CHIARI..... what to do?

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I was diagnosed with Chiari Malfirmation in 2010 and I've been living in constant pain. I've been on Tramadol for the first 3 years then been taking Morphine Sulphate 30mg along with Co-dydramol and Paracetamol & ibuprofen 6 times a day. Had my appointment with my Neurosurgeon 3 weeks ago and he wished me Good Luck and was told to try to adapt to this condition.

Apart from Puking I have every other symptoms on gods green earth linked to CHIARI. Currently I am being pushed to have Decompression Surgery but I am scared as I have not heard anything positive.

Can someone advise me (who Evers had the surgery) should I go for it or not?

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  • Posted

    Have it done, you say you have not heard anything positive read the comments on this site. OK it affects differt people in different ways. Some are up and running within days others take longer. BUT life is better after decompression, you may get a few niggles, some do some don't, but why keep suffering if theres a chance to get better. You certainly wont get worse after decompression. Where are you? Have you got a good neurosurgeon? Best of luck for the future.

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    • Posted

      I am in UK and am registered at Queen Elizabeth hospital in Birmingham. Neurosurgeon is Mr Flint who happens to be top notch.
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    • Posted

      Go for it, Graham Flint is brilliant be guided by him. QE is perhaps the centre of CM in this country.
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  • Posted

    I have been having symptoms for 6 years and was finally diagnosed about 2 months ago. I am scheduled for surgery December 6th. I debated a lot on the surgery. My doc is removing bone only. This makes me feel a little better knowing that my brains won't be touched lol. I feel like I have missed out on 6 years of my life and like you I have read a lot of bad reviews but I honestly think that's because the people who have good outcomes are out enjoying life and just don't have much time to post. I truly believe that if I set my mind to beat this that it can and will be done. Follow your heart. That is the rule I'm following. Obviously no 2 people experience the same exact thing with Chiari so I can't base anything off the next person. I'm just trusting and believing that I will be healed. Best of luck to you.

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    • Posted

      Hi! Does your NS thinks that will work? Don't get me wrong. I wish you all the best smile

      I'm just thinking, the bone is one thing creating the pressure, but the dura itself holds it too. It would be a disaster to realize the surgery was unusucessful because the dura wasn't opened.

      I had craniocervical decompression with autologous dural graft 2 weeks ago. First week post op was tough. I had to be readmitted because a severe headache and vomiting started 5 days post op. Everything checked out good, but there was a bit more post op edema than my NS would have liked, so he put me on mannitol and steroids, and kept me there for treatment/observation for 3 days. Haven't felt anything remotely close to pressure headache for a week or so and the tingling's gone. Every second of post op pain and discomfort is worth it in the end. I sincerely hope you'll eventually feel the same.

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    • Posted

      He's been practicing 19 years and he said he used to perform the dural graft and bone removal on all his patients but over the last few years he has just been removing bone only unless he feels it's absolutely necessary to do the dural graft. Over his years of practicing and performing surgery on Chiari patients he felt like the majority of patients that had complications later on were the ones in which the dural graft was performed on so he prefers to leave it as a last resort if he thinks that the bone removal alone will alleviate the majority of symptoms on a patient. I suppose it's on a patient by patient basis is kinda how I took it. I'm ok with having the invasive surgery now with the possibility of having to have additional surgery later because I am setting my mind and my heart to be healed after this surgery. I would rather take the more conservative approach for now. Any relief is better than none. Just have to keep my faith strong and trust that I will benefit from this surgery. I'm sorry to hear your post op hasn't been so pleasant but I'm sure in the months to come things will be much different and you will bounce back and be able to enjoy life. Sending prayers your way for a speedy recovery 😀

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    • Posted

      Correction. Im ok with having the "less" invasive surgery now 😀 Darn typos 😀

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    • Posted

      Thank you, best wishes to you as well wink

      My NS has been practising for 38years, but I don't know for how long he's been treating CM patients. All I know is that he certainly knows the disease and I'm lucky to have had the opportunity to trust him with my health. My symptoms were really pronounced although I have only 3-4mm herniation. After the surgery my NS told me that my CSF pressure had been extremely high, so the surgery had been more than necessary. Noone of 5 neurologists I saw during last two years would consider that I might have CM I, because "3-4mm herniation can't be the cause of my symptoms". My NS diagnosed me with CM at once, he examined me, ordered one cine MRI and I finally got my diagnosis. I think, that suggests he's been treating CM patients for quite some time.

      But I'm not trying to argue in any way. wink Every case is different. If your NS feels that duraplasty isn't necessary for you and that makes you happy, then it's the end of the discussion.

      And about my post op experience-with every passing day I feel a bit better, so no need to feel sorry about me wink

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    • Posted

      I hear you and I am very glad that you finally found a doctor to hear you. I know the feeling of going to doctor after doctor and getting nowhere and it really stinks. And you are right, every case is different which also makes it difficult to diagnose and treat but I trust that everything will be fine and just trusting my heart. There are people way worse off than myself in this world so I am grateful for this imperfection of mine. It has definitely tested my mind, body and soul in many different ways and the journey has made me appreciate my life so much more.

      I am really glad to hear that each passing day gets better for you. That's encouraging to hear. I am sure you will be a whole new person in no time smile

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    • Posted

      Thanks once again! I already feel like a whole new person smile And I sincerely hope the outcome will be the same if not better for you wink

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  • Posted

    I was diagnosed with chiari when I was 14 I had surgery within 3 weeks although not one hundred percent of the symptoms are gone it did improve. I have had the brain surgery and the bone removal as well. The thing is just go with it. It's nice to know there is an option and there are times when it's hard to live with but it can alwaus be worse. I'm 25 now and live a fairly normal life

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  • Posted

    Hi, Chad! As you can read in my previous comments - my experience has been a good one. I don't take those post op complications into account because that was nothing compared to what I've been trough before my surgery.

    For last two years I had been on ibuprofen, lornoxicam, acetazolamide, furosemide, carbamazepine, bromazepam, alprazolam, gabapentin, tianeptine, pregabalin - in various combinations and regimes but the medication didn't help at all. None of them.

    My NS offered to do the craniocervical decompression since it was the only logical thing to do. I was happy he offered to do something invasive because I had lost my belief that something as simple as a different kind of medication could help me. Before my surgery I had pressure headaches with nausea, vomiting, arm and feet tingling, neck, shoulder and back pain, dizziness for 8 - 10 - 12 hours a day, sometimes the pain episodes would last for 24 - 42h. If I slept, I woke up exhausted, most nights I had insomnia - my life was a nightmare. I existed.

    Had the surgery on 25th October, today I got my stitches out. You know what my GP said - you look a lot more energetic and happier. Even she noticed the difference. I am happy. I had forgotten what it means to live without pain. I haven't had a headache for almost a week now, and I'm not taking any painkillers. My neck hurts, but I can handle that. Neck pain will go away - it's there due to muscle retraction during surgery.

    As long as I'm alive I'll be the bloody advocate for the decompression surgery. Of course, I'm afraid my relief is temporary but still, the symptoms are gone. Every pain-free moment is so worth it I'd agree to do it again in a heartbeat if I had to.

    The surgery is a chance you can take, it's up to you to decide.

    If you have any further questions, don't hesitate wink

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  • Posted

    Do you know Christi is progressive and the best thing you can do is have the surgery for it. It will sometimes relieve some of the pain but without the surgery called posterior decompression this illness will only get worse. When I was diagnosed I was told by online support group how Lucky I was to get a diagnosis because many people don't. This was several years ago so it was much more rare than today. The one thing you must do for yourself is get a surgeon who knows what he is doing. My son failed to do this and he has had many surgeries because of the quack who pretended to know the correct procedure. Good luck and may God bless you

    Many times chiari is found in other family members

    For instance my son and all three of his children have it. Two kids are not symptomatic yet, but his son became very bad with it at nine years old. He is in his twenties now and feels wonderful. I didn't have symptoms until I was in my fifties. This is one crazy problem

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