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]

I have an iPhone so I don’t think I can upload any photos...

[Stroud5393]

One of my main problems right now is shortness of breath which I couldn’t really find anything saying chiari could cause real breathing issues.

[AnaLyze]

lack of oxygen ... especially while sleeping. I couldn't even speak at time due to lack of oxygen. My husband grets now that I've found a treatment for this...lol. With most Chiari patients, TMJ come along with it. While sleeping the airway is not properly open (due to small airways due pressure from Chiari malformation). A TMJ doc will have patients get xrays, evaluate and mathematically determine and draw how your jaw should be set for proper airway flow. An acrylic mouth guard will be designed for sleeping, to keep your airway open enough. This gave me 75% life improvement. Lack of oxygen at night damages esophagus, weakens heart and lungs. Fortunately for me my kids all took many science and physiology in H.S. and college, I'd read their material and do research. I'm impressed with how well I'm doing.

[selmaS]

Hi and welcome to the Chiari forum.

It is very possible to have Chiari even though you do not have a DX. First, request copies of ALL testing you have had including the reports....for the MRI's you have, yes you can post  to your profile page....make sure no personal info is included......

[Stroud5393]

Every time I try to post the pictures it says unexpected error occurred?

[Stroud5393]

Another symptom I’ve had the past couple months is I get this piping sounding the back of my head like fluid popping I guess?

[Stroud5393]

How would I go about posting pictures? I don’t have the report but I remember it saying everything was normal.  

[selmaS]

I am not sure if there is a glitch if you are getting an error message.....but you would have to upload the pictures to your computer, and the upload to your profile page....if you continue to have issues, scroll to the bottom of the screen and click on contact us.....they should be able to help.

[Stroud5393]

Thank you Selma. Do you think my symptoms could be caused by chiari?

[selmaS]

Yes it is a possibility BUT there are several related and several non related conditions with similar if not the  same symptoms which is why it can take time to get a DX......hang in there but keep pushing for answers.

[Stroud5393]

I have the official report of the MRI. It says MRI the brain and internal auditory canals without and with enhancement.
Technique:  images of brain and I a C‘s performed without and with enhancement with infusion of Omniscan 15 mL and imaging at 1.5 Tesla, using T1W, T2W, flair, and diffusion – waited acquisitions and  including thin slices through the temporal bones.

Findings: the seventh and eighth cranial nerve complexes are normal and symmetric and configuration in signal intensity, and there is no evidence of mass lesion or enhancement abnormality involving the internal auditory canals or cerebellopontine angles. The brainstem  cerebellum  are unremarkable. Above the tentorium, the intracranial parenchymal structures are normal in  configuration and signal intensity in there is no evidence of mass lesion, mass – affect or cerebral edema, and no enhancing lesions . No extra-axial fluid  Collections or masses. The ventricular system is normal. Normal enhancement of dural venous sinuses. No restriction to defects with the fusion imaging. No aeration abnormality Of the mastoid air cells or paranasal sinuses.

[Stroud5393]

But on the mri I can see my cerebellum tonsils and they look to be below the foramen magnum.

[selmaS]

Do you know what the MRI was done to look for? I mean was there something the Dr felt was the issue? If so, the radiologist may have only been looking to rule out that issue/s.
So you have not had a CINE MRI or  MRI of the cervical, thoracic and lumbar spine?

[Stroud5393]

I’ve never had the CINE MRI but I have had the cervical mri but I was around 2 to 3 years ago.

[selmaS]

Do you have the report of the MRI on disk?

[Stroud5393]

Not the cervical I could probably get it though I have the brain mri on a disk

[selmaS]

When you request older reports and MRI's do it from the facility not the Dr as most Drs will charge you, but the facility shouldn't. Going forward just request copies when you sing in for the testing.

[Stroud5393]

Hey Selma I posted a photo of one of my pictures on my page. Its not a great one but doesn't my tonsils look low?  

[selmaS]

Not being a medical professional I can not say if you indeed have Chiari as that is the malformation of the skull and I do not know how to read a MRI for that, but it does appear to have a possible CSF obstruction due to a cerebral tonsil herniation.

[Stroud5393]

Does it look like chiari?

[Stroud5393]

Is this still active?

[selmaS]

Hi , sorry I didn't get back to you on this....I was in the hospital with my SIL taking care of her....I will take a look

[Stroud5393]

Yeah I’ve looked at so many mri pictures on the web and mine definitely doesn’t look like the normal ones. Couple things I haven’t mentioned which I didn’t think could be related was off and on nausea and diffulty swallowing. So this really could be chiari?  What do I do from here can I go straight to a neurosurgeon or do I have to go to a neurologist first?

[selmaS]

It depends on your medical insurance and how it mandates you handle specialists.

[Stroud5393]

I’ve been dealing with progressing symptoms for years this has to be it because I’ve had so many other tests done and ruled out a lot of things. This all started back In like 2012 I started having like these spells where it felt like I was gonna black out which doctors claimed was panic attacks.

[selmaS]

Chiari can also cause us too have anxiety and not because we are anxious.......May I ask, did you have any trauma to your neck or head around the time the symptoms started or just prior?

[Stroud5393]

I was in a four wheeler wreck when I was 16. I rode a big hill and it came back on me. I had someone on the back that took a lot of the damage but it busted my face pretty bad got 13 stitches in my chew I and eyebrow.

[selmaS]

that could have triggered your condition /symptoms.....

[Stroud5393]

Cheek

[Stroud5393]

Hello it’s been awhile since my last post. I’ve been doing a lot more research and it’s looks like I may have basaliar invagination are you familiar with that? Does it look like that could be the case in my picture?

[selmaS]

Hi yes I am familiar with basilar invagnation.....I am not medically trained to spot it on a MRI , sorry.......But to your additional comment below, yes brain stem compression could lead to shortness of breath.

[Stroud5393]

Could my shortness of breath be due to brain stem compression? I’m also constantly lightheaded now too

[Stroud5393]

I had another mri of my brain and cervical spine 2 months ago in the er which was normal according to the report.  Wouldn’t you think they would have saw it on the cervical mri? Here are the reports.

EXAMINATION: MRI BRAIN & STEM WO CONT, 3/20/2018 10:20 AM, MR180009127
CLINICAL INFORMATION: Loss of fine motor skills, facial numbness, tremors
COMPARISON: None
TECHNIQUE: Multiplanar/multisequence imaging of the brain was performed without intravenous contrast.
FINDINGS: There is no restricted diffusion to suggest acute ischemia. There is normal appearing anatomy at the craniocervical junction. FLAIR imaging demonstrates no focal parenchymal signal abnormality. There is no midline shift. Normal void signal is present in the internal carotid and basilar arteries. There is no evidence of recent hemorrhage or a mass. The visualized paranasal sinuses and mastoid air cells are clear.

EXAMINATION: MRI SPINE CERV WO CONT, 3/20/2018 10:20 AM, MR180009128
COMPARISON: None
TECHNIQUE: Multiple pulse sequences were performed in the sagittal and axial imaging planes without contrast.
FINDINGS: The cervical vertebral column demonstrates normal vertebral body height overall marrow signal and alignment without fracture or listhesis. Disk spaces are well preserved. The cervical cord is intrinsically normal. Cerebellar tonsils are in a normal anatomic position.
C2-C3: No focal disk herniation, canal stenosis, or foraminal narrowing.
C3-C4: There is a minimal left uncovertebral joint hypertrophy. No significant foraminal narrowing or central canal narrowing.
C4-C5: No focal disk herniation, canal stenosis, or foraminal narrowing.
C5-C6: No focal disk herniation, canal stenosis, or foraminal narrowing.
C6-C7: There is very mild posterior disc osteophyte complex which is not cause significant central canal or foraminal narrowing.
C7-T1: No focal disk herniation, canal stenosis, or foraminal narrowing.
The facet articulations throughout the cervical spine are grossly normal in appearance.
IMPRESSION: Minimal cervical degenerative change without significant central canal or foraminal narrowing. Normal appearance of the spinal cord.

[Stroud5393]

From my understanding the brain stem should be completely straight right? In basilar invagination it bends forward I believe. If you look at the picture of my mri it’s bent down... I’m so lost at what to do I know something is wrong with my brain structure or something. I have daily head pressure and pain in the back of my head, near faint spells, and the smothering sensations making me feel breathless.  

[selmaS]

I understand your frustratons here....I really do. It has been painfully aware to me when I had MRI's done in the past that some radiologists only look for what they are asked to look for, when one found my Chiari I was told he was being over zealous and looking in areas she didn't need to look..Thanks God he did! So, the fact remains those that looked at your MRI are not qualified to recognize or know to look for things like Basilar invagnation....yes the brain stem should be straight....any bending or kinking of it can indicate issues for sure....
Many of the true Chiari specialists will review your MRI and some even do skype reviews with you....some may charge a small fee for this while others do it free...(with the prospect of you being a future patient)
My best suggestion is to find a Dr that is a Chiari specialist that you can travel to and your INS will work with to get the answers you need.

[Stroud5393]

Selma thank you for all your help I truly appreciate it.... My biggest problem right now is I have no health insurance which makes everything really difficult :(. I’m currently going to a clinic that accepts patients with no insurance. I’ve mentioned to the doctor I’ve been seeing there about chiari and he just totally shoots that idea down. My only Chance at this point would be for him to refer me. I mentioned at least needing to see a neurologist and he just don’t think I need to see one despite my daily headaches head pressure lightheadedness and breathing issues...

[selmaS]

I do understand the no INS issue....One of the Chiari specialists I saw said that those without INS should go to the Hosital these specialists are affiliated with through the clinics as they most likely will see one of them as opposed to just a NL or NS on staff.

[Stroud5393]

I’ve been to the hospital he’s affiliated with but how would I get to see him? The er doctor just runs blood work and at the most does a ct scan and send me home.

[selmaS]

From what I understand they too cover the ER or clinic's ....not sure how you end  up with one unless the attending ER Dr calls on them for additional help.

[Stroud5393]

I also found out a month ago my testosterone was really low, which my doctor ran other blood work trying to find a cause. If a have a basilar invagination couldn’t it flatten my pituitary gland causing the low testosterone? I am seeing a endocrinologist in 3 weeks about the testosterone maybe he will refer me to a neurosurgeon..

[selmaS]

It is possible to have the pituitary gland affected so any hormone level could be altered....hopefully you will get to a NS but not just any NS.....one well informed and experienced with these issues/conditions. Fingers Crossed.

[Stroud5393]

There is one neurosurgeon in Memphis by the name of Kenan Arnautovic at Semmes Murphey clinic that has chiari in his specialties I wish I could see him somehow but they require a referral..

[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)

[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]

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]

Please anyone?

[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]

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]

Hi Selma is it possible I have craniocervical instability? I did notice on my last mri my c-1 spine was touching my brain stem. I read that’s it’s more common with EDS Hypermobility which I definitely don’t have. Or could it be possible I have a spinal leak causing the chiari

[selmaS]

How do you know you do not have EDS? I was under the same assumption when I first heard about EDS and felt none of the symptoms fit me except for the easy bruising, and being slow to heal....I never considered myself hypermobile....BUT I am....and I was very surprised to get the DX.....CCI is a related condition to EDS, not sure if it is something that could be due to a leak or injury and not EDS......

It is very possible to have a leak cause the tonsils to herniate.

[Stroud5393]

Well I thought with EDS you could bend your fingers and joints in awkward positions. I can’t do any of them. Should I bring it to the neurologist and neurosurgeon attention?

[selmaS]

EDS is NOT just having hypermobile joints....so do let a Dr exam you and relate that info to you.Yes !! make sure it is ruled out....as it can cause so many other issues and can affect any and all surgical outcomes should you have it and not know.

[Stroud5393]

Isn’t there a different type of doctor o should see to be evaluated for EDS? A rheumatologist or something?