Hi :) chiari malformation.. please help
 

Hi I am new to this forum but I need to figure out if I should have this surgery. I recently had MRI's done that showed I am borderline chiari malformation and also have several syrinx in my spinal cord. I have always had neck pain, shoulder pain, and headaches but I didn't think it was too serious because they would always go away. I eventually ended up getting my neck checked because my health insurance is running out shortly. My mom's neurosurgeon (who she has had great results from her neck and back surgery) basically told me to live my life and to redo my scans in a year and see where we stand because I was borderline and haven't had too many serious problems yet. I have been researching the topics and realized I have more symptoms related to this then I thought. A lot of the symptoms I have brushed off for years not thinking too much into it, until now. So I'm going back to the neurosurgeon to talk with him.

My question is... I do not have severe symptoms right now, however; I am aware of the possibility of this getting worst and turning into a big problem later in life. Also, I am aware of the fact I could be worst off after surgery due complications and such. Should I get the surgery now? Instead of waiting to see if the major symptoms hit me? Help please, I'm scared to have the surgery and scared to wait :( Any advice will be greatly appreciated

Also, my health insurance is going to run out within a year so I need to make a decision soon.

Hi I can't really give you any advice but could you go into more detail about your symptoms?

I recommend that you don't have the surgery unless the symptoms such as problems breathing, vision, paralysis get worse, I have seen several Neurosurgeons and the answer is different for each person, and yes I have had 4 surgeries, but I can have pretty much a normal life, with some complications, just be sure to monitor your health and unfortunately you will have to get MRI's to help you watch it.

The decision to have the Chiari surgery is a difficult and scary process.I had the surgery last year after having severe issues with my heart and BP such as a resting heart rate of 180 and blood pressure of 230/180. I was literally days from death but even then I was afraid of the surgery. Having the surgery saved my life, but I have a lot of permanent damage from waiting as I was diagnosed just days before the surgery. Dr.Parrish at Methodist Hospital and the NICU STAFF were very professional and tried to keep the pain to a minimum (as much as is possible after the surgery). There is always risk with any surgery and you are right to be cautious, but to quote my neurosurgeon "If Chiari is affecting your daily quality of life, and there is a chance to reduce your suffering why continue to suffer when you have the chance to have a better life?" Please just don't expect the surgery to repair every symptom, it can come back, and some aspects never go away completely- especially if you have a connective tissue problem; but the surgery saved my life and bought me a few more years with my children. So if you can handle the symptoms I suggest you wait on the surgery, but if your case is severe don't wait. I have had doctors tell me people don't die from Chiari, but the secondary issues sure can. Please do a lot of research on the neurosurgeon you choose, ask how many times he or she has done the surgery and what his or her success rate is and look for patient reviews as well. Those steps will save you a lot of time and frustration. You need to have complete confidence in the DR you choose. If you can get to Houston, TX I would recommend Dr Rob Parrish out of Methodist. I wish you well and would happy to answer any other questions you may have.

to have surgery or not.
 

I am somewhat in the same boat, still needing a firm diagnosis of chiari. My symptoms fall into the chiari category as well....fatigue, unblanced feeling, headaches behind the eyes, and ringing in the ears. Mine all started with a whiplash concussion 13 years ago. Weird deal with me is that up to this point, the symptoms would always go away, and then start again when I would get a fever. But, for me, my daily living is affected enough where I would get it. Thinking about living the rest of my life knowing each day is a challenge is scary. Even if I could cut my symptoms in half I'd go for it. I guess it comes down to your age somewhat....your ability to recover, and to think long term about how long you would want the status quo.