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.
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
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!
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.
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?
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.
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?
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
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?
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.
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.
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!
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
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.
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..
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..
I'm unable to stand or sit for long periods, I can't walk for long periods or my legs give up on me, weakness in two legs and arms, numbness down the left side (one side of my leg is totally numb and its spreading to the right leg), I can't write as my hands seize up and become very painful. Very painful headaches, I can't turn my head sideways without a blinding headache, chronic dizziness, blurry vision sometimes. Often my hands seize up for long periods meaning they're just like a claw. As of yesterday I don't think I'm able to complete my summer exams because I can't write or type on a laptop. It sounds very sad when I say my goal for the year was to complete a half marathon for a suicide charity which I've given up on because I've progressively gotten worse, now my goal is to be able to stand for long enough and be physically well enough to go to the debs with my boyfriend of three years who has stuck through thick and thin with me with all this stuff going on. Its good to know there are others out there like me since I've never met anyone else suffering like me.
I'm unable to stand or sit for long periods, I can't walk for long periods or my legs give up on me, weakness in two legs and arms, numbness down the left side (one side of my leg is totally numb and its spreading to the right leg), I can't write as my hands seize up and become very painful. Very painful headaches, I can't turn my head sideways without a blinding headache, chronic dizziness, blurry vision sometimes. Often my hands seize up for long periods meaning they're just like a claw. As of yesterday I don't think I'm able to complete my summer exams because I can't write or type on a laptop. It sounds very sad when I say my goal for the year was to complete a half marathon for a suicide charity which I've given up on because I've progressively gotten worse, now my goal is to be able to stand for long enough and be physically well enough to go to the debs with my boyfriend of three years who has stuck through thick and thin with me with all this stuff going on. Its good to know there are others out there like me since I've never met anyone else suffering like me.
Let's hope having operation gives you a better quality of life. And hopefully prevent your condition getting any worse. Good that you have support too. X
Ok Shanks, maybe it's time to re-evaluate short term goals. All your symptoms are fairly typical but it sounds like you could be bordering on depression. It's very important to keep yourself as well as possible leading up to the operation. It would be such a shame not to finish those exams. I'd make that my 'now' goal by doing everything you can to keep those hands moving so that you can type and sit the exams you've worked so hard for. Your gp should be able to get you night splints made for your hands and daytime phisio will keep the joints flexible. Try to have a really healthy diet. I know I sound like an old mother hen but unless you keep those muscles working they will pack up, eat protein and excercise gently. If you look after yourself now then you can do the charity marathon later. Its harsh reality but if I'd followed my own advice then I wouldn't be this crippled old 60 year old in 100 year old body. Don't allow this Chiari to dictate the rest of your life, you will be well again but you have to believe in your own strength and ability because, armed with that you can beat anything.