Decompression Surgery or Not???

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After 6 years finally got the diagnosis by accident, which seems to be common with Chiari. Symptoms come, symptoms go, and then new ones come, which also seems common with Chiari now that I've done a good bit of research. Luckily there is a good surgeon near me who is familiar with Chiari and his recommendation is surgery but he said that I'm not at a point that alarms him to operate ASAP therefore he pretty much said that it's up to me. I had horrible migraines in the past, dizzy spells, fainted once and went blind for a few seconds, cold tingling/numb hands and feet. Those symptoms have gone away for the most part, I still get pressure rushes to my head if I bend over, numbness in fingers and toes here and there but now I have periods where I walk hunchback for a few days then it gets better or my neck hurts and it feels like I have a set of twins riding on my shoulders all day, then it goes away for a week or two and comes back again. The fatigue is horrible, and I have other symptoms that come and go but I have my good and bad days. So basically I'm struggling with weighing out the pros vs the cons of surgery and if I should or should not do it. The doctor did say because mine is moderate and not severe that he would be removing bone only which is less invasive. I guess my main concern is if I feel decent 50% of the time and crappy the other 50% and it's not something that is altering my life such as my job, me being able to do for my child and husband, etc, is it worth taking the risk and going for the surgery? And if I chose to wait, will this get progressively worse? I definitely don't want to do this later in life when I am older. I am 36 now and have had several surgeries that I have recovered very well from so I am wondering if I should just bite the bullet now while I am still young. I am so confused. Any suggestions, thoughts, experiences are greatly appreciated. Has anyone ever experienced symptoms go away for good or am I pretty much destined for this to get worse later in life if I don't do something about it? Thanks you guys!!

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  • Posted

    Like yourself I suffered for over seven yrs before a diagnosis, and by accident. I went for decompression to stop the progression of the condition, as told no cure. But I was asked if I could live with symptoms at the time, and burst in to tears as I was so low and exhausted. So I had the surgery, 2yrs ago. most are well after recovery, unfortunately I'm one of the unlucky ones, I was dizzy and nauseous for months, I still take medication for this, the pressure headache has eased a lot. I'm having g a scan to make sure all us ok. I'm 61yrs. As you say do you do it while your younger, if my symptoms werent as bad I would hang on for surgery , as you can't do anything it's completely rest after op. My husband had to help me bath ect... But not everyone is like me, everyone recovers different. Do what you think is best for you hun xx

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  • Posted

    Like yourself I suffered for over seven yrs before a diagnosis, and by accident. I went for decompression to stop the progression of the condition, as told no cure. But I was asked if I could live with symptoms at the time, and burst in to tears as I was so low and exhausted. So I had the surgery, 2yrs ago. most are well after recovery, unfortunately I'm one of the unlucky ones, I was dizzy and nauseous for months, I still take medication for this, the pressure headache has eased a lot. I'm having a scan to make sure all us ok. I'm 61yrs. As you say, do you do it while your younger, if my symptoms werent as bad I would hang on for surgery , as you can't do anything it's completely rest after op. My husband had to help me bath ect... But not everyone is like me, everyone recovers different. Do what you think is best for you hun xx

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    • Posted

      I know I'm so torn. I can live with the symptoms but I'm scared that if I don't do anything that it will get worse and I'm so tired of being tired and exhausted all the time. I'm so sorry to hear that surgery didn't help you. Its so unpredictable which really stinks. I've been praying that God will help me make this decision. I just don't want to have regrets later. I hope that you get some relief soon. Thanks so much for your feedback.

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    • Posted

      Yes it's a tough decision for you. I still work part time as a domestic in hospital, but just a few hrs a day. I have good and bad days, but when I go to work , a lot are far worse than me. Have a good chat with your neurosurgeon. You know your own body and I think you get to a point where you say I can't take this anymore, basically that's what happened to me. I don't regret the surgery, I just have to accept this condition it is what it is, so to speak. Xxx

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  • Posted

    Hi! First of all, sorry if my grammar is off here and there, English is not my first language.

    Your post popped up on my google search, today I have some really nasty pain between my shoulder blades, and I was googling to find out if that is common with Chiari I. I've never had that before, but have plenty of other symptoms rolleyes

    My situation is quite similar. For 5 years I had migraine and vegetative dystonia diagnoses. After being discharged from hospital this September I had one of my worst headache episodes ever, so I made an appointment with a neurosurgeon, because one neurology resident 5 years ago had said something about Chiari, and I still had that thought on my mind. It turned out I have Chiari. My cerebellar tonsils are only 3mm below foramen magnum, but I'm experiencing plenty of symptoms. It's a good thing this NS is experienced enough to know, that mm doesn't account for the severity of symptoms. Over last 5 years I've tried a lot of different medication, and nothing, except Lyrica helps. But while on Lyrica I'm pain-free only if I'm leading a very "lazy day". No long car drives, no long walks, no tidying up the house, basically - I can exist. That's why I'll have my surgery in 10days.

    From my experience, I would say go on with the surgery. In my case, it's been getting worse ever since the symptoms started. I'm 27 now, but it all started when I was 22.

    For first 3 years my pain episodes were seldom, not even once a month. Then, during last 2 years it started to slowly turn into a nightmare. 2 - 3 times a month I had headaches lasting from 8 - 42h with nausea, vomiting, arm and feet tingling, dizziness, ink blots "floating" in front of my eyes... you know, all the usual, worst of all that pressure feeling inside of my head. I have no idea why, and my NS also wasn't able to tell me why it had gotten worse, but starting from September I have headache every single day. I can get through the day because I take Lyrica. It takes the nausea and vomiting away, dizziness, pain and pressure is there, but it's dull, and that pressure like feeling isn't as severe. I don't feel like losing consciousness every time I get up on my feet anymore.

    My NS asked what I want to do - if I'm ok to increase the dosage of Lyrica and to take it for the rest of my life. Since I wasn't happy about that option, we discussed surgery, and I agreed. He thinks it should take the symptoms away. That's what I'm hoping for. Due to my symptoms, I had to leave my job in February. I'm unimaginably thankful to my parent's since I live with them since. We're quite open with each other, and since my NS feels optimistic about surgery being successful, my parents support me in my decision to have it done.

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    • Posted

      I so feel your pain. I'm just wondering if anyone who has it ever "gets better" or if it's inevitable that it will worsen over time. I just feel like if that's the case then why not do it now and hopefully I can enjoy my younger years instead of deal with the symptoms for the next 5-10 years, live tired, in pain and miserable for those 5-10 years then end up having surgery in the long run anyway, and hope that I still have a good job with great insurance 5-10 years from now like I currently have. Mine is 8 mm but you are correct, the mm really doesn't matter with Chiari from what I have read, some more mm than others and are less symptomatic. It really stinks. I hope you have great success with the surgery and I would love to hear how you do after. When are you having it done?

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