My experience of Chiari
Posted , 16 users are following.
Eventually in 2005 I was diagnosed with Chiari (I was 37) and under went surgery. I was also told that I had syringomyelia. My symptoms where always diagnosed as Depression and though I kept telling my GP I felt fine, I was ignored. I think this happens to many people with this condition. Also since having surgery, people think I am now healed and over it, yeah right. My body is still damaged and as my neurosurgeon said it was not a cure it was prevention surgery.
I burn myself in the bath as I am unable to tell that the water is hot, or I find that it is not to the tempature I can feel, so it is extremely hot, but not too me. When giving birth to my children, I could not feel the reaction to push, I felt the contractions but the body couldnt react to pushing and I had to be told when to push - not enjoyable. I described to many people that I had monkey arms - I knew I had arms as I could see them, but I felt like I dragged them along with me.
I've lost most of my teeth, its like the body is too weak to maintain them, even brushing regularly etc, I have very weak teeth, speech comes and goes, you know what you want to say but often it comes out all wrong or you stumble over your words, not so much of a stutter you just slow down in talking.
Emotionally as well, I seem to be up and down and describe it like a roller coaster. I get very frustrated as I want to read etc but find concentration hard, am effected by light sometimes too bright other times too dark.
Due to a spinal problem as well I find sitting difficult as I tend to lean to the left in most chairs.
But I think most people with this condition suffer from the fact that most of our symptoms are hidden, we look normal, we dont look like we have problems, pain or difficulties and are often ignored or dismissed.
5 likes, 39 replies
emza1910 Guest
Posted
I was diagnosed in October 2011 with type 1 CM. Decompressed in may 2012, followed by a lumbar puncture in July 2013.
I did feel like Id gotten part of my life back after decompression but these last 6 mths hav been a living hell. My symptoms hav gotta worse and jus every day things kill me! For the last 13 weeks as well doctors are tellin me my back muscle are in spazum but I think it's more than that. O haven't done anything and takin it easy but it's not gettin better. I told them that I can't determine which pain is which as I'm constantly in pain, always got numbness and is Killin my fingers to write this.
I've recently jus added to a group on fb called chiari is real.
I feel so alone, with no one understanding and realising jus how much pain I'm in. The doctors hav kept melon my oramorph but that does absolutely nothin for me. I sat and cried last week in the doctors and jus said I jus want someone to help me with my pain.
My gp has told meshes worried asti suffer from seizures with my cm and I'm havin too many. I told him is due to the pain I'm in. My body's way of dealin with it. I eventually got him to refer me back to my neurosurgeon Dr Flint at Birmingham queen Elizabeth appointments the 1st October 2015, And finally got the Mri date 27th September 2015. I jus want some answers to if there's anything else goin on that would explain my pain as surely it can't be this bad unless somethin changed..
I don't hav anyone to talk to bout his condition... My sister snapped at me the other day, sayin she may not hav this condition or know the pain but she certainly sick of hearin bout my pain. It really upset me as the 11yrs I've been suffering with rhos condition I've never moaned to my family as don't see the point.. So that really upset me. Was so hurtful.
I jus want the pain to stop.. Like it did once I washout of recovery from surgery...
patsfan89 Guest
Posted
b2wc97455 Guest
Posted
So..we need to embrace ourself..be positive..keep fighting..just think..we will be better..soon.. not 100% like it ued to be..but much ..much better...you have to keep telling yourself...so keep me up to date after you seeing your consultant...I wish you luck
viola01 Guest
Posted
I spoke to a lovely woman at the Ann Conroy Trust yesterday and she suggested referring to Birmingham Hospital. It will mean more bureaucracy and trying to concince my GP who is nice enough but doesn't really want me moaning any more so I end up coming away from him feeling useless and disempowered. As a strong, capable, very qualified person, how is that this illness makes us feel like a pathetic and weak individual? Surely, having worked all our lives, we pay taxes and are entitled to a bit of support. Trying to get any requires huge effort at a time when we are exhausted, in pain and battling with anxiety of immense proportions.
Well done for keeping going. It sounds like some of you have had this for decades. Yesterday I felt that this was life-threatening. From reading your words it doesn't seem so - it just feels that way. I am grateful for that, even though it feels ghastly at the time.
yeltzer viola01
Posted
viola01 Guest
Posted
He was resistant to going to see Mr F just yet...I'm just a bit bewildered by it all now. I'll hang on to that as an avenue though once the next round of tests are done, hopefully next week. Yes, I agree that there are many hidden and very potentially scary outcomes. Do have to try and stay balanced and positive whilst being strong enough to fight our corner, even whilst being in terrible pain. Mad isn't it?
I appreciate your kindness though. How marvellous to have found a platform of support. The first I've come across in all this time. I don't like the US forums. They are all a bit bonkers.
julia79586 Guest
Posted
I've just found this thread and have Syringomyelia and would love to talk if anyone is around?
julie73778 julia79586
Posted
Hi,
Just discovered this forum. Most of the ones I've seen before have been American!
I was diagnosed in 2006 at age 21 after suffering with severe headaches and neck pain. Triggered by coughing, standing too quickly, moving my head around or just out of the blue! I saw a neurologist and I was found to have decreased pain and temperature sensation from my neck down to my waist on my left side of the body. Had my MRI and found the cerebellar tonsillar herniation and large syrinx. Had the decompression surgery in March 2007. Follow up scan showed good progress and I was discharged.
Everything has been good for past 9years but I've had a few episodes of similar pain this year. I got really worried and saw a neurosurgeon (my original one from Newcastle is retired!) and got a repeat scan. Luckily - Nothing new on the scan, just changes post surgery.
The only thing that's happened in the past few years is I've had a baby. But being very cautious, I didn't have a natural birth but a c section under GA.
But as explained to most people here - the surgery is not curative.
I've been advised to have another scan next year to follow up the changes.
Hopefully the pains don't return and I don't need any further procedures.