[vicky429]

I am 29 and was just recently diagnosed with a syrinx cyst in my spinal cord.It started after the birth of my fourth child and he is now 5 months old.It started with a sore shoulder and the doctor thought it was a strained trapezius muscle I then started to experience numbness in right arm and hand and i dropped my baby one day because of it,so i go back to doctor and they send me to therapy.I went for about 5 sessions and the pain did not get better it seemed to progress.At one therapy session they put me in traction and when it would pull my neck up my right leg would involuntarily jerk so the therapist said he would not see me anymore until i went and got an MRI.I went to get an MRI and was in it like 30 minutes and the nurse pulls me out and says we are going to put contrat in you and i asked her why when my doctor ordered it without and she said because the doctor here wants it so i knew they saw something.Three days later doctor tells me no bulging or herniated discs but you do have a cyst on your spinal cord. I was stunned and scared.My doctor did not have any answers to my questions so i go to see a neurosurgeon in february.The syrinx is located at my c/6 to t/2 and is 8mm wide..Recently have been getting numbness in right leg and the sensation of ice water going up and down spine and now feeling sharp pains in my head that also feel like ice water running threw brain..I am scared and i am in pain trying to take care of a five month old is not easy with all of this going on so if any one can shed some light on this for me i would be truely grateful.

[Jomar]

hi Vicky -
I made a copy of your post and placed it on the Arnold Chiari Malformation & Syringomyelia forum- I think that one will have some help for you.

click this link to go to that forum-
http://neurotalk.psychcentral.com/forum71.html

and your post is here -
http://neurotalk.psychcentral.com/thread113325.html

[Hockey]

Hi Vicky and welcome to NT!

I'm not familiar with your specific conditions, but I know the members who are will weigh in with lots of helpful information.

Many of us here, however, do understand how difficult it is to raise a young family while dealing with a serious health issue. We're all ears if you need to talk.

Cheers

[vicky429]

Thank you everyone for your advice.I am really confused i have not been told i have Syringomyelia yet or CM. I am just wondering can the syrinx develop without these conditions??? And also i am starting to get sharp head pains and it feels as if cold water is on my brain and running down my spinalcord.Is this normal??? I am a little scared i may have CM because as a child i had terrible headaches in the back of my head that would make me cry and my pediatrician at the time did not know the cause.Also at 5 years old went through a bout or so that is what we called it where i could not walk..at all .My mother had to carry me and it lasted a little over 24 hours and went away as fast as it appeared.Does anyone have any insight on these symptoms or any suggestions.I would really like to know what is causing all of this.

[Sheri_TOS]

Vicky,

I can relate to some of your experiences. I was pulled out of my first cervical MRI in 2003 to have contrast added, too. At that time, I didn't know why. I saw my doctor to find out about the MRI and he sent me straight to a neurosurgeon. I have a syrinx from C3/4-C7. It was a stressful month between when I saw the doctor and was able to see the neurosurgeon. The ASAP website below helped me gain some understanding of the situation. The neurosurgeon ruled out that it was contributing to my problems and subsequent MRI's have only shown a slight increase in length and width (I think it started around C5-C7 but has grown to C3-C7). Yours sounds like it may be more problematic and your story has me concerned since I am pregnant. Could labor have triggered the increase in symptoms even though you may have had problems since childhood? I would definitely research the topic.

You may want to check out the following:

Chiari Institute located in New York
http://www.chiariinstitute.com/index.html

American Syringomyelia Alliance Project
http://www.asap.org/

I haven't researched this much in a long time but feel free to e-mail me with questions. I have a three year old and could only take care of him using one arm for the 1st two years of his life as the other arm couldn't tolerate any weight (shoulder surgery fixed that issue). So I understand limitations and not being able to take care of the baby as much as you would like/prefer.

[Jomar]

When I did a search about it I found this-

[What is syringomyelia? (sear-IN-go-my-ELL-ya)

Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control. ]

http://www.syringo.org/

[vicky429]

Hey sheri sorry to scare you but that is what mt doctor said triggered it because all symptoms showed up and got progressivly worse right after his birth.I do not like to hear however that the neurosurgeon did nothing for you. That leaves me in complete fear that mine will do the same and leave me to deal with this pain.I did however give birth to three children previously without any problems so i am not quiet sure if my doctor is correct,All i know is i am declining quickly and i do have good days without pain but most are bad with pain.I am on neurontin now and it seems to help some and an antidepressant because i did not want to get out of bed and care for my baby and that is not me at all.Were you diagnosed with syringomyelia?? Do you have to go back and get MRI's done to see if it has grown?? Please let me know and i am sorry to have scared you.

[Sheri_TOS]

No, you didn't scare me. I'd rather be prepared for what can happen and openly discuss it with the doctors. I can only imagine what you're going through right now. Your situation sounds far worse than I was when I was first diagnosed. My syrinx is small and monitored. If it was expanding then I think they'd be more concerned. Due to the location, they don't like to operate unless it is causing serious problems because it involves cutting into the spinal cord (not good but if it provides some symptom relief then it's worth the effort). This is why I wouldn't let just any neurosurgeon touch me if this was causing serious problems. I think your situation is different than mine and needs to be addressed now. If you don't like the answer you receive from the 1st neurosurgeon, get a 2nd or even a 3rd opinion. This isn't something to mess around with.

Since I've had this problem since at least 2003, I've grown "accustom" to it. I know it could get worse and when it does, I will be seeking out the experts - not a local neurosurgeon but one who deals specifically with this (the Chairi Institute in New York or elsewhere) quite frequently.

I also have a problem in the brain so I get brain MRIs every couple of years to check for growth of that cyst, too. The brain cyst isn't Arnold Chari Malformation as it isn't located at the base of the skull. This cyst is also something that they prefer not to do anything about unless it becomes too symptomatic. Given both cysts along with my other problems, I'm a frequent visitor to MRI facilities.

[Jomar]

Vicky i also placed a copy of your first post on the -
Arnold Chiari Malformation & Syringomyelia forum -
http://neurotalk.psychcentral.com/forum71.html


so check there for replies too.