Can anyone share their experience in making the decision whether to have decompression surgery?
Posted , 14 users are following.
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
0 likes, 21 replies
shay_Brooke Toby.
Posted
I think if you are able to go on living normally day to day with minor discomfort, you shouldn't need the surgery. It's an incredibly long healing process! But ultimately, it's got to be what you and your surgeon are most comfortable with!
OccultEnemy Toby.
Posted
Hi I too have been getting worse with my headaches over the years and I have borderline chirai 1 malformation. If my doctor asks me about decompression surgery, I'm saying know. I'm also 15 and don't want someone going into my head. I'm fine with any other surgery but my head.
b2wc97455 OccultEnemy
Posted
htch Toby.
Posted
Hi Toby. I can very much relate to this, you most likely do have some very mild symptoms that you don't even know are related to Chiari as there is a long list of things that can be associated. I was diagnosed 1 day before my 40th birthday after having the coughing / laughing headaches for years which really was my only symptom or so I thought. On looking back I did have other symptoms but nothing major that affected me or that I sought medical attention for.
I did nothing about these head pains for 20 years as I just assumed they were normal and everyone got them as sometimes they were worse and at times they were not so bad. Eventually they got to the point when I realised they were not normal and I went to the GP who looked at me like I was making it up and tried to tell me they were stress headaches. I persisted and got an MRI and was diagnosed with Chiari.
My surgeon told me that I could have surgery if I wanted it but it was my choice. I found it very hard to make this decision as I didn't feel like these head pains were life limiting. I spoke to a lot of people and in the end I made the decision to go ahead based on the fact that the surgeon was telling me that I had CSF blockage and if I didn't have the surgery I could end up with permanent nerve damage.
So I had the surgery and wish I never had, I had major complications and was in and out hospital for 3 months and ended up having to further surgeries and a shunt which has now left me with nerve damage from that surgery !! I'm ok now however the whole reason for having the surgery the coughing / laughing head pains has not been solved in fact they are worse than before surgery.
Some people need this surgery due to their symptoms however my advice to anyone is that unless this condition is affecting your daily life, hold off on surgery as long as you can. I have also been told this by a surgeon since my surgery as my sister has now also been diagnosed with the same condition.
Apple62 htch
Posted
It's almost like which came first the chicken or the egg. I had one surgeon say I shouldn't do surgery and another surgeon said I did need surgery. If u don't have the surgery u Risk nerve issues. If you have surgery you can still get worse.