Could I have chiari malformation?

[Stroud5393]

I’ve been dealing with ongoing symptoms for years that have progressed. I deal with daily brain fog lightheaded spells blurry vision off and on horrible short term memory loss fatigue unsteady when walking sometimes and shortness of breath. I’ve had tons of tests done including mri and no diagnosis... Is there a way I can post a picture of the mri?

[Stroud5393]

Have you heard of chiarians complain about their hands feeling off or disconnected and hard to use? My vision has been too lately. What worried me is how fast this has gotten worse. For months I’ve been just kind of use to everything and then yesterday everything went horrible. I was suppose to see an endocrinologist yesterday about my low testosterone but needed up going to the ER due to the severity of my symptoms. I felt so faint, weak and short of breath I didn’t know what else to do.

[Stroud5393]

I’m sorry for all the questions and everything I’m just very overwhelmed

[selmaS]

Hi no need to apologize....yes, it is possible to have numbness in hands and feet and other areas and this can be due to Syringomyelia which is a related condition to Chiari....this develops when the herniation cause a CSF obstruction and a syrinx forms.....the syrinx depending on where in the spinal cord it forms will depend on what symptoms it causes....but it compresses the spinal cord and the nerves in it causing the issues you described. I don't know if you have a syrinx but that could explain the symptoms/issues.

You were right to go to the ER....any breathing issues need immediate attention.

[Stroud5393]

What I’m really worried about is how fast these symptoms are progressing. The lightheadedness is near constant now I’m getting these chill feelings in my back and in my legs and I feel really sick to my stomach. Could this be some kind of complication to the chiari? Does it sound emergent enough for me to go to the er you think?

[selmaS]

Hi...sorry but we are not all always on line....sorry you are so distraught.

It is very possible  Chiari was there.....the thing is not all Drs recognize Chiari unless the herniation is 5mm's or longer....Chiari is NOT the herniation but a Malformation of the skull which causes the space to be smaller and hence the tonsils herniate.

Have you had a CINE MRI? this shows if there is an obstruction to CSF flow....

[Stroud5393]

No I have not had a CINE mri yet. I’m suppose to be seeing a neurologist about everything and seeing what’s next. I’m gonna recommend to the neuro about the CINE mri. I’m worried about brain stem compression I’m so lightheaded and short of breath..

[selmaS]

make sure you let them know about the breathing issues when you schedule appointments or if you already have one....call to inform them of the change in your condition...it may get you in sooner.

[Stroud5393]

I’m waiting on the nurse to call me Monday to schedule my appointment either the neuro.. I just hope it’s not a compression of the brain stem I d heard this can be deadly..

[selmaS]

Try to relax over the weekend and try not to worry as stress can have an impact on the symptoms as well......

[Stroud5393]

Thanks Selma I’m gonna try I’m just really worried about permanent nerve damage you know?

[selmaS]

I do know....and I felt the same way..worried things took too long to figure out and what would I be left with......but, even tho it took my entire life to find out, at 48 surgery at 49......I am doing well.....and no major  issues.

[Stroud5393]

Well that makes me feel a lot better knowing that! I’ve thought I was going crazy for so many years... Now I know most of my symptoms were more than likely caused by this beast.

[Stroud5393]

Please anyone?

[Stroud5393]

Is this post still active? I really need some advice this all so scary... I don’t even know how I’ll see a neurosurgeon without any insurance...

[Stroud5393]

Hello everyone I went to the er today with near fainting feeling and disoriented feeling. They did blood work and ct scan and to my surprise the radiologist noted that I had a Chiari Malformation 5mm… I’m in total shock and not taking it very well :(. 3 months ago I had the mri of head and Cspine that I posted above that was read as normal. Now I get a ct scan and they note chiari… Did they miss it 3 months ago or is it just bad enough to see now? I’m honestly devastated but now at least I know what’s going on with me

[Stroud5393]

Selma it wouldn’t let me message you back. Do you know of any specialist near Memphis?

[selmaS]

you need to accept my friend request.....then it should work....I will look at our list, BUT you still need to research all the Drs as I add Drs that members report they have been to, treated by and liked..and I also remove Drs from the list if we get too many PM's telling us  bad experiences that land on the Dr........

[selmaS]

Here is the list for the state of TN....this list is not a referral nor an endorsement for those listed it is just a starting place to research Dr....the list is compiled by members here of Drs they have been to, treated by and liked......

Be advised you may have to travel.

TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
[phone]

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
[phone] (Office)