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Avatar universal

Surgery or no surgery

I'm looking for any feedback that I can get.  I have a Chiari 1 malformation with a 12 mm herniation and syrinx.  It was an incidental finding and I don't have symptoms minus headaches (not debilitating).  My regular NS said that surgery wasn't a must but that he would recommend it due to the syrinx.  He said he felt like it would eventually get worse and that taking the proactive approach would probably be best.  I got a second opinion and was told that surgery isn't a bad thing but wouldn't be recommended because I don't have symptoms.  I have heard so much conflicting information that I don't know what to think.  I have heard that the syrinx can get worse and cause permanent damage but then I have heard that the syrinx may never change.  Not sure if I should be taking the proactive approach even though I have no symptoms or if should just wait for symptoms.  Any advice would be greatly appreciated!
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12573102 tn?1431701617
Are the doctors that you saw Chiari Specialist??  I saw a Chiari Specialist & he told me that if I had a Syrinx or any obstruction of CSF flow that surgery was a must.  I am now 3 1/2 weeks post op & feel much better but I had a multitude of symptoms.   You are fortunate not to have symptoms. Not to scare you, but my husband is now blind in the left eye because he was missed diagnosed for so long.......yes I know its crazy that both of us have Chiari!!!!  The CSF build up due to occlusion caused pressure & therefore he had a stroke.   Make sure you research as much as you can so that you are knowledgeable of Chiari.   There is a great list of Chiari Specialist on this site that may help you start doing your search.    Maybe you could send copies of your MRIs to a specialist for review to get 3rd opinion.   There are many complications that can occur due to syrinx & it can progress in size or a new syrinx may form.  Syrinx usually occurs due to CSF flow obstruction or some form of trauma.......it is rather shocking that your docs are not encouraging you to have surgery.  Have you had CINE MRI to check CSF flow??
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I must agree with the above poster in that I was told any obstruction to CSF flow should have surgery to restore it....as a syrinx may form, and you already have one. And it is a crap shoot as to if or when the syrinx may grow and if it will grow slowly or very rapidly.....

Also for you to say you do not have syptoms...many of us are not aware just how many symptoms we have since Chiari is congenital (since birth) we have grown accustomed to how we feel and consider it to be "normal" ...but with more info you will find you do have symtoms.

Another thing for not having symptoms is your syrinx may be preventing you from feeling pain depending on which nerve it may be in contact with...a syrinx can cause pain or prevent it...so many have issues being able to tell  how hot or cold something is....sensations can be off or varied...

Find a true Chiari specialist and have testing for ALL related conditions and see what that Dr has to say. JMHO
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Avatar universal
I am actually going for a 3rd opinion from a Chiari specialist in two weeks. My NS is actually on board with surgery. I was the one who was was worried about making the right decision since I feel fairly normal. Surgery is a scary thought so I want to make sure that I am making the right decision. I really appreciate all your feedback!
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Avatar universal
Although it is a long recovery (took me 6 months) the surgery is well worth it. I had full csf blockage and therefore many debilitating symptoms. Post-op the headaches and constant neck pain were gone instantly. If surgery will delay the symptoms do it.
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