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Decision on whether to get decompression surgery

Posted , 5 users are following.

Shanks
Shanks

I'm 17 years old and was diagnosed with Chiari 1 two and a half years ago. My neurologist told me it was benine and had nothing to do with my symptoms and sent me away. Recently met a new neurologist who referred me to a neurosurgeon who today said the pressure on my spine needs to be fixed asap, meaning surgery. I have every symptom there is so suffer constantly. Can anyone tell me anything about their experience with it? Being so young it's a big step to get brain surgery but I feel its the best decision to make, I just want to be fully informed before telling the doctor I'm 100% about the surgery. Any advice is greatly appreciated.

1 like, 20 replies

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  • helen11122
    helen11122 Shanks

    Posted

    Hi shanks I'm so sorry to hear about this, there have been young people on here but not many, as it takes some a long time to get diagnosis for some, myself I suffered for years but being older 61yrs it was blamed on wear and tear. I had decompression 18mths ago, and I won't hold back it was a horrible recovery for me, sickness and dizziness and nausea first thing but subsides over time. It's good your getting sorted as the operation is to prevent symptoms getting worse, everyone is different who has posted on here regarding symptoms and recovery, but it does give you an idea what you can expect. My niece had a friend couple yr older than you and is great, was back at university within a few months. Good luck hun and be positive x
  • julia79586
    julia79586 Shanks

    Posted

    Hello Shanks,

    You seem like a very astute teenager and at 17 you are young to be saddled with a Chiari diagnosis, as Helen said it's not usually spotted this quickly. Your age definately works in your favour though and in that respect you have been very lucky because you will recover from surgery much quicker than us oldies. I'm also 61 and had my surgery 22 years ago, I did have complications but without that operation I'd be confined to a wheelchair by now. Without the op your suffering will only get worse so really your options are limited. Do you have family and friends around you for support? It must be a really scary decision for you to make. The operation itself is quite long and you will probably wake up with a very stiff neck, you'll be on painkillers though and after a little while you will notice that most of your previous symptoms will have subsided enough for you to actually be allowed to have some teenage fun for once! As my young niece would say, 'go for it girl'. Good luck Shanks, please let us know how it goes!

    • helen11122
      helen11122 julia79586

      Posted

      Hi Julia, can I ask how you are now as that's a long time ago since you had surgery. I still have dizziness and nausea which take med for. Some days are better than others. It's 18months since my surgery.
    • julia79586
      julia79586 helen11122

      Posted

      Hi Helen,

      I'd really wish I could meet you, I don't know anyone my age with this condition and it gets lonely sometimes but I do have a good family that try to understand. I have Syringomyelia so the Chiari op just slowed progression really. Basically I'm falling to pieces and have MRI scans quite frequently. The op eased the terrible head pains associated with Chiari but I still get them sometimes. Both hands are clawed and I have scoliosis of the spine. Both shoulders have irrepairable rotator cuff tears so I can't lift arms far and I have a hernia. My muscle wasting is much more noticable now that I'm older and I'm often mistaken for my husbands mother even though we're the same age! Having said all that, I can still walk and drive and haven't managed to get out of doing all the washing, cooking, housework etc. so I'm one of the lucky ones. The op itself was pretty horrendous and I remember being very ill. I went blind in one eye for a time, had hydrocephalus, meningitis, a shunt fitted then removed again. I was in the Radcliffe (Oxford) for many months afterwards but I'm sure things are much more advanced in hospitals these days.

      Bet you wish you never asked the question now!

      How did the Chiari affect you and have you seen any improvement since the op, do you have to go for follow-ups etc?

       

       

    • helen11122
      helen11122 julia79586

      Posted

      Wow Julia, as you say dropping bits, have bulging disc in back and prolapse bladder, hiatius hernia, osteoporosis, dupuytrens in the hand, b12 deficiency. But like you not got out of house work, I have a little domestic job 3 hrs 6 nights in and 8 off, sometimes I struggle a bit. But it's in end of life and dementia unit. So feel lucky in a way. Good and bad days really.
    • julia79586
      julia79586 helen11122

      Posted

      Hey, we sound like two peas in a pod, well done you for keeping working. It must keep everything in perspective doing the job you do. Where are you, I'm in Berkshire?
    • helen11122
      helen11122 julia79586

      Posted

      Northeast, in Jarrow. I had my surgery in rvi Newcastle. Been discharged though, but told me can ring up if any concerns. Left side of head still numb. I had slurred speech after op. Hubby was gutted when it came back lol
    • julia79586
      julia79586 helen11122

      Posted

      Ha ha, I get the slurred speech but only after drinking too much!

      I have a numb arm and hand, the back of my head still gets sore even after all this time but I think that's because they did the three ops on the same site. My hairdresser notices that my hair grows darker along that line so I must look like a skunk from the back. 

    • helen11122
      helen11122 julia79586

      Posted

      Wow 3 operations, were they the same op or different.

      Funny how everyone has different things with this condition. I'm never sure if it's just age or connected to the chiari.

    • julia79586
      julia79586 helen11122

      Posted

      1st op for Chiari. After a few weeks a large lump appeared on back of head and lost sight in one eye -  hydrocephalus. Had 2nd op to drain fluid, they put in a shunt (brain drain). A few weeks later rushed to hospital and put in isolation -  meningitis - shunt infected and infection travelling up shunt into brain. 3rd op to remove shunt. Hence the sore head and wierd hair growth.

      A very strange thing happened back then which I thought was wonderful and I'll never forget it.

      A lady was admitted at the same time as me for a tumor on her brain, she had the most beautiful long, curly ginger hair which fell below her waist. Hers was a reacurring tumor which couldn't be fully removed so she had to have the same op every year. We had our operations the same day and when I was up I went to see how she was, I was dreading seeing that hair of hers shaved like mine but she looked exactly the same as she did before. The surgeons cut right down along her hair parting and sewed her up with tiny stitches. Each year her hair was parted in a different place so that they didn't cut her hair. How thoughtful was that!

    • helen11122
      helen11122 julia79586

      Posted

      Wow,you really did have a tough time, I'm not sure I could do this operation again it was awful, couldn't walk a or do anything 1st couple wks. Mind they did same with my hair parted it and just removed the hair they needed to. I do get weird things like, head feels very tight and still get bit slurry at times, but probs because I never shut up. Lol
    • julia79586
      julia79586 helen11122

      Posted

      I'm not sure if I could go through it at this age so I think you are doing really well. You know what they say don't you (my surgeon told me) that women with Chiari have much larger brains than most and are therefore more intelligent! I still get a tight head, usually when I'm stressed out and hubby sometimes tells me not to drag my leg but I don't know I'm doing it. Occasionaly I feel nearly normal until I see my reflection or someone offers to help me do a perfectly ordinary thing like take change from my purse - almost impossible for me and I'm so clumsy these days, always dropping things or burning my hands.
    • helen11122
      helen11122 julia79586

      Posted

      When I tell anyone I have a large brain they laugh there socks off! Lol

      My younger sister has Ms and a lot of her symptoms are simular..

    • helen11122
      helen11122 julia79586

      Posted

      When I tell anyone I have a large brain they laugh there socks off! Lol

      My younger sister has Ms and a lot of her symptoms are simular..

  • whodatbritchick
    whodatbritchick Shanks

    Posted

    My daughter was diagnosed last year (she was also 17).  Her symptoms were acute and progressed rapidly.  She had headaches, dizziness and numbness that progressed down one side.  We found a great neurosurgeon, who scheduled surgery within two days.  She came through with flying colors.  She has recovered 95% still has numbness down her right side, and every now and again has headaches.  Now not all patients have the same recovery but it is encouraging when you read the comments given by people that are going through the same as you.  How bad do you have it, what symptoms are you having?
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