Help please..

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Help please..

Postby socialdkitty » Tue Nov 24, 2015 10:05 pm

I was dx with my syrinx sometime around 10 years ago. At that time, I went to the Chiari Institute for advice. My syrinx is not due to CM, it is due to a car accident. I was told without further trauma, it is so small it would be unlikely to result in paralysis, which was my biggest fear. At that point I kind of quit researching and tried to forget about it.
I'm now 34 and I feel like I'm 90. I stay hot all the time and often run fevers. My neck and back have what feels like the worse sunburn-like pain you can imagine. I just want to sleep all day and struggle to get out of bed. I have a headache 24/7. I recently lost 130 pounds through weight loss surgery hoping that would help me feel better, but it did nothing. I've had test after test and nothing can be found. If I feel this way at 34, I'm terrified of what I'll feel like later on.
Anyway, I don't know why but it just dawned on me that all of these symptoms could be due to the syrinx?? I've just blocked it out of my mind so long because I'm so afraid of it. Thoughts? Do you guys have similar issues?
Posts: 83
Joined: Mon May 21, 2007 10:19 am

Re: Help please..

Postby donny » Wed Nov 25, 2015 11:22 am

I would say a new set of MRI"s should be done to see if there is any changes in the syrinx. Depending on the results after that your Dr should do the best they can to figure out the cause of the symtoms whether it is or isnt due to the syrinx
Take care,
Posts: 317
Joined: Tue Mar 18, 2008 11:53 pm

Re: Help please..

Postby pmaxwell » Wed Nov 25, 2015 11:29 am

*If you have not had an MRI in 10 years it is definitely time to have another and see if there are changes in the size of the syrinx. The car accident could have damaged nerves which could also be the cause. Try to find someone who specializes in spinal trauma so they can determine if the symptoms are the result of nerve damage, scar tissue or an expanding syrinx. A pain specialist in spinal cord injury should be able to help you find therapy/medication to help with the pain issues but not everyone is qualified to treat nerve pain so if you don't feel the specialist is the right one for you, find another.
Together We Can...
Posts: 153
Joined: Mon Jan 31, 2011 2:20 pm

Re: Help please..

Postby pseudotumor » Fri Apr 15, 2016 12:03 am

I agree that you need a new MRI. I started having worsening numbness/tingling and thought it was my syrinx getting worse, but upon imaging found out that my syrinx has actually shrunk over the past couple of years. (So you never know without imaging)

Sometimes medications can cause some awful symptoms themselves, so it would be best to have your doc fully evaluate you.
User avatar
Posts: 83
Joined: Thu May 19, 2011 3:45 am
Location: USA

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 12 guests