Just advised I have a spinal cyst...help

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Just advised I have a spinal cyst...help

Postby dmwoodfield » Mon Jun 11, 2007 6:06 pm

I just heard from my neurologist that I have a spinal cyst.
I was experiencing numbness in my arm and I was sent for an MRI to see if I had a trapped nerve in my neck.
During this MRI they noticed a cyst on my spine.
I am going back in for a more detailed MRI with a "dye injection" and also a brain MRI as I have been very forgetfull and unfocused since the numbness started.
I came back and searched for Spinal Cysts and really did not find that much info out there.
I found this forum and was wondering if anyone knows if there are many different types of cysts or do I likely have SM??
I would appreciate any feedback as this was a very unexpected diagnosis that just happened to me.

Postby cash71 » Mon Jun 11, 2007 6:41 pm

Its likely that you have a syrinx (the cyst itself) and syringomyelia is the name given to the disorder and its associated symptoms. Getting all your MRI's is a great start. A syrinx is caused by something and you need to find out what so you can treat it appropriately. 70% are caused by cm and I imagine that's why they are doing the brain MRI. Other causes are trauma, tumors or infection. Basically, "something" has caused a blockage in the flow if CSF around your spinal cord. The CSF then re routes itself into your spinal cord to get around the blockage. Hence the cyst. So you need to find where your blockage is.

It will be important for you to learn more about it as this is quite rare and you are going to run into a lot of doctors with a lot of incorrect information. You are going to have to take charge of your care and make sure that your are being treated by a doc. that knows what he is talking about. there is a list on the ASAP homepage under Medical advisory board or if you post what city you are close to someone may chime in with a suggestion.

A couple of websites to check out for more info. www.thechiariinstitute.com under videos. www.conquerchiari.org or the ASAP homepage has a lot of great info and articles too.

Good luck and welcome to the board, I am so glad that you found us. :D

Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby catfish » Mon Jun 11, 2007 7:42 pm

Welcome!! I'm fairly new to this message board as well, having also just been diagnosed with SM (syringomyelia). I was also shocked at the diagnosis - I had gone through a battery of tests (nerve conduction, vascular and 2 different MRIs) and nothing had shown up. I was sent for a 3rd MRI and that's when they saw a syrinx. I was blown away because I just expected them to say they hadn't found anything again, and that my symptoms would just go away in time. I've been spinning ever since!!

I spend as much time as I can on the internet and this message board, trying to find as much information as possible - there is some good stuff out there. I'm also frantically searching for a specialist so I can get some real information about my condition, and find out what caused it (as mentioned in the cash71 reply above - excellent information there!). I second the suggestion of checking the ASAP website and posting a request on this message board with your location - I did that, and the information I've received has been invaluable! I think what I have learned is that I need to be prepared to travel in order to get to a specialist...but hopefully you'll find a specialist in your area.

My next test is going to be to see if my syrinx (cyst) is a tumor...they haven't done that check yet, so it needs to be ruled out. That's the "dye" test you referred to, I think.

I have no idea yet what caused my syrinx, but I'm on the hunt to find a NS that can tell me!!

I wish you luck in your research - I feel like we're both at the same point in our search for information, so I sympathize with your "shock" level right now! Welcome again to this message board - this board has really helped me to stay calm these past 2 weeks. They're all wonderful people that truly want to help you - and they reply FAST! :D

Postby precious » Mon Jun 11, 2007 11:07 pm

Welcome to the board!!! I hope you will find this will be as big of a help to you as is it was to me i just found this board about 3 weeks ago. I was diagnosed in feb with my syrinx, the mri that i had was only of my lumbar back and cut of the sm at the tail end so i had 4 more mri's a 2 ct scans to also rule out chiari and this board has been a heaven sent to me. Any questions and concerns you have any one here is happy to talk to you about. We are all like a a long lost family that keeps growing. Mine is from t6-t-12 and i have the numbness in my hands and starting in my wrists, I only have SM no CM to go along with it. Make sure you sign up to have the free info packet sent to you and vistit the sites that cash listed for you she always has the best information I am not sure were she gets it all from. But welcome!
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Postby dmwoodfield » Mon Jun 11, 2007 11:49 pm

Thank you all for your input.
It is nice to know there are other people out there.
I had never heard of a spinal cyst before today.

I have my next 2 MRIs on Wednesday then have to wait until July 2nd to see my neurologist again. It is going to be a long 3 weeks.
I am off on vacation at the end of next week, so I hope I can put this aside and enjoy myself.

I am in the Phoenix area so if anyone knows of any good doctors that specialize in SM please let me know.

Regards Donna

Postby mac » Tue Jun 12, 2007 1:31 am

Donna, I just wanted to say welcome to the board. I know this all must seem like a big spinning merry go round to you. Hang in there and you will do well. There's a lot you can do to help with symptoms by putting some lifestyle changes into place. There are so many on this board who are going through what you are, and they will be able to help you in innumerable ways, just like they have for me!

I do hope you can enjoy your vacation, let us know how it goes!

yer new pal mac

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