I can only comment on myself. My symptoms were very sudden, although quite different from yours. I had the numbness and almost complete loss of use of my left arm for a couple days and heart attack type symptoms with the tightness in my chest, etc. Fortunately, my heart is actually just fine.

I deal with numbness and tingling on a daily basis in my left arm, hand. I have to make a lot more typing corrections than i used to, but I can still type, just not nearly as accurately and quickly as it used to be.

I have odd temperature sensations in my left hand as well. my left pinky currently feels like it's in ice-water, that feeling travels up my hand and into my wrist a little bit.

I certainly hope you find a surgeon who can give you options. One thing I started doing is going to a chiropractor. (my chiropractor is an MD with over 6500 hrs of medical training) Before you freak out, think about it, the reg med docs havent been able to help out. take a look at your mri there and compare it to a normal side x ray of your spine. It looks like where the syrinx is, you have some spinal deformation. I have the same issue, but the vertebra where my syrinx is was acting independantly of the rest of the vertebra. At least see if you can get x-rays of you with your head up, chin forward, chin back to see if your spine is pinching your spinal cord when you move it.

Also - lay on your back at night! I have slept on my belly my whole life, sleeping on my back has helped a bit, i think.

If anyone in the Spokane area is interested in seeing the doc I'm seeing, his name is Dr. Wellwood, he's in Medical Lake, WA. He is incredible. First doc I ever talked to that knew exactly what a syrinx was and wasn't afraid to help me.

okay..so, I have been misdiagnosed for over a decade. But now that I know...thinking back....and to the present...

Mine started with, what I thought was a 'pinched nerve' between my upper spine and shoulder blade. (1995)My right arm would go numb and throb when I picked my kids up or brushed my hair. Weakness. The brush was too heavy. ( I was diagnosed with depression and put on zoloft when I saw the doctor about it....didnt take that for long cuz it made me dizzy)

Started having really bad dizzy spells and almost fainting a little less than a year after that. But I have to go back half a year...got a cough that lasted a long time. About 6 months. I worked in a hospital. They thought I was allergic to the powder in the gloves. Well, when I would cough (now that I know what it was) I got the syrinx headaches. Felt like my darn head was going to pop off my neck and my brain-stem was ripping!!! ( yes, I even described it that way to the docs)

One day, May 8th 1997, I was driving and it happened and I blacked out. Not long only for a second. I pulled over and it kept happening. Went to urgent care. For a few months after that, had a lot of tests. Was actually diagnosed with seizures for a little while. Then when the depicote and tegretol didn't work.... I was diagnosed with Anxiety disorder.

The whole time I complained about the 'pinched nerves' and argued NO...i get dizzy...yes I felt like I couldn't breath and my heart had PVC's and got fast..... and yes, I would get anxious..but only cuz I didn't want to pass out while I drove.

Finally a Physicians assistant sent me for xrays where they discovered my neck was straight up and down and didn't have a natural curve. He tried to get approval for me to have an MRI. The clinic/insurance said no. (that PA resigned shortly after that, because turned out they got paid bonuses for not recommending expensive test for patients)

The numb arm went in and out. coughing and having difficulty swallowing progressed. Fairly quickly.

I was told all sorts of things though out the years...stiffness and pain..I was getting older and menopausal(though test always came back i wasn't. ) so it must be depression cause depression causes body ache. etc etc

Last year is when My right arm went numb with no relief. April 09. Took til Feb 2010 to get MRI's. May 11 I finally got into the neurosurgeon. That's when I found my whole right. side of my body is numb pretty much. My diagnosis Chiari Malformation and Syringomyelia.

The past 2 months...things like, feeling like I have a corset around my chest with someone pulling it tighter. (comes and goes) Mothers day, I was in ER thinking I was having a heart attack. The pain and numbness is now starting and progressing really quickly on my left side of my body. Too weak to open a peanut butter jar or lift the 5 pounds I'm allowed. Getting winded just walking up the stairs in my home I have walked every day. My eye sight....
It's all coming on really fast now...the past 2 months.

2 months ago, It took me less than an hour to clean my kitchen (ten years ago would have been 5 minutes) Now takes me 3 days.

I lose my balance a lot. That did happen every once in awhile before...now it happens almost every time I walk. If I walk slow and casually I can manage. If in a hurry forget it.

So, for me, it is like each 'phase' comes on quick. Then learn to live with that. Then the next phase comes.

Something I forgot to mention: When i cough or sneeze (sneezing is 10x worse) i get SEVERE pain in both of my shoulders, arms and hands to the point where i can't use them for a minute or 2. Sneezing is hell.

i've had many of these symptoms, but for me they seem to come and go. Currently, along with the ongoing pain and stiffness on my right side and shoulders, today, simply walking up stairs felt like a chore, like i hadn't walked in weeks!

i had the tingling and numbness last year for a few months, but since then it hasn't been consistent. i also get dizzy from time to time as well...

i'm hoping the walking up stairs thing doesn't stick around...

anyone else have symptoms come and go??

I wouldn't say my symptoms come and go, but they do get more severe and less severe at times. After a while, I stop to notice it, but if i try to do something intricate with my left hand, I notice it and typing, I notice it significantly.

I have severe lower back pain to a surgery as well, but sometimes, if I focus on something else, I don't notice it as much or I can ignore it more. I'm thinking it's a similar thing.

My symptoms turned out to be in phases like nyghtwhysper, i get a new symptom or symptoms and i get use to them, then a new phase comes in.

Because I've never had any symptoms before they seem bad until i read what other people post what their suffering. I am thankful my condition was caught early enough and my sympathy go out to those who are truly suffering.

Wow this site is really starting to clear alot of medical mysteries up for me that i have had my whole life.I was dx with Neuro cardiogenic syncope back in 2001.I would get dizzy and a racing heart and almost black out.My heart rate was 80 a minute when i was sitting and just by standing up it would jump to 120 and my blood pressure would drop.Then i was dx in 2003 with Raynauds sign because my hands and feet were always cold and turning red and purpleish blue,even in the summer.Then for awhile they thought i had arthritis and was tested for Lupus because i would get joint pain and swelling and that all came back negative.I would also get little bumps on feet and hands and my spine,they did not hurt just were kind of itchy ..So i had allergies!!! But now it all makes sense.I had the Syrinx back then and did not know it and when i got pregnant with fourth child in 2009 and gave birth to him in August 2009 it finally made it's appearance and showed it's ugly head.I too was dx'd with pinched nerve about 4 months after having him and it was this darn syrinx!!! I finally was getting so bad with pain and numbness symptoms they gave me an MRI in January 2010 and found it. I have a shunt that was placed in April of 2010 and i am far worse now..But that is another story.But as of this time i have a hard enough time trying to care for my one year old so i know i could not get a job .I did work as a housekeeper and was in childcare so i know them jobs are no longer doable for me.I am trying to get on SSDI right now and am just waiting for the decision.I hope this helped some and feel free to write me back or give advice.Thank you and god bless.

Would like to hear your experience of getting a shunt and why things have gotten worse. The info would be valuable to those who might have to get an operation.