Is this Chiari?

[footylad]

Hello,

I have had a range of diffuse symptoms for some years and am concerned that my symptoms may indicate Chiari.

From the potential list of Chiari symptoms available I have the following:

Dizziness
Tingling scalp
Pulse in head
Fullness in ears
Visual disturbances, inability to focus, blurred vision
Tingling / numbness in the extremeties
Vertigo from position change or sudden standing
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Neck spasms
Insomnia
Swaying
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Poor blood circulation / cold hands & feet (I have diagnosed Raynaud's)
Pressure in ears / ears feel stopped up
Nausea
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades (I have sunburn sensation on back)
Popping / cracking sounds in neck or upper back when stretching
Dizziness
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Skin problems

I am on an NHS waiting list for an MRI scan. Very worried and not sure how to manage these symptoms in the waiting period.

Grateful for any advice.

FL

[Spaceystac]

Do you have any past medical records and history? You could go through and see what you find, maybe old x-rays that show and degenerative changes to your spine or scoliosis.
  I also have positional issues with my head. I have passed out 2 times while my head was down and I was under stress.  The first time I was in to get a bone scan. They injected me with dye on my forearm by my wrist. They missed the vein and it was  swollen, I had my head down looking at it, my heart was pounding, I was probably holding my breath to. The second time, I had a belly button piercing and was getting a new one put in. So I was looking down at it, next thing I knew I was waking up on this guy. My mom always said "there's something wrong with your neck"
I also have a tingle and numb sensation in my hands, worsening when they are pruney from showering. And certain fabrics and textures are like nails on chalk board.
Stacey

[selmaS]

I agree with Carolyn u should be tested for those other conditions.....I was and that is how my chiari was found .....

But, many of ur symptoms do support a possibility for a syrinx.....and like Carolyn said Chiarians r prone to have other autoimmune issues and connective tissue disorders...like Hashimoto's thyroiditis, Ehlers-Danlos, De generative disk disease, spinal stinosis to name a few...so do see that ur drs test u for these and rule them out.

"selma"

[*Stormy*]

The wait is so frustrating...

My advice.. keep looking into other things in the meantime. For example, the sunburn thing could indicate lupus so ask for an ANA test. I am just getting tested for those things myself right now. Also, have you had any thyroid testing? Seems to be very prevalent in people with CM to be hypothyroid.

A lot of other things run with CM too...

Carolyn

[footylad]

Thank you so much Carol.

My symptoms have been particularly worrying this week:

* Dizziness
* Vision problems (blurred, focusing etc)
* Weakness in left side (hand and foot)
* Sunburn sensation

It looks like I will have some months to wait for the MRI scan.

FL

[*Stormy*]

Don't worry I got the diagnosis of anxiety over and over again...it seems to be the safety net for Dr's when the don't really know what is wrong with you!! Funny thing is that since I got a diagnosis and had surgery I have had nothing like the anxiety and depression that I had before so I like them to explain that one to me!! And to think of all those years putting chemicals into be my body that they kept prescribing me (since I was 15!!)

I have the same symptoms as you describe and on the same side. That was one of the first real indicators that there was really something wrong...before it was just the headaches and throat problems. It turns out that my tonsils were lower on the right side of my brain (nerves cross at the brain stem) which is why my left side was affected first. As I told you before, not knowing what I had, I did activities that caused mine to progress into my legs and other side so be aware of what you do!! Hopefully not scaring you but if I can prevent someone from making my mistake....

As for the headaches...I have always wondered about that too. I definitely had headaches a lot but mine were primarily behind my eyes and top of my head with a lot of facial pain. After several months of other symptoms I did start to notice pain at the back of my skull but the pain in the front of my head was still the worst and when I get headaches now I still feel them the most there. So, what I'm saying is that you don't have to have the "signature" headaches to still have Chiari headaches... My theory is that the pressure focused further down on my spine so I didn't maybe have as much pressure as some at the back of my head.

I am glad you are getting the MRI, I hope it's soon!! Just remember to ask for copies of the pics and reports as some radiologists will site Chiari as "incidental" and you won't even be told about it!! It has happened to many members including myself (I lost 5 months that I could have had a diagnosis!!)
Good luck...let us know what the MRI finds!
Carolyn

[footylad]

Hi cmoeller and rod44,

Thank you for your posts.

I have not had the signature headaches that come with CM. My most recent GP consultation ended with a referral for an MRI and a diagnosis of anxiety which is inacurrate; my only anxiety is triggered by the symptoms rather than the anxiety being the symptoms.

I also have numbness down my left side (scalp, face, arm, weak hand) - do others have similar symptoms?

FL