What to do?!

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Hi I was diagnosed about 2.5 years ago and have a Chiari of 8-9 cm. I have been offered surgery by kings in London but I really want to avoid! What is everyone else's view on this? I don't think I have many headaches compared to other stories I have read. I get pressure headaches that last a few seconds when sneezing coughing straining shouting bending over too quickly(that's the main time). I'm always very tired but I do have an 8 year old a 1 year old and a 3.5 year old autistic son so day to day life is pretty intense and exhausting! I sometimes get dizzy but not often. And I very often loose my train of thought or repeat myself, which must be so annoying for my husband! The thing is apart from the obvious symptoms that you read online I don't really know about the symptoms I should watch out for, I have had a very sore right arm a couple of times lasting a few days, as if there is a trapped nerve at the top, then it goes..... Im going on a bit now! Basically I suppose what I'm saying is I have read pros and cons for surgery and given that I do function everyday looking after 3 children. Surely it's not necessary?!

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  • Posted

    Hiya, I was wondering the same as you! Diagnosed last year, offered surgery this year back in April... But I wanted to hold off as long as I could. I've now decided to go ahead though and requested referral back to Neurosurgeon!

    For me, there are 2 sides to it. First, it's got to a point with symptoms and pain, where I feel I can't carry on as I am, so that makes the decision part a bit easier. However, was speaking to people in a Facebook group about exactly your question and a couple of things were pointed out to me. The longer you leave it, the more chance of ending up with permanent nerve damage from compression etc. The second thing pointed out is that I'm not gonna get any younger, fitter or healthier etc to recover! OK, so I'm only 36, but the longer I leave it, the harder it will be for my body to recover. It's major surgery! I can't exercise really anymore, and so I won't be as strong to cope, and with symptom progression, my body will just get more run down. Basically everything will get harder!

    That made it easier for me! I know I will need surgery one day, it's pretty inevitable... So I may as well give my body the best chance I can to deal with it and do it sooner rather than later!

    That said, I'm terrified! Have you joined any Facebook groups? I've found it really helpful to connect with people at the same hospital, and have ended up requesting a different surgeon through recommendations... It's really helpful!

    Hope this helps you, it's a hard decision... I know!

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    • Posted

      Hi thanks for your reply. What Facebook groups have your joined and also what are your symptoms? X
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    • Posted

      Hiya, I'm a member of loads lol but there are some really nice people in a smallish group: Chiari Malformation and Syringomyelia:UK, the Ann Conroy Trust is good for info and then there are some American ones as well.

      Symptoms include constant headache, with days where it is quite severe. I fall a lot due to drop attacks, I have neck, shoulder and jaw pain, dizzyness, vertigo, tinnitus and massive fatigue as my main ones. A lot of these used to be intermittent but have become pretty much permanent now.

      I'm lucky though as have a very supportive partner and no kids to try to cope with!

      Come join the first group, there's some lovely people there :-)

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    • Posted

      Oh god poor you! That's much worse than me. I only get short sharp headaches they are horrid and send me really dizzy but only last a few seconds. I will look for the group on Facebook x

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  • Posted

    It depends on how disabling your symptoms are. Is there an CSF blockage?  My biggest symptoms were vision- I had to quit driving; being dizzy all the time; trouble walking straight; feeling like a "zombie" all the time. Also, bad memory, sometimes trouble talking, neck pain

    I had surgery 2 months ago. Vision was immediately better!! Everything else has improved. I feel like I'm 20 years younger. Surgery isn't that bad and you get to have a nice 3-4 day "vacation" in the hospital with lots of lovely painkillers and nurses waiting on you!!  

    So if you are doing OK without surgery, you could probably wait on it. Read up on it and research everything!! 

    Good Luck!!

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  • Posted

    Its a difficult decision. Post surgery can be quite debilitating and you rely heavily on others. You would need to be sure of your support network. If you leave it your symptoms could worsen taking the choice of surgery away from you. You are young and should recover well. Just make sure you have a few months of support even for just hoovering and ironing! Good luck. Ps. I am 14 weeks post op.
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  • Posted

    Hi Leah, my advice would be that before you make any decision, be sure you have a full MRI of your spine. This is really important because you will need to rule out Syringomyelia. If you do have this then surgery is a no -brainier (pardon the pun) as damage in the spinal cord is often irreversible.

    If you are without Syringomyelia & can cope with your symptoms then surgery might no be the right option for you. My NS said surgery should only be considered if your symptoms are severe enough that they affect your day to day life. Sounds like your doing so well, especially with a busy & demanding family! 

    Glad you have found us here, lots of lovely people to offer advice & support!

    take care

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    • Posted

      Hi thank you so much for your reply. No I do not have a syringomyelia. I feel I can cope day to day. Although it is hard for me to tell as my nurse said. I'm exhausted all the time and often think I can't cope anymore but this could be due to having 3 young children, 1 of whom is autistic and has never slept past 4.30-5 am xx

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  • Posted

    Hi Leah, your symptomp is just like mine 2 years ago, just like you, I detest surgery,well the health care professional will not suggest you to have surgery if they dont think its necessary, my specialist/s advice me to have it done then, but I just refused it, they said its only going to get worse, and they were right after 2 years , I ended up house bound...I could not put up anymore with the pain, then I agreed to have decompression...as I lost my quality of life...a day post surgery, I felt that was the best thing I have done..as I have my quality of life back. But the healing period was unberable - the first 2 months was like hell, I am on my 3 months recovering period now..and I am drug free , not even paracetemol..but each individual is different, if you decide to have decompression, make sure you chose the right surgeon..have 2nd opinion like I did if you need. but what ever you decide..just take easy..as chiari is quite serious condition...
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