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

[footylad]

Thanks Carolyn,

I have weakeness in the upper eyelid of my left eye. My optician noticed it and is sending me for a proper eye check.

[*Stormy*]

When my eye issues started..it was primarily on my right side and that is still the worse side but I do have issues with both now. I think a lot of us do have problems with one side or the other...I found out later that my herniation was bigger on the right side.

Carolyn

[footylad]

I'll ask my GP about the report.

Anyone with Chiari ever have eye problems on one side?

[*Stormy*]

I would definitely request the report from your GP...mine had no problem in doing that..but I'm in Canada. Be aware too, that somethings may not even be on the report, my chiari wasn't noted and was recognized by my NS when he saw MY copies of the MRI pics.
Honestly, you NL sounds about as much of a jerk as mine was. He told me things were normal on several tests but when I finally got the reports I saw there were abnormal things listed that he didn't even bother to tell me about.
Is there any way that you can get a 2nd opinion from a NS? Most of us have had much better luck with them!

Carolyn

[shanmomof3]

I would try asking first and if that doesnt work then you can request it under the freedom act.

[footylad]

Thank you everyone who responded.

I also found the 'nothing serious' statement odd. Does that mean that there is something moderately serious, or nothing at all? Could he not have said 'Your scans were clear' - I might ask my GP to provide the written report, is that the way to go about it, just an informal request or should I send in a Freedom of Information request?

[Penguins57]

Hello! (: I was reading through some of the conversation. I am 1 month post op, and before my surgery, I was completely weak in my left arm and legs. And I lost feeling in random body parts. Sometimes I would be walking to class, and my leg would go numb and i was have to stand until the feeling came back.
~Good Luck!~

[rod44]

In the republic you can get a copy of your Medical Records under the freedom of information act, you do not need to give a reason as to why you want a copy. I dont know if this is the case with the NHS but I would imagine it is.  
You need to apply in writing.

[*Stormy*]

Hello again,

I know in Canada it is your right and I ABSOLUTELY would get copies of the pics and written report. I paid privately for mine so I got the pictures b/c of that but then I went to my GP and got all the other reports for the testing I had done.

I don't like this "nothing serious"...so what does that mean? That there is something but he is deciding the severity??? My NL did that to me, didn't even tell me about the Chiari and let me suffer for another 6 months.

I can't urge you enough to do this...it is so very important..you will be amazed at what the DRs don't tell you..I was!

Carolyn

[footylad]

Is everyone entitled to access the text of the report?

[rod44]

The NS I am attending by his own admittion knows very little about my condition so I decided I need to get a second opinion. I am still waiting for the Hospital to process my application.  

[footylad]

It's possible I might have to do that. What made you request a copy of the report?

[rod44]

Can you get a copy of the MRI report? I have had to apply under the freedom of information act, is it the same with the NHS?

Ray

[footylad]

I met with my neurologist. He said the scans of my brain and spine showed 'nothing serious'. I asked what that meant exactly and he said 'You should put this to bed now and stay away from doctors'. The consultation lasted about 3 minutes, no report, no notes, nothing.

[footylad]

Thank you guys.

[selmaS]

Also Raynauds can be Ehlers_danlos...I was DX'd with Raynauds yrs ago....and with my eval with my NL and NS at TCI I was informed it was EDS not Raynauds...but they r similar in how it appears symptoms wise.....

Connective tissue and Autoimmune disorders r drawn to us like a magnet...or us to them , I am not sure which...but do get checked for as many as u can....and talk  with rod44 to find out how to go about getting things done in Ireland.

"selma"

[*Stormy*]

Hi again!

Not sure how this will help but the sphenoid sinus is a large air cavity in your skull (below the pituitary gland) and is the largest one that communicates with your nose. I would think it being enlarged would confirm that you have sinus trouble.

FYI- Reynaud's syndrome can also be an indication of Chiari and thyroid trouble!! I always have freezing cold feet...my hands get cold as soon as I go outside or touch something from the fridge. Sometimes my whole arm goes cold while the other one is body temp!

I know that doctors don't want to investigate but they should!! You can get a simple blood test for lupus called ANA which will also see show some other autoimmune diseases and you can get a RF done for Rheumatoid Arthritis. I just asked my doctor to do it and it was as easy as her filling out the blood rec. So, there is really no reason for them NOT to do it :)

Carolyn

[footylad]

This is great advice.

I am in Northern Ireland which is part of the NHS system. Requesting tests like the ones mentioned is very new to me and I have been told to wait for the MRI scan as they will not undertake any blood tests until that happens (which could be 6 months away). Are these tests something that my GP could undertake or would they have to be undertaken by a consultant rheumatologist or neurologist. I had a scan about 6 years ago and was told it was normal apart from an 'enlarged sphenoid sinus' - but they never explained what that was.

I have been diagnosed with Raynaud's phenomenon (mainly in feet, which I though was from football)..the GP said most cases were benign and didn't believe it was necessary to investaigate to see if the Raynaud's was secondary to an autoimmune condition like scleroderma/lupus or other.

Happy for any opinions / feedback.

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