Chiari malformation/syrinx

[Booboodel]

I am 45 female. I have surgery scheduled to correct a Chiari malformation. I have only had symtoms since January 2006.   My symtoms are the following: swelling/numbness/pain/burning in arms, tightness/choking in neck and throat, headache/tingling in back on head, swelling/numbness/buring in legs,  depth perception promblems, ringing in ears and jerking while sleeping. The syrinx extends for C4 to T1. I also have spondylosis of C4-5 with foraminal stenosis. The surgery seems so invasive. I need  to be back at work 10 days after the surery. Could I reschedule surgery till May 2007? I greatly appreciate your help.

[CCF-Neuro-M.D.-PW]

I cannot give you a formal medical opinion over the internet unfortunately, so I cannot tell you whether you can reschedule the surgery or not.

Its important generally to be careful what symptoms you attribute to the Chiari - many times they are asymtpmatic and surgery does not help the symptomsm which are caused by something else. There shoud be evidence of lower brainstem malfunction such as motor or sensory symptoms in the extrmeities, clumsiness, vertigo, swallowing problems. Visual, hearing symptoms, and sleep jerks would be hard to attribute to a Chiari. The fact that a syrinxe is present doe ssuggest that th eChiari is significant.

You will have to weight the risks and benefits with your doctor and come up with teh best surgical or non-surgical plan. What is the current level of your disability and is it worth a surgery?

Good luck

[lost 1]

I am 25 years old and got diagnosed with syrinx c4-c7 earlier this year. I have no insurance to cover medical expenses. I have appliesd for a medical card and social security last month. I have been out of work since sept of last year. I am in extreme pain constantly. I am currently seeing a orthapedic specialist in a clinic for $20 a visit.My doctor has no idea where to send me for treatment. I have to be driven into Chicago to get to see a NS. I am currently on 6 different meds. I have a mri sch for next month to see if i have a chiari malformation. I have read on the internet about the chiari and i have quite a few of the symptoms. Is it quite common to have syrinx and have the chiari? They think the syrinx was due to being hit by a car when I was 21 but i went to hospital and had cat scan and nothing was wrong at that time. Do you know of any hospitals in the Chicago area that are doing clinical studies. I need help and dont know where to go?

[suecmi]

Hi, I'm new to this site but just saw this posting. I too was diagnosed with CMI in Jan. 06.  My Symptoms were severe dizziness, weight loss, arm tingling, pain, heaviness and atrophy by my thumb, memory loss, eye jumping, fatigue and some headaches, clumsiness and other symptoms.  My Cine MR showed only wisps of CSF flow and no dorsal flow at all.  My neurosurgeon performed surgery March 1st, the week after my Cine MRI.  At that point, pre-surgery, I was in bad shape.  The surgery has changed my life.  My NS attributes a lot of illness and symptoms I've had life-long to this condition, and it is a condition you are born with.  This actually showed up on an MRI in 97 when I had severe headaches, but at that time I don't think it was as understood as it is now and I was not told about it. My symptoms worsened over that time progressively.  I don't know if you have had the surgery, but if so, I hope you are feeling better. I was lucky in that I did not have a syrinx.  It was definitely a very difficult surgery, and you would not be able to return to work in 10 days. I was out for 4 months before I felt able to return. Luckily I have great insurance and short term disability.  Hope this posting finds you feeling better.

Sue

[bigcat70]

My 14 year daughter has been been complaining about her arms and legs burning for the past 2 days. She said her arms and legs burn inside and feel like the muscles are tightening. Is that something that worry about it? She has been diagnosed with anemia, but I did not think that had anything to do with it. Is there anything that I can do?


Thank you.

[puddy39]

I know this posting is old but I just had to answer. I had decompression surgery in May of 2005.  You will need more than 10 days off of work.  I was in the ICU for 2 days and in the hospital for 5. It has been over a year and I still am not back to the way I was.  My headaches are better but I thought I would have this surgery and everything would be great.  It does not work that way.  Alot of my other symptoms have gotten better but do not think going into this that it is a cure all.  There was alot of damage done before they found the chiari and just fixing the spinal fluid flow does not always fix everything else.  I wish you good luck and I'm glad to see you are looking for advice and information before you have surgery, I went in with high expectations and very little knowledge those two never make a good pair !

[ataylor]

A related discussion, I have Chiari Malformation I and my eyes... was started.