Chiari Online Support Group

I am recently diagnosed, have had a conflicting second opinion on having surgery and cannot decide what to do

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 because 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

Hey Toby!

  1. Most people with chiari do not even know they have it and go their entire lives asymptomatic.

  2. The amount of tonsilar herniation does not determine severity. Study after study shows no correlation between tonsilar herniation and severity of symptoms.

If I were you I would hold off unless you begin developing progressive symptoms. If your chiari becomes symptomatic 5 years from now you will probably have access to more precise and possibly less invasive treatments.

If you choose to do surgery now, you will likely have part of your skull and your c1 and possibly c2 vertebrae removed. This will probably cause more neck pain than you are currently experiencing.

Praying for you!

Hi Bwaldon,

Thanks for your response.

Every part of me doesn’t want to have surgery, however, as I have been told by a neurologist as well as another patient, if left untreated, CM can cause unrepairable nerve damage which no one wants.

I totally want to do whatever is in the best interest for my long term health but I don’t want to have what sounds like quite intense surgery if I don’t need it.

I guess this is the predicament all people diagnosed with CM have though.

I agree with Bwaldon’s suggestions. The fact that you are having little to no symptoms, should not warrant surgery at this time. You need to also consider the complications you can get from surgery and the possibility of more symptoms. Most people who have the decompression surgery are at the point that they just can’t take the pain anymore, such as daily Chiari headaches, loss of balance & fine motor skills, difficulty walking, neck pain, dizziness, etc. If you start experiencing more symptoms, then you don’t want them to go on and on, because yes, then they can cause nerve damage. However, you are not having those symptoms right now, so I would not suggest such an invasive surgery at this time, along with the risks of complications and/or increased symptoms.

I had decompression surgery in 2002 with no complications and then again in 2016 with constant complications, so you never know what is going to be the result. To me, definitely
not worth it with little to no symptoms at this time.

It is a hard surgery to recover from that is for sure. I was in my early 40’s at the time. In my case, I had to have the surgery, because the herniation (the Chiari Malformation) was severe enough to cause 2 Syrinxes (syringomyelia). If they are not telling you of a diagnosed case/s of Syringomyelia or Hydocephalus or something directly affected by the Chiari, you might want to consider holding off on the surgery. Like anything else, 2 or more doctors opinions would be better for you.

My gift to you…I have learned from personal experience not to go into the visit saying anything about the treatment/surgeries suggested by the first doctor. As dumb as it sounds, I have found myself going in there and saying well…this doctors suggests we should…_______. Then, like a parrot, that doctor for whatever reason usually suggests same treatment/surgery.
Hope this helps!

Hello Toby,
Just clicked onto your name and realized you are from the United Kingdom. My apologies for all of my sarcasm regarding my conditions. I start venting on here and forget to add sobriety at times.

I sincerely wish you all the best with your health and hope you find the results you are looking for .

Hi Toby, I was just diagnosed in December and I’m 54, have suffered since I was a kid. I will only have the surgery if the pain becomes unbearable. My mother had a brian tumor and an aneurysm. My dad a cancerous tumor in his spine. I have personally seen the effects of surgery. I have Atelectasis (partial collapsed lung) it can be caused from surgery. I had a C-section and my appendix removed. I would hold off on surgery too. If your symptoms are not too severe. Surgery is risky and not a 100% fix, many people end up having worse symptoms or more surgeries. We are lucky that we have an option if and when we need it. My brother-in-law had MS and passed away 2 yrs ago at the age of 56. He had no hope, we do!