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’m really short of breath today and it’s teakly worrying me :(. I know it had to be my brain stem being compressed could I be near respiratory failure?

[Stroud5393]

Selma have you heard of anyone with chiari having this happen to them?

[Stroud5393]

My heart is beating really slow today too...

[KerriC1]

Hi. I have chiari and was decompressed 3 years ago. I also had a kinked brain stem and had shortness of breath and heart palpitations. I know how scary it is. Have you checked you BP and pulse rate?  

[Stroud5393]

Well right now I can’t check my bp I don’t have a cuff.. My heart rate is 92 at rest. Did you ever get a burning sensation in your ribs with the shortness of breath?

[KerriC1]

I did get burning sensations. My understanding was the nerves are compressed so they misfire and cause an array of issues. My left rib constantly hurt and was hard to get a deep breath in. I would hold my rib cage as if it were broken but it wasn’t.

Your resting heart rate is high so please keep an eye on that. I also have orthostatic hypotension and it causes my BP to drop very low and heart rate to increase to compensate for the low BP. If you are having breathing issues though, you should go to the ER

[Stroud5393]

I’ve been to the er multiple times when my breathing gets bad and they just shrug their shoulders and say they don’t know... Maybe it’ll be different now that I know I have chiari maybe they will do emergency surgery?

[KerriC1]

If your breathing problems are worrisome enough youshoulf go. Better to be safe than sorry. And knowing now you have chiari may help but keep in mind the medical profession isn’t always well versed in it so they may still dismiss you. It’s happened to me countless times

I’d be very cautious about any emergency surgery unless it’s truly life or death. With this type of surgery you want a specialist who knows exactly what he or she is doing.

[Stroud5393]

No your right I don’t want just anyone operation on me that’s for sure but I was just saying if it is bad they may have to do emergency surgery.

[KerriC1]

I remember being very scared and confused when I got my chiari diagnosis. I found this group which I learned tremendous amount of info from. Prompted me to seek out a specialist. He first one I saw was amazing and said I needed surgery. I got scared and didn’t go through with it. Waited about 2 years and things went crazy. Of course my NS had retired so I was forced to find another one.  When I found out my brain stem was kinked I was petrified. So I completely understand your fear and frustration.

Just try to take it one step at a time. The process is a long one unfortunately and you have to be sure all things are tested for and ruled in or out.

[Stroud5393]

Thank you for your responses I really appreciate it. I have had a lot of testing on my lungs and heart and numerous other things everything was all normal until around three weeks ago when I went to the er I felt very lightheaded and disoriented and short of breath that’s when they saw the chiari on a cat scan 5mm. I see a neurologist in 2 weeks and I pray he can send me in the right direction... I don’t have a whole lot of choice in who I want to be my doctor because I don’t have medics insurance..

[Stroud5393]

So it’s probably pretty safe to say the chiari is what is causing the shortness of breath then considering all that I have had ruled out.

[KerriC1]

I would say chiari is a big culprit. But remember that it can come along with other conditions as well. I also have EDS and my NS who did decompression used a bovine patch. Since surgery I’ve been diagnosed with high icp and that causes severe headaches dizziness vision issues and things like that.

It’s something that unfortunately I didn’t expect to go through but now I know and can move forward. Finding the right dr and getting the right diagnosis makes all the difference.

I’m sorry you’re dealing with the confusion and fear. I know that feeling all too well

Just know that this group is a wonderful place to turn for support and info. Even if it’s jusy venting

[Stroud5393]

Thank you so much Kerri and your right this board is awesome. I’ve wondered about having EDS but I’m not very flexible or anything so idk if I have it or not.

[Stroud5393]

Another thing I've noticed is when I drink too much alcohol my symptoms are intensified for days after. I don't drink very often but when i'm drinking I feel better but I guess it's just dampening my symptoms until the next day and its much worse.

[KerriC1]

You can very well have symptoms of EDS other than just hypermobility. You can google the breighton scale just to get some info. It’s worth a shot and go from there.

I would say the drinking would deff play a role in exacerbating symptoms. Might dull the pain while drinking, but for sure will make you miserable after

[Lisagchiari]

Please have your Parathyroid levels checked ! Parathyroid,  not thyroid.

[Stroud5393]

Why does that cause low testosterone?

[Stroud5393]

Another thing I have to get ruled out is a pituitary tumor because my low testosterone.

[Stroud5393]

I’ve been having a lot of issues with my muscles tightening up and gett cramps too. Is that apart of chiari or could that be something else you think? I’ve also had muscle fasiculations or twitching would be the easier word. I’ve had the muscle twitching since this all started years ago I was worried about ALS for the longest because of it but I had emgs and stuff that were negative.

[selmaS]

Muscle cramps can be a vitamin issue OR EDS related......since those with EDS do not have the amount of collagen to hold ou joints together, our muscles make up for it and they can get over worked and very tight....and cramp. Have your Drs test you for B12 levels, Vitamin D, magnesium and potassium.

[Stroud5393]

I’ve had them all tested recently and all were normal so I may have some kind of muscle disease to then..

[Stroud5393]

The tightness and cramps usually happen in my thighs oddly but can happen other places too. I do have a lot of lumbar back pain recently maybe its related to that?

[selmaS]

it's possible you could have a pinched nerve in your back causing it....??Hard to say.....But I do know that low levels of vitamins as well as EDS and pinched nerves can cause what you describe.....

[Stroud5393]

I'm feeling really weird today.... I'm getting really lightheaded and getting this really weak feeling its so hard to describe.. It feels like its hard holding my body up and I just don't feel right. Do you think I should go to the ER? I know you've got a lot of experience in chiari when is the time to go with chiari.

[selmaS]

Hi sorry I wasn't on line sooner to see your post....how are you doing?
The ER is not a great place to go unless you have severe pain or breathing issues since most times you will get a Dr not at all familiar with Chiari and it's many symptoms.

[Stroud5393]

I’m ok I guess just worried about everything. I don’t fallen into a deep depression about it honestly... I’m most concerned with if my brain stem is being compressed. I do have shortness of breath off and on and today my hands are tremorimg really bad... I posted a pic of my mri I had three months ago it should be on my page.

[reelman]

I have Chiari, and had decompression surgery in 2012.  The tremor can definitely be related to Chiari.  I also had times when my B12 was low, which causes a form of anemia that leads to shortness of breath.  Both that and Chiari could be causing that.  Might be worth checking out or just trying a supplement.  From what I understand (selmaS correct me on this if I'm wrong), your body will shed extra B12 so it can't hurt.

[Stroud5393]

Thanks for the reelman i actually just had my b12 checked and it was within normal limits. I’m still taking a 1000 mg of b12 everyday along with 2000 of vitamin d3 because it was low. I ended up going to the er last night because I was feeling so bad. They only did a ct scan and told me to go to the med next time because they have neurosurgeons that can evaluate me. I see a neurologist in 2 weeks but I don’t know if I can make it that long..

[selmaS]

@reelman- I found this regarding B12

Vitamin B12, or cabalamin, is water-soluble, meaning the renal system filters the vitamin from blood along with water, so it is difficult to build excess. If you do build an excess of the vitamin, it is not necessarily negative: The body can store enough B12 in the liver that those with maximum stores can go years without ingesting it at all. It still is possible to greatly exceed even the amount that the body can store with vitamin supplements, given that the body uses vitamin B12 in very small amounts usually measured in micrograms.

source: https://www.livestrong.com/article/407648-how-to-get-rid-of-excess-vitamin-b12/

[Stroud5393]

Hey Selma did you get a chance to look at the mri I posted on my page?

[selmaS]

Hi...yes I did take a look but I am not that good at reading them...I can say there is a herniation and a kink or crooked brainstem....but to what degree I can not say.

[Stroud5393]

That’s why I’m worried my shortness of breath is the brain stem being compressed :(

[Stroud5393]

I just don’t feel myself like I feel so disconnected and everything seems like a dream. Is this common with chiari or could this be chiari progressing?

[selmaS]

Just talking I used to hyperventilate...and get that disconnected feeling....I only get it very rarely now...so I am sure it was a Chiari issue.....finding the right Dr is key!!

[Stroud5393]

Well o see a neurologist in 2 weeks but I don’t know if they are familiar with chiari.. I don’t really have a choice with no insurance what all should I mention to them. Should I tell them to do a CINE mri and spinal mris? I don’t wanna step on their toes of nothing you know.

[selmaS]

I know what you mean....A NL is the one that does all the testing .....many Chiari NS's do have a NL that works with them....I know some are open to hear what you know and others feel they know it all and will not be ope to hear your thoughts....but you can offer concerns and ideas past them to see if they could do a CINE MRI and check your spine for other issues....realistically you want a brain MRI, a CINE MRI, a cervical MRI, a thoracic MRI and a lumbar MRI......

Also ask about EDS.....see if they are aware of the connection between the two.......

Another possibility is to have the NL send copies of your MRI's with a Chiari specialist for a consult....again ,you need one that is OPEN.....

Good luck

[Stroud5393]

Selma I really appreciate all your help.

[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?

[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)

[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 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]

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]

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]

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

[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]

Cheek

[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]

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]

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]

Does it look like chiari?

[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.