You're so right!! I used to fall over and pass out all the time for no apparent reason, one of my bosses actually accused me of doing it for attention!!!
This has happened all through my teens and only now at the age of 42 did I get diagnosed, it's horrendous as it's so unknown here!
I had my surgery with Mr Bukhari and he was amazing, not so great with his bed side manner but great steady hands!! Ha ha
Take care xx
Hi kimberlee! I have just joined this site on recommendation from my R.A. Dr! So sorry to hear how you have been suffering! Can I just tell you that I had decompression surgery 22 yrs ago I knew nothing about syringomyelia? until I burnt my back through leaning on a hot radiator, I had a wonderful dr who is now head of nuro surgery in a Greek hospital now, I have some other back problems and the ra for the last couple of years, but that decompression op stopped me from ending up with more problems, I am sure, I do hope you have come through it, it took me a year to feel well after it and I had three children at that time, so if you need help, or it's offered take it.
Hi,
Thank you so much. I'm almost a year from surgery now, and although the pain, numbness & pins & needles are the same, I think I'm learning how to deal with a lot better. It's so hard for me to ask for help, as I've always been so independent, but I'm getting better at that too!
One of the worse parts of this awful thing was feeling completely isolated and totally alone, nobody understood, even medical professions too!!! So thank you again, it's nice to know I'm not alone.
Take care
Kimberlee xx
Hi,
Like you, I was feeling completely alone, nobody understood even though my family tries so hard to.
I went onto social media in the end and actually found a few people within my local area all with Chiari malformation and related disorders. They have been a complete lifeline, all swapping info and understanding and even lots of giggles!!
I hope you're doing ok.
I'm thinking of you.
Take care
Kimberlee xx
You are exactly right. I had the decompression surgery in October of 2013. I still don't feel right.
My neck hurts all of the time, I have very little drive.
I am glad I had the surgery because most of the bad headaches are gone.
I have been diagnosed with occipital neuralgia. I get 4 nerve block shots in my head every 3 months.
They don't work.
My neck is totally messed up and I can't find any relief.
Hi, Ive jus came across this post whilst googling.
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...
Dear Tramsteer,
I am new in this forum, I went to my Neuro Surgeon yesterday as I was diagnosed due to my blacked out last year, after several lumber puntured treatment and GON (blocked on the occipital) did not help my neurologist referred to the neuro surgeon called Mr Graham Flint and I just googled him name and itd directed me to your note, would you mind telling me a little bit about him , how do I contact him..has he done lots of CM surgery...how is his success rate..have you done surgery with him..how do you feel now..reading from all this sites and what my neuro surgeon told me yesterday..it is really confused me even more...whether I should put up with the pain...or should I under go the surgery..it seems they are no better wheter having surgery or not..its seems that your life is not better ..so what is the difference then..????
Dear Kimberly,
I can't help but noticing what you have writen here, I hope you are still active, I am glad we have a forum here, I went to my neuro surgeon yesterday, he was very honest about the risk after surgery..is just what you described here...is just make me scare even more..whether to have or not to have surgery...so..are you saying that even after the surgery you still facing the pain and have no Quality of Life. (I might be misunderstand what I read here) so if you can turn the clock...wouldn't you the OP? how are you coping now on daily basic..I am feeling so bad for you..for that guy to shout and swear at you at the car park..have you not got the disable badge to display?
Dear Kimberlee where is Mr Bukhari based?, has he got a good success rate?
Graham Flint is the top man for CM surgery in the country, and he is a very nice person. His success rate is outstanding. Good luck to you.
Hi Laura,
Nice to hear from you again, but i am so worrry though..after listening to my Neuro surgeon yesterday..it seems that the impact after surgery could be worse..and reading from Kimberly and some of the rest..it seems they are getting worse than better after surgery...huuuu..huuu..what do I do???, I really scare....I do not want to be disable...though.. what about you, because you are much much better off now than before aren't you?...where do you live?
See Graham Flint he is very understanding, not your bolshie type surgeon, and will answer any questions, actually he encourages and welcomes them. I had him for my decompression and although I still get some symptoms even now they are nowhere near as bad as before my op. I don't pass out any more for one. The op releaves the symptoms however you can still get some symptoms even after, not as bad though. The jury is out on wether a hernia can reoccur and occasionall scar tissue can give you some problems but never heard it reported after Mr. Flints ops. See him he is a nice man. Good luck
Thanks hun, I will I just send a letter to my GP to ask to be refered to him as NHS patient if it is too long than I might have to get private 1-2-1 appointment than go as NHS patient..I will let you know how I am getting on with him, I also would like him to give a seminar/talk in my area as lots of health care professionals in my area (Dorset) have no clue about this condition. but saying that they are very honest about it.
I'm going through some of the same symptoms 2 years later. Cognitive impairment, I have to close my right eye (or left idk) when I look to my right in order to focus, my hearing and vision has dwindled a little, and I get the sharp sting in my head every now and again. Now it's starting to effect my emotionally. Depression is a difficult thing to deal with lol. But in all seriousness, will we ever be normal again?
Well, when I spoke to some of the chiarian and health care professional, they said that after the operation 80% of them should feel much better than before operation - but there is no cure, you are still effected by the malformation - perhaps what you can do now - is trying to accept your condition and take a little step at a time and enjoy your life. Be positive, yes Chiarian just like ME/Fibromyalgia because you look normal..actually is disability..even though is very painful unlike cancer can be fatal with these condition it is not life threatening. Sometime I feel I would rather not living than having this condition because I have no quality of life anymore, but then when I think deeply..perhaps I just being petty and feeling sorry to myself..and just force myself to be positive..to realise when I am feeling better..I can appreciate what a healthy life mean to me.. every one have a purpose in life..perhaps we were born to share and advice our family , friends to look after their health..because..nothing worse..not having their health..I know now..but I just never appreciated what I have before..I used to work..work...and work from 6am till 11pm..24/7...now..what the use..you can have lots of money in the world...but thats mean nothing...
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
Reading these posts makes me realise that we are not alone. I was diagnosed with syringomyelia last year after three years of blinding facial pain and episodes of blackouts and inability to walk (with a couple of A & E visits). It seems that GPs find it hard to deal with (no money?) and despite going to what I thought was a top London hospital, I still feel no further forward. I had to come home from work yesterday having an episode where I lost the sight in one eye and my legs went...not very nice in front of a class full of kids. How do you all cope at work? That's my biggest battle. Taking time off is awful. I don't want to stop working but its unpredictability makes any planning a nightmare. The huge range of drugs make some impact but don't really help: we just live with it to a degree until the next thing strikes.
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.
Graham Flint is an excellent surgeon at the Queen Elizabeth Hospital Birmingham, and a nice bloke to match, if you can get there you'll do fine. Have you seen the Youtube "Conquer Chiari Walk 2011 Fredericksburg" guest speaker top US surgeon, recomend it. Skip the intro till around 40 and listen to what he says. Particually like the bit were someone is discribing their symptoms and he says the doctor is thinking how can I get rid of this patient out of my surgery. It seems to have happened to so many people on this site. Don't want to frighten you but in some curcumstances it can be life threatening, rare but it can be. There are so many symptoms, I was reading the other day of some one who had 49 different symptoms, again this is an exceptional case but everyone is different. What I am trying to say is that you can read all the comments, we will all support you and wish you luck,share our expirence but in the end it is your expirence.
Thanks for your kind comments. It certainly is a minefield. The GP isn't convinced that the latest manifestations are linked to the syringomyelia (he isn't convinced because he hasn't seen the actual scans - wish the consultant would actually share ) and I'm now having investigations for mini-bleeds in the brain. Delightful.
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.
Hello,
I've just found this thread and have Syringomyelia and would love to talk if anyone is around?
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.