My 17 year old daughter was just diagnosed with Chiari I Makformation

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My daughter has been suffering with headaches for approximately 10 months and they started after she had a concussion, so we assumed that the consistent headaches, hand/foot numbness, neck pain was all associated with that, however, doctor 1st ordered a parasinus(think that was name) x-ray, it showed a 1.7 cm mass on the nasopharynx, unclear of exactly what it was. She then had an MRI and was diagnosed with Chiari I Malformation. We went to see a Neurosurgeon and he was very thorough but now we are in the decision making process.....my daughter says even if there is a possibility of no more headaches and less or no more neck soreness...and if I will eventually need the surgery why not do it now and be done? Any advise is appreciated.

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  • Posted

    Was facing this dilemma too, but have now decided to go ahead with the surgery. I can't, and don't want to tell you what to do, but if it helps, here is what helped me with the decision. I spoke to a lot of people in Facebook groups about it when trying to decide!

    For me, the main thing is that since being diagnosed 18 months ago, my symptoms have progressed rapidly. I no longer feel that I can cope with them, and so that obviously makes the decision easier. However, a couple of things were said to me which helped. Firstly, I'm not getting any younger (I'm 36), and my body is not getting any fitter! If I know I have to have it done at some point anyway, then I may as well have it done when my body has the best chance of recovery. I can't really exercise etc now so the longer I leave it, the less healthy I am to face surgery. Secondly, damage done from compression of nerves etc can become permanent, so it's better to do it now while they still can recover. I would be gutted to have surgery and then not have the maximum amount of benefit from it, because I'd left it too long and the damage was the permanent.

    This is just what helped me decide, and obviously no one can really tell you what you should do. The main thing I think is quality of life. How bad the symptoms are, and do they interfere enough to make it worth it.

    It's a really hard decision and not as simple as some surgeries to have done. I wish her, and you, all the best with it! X

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    • Posted

      I agree with you. It's about quality of life- if your symptoms are making your quality of life poor, then go ahead and get it fixed. If your symptoms aren't that bad, then maybe you can wait. My symptoms came on really fast and got worse fast, and QOL went down the tubes. I wasn't able to drive after last November, I had trouble walking to the mailbox, walking around the grocery store, etc. I had NO QOL. Having to go in a taxi or Uber is really not good!!!  Actually, if they had made a diagnosis sooner, I would've had the surgery sooner. Losing independence, eyesight, etc. is miserable. And then there is the pain...

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    • Posted

      Losing independence is one of the worst things, right up there with the amount of pain we all live with. I hardly leave the house now, and never on my own, because I fall so much or get disorientated. I hate it, because I have always prided myself on my independence!

      How was your surgery and recovery? Where did you have it done, if you don't mind me asking? Are you much better now or still symptomatic? X

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    • Posted

      I had surgery June 2 at IU Methodist Hospital in Indy. My doctor was from Goodman Campbell Brain and Spine. I got referred from St. Francis because they didn't have the equipment to do an MRI Cisternogram which shows whether the CSF is blocked. Mine was totally blocked. All symptoms are gone!! I feel 150% better!

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    • Posted

      I don't know. I would guess that in some cases you don't get worse. I'm 57 so I've apparently been living with Chiari for a long time and didn't get worse until last fall. OR, Chiari could have been the root of all other illnesses I've had over the years. The risk you take if you don't get it decompressed is that it could get a lot worse and you could have permanent brain damage or dysfunction.

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  • Posted

    Hi Barbara,I'm sorry to hear about your daughters illness , and now the decision you want to make , I've knowingly had chiari since 1995 and left it as long as possible because I kept being afraid it may leave things worse , then lost a lot of sensation in my upper body I've also now got a claw hand which I believe is not as usual but my fingers one by one started to bend now three are turned in , then in 2005 the decision was made for me then because there's a chance what damage is done may not get better so my mind now says I should have done this before,yes your going to be afraid but you'll be in good hands and hopefully you'll stop it at least getting worse, think hard ask questions and good luck , as you can see there's a lot of us about . So that's a good sign

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    • Posted

      Thanks! So that is the information that I am trying to ascertain, does it always progress or can the level it is at now remain?
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    • Posted

      I wouldn't like to say it will always get worse, my symptoms started about 1990 but not diagnosed until 95-96 but things weren't not as good then and I did keep pushing it to the back of my mind ,I had trouble dealing with the pain and still working as I was a sewing machinist, I think it can progress at different speeds because with my hand it was a little bend then more and more , we' re all different thank goodness. But as for the operation it went better than I had hoped and at least I know I've now done what I can to help it not progress , my advice would be not to feel rushed but keep being aware of things , if you see or feel things are changing more quickly than you thought get it checked , good luck with things I hope I've helped in some way , it's frightening for you especially as it's not that well known get that right in your mind get the pain under some control , one step at a time and the decisions will come it's hard for family members as well , wish your daughter well and tell her it's manageable that's What I try and keep in my mind at least but she may have bad days but tomorrow may be better. Take care both of you

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    • Posted

      It can progress or it can stabilize. But if her symptoms are a problem with living normally, there is no good reason not to fix it. The surgery I had was 5 hours; stay in hospital 4 days. Worst symptoms after going home were nausea from the painkillers, but it all gets better. I went on an airplane at 3 weeks post-surgery and the worst thing about that was walking around the airport. It takes awhile to get strength back in legs post surgery. But now I have none of the pre-surgery symptoms!!
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  • Posted

    Hi Barbara, sorry to hear your daughter is going through a rough time I was also 17 when diagnosed and honestly it is not easy to deal with. I was actually wheelchair bound because I could not walk no longer than 5 minutes and was hunched over for me surgery was a relief I am now nearly 9 months post surgery and am still having problems but not as bad. If she wants to go for the surgery I would say do it. The headaches, neck pains and everything else have not completely gone but are better then they was before. It's just a chance we have to take in the situation we are in. Hope everything goes okay and you get the answers your are looking for x

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  • Posted

    Go ahead and do it!! I had mine done 2 months ago and am doing great!! No more headaches, dizziness, imbalance, disorientation!!
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    • Posted

      Thanks for your input, can you tell me is an 11 cm tonsil going to get worse or remain at 11 cm? What was your recovery time
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    • Posted

      It depends on if the tonsil is totally blocking the cerebral spinal fluid (CSF). In my case, I had an 8cm tonsil which isn't that long, but it had totally blocked CSF. In which case you want to get surgery!! The tonsil is getting pressed through the foramen magnum by the fluid trying to get through- the fluid keeps hammering to try to get through and this makes more tonsil go through.

      My recovery went pretty well: 5 hour surgery, 4 days in hospital. I had trouble with nausea from painkillers but you can take Zofran for this. I had a walker the first few weeks, but was able to get around it by the third week- I was on a plane flight after three weeks!!

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