Can anyone share their experience in making the decision whether to have decompression surgery?

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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

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  • Posted

    Hello,

    I too was recently diagnosed with Chiari but I needed to get operated because my CSF was blocked. I had fainting spells to. I'd say wait as long as you CSF is not blocked and your symptoms are not life changing then ask for meds that can help you with stiffness. The operation is life changing I had mine on February 6 2017. Hope this helps you out a little Hope you all the best.

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    • Posted

      Julia how has your headaches been? I had my Chiari Decompressionsurgery on 2/8/17 and my head hurts worse now then before. I find that when I'm asleep or just waking up the pain is beyond unbearable. Pain meds don't even touch the pain!! Does anyone have a clue what to do? I go back for follow up on 3/21/17

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    • Posted

      Hello Ashley,

      I have notice more headaches but I'm not sure if it's from the way I sleep or the stress that I go through with my kids. I would say call the neurologist and tell him your symptoms and see what he says. I kinda regret getting my surgery my neck is stiff I feel ugly sometimes I don't look the same my face looks swollen and I'm just in pain daily especially in my neck area. I don't have pain killers just Tylenol which don't seem to help. I see my doctor on the 14th I will tell him about how I feel and see if I'm able to return to work. I will keep you updated. I hope you get an answer but it seems like everyone heals differently get better soon. 😊

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    • Posted

      Hi Ashley, do not worry about it, I felt like hell after decompression, it took 6 weeks before I felt human again it is better to have it check though if you are worry, go to A&E if need be. But space your time do nt sleep to long though, keep mobile (gentle...) drink plenty of fluid...do some stress or breathing exercise first thing in the morning when you wake up...

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    • Posted

      I did massage therapy on my back, but I didn't let them touch my head or neck. It relieved a tremendous amount of pressure. I now go once a week, and I am 4 months post op.

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  • Posted

    Hi Toby

    I'm going to answer your questions in turn cos I think that may be easier.

    Chiari malformation often goes undiagnosed and gp's will often send sufferers away with medication for stress to I'm intrested to know how you have come to be diagnosed. 12mm herniation is quite long however the key here is you don't have symptoms. I was diagnosed last year and mine are 5 and 8mm and have symptoms. That's the thing with chiari malformation you can have the smallest herniation and havr really server symptoms and you can have a really long herniation and have no symptoms.

    Neuro surgeons are different opinions on whether to operate my ns wouldn't operate if I hadnt had symptoms. The fact you have 2 doctors with 2 different options it's no wonder your comused.

    I can only give you advice based on my own experience as cm is very very individual. I had surgery cos I had symptoms which were increasing week by week. Migraine like headaches pressure at the back of my head numbness in hands and feet and my left eye had stopped responding to light. So for me and my ns there was no other option but to operate. If I didn't have symptoms I would not have had the surgery but would have considered it is I did develop symptoms. The main symptom which I'm sure you must have is the pressure headache when you strain or cough? Iv had that for years and never new what it was.

    The surgery is again very individual Toby iv known people walk out of hospital with very little pain and get back to normal life quickly. My experience was one of horrific pain after the surgery I am now 16 weeks post op and only just starting to feel human. The issue with cm is that you don't have csf flowing through your brain due to the herniation the decompression surgery opens the gap and the csf cerabel spinal fluid starts to flow and you can get low pressureheadaches in your frontal lobe which are horrific. I have to be honest and say my pain is worse than before surgery! But I was deteriorating so I had no choice.

    Personally if I was you I wouldn't have the surgery you have no symptoms people can have a cm and never know!

    I'm no expert but I know more than ever did before its been a complete shock to me I was diagnosed in September 16 and surgery 7th November!

    Don't ever be sorry to ask questions Toby it us major brain surgery and cm can be very painful as well as disabling. I am part of a cm support group run by a Karen Kerr I would not have got through the last 16 weeks without it. My suggestion is to join this group it is private and really friendly. The groups via Facebook called chiari support. If you can't find it I'm happy for you to friend me on facebook jaquie clark and I will add you as I am part of the admin team. Here you will see loads of different experience of cm there are people like you people who are waiting surgery people like me who have had surgery so you would learn a lot.

    Take care jaquie and welcome to the world of chiari malformation!

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    • Posted

      Hi Jaquie,

      Thank you for your very in depth and welcoming message. It has helped clarify many things.

      I had an MRI for an unrelated issue and that was how the neurologist discovered I had CM.

      Thank you for the invitation to your group. I have sent my request and look forward to discussing this further with you all soon! 

      Toby

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  • Posted

    Hi Toby, the one thing a consultant said to me was can you live with the symptoms.! I got to the point the pressure head ache was near making me passout, so I went for decompression surgery 2yrs ago. I'm unlucky as have dizziness and slight nausea but I'm working part time, and as they said it doesn't cure it but stops it progressing. If I could live with it I would have held off surgery. Some have very servere symptoms and others don't get too bad. U less it was really having an effect on your life and isn't progressing I would hold off surgery. Just my opinion, best of luck hun x

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  • Posted

    In had surgery in 2014 with a 13 mm herniation.  In 2013 I had a cervical fusion which did not go well.  I was very symptomatic.  I experienced balance problems, speech problems, walking problems, extreme neck and head pain, eye pain and ear issues.

    i had the surgery and the balance is better.

    if u are not experiencing  symptoms you could wait but waiting could cause unrepairable nerve damage.  It's a catch 22 based on how u feel your age family and job.  Everyone is different.  My outcome wasn't good.  Others are fine. Regardless, it will continue to get worse either way.

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    • Posted

      Hi Apple62,

      Thanks for getting back to me. I sorry to hear about how symptomatic you were. The 'unrepairable nerve damage' is something that the second neurologist I spoke with mentioned and was one of his reasons why I should have surgery sooner rather than later. It is quite daunting to hear that.

      You said 'it will continue to get worse either way'. I have heard that some people can live their whole lives with Chiai without knowing becuase they had no symptoms but, from what you're saying, am I right to believe that CM is a condition that always continues to worsen over time? Am I right to assume that it is very likely that my symptoms will become more severe? 

       

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    • Posted

      Hi,

      Based on my experience the symptoms are worse. I don't mean to scare u. My PCP told me i had the formation and it was nothing.

      U could have the surgery and be fine. U can't predict which way it will go. I do believe u will have some symptoms how mild they might be. If u don't have the surgery it could cause damage.

      It's a 50/50 chance. I'm not a dr just my personal experience. I'm so sorry for not having a positive experience. There are some good ones listed though. Wish u the best!

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  • Posted

    Hi Toby, just like yourself I ws diagnosed aabout 3 years ago, but refused to have surgery-only  until 8 months ago as the condition got worse and its caused me being a house bound, I wanted surgery then, my health care prfessional teams were such a fantastic bunch- I have got 2nd opinion - I was lucky that they sent me to Mr Flint in QE Hospital in Birmingham, the first 2 months of operation it was horrendous but it can be controlled by all medication such as: opiod, steroid etc..then the 3rd month I got better..and now with the constant physio..change my life style..I am pain and drug free - but occasional my back feel aching, nothing to compare when I had that chiari....I am seeing Mr Flint again in the end of March - if you can manage by medicine go for it..avoid the invasive surgery..but as far aas my condition..it getting worse (so I learned from others) hence I had that surgery..I am glad I have done it... !!!!
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  • Posted

    Hi Toby... I am too questioning on whether or not to have the surgery. I was diagnosed with Syringomyelia back in 2012 and do suffer from symptoms that led to the diagnosis. I have numbness/tingling/burning sensation on the left side from face down to leg. Pain across shoulder blades, neck, headaches, fatigue etc. I was told there is nothing that could be done for me and to come back and see the neurologist if symptoms get worse etc. Well over the years I started to notice a change... I now experience the numbing/ burning etc on my right side too (all extremities) and other symptoms. I never felt it was serious enough to see the neurologist again as the symptoms would come and go and I was told not much if anything could be done unless It had gotten severe and then they would just put a shunt in to help decompress the syrinx. At the end of December 2016 symptoms were getting a little worse (but nothing severe) so I had more MRI's done (brain, cervical, thoracic) to see if the Syrinx had grown. They noticed I had Chiari and was a sent to see a neurosurgeon. He said I had it in 2012 and was surprised they didn't catch it and that it protruded about 8-10mm. He recommended surgery but I just don't know if my symptoms are severe enough to go through with it. He said the only guarantee he could give me was that he could fix the Chiari. He said it could potentially fix my syrinx and slow the progression of my symptoms and maybe even get rid of some (numbing, headaches, ringing in ears) but with surgery there are always risks and things could get worse, like damaging my nerves even more. So I am also curious if having surgery now is worth it or do I wait? I'm afraid if I wait and things progress and it causes more nerve damage I can't get that back. I know my CSF isn't flowing properly around the brain due to the pressure back there so I know doing the surgery would fix that but not sure how important that is right now. So I will see my neurosurgeon again next week and ask more questions. I know it can be a tough recovery and you will need physical therapy for your neck. Sorry I didn't really respond to your questions but I am also looking for answers similar to yours. Have a good day!

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  • Posted

    Hi Toby! I don't know if this reply will be helpful or not because I don't really know much about chiari malformations. I was diagnosed back when I was around 14 or 15, I'm now 22. At that time, I had severe migraines that would cause me to feel dizzy. I went to my family doctor who had prescribed me 800mg of Ibuprofen for the migraines. It didn't help me much, so my grandmother took me back to the same doctor. He then told me to double the Ibuprofen but my grandma stepped in and explained that the medication wasn't working and that they needed to find out what was going on. I went to see another doctor and we explained what had happened and she immediately scheduled either a MRI or a CT scan (I can't remember). About a week later, she sent me to a nuerologist in Greenville, NC. The doctors there did another scan and told me that my cerebellar tonsils were so low that they were blocking the flow of spinal fluid and that was causing my headaches/migraines. They sent me to Duke Children's Hospital and did another test/scan. The doctors there told me about the chiari malformation and about the surgery. Now because of what my scans had showed, the doctors told me they needed to relieve the blocked spinal fluid. They told me that if I hadn't chose to have the procedure then if I were to be in a minor fender bender and my neck was to jerk or something like that then it could have caused me to become paralyzed or even death. I had the procedure and I don't suffer from severe migraines anymore. I hardly ever have to take my Ibuprofen.

    Wishing you the best,

    And hoping that was helpful,

    Brittany

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  • Posted

    Hi Toby 

    I was diagnosed with chiari malformation type 1 around 2 years ago now, it was found when I had an MRI scan as I was complaining of having extremely painful headaches. They sent me away and told me everything was fine until I got a phone call. The cerebellum tonsils were only petruding by 8mm so it wasn't anything major but it felt worst then it looked. I was referred to an incredible hospital where they recommended I have the surgery. So about 5 days ago I had my chiari malformation decompression surgery and I believe it's the best thing that could have happened! The first few days were rough and now I'm finally starting to feel human again and the headaches and symptoms have (crossed fingers) gone now! 

    I do highly recommend getting the surgery done and hope the best for you! 

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    • Posted

      Hi Ashtwigg, which hospital did you go to?, just take your time, do not rush in to anything normal you do daily..it takes around 6-8 months then you should start do normal thing but not exessive...I was advice by my NS that it would take 18 months before it helaed completely.  Iam glad you are one of the luckiest one just like my self..but I have terrible back ached now and then.
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