Making the decision whether to have decompression surgery or not

[TobiasHill]

I was diagnosed with Chiari I malformation 5 months ago with a cerebellar tonsil that protrudes 12 mm. a few times my neck muscles have been tight and slightly painful but apart from that I get little to no symptoms. I have consulted with two neurologists, the first said they do not believe I need to have decompression surgery as I have no symptoms, however, the other neurologist recommended I have surgery in the near future because my cerebellar tonsil has protruded quite far.

I don't know what to do. I know very little about this condition which I have recently found out I have and I don't know whether to consider my case to be severe or not as the neurologists I have spoken to have given very conflicting advice.

Is the operation worth it if I barely have symptoms? Is it likely that my symptoms will get worse over time and so I should have the operation before they do?

How will my life change after the operation and how long will it take to recover from it?

Is waiting to have the operation only putting me at more risk and potentially leading to a more serious operation in the future?

With chiari malformation, is there a chance that it may never worsen and that, as long as I take care of myself, I may never need surgery?

I'm sorry to ask so much but it is only becuase I know so little about Chiari malformation.

Thank you for taking the time to read this and I look forward to hearing from you if you have any information or opinions that you would like to share.

Very best,

Toby

[selmaS]

  Hi and welcome to the Chiari forum.

You are right to question this further if you are not well educated on the condition and it will make a difference if you have related conditions or not....so my questions to you are what testing have you had?

MRI's of what area's? Brain, cervical, thoracic and lumbar spine? A Cine MRI? testing to rule out EDS, POTS.....??

Symptoms of Chiari vary and can cycle..so they come and go...and since Chiari is a congenital condition it is possible you have more symptoms then you realize but you are not aware that they are symptoms since you have always had them....

I really didn't think I had many symptoms until I was informed as to what the symptoms were and I could  get it explained in terms I understood....some symptoms the way they are described I felt I never had them or could have them and I was very wrong....

Take your time to research Drs and make sure you have one that is also well informed and experienced with not only Chiari BUT ALL related conditions.

I hope you find this helpful....just know you are not alone.