universal
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.
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?
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
Thank you so much for your prayers I pray they get this took care of..
Avatar universal
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?
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.
I don't know what it is but its really concerning me.. It feels like a constant hot sensation in my neck..
Avatar universal
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?
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 :(
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.
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.
I believe it’s a cine mri I have scheduled this Tuesday I hope it reveals answers..
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.)
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.
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?
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.
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 :(.
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