Posted , 15 users are following.
I've just been diagnosed after having standing MRI for a completely different reason for a personal injury lawsuit....I would like to talk to anyone diagnosed in later life...I'm 48...,freaking out here...
1 like, 28 replies
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loopytindraws christinejava
Posted
I am feel lucky to jhave the diagnosis at least I know what is wrong with me I was worried about MS,Parkinsons and Motor Nurone. I do not have much pain just head pressure so no need for anything but basic pain killers. I am not sure what you want to know but if you have any questions happy to give you my limited knowledge. Liz
Kel230213 christinejava
Posted
Just come across your question, I was diognosed with having a chiari malformation and a syrinx in my spinal cord last June. This was found due to having an MRI looking at the cause of my left arm sudden weakness.
I have my decompression surgery in January this year 2016 and without scaring you havnt walked since. I was mobile b4 even walked to theatre my only problems was upper limb weakness and numbness. I'm 33 have 2 daughters and am wheelchair bound outdoors and a tripod stick inside my house has been equipped to that of someone that is about 80yrs old.
My advice is Hun Do some research before they offer you the surgery. Honest to god it's the worst thing I've ever done, I feel so guilty and feel it has destroyed my whole family's life.
I still have all the symptoms headache. Weakness neck pain sickness everything I'm now wondering why I've done it as nothing is changed only made my life hell.
Hope you find this useful if not I'm sorry and wish you all the luck.
sarah18145 Kel230213
Posted
I am so very sorry to hear this that is just awful, really feel for you. Did your surgeon say that surgery was your only option? I'm waiting to be seen but from what I've read I will only go down the surgery route as a very final thing.
Wishing you all the very best and I hope that things improve for you.
Sarah
loopytindraws Kel230213
Posted
I know we are all so different but don't lose hope. You are really in early days, I don't think they really explain how long it does take but you may feel much better in the months to come.
I had my surgery 11 months ago and in the first few months I even had trouble seeing I could not read , concentrate or walk unaided to begin with. I used a stick for a while and it really helped now I find I do not need it. It is a very long slow recovery period from this kind of serious surgery, rememer you have had brain surgery it does not get much more serious your body it still in shock.
I have managed to get back to work, some days I just want to sleep but I try and do what I can and I am getting my life back. I am really luky I have a great partner and he just keeps me going but when I need to cry I cry. If I need to sleep I sleep if I need my pain killers I need them. Listen to your body and try and concentrate on the things you can do, I am sure you daughters love you and would rather have this you then no you. Accept all hugs and love you deserve it. X
b2wc97455 loopytindraws
Posted
b2wc97455 Kel230213
Posted
julia79586 christinejava
Posted
I have Syringomyelia and had a decompression at the Radcliffe in Oxford over 20 years ago. My symptoms were bad, terrible head pains, back pains, clawing of one hand, numbness etc etc. The decompression operation is a serious one with a long recovery period. For me, the op went well. I slept for 2 days afterwards and was in hospital for 1 week. Unfortunately, a blockage occurred and I had to have a shunt fitted which then became infected so was eventually removed. I was glad I had the op because it does help take away some of the pain and I would probably be in a wheelchair now without the op. Having said that, I am still suffering with the disease and the shrinx is still there. I now have 2 massive rotator cuff tears so both shoulders have packed up and I can no longer lift arms. Both hands are now clawed with numbness in arms. I have a hernia and my legs are weak making stairs difficult and I too am scared because I don't know how bad things will get. I'd love to meet someone else with this horrible condition just to be able to talk, no-one else would ever understand our problems because we look almost normal!
nats2113 christinejava
Posted
b2wc97455 christinejava
Posted
Hi there,
so, it was coincident that you were diagnosed with Chiari Malformation? - then the previouis helath care profesionals who chekced on you - were is-diagnosed..(LOL) you can issue a law suit as well to them..!!! for mis-diagnose case.
As this new diagnosed was a lawsuit - could you ask them does this chiari is happen after the accident?...COZ.some people can have it, but asymptomatic..but then its become symptomatic due to accident (like myself) so you can put that as an issue in your claim, do not settle it until you decided to have decompression. I am the one who do not believe in surgery, but my pain just unbelieable I could not stand it, so I agree to have surgery, but now I am pain and drug free, I am the lucky one, because a few patients still suffering even after surgery. So choose the right surgeon who had experiences in decompression.
GOOD LUCK>>!!1! do not leave it too long..
sharla1972 christinejava
Posted
I am 43yr old and I found April 25, 2016, but looking back I have had symptoms for 5yrs. I can tell you I was very scared because surgery was my only choice because fluid had stared building up on my brain it was so overwhelmING that I cried for a few day I mean found out that I had chairi and need surgery so quick was just to much. I'm now 2 month after surgery some of the symptoms are still here bUT not as bad as before. Doctor says that I should make a full recovery in about 6months
b2wc97455 sharla1972
Posted
loopytindraws christinejava
Posted
Hi, I was diagnosed after a fall at work. Whilst in the hospital a nurse noticed I was very "wobbly" and when I told her I had been wobbly for the last 20 years she said it was not normal. So at 47 I wad investigated and finally found out what was wrong wth me. I have never really aiffered from head aches, but I had tinatus, twitch, musel weaknes on one side , wobbly vison and bad balance. I fall a lot and am always covred in bruises. I am also sick a lot which turns out to be a swallowing problem so I had my decompression surgery 12 months ago.
I am glad I had it and I recovered well and was back at work in 5 months but I since Chrismass I have started to regress, I am really tired and am starteing to get headaches and my twitching is getting worse. I am still glad I had my op but it was hard to get back to my consultant when I started to get worse again so try and keep in touch even if you think it is going well. I am just starting a new round of tests MRIs, CF fluid flow etc and amy worried it might mean another Op but I will stick with it. Good luck to you my best advise is try and describe as best you can wnat you are going through to who ever is caring for you, unfortunalty we look normal and unless you tell people they "forget" you may need to pace yourself a, go a bit slower or are just suffering some days. It is not that they don't care but it is difficult to allow for what you can't see. xx
Dizzyjct christinejava
Posted
I've just found your post, don't know how I missed it, but cant see replies . I googled Chris Derham Chiari , and this is what I came up with . How is it all going for you ?