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Need some advice from people who understand please...

Posted , 8 users are following.

alison93778
alison93778

Hello, my name is Alison.

Ive just been diagnosed with Chiari Type 1. I've been diagnosed previously with ME/CFS and fibromyalgia for the past 20 years (I'm 40, single mother of 1 9yr old beautiful boy)

My symptoms after a bad fall down some stairs last year, then a very bad flu at Christmas made me feel like I had MS, so finally had an MRI.

Up until then, I was a very fit person who fought all the low lying symptoms with cycling and bloody mindedness, now I can't cross a road without feeling nervous sad

I'm not too sure what to ask... And have been trying to get on with life, but I'm feeling alone and scared, despite reading alot of information and telling myself it's not that bad and it could be worse!

My employers have said if I have surgery it would be "elective" which leads me to believe non-sufferes see this as something you can put up with without surgery! I'm having various central nervous issues and in my heart think surgery would prevent this getting worse? Is this true?

I'm currently reffered to a Neurosurgeon at Salford Royal... Does anyone have any experience here??

Sorry to say hello in such a way... I hope whoever reads this is doing well and having a good day! The sun is shining here! smile

1 like, 25 replies

25 Replies

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  • hayleybell
    hayleybell alison93778

    Posted

    Hey Alison,

    Firstly, don't panic..... 😫

    There are many patients on this forum & we have all helped & supported each other. I wish I had been able to ask questions & have support when I was first diagnosed 8 years ago. But, now I am almost a year post op & doing really well.😀 Having had lovely support from like minded people....

    There is lots of excellent support & advice here, so just ask away....

    The majority of us have probably 'chosen' to have elective surgery, as only a few require an emergency decompression surgery. However, decompression surgery for Chiari malformation (type 1) requires a few things of thought.

    Firstly, are your symptoms severe enough to warrant such a major op? Secondly, there is no cure for Chiari, the surgery aims to halt the progression of symptoms (especially the A-typical Chiari Valsalva Headaches) and also to prevent a syrinx forming in your spinal canal. The op hopes to restore better CSF flow.

    So, as for your employers comment on 'elective' surgery, I would do some research & gain some legal advice regarding time off for recovery of the op etc re sick pay.

    Have a good list of questions to ask your NS when you go, as it is always quite nerve racking. Every good NS will ensure they also have a full spine MRI as well as the brain (of course) that way they can look at you as a whole! 

    What are your symptoms? As perhaps Fibromyalgia has been masking the true reason for your symptoms, that being Chiari? Who knows, I am no doctor, 😷 .? Just here to help if I can 

    The sun is shining here too ☀️😎 Happy Dayz!

    • alison93778
      alison93778 hayleybell

      Posted

      Hello,

      Thanks for replying, it's meant alot to get some advice and to know I'm not alone, thank you! I'm yet to get a Neurosurgeon appt, but have asked to be reffered to Walton for a second opinion, this is a big descion we have all been faced with.

      Im relieved to hear so many of you are doing well though smile

      At the moment, I have numb and tingly hands and toes, balance issues, myscke weakness, vision disturbance and head pressure only. From my brief period of time trying to understand what this means for different people, I think my symptoms are quite mild, but definitely there! Having said that, I've suffered with fibro pain for so many years and extreme tiredness and very weak body sites, so my problem is that this slow progression has made me tolerate what would bowl most people over if it became a sudden onset to them from totally healthy?

      I think I need to work out what I can put up with and find out if I track what rate I might worsen? I'm sure the answer to surgery will be in there somewhere. Is it possible to stabilise for years? If so... I would put off surgery.

      Thanks for your advice about seeking legal advice, I love my job, but I understand it's a business and getting a temp in for 3 months would cost a small company to the point of having to make tough decisions maybe.

      And for the further spine scan, I've only had a head and cervical spine scan so far!

      Thanks smile

    • helen11122
      helen11122 alison93778

      Posted

      You sound a bit more upbeat Alison . I'm pleased your getting a lot if different responses as the symptoms vary in everyone. I got diagnosed by my spinal consultant as had bulging disc and he did scan on head and back, goodness knows how long I would have gone on I pain had he not noticed it. At least I knew what I was facing once diagnosed. You will know when to decide on surgery, when you can't cope or tolerate the symptoms anymore. But what ever your decision there's always someone here to talk to. X
    • alison93778
      alison93778 helen11122

      Posted

      Right, that makes sense, I'm sure I will know when it's time... I hope.

      I'm sorry about your bulging disc..was this fixed too? All of me is bulging now as I've not done any exercise in 4 months smile

      I'm glad you are battling on, and that you can do exercise, there is some hope for me there. But right now the idea is enough to make me yawn!

    • helen11122
      helen11122 alison93778

      Posted

      Still on going with disc, having injections but not long term solution. Waiting to see consultant see if can hold off surgery for a while, not ready to face anymore operations yet. I have days when I'm good and others I just feel rubbish. But i have to live with this so I make the most of the good days and have a good moan on the others. Haha
  • karen71713
    karen71713 alison93778

    Posted

    Hi Alison, I can't help you much as although I was diagnosed in November last year I have just been carrying on with my life, fortunatly I am quite well and have very few symtoms. I have no intention of having surgery unless I get a lot worse as from what I have read it's not a permanent fix!! I would imagine that Salford royal has a very good Neuro department, I live in Liverpool so would be refered to to the Walton Center here. Are you scared because of your diagnoses or because you feel so bad? I get a bit scared of what may come if I get worse and have struggled with what I have always thought was normal isn't!! if you know what i mean. I am sure you will get lots of advise in surgery but I hope you get some good advise from your neuro dept, The sun is shining here toosmile
    • alison93778
      alison93778 karen71713

      Posted

      Hello,

      Thanks for being there smile

      It sounds like your case may be similar to mine? Do you mind if I ask what symptoms you have and if they've progressed since November? I've been used to toughing stuff out and am ready for a battle with either outcome, it's sad but heartening to know their are so many people out there having to be brave!

      Sun still shining in manc smile

    • karen71713
      karen71713 alison93778

      Posted

      Hi, I first went to the GPs when my normal headaches changed to more servere ones, then saw a neurologist privately, he sent me for a MRI and thats when it was diagnosed!! so my only symptoms are headaches and my eyes twitch occasionally. especially after I sneeze. I do fall over from time to time but always put that down to me being clumsy! thats what gets me, is it clumsiness or has it always been the Chiari, I drive myself mad with that question. I am no worse since November but I do take narproxen everyday, I am very lucky that I haven't more sympoms, I hope you get on well and good luck x
  • helen11122
    helen11122 alison93778

    Posted

    Hi Alison. You will get all sorts of feedback on here as everyone is different. I had surgery Aug 2014 I after suffering on going head problems for over 7yrs. But eventually the dizziness and head pressure got too much when getting out of bed on a morning. I ended up getting a diagnosis and offered decompression surgery as I was told it's not a cure but to help stop the symptoms getting worse. I'm 61 and the pressure headaches isn't as bad as it was. I still suffer from dizziness and take medication when I need it. I'm working part time now. It was a long road on the recovery side for me, but some have recovered much better than I did. I had my op in rvi Newcastle. Ask anything you like Alison and if I can help I will. I didn't find this site till few months ago, I think it helps a lot to be able to talk to people who have this condition. X
    • alison93778
      alison93778 helen11122

      Posted

      Hello,

      Thanks for your reply, I've written more in depth information above, I'm sorry you have been suffering with your recovery, but you sound optimistic about your future which is good to hear! You're right, I'm glad I felt strongly enough to ask for help, it's not like me at all.. But I just knew I couldn't do this one alone, and this seems like a good community.

      I'm not sure what my future holds, like everyone, but talking has made it real, so now I can move forward.x

  • Hope255
    Hope255 alison93778

    Posted

    Hi Alison,

    What has been done for the ME/CSF and fibromyalgia ?

    As for me, the CSF, had a blood patch.

    I was misdiagnosed with fibromyalgia. With chiari ur joints and the whole body hurts. I'll be going on my 7th year since my decompression. I'm doing a lot better, but after alot of therapy and rehab. U need to retrain ur brain after surgery.

    Don't worry, everything well be alright, just make sure that u find a neurologist and neuro surgeon at r experts in chiari.

    • alison93778
      alison93778 Hope255

      Posted

      Hello,

      I'm sorry you were misdiagnosed, I'm beginning to realise it's possible that the case with me too.. But at least we found out, I'm not sure whether to be angry at my doctor who has fobbed me off for years or be grateful that I've fought on with ignorance and less worry? Do you mind if I ask if you are able to exercise since having surgery?

      Thank you smile

    • helen11122
      helen11122 alison93778

      Posted

      I do pilates Alison but have to take it slowly getting up and down. I'm working as a domestic in a hospital after ten yrs in a office, it's only 3hrs a night for 6 nights on and 6 off. Even with a bad back and at my age, I won't give in haha, so even though I had a ruff time I'm doing ok. Just thought would mention it to keep you positive. X
    • Hope255
      Hope255 alison93778

      Posted

      I am able to take small distance walks. No bending, starching and turning because I get dizzy and lose balance. I used to be very active in sports until I started with the same symptoms as u. It took years to be diagnose with chiari, once diagnosed it took one month to have surgery.

      If you feel comfortable exercising,do it, just don't over do it as it might make u feel worse.

  • melanieheather
    melanieheather alison93778

    Posted

    Good morning alison, I agree with the others do not jump at the surgery . I did and in my experience I should have waited I was very lively before working ,and trying to deal with the effects of the having Arnold chiari, but I did the surgery last March one year exactly on the 17th and I haven't had the best out come from the surgery . But I read that a lot of people take a couple years to get all the way back to normal well what ever normal is lol. Good luck and do as much research as possible.

    • alison93778
      alison93778 melanieheather

      Posted

      Hello,

      I'm glad you can talk about your experience with me, I'm sorry you have not been given the outcome you deserve, I'm hoping this is something that can get better for you. It's an anniversary tomorrow that I can understand may bring on all types of reflection, I hope its a milestone in good ways too though.

      I will consider all the advice and help I can get, this seems so different for so many people!

      Thanks for being there smile

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