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I'm 17 and have Chiari And Syringomyelia can you help?

Posted , 9 users are following.

Danielle1997
Danielle1997

I'm 17 years old and 3 months ago became very ill.  They tried telling me I had glandular fever so they gave me painkillers to ease my pain, the head aches were terrible, I was constantly tired I haven't had a decent nights sleep since this all started,  a few weeks went by and I was getting worse I had servere back aches to the point I was bent over (still am now) I couldn't straighten my back as the pressure it put on my head was to much to handle. It would make my dizzy and light headed. They took me in to hospital and I stayed there for a week. This is when they found the syringomyelia but they said the cyst is to low to cause my problems. I suffer with head aches, back aches, neck pain, anxiety, the left side of my body completely goes numb, I never have no energy, I have fallen a couple of times because my left leg gives way and I now walk with a limp. So I went to a private doctor and he found that I had chiari but he found it on a spinal MRI and said he didn't know how bad it was.. I am now waiting till the 37th of July to see another neurologist. Now to make things worst I am now having seizures that are lasting for 10-15 minutes and I when I wake up I know nothing about?.

im sorry that was also long but it's just hard to go through on your own as no one understands what it actually feels like to live with just wondering if any one could share some information with me.

thank you, Daniellerolleyes

0 likes, 20 replies

20 Replies

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  • MarieChiari
    MarieChiari Danielle1997

    Posted

    Hi Danielle

    Sorry your not feeling well. I understand and although I do not have a syringomyelia I do have a symptomatic chiari of 7-8mm. I also experience dizziness, headaches, pain, numbness. No seizures. My suggestion would be to find a neurosurgeon who specializes in chiari malformations. I have been to a neurologist and he only refered me else where he did not have the knowledge base to treat me. A neurosurgeon who specializes in Chiari Malformations is who you need. Often the wait to see them can be several months so maybe the neurologist can manage the symptoms for you in the meantime. Rest, prevent stress, and manage the anxiety....these things help.

    Marie.

    • Danielle1997
      Danielle1997 MarieChiari

      Posted

      I am waiting to see the neurologist because he is deciding where I go from there and what to do its quite scary not knowing what is going to happen next and very distressing. But thank you for replying for your help and information! Hope everything with yourself is okay. X
  • carolinagirl1
    carolinagirl1 Danielle1997

    Posted

    Hello Danielle, I may have chiari malformation too. I had been diagnosed, treated for MS for 10 years then I get a different neurologist duevto doctor staff changes and he tells me I don't have MS! WHAT? , are u crazy I thought to myself, then go5 a second opinion. Thie 2nd highly qualified neurologist says the same thing. So now chiaribis being my true problem. I had never heard of it and have been reading alot aboutvit. It seems its quite the complex thing and difficult for doctirs to make that call. I totally understand your PAIN, physically and emotionally and all the other sickness symptoms you have while being desperate for an answer and relief. It takes the doctorsvawhile to give that fonal diagnosis, at least bhere in USA. Just know people do care, and just wanted to acknowledge your discussion post. Sending a hug and a speedy answer for you, im in the same boat andvits not fun.
    • Danielle1997
      Danielle1997 carolinagirl1

      Posted

      Hello thank you for replying! And yes it is quite difficult to get to get to grips with as it's quite emotionally draining and it's so difficult to do normal day to day activitys just runs me down a lot. Being 17 I have to stop going to college and everything and I just wanted to know how others felt and that I wasn't alone!! 

      Hope things get sorted for you very quickly and wish you all the best! X

  • kimberlee_90115
    kimberlee_90115 Danielle1997

    Posted

    Hi Danielle,

    I'm so sorry to hear you have had a tough time, unfortunately it's all to common for Chiari sufferers. I have Chiari type 1 and also Syringomyelia. I had extensive syrinx which have now caused permanent spinal cord damage. I too was totally alone and in the dark, I'd never heard of Chiari before?!?! Luckily my parents did a lot of research and found a fantastic neurosurgeon. I had decompression surgery last year and the syrinx are now all collapsing. I found most of my information and strength from a site on facebook called "Chiari is for Real" it's an American site but has lots of British and even worldwide Chiari suffers who can ask questions, get information and advice, but more importantly support!! It made a huge difference to me to know that I wasn't alone and that people totally understood what I was going through.

    There is also a great book called "conquer Chiari" by a guy called "Rick Labuda" it's very informative but easy to read!

    Where are you in the UK? Do you have a good neurosurgeon?

    I'm on the Chiari is for real site on facebook, if you need any help, just shout. Take care xxxx

    Kimberlee xx

    • Danielle1997
      Danielle1997 kimberlee_90115

      Posted

      Hello Kimberlee, thank you for replying! And no I had never heard anything of the sort before so it was very new and no matter how much research I do nothing seems to be enough to put my mind at ease, I had read people having discussions on here and I thought it may help and I did not think anyone would reply so it was so nice to see people respond. I am waiting to see a neurologist I live in Kent and his name is Dr Chong and for my first appointment he was fantastic gave me answers straight away but now it's just waiting for the proper diagnoses because they aren't quite sure how big the malformation is. I did join a facebook page called the 'Ann Conroy Trust' but I am waiting for them to accept it so thank you so much for your help I will join that group and look up about buying the book!! 

      Thank you!!

      danielle xx

  • carolinagirl1
    carolinagirl1 Danielle1997

    Posted

    Question for Everyone. Do any of you have chronic pain in the legs, feet or ankles?? I have headaches but most of my debilitating pain is in my legs and I havent found anywhere on internet where people hurt in their legs. Also, I found sime interesting info on the Vagus nerve. Its a long nerve from brainstem all the way to stomach. I was told in december 2015 myVagus Nerve was damaged/broken at my stomach which has screwed up my stomach, I now have sliw emotying of stomach, on a strict special diet. Anyway, this nerve controls alit of other stuff too. I foung mist info on scholar. goggle, its a more in depth medical google with deeper info on stuff?. Hugs to all frim USA, we have sliw to diagnose here too.

    • Danielle1997
      Danielle1997 carolinagirl1

      Posted

      Yes I get very sore legs and feet sometimes they to very stiff and difficult to move. Some days I struggle with walking severely and cannot walk unaided but yes for me that is a every day symptom hope that helps
    • carolinagirl1
      carolinagirl1 Danielle1997

      Posted

      Danielle, Thanks for your reply! . Im so desperately searching for what is wrong with my body now that after being misdiagnosed with MS for 10 years. Im frustrated with doctors , waiting times, appts. It really tears you down emotionally, we suffer in silence because we LOOK FINE. I am a Christian, I know that GOD knows exactly what and where my problem is. Im putting my faith to HIM as I can no longer handke this roller coaster any longer and daily , chronic afflictions I suffer from and doctors seem to know Nothing. V. Im nit giving buo though, ywe ALL have to be our own health advocate niw. Doctors are toobbusy, too much paperwork, etc, I feel nobody bhears me, im just another number. I hope and do feel I am getting closer bto an answer wuth GOD'S helo. I will rejoice vthe day when I can post on this board " They Found It, They Know What it is Now"!!! Love and hugs to you ALL.
    • Danielle1997
      Danielle1997 carolinagirl1

      Posted

      Yes I know how you feel the waiting time is awful but then when you actually get to the appointment day they tell me one thing but then say another. No one is ever making sense because like you say because there isn't a simple explanation for it they just push the problem on to someone else.

      I was admitted into hospital 4 weeks ago they kept me in for a week and told me I had muscular pain, and I was constipated. They have me medicine to sort out both and still I am left with my problems. They then said to me well we cannot find anything obvious so I think it's best you go home. They discharged me the exact way I went in I could barely walk.

      Thank you for replying and hope everything goes well for yourself

  • stacey87853
    stacey87853 Danielle1997

    Posted

    Hi danielle,

    Im 26 as they found my chiari when i was 15. I didnt have any symtoms back then (was also found in an mri of my back as i have kyphoscoliosis aswell)but was told i might as i got older...

    Age 17-18 i started having myoclonic jerks where my hands, arms,legs suddenly spasm and throw out..do you have any of these? I also get neck ache,pins and needles numbness and more,

    I can totally understand what your going through,its tough...when you see the consultant they may should be able to offer you medication to help with the symtoms your having. Some peoples symptoms go away totally with meds,some people have to have surgery if its really bad (please dont panic from what you said about your scans it dosent seem to bad)

    Ive not had seziures with mine but every case is different...

    If you ever want to chat or just have a moan about how your feeling then just post on here theres plenty of people going through similar things and im on here weekly so will always reply smile

    Stacey x

    • Danielle1997
      Danielle1997 stacey87853

      Posted

      Hi Stacey,

      Yes like you said about the pins and needles, numbness and my legs just feel like a dead weight most of the time, I struggle walking and most of the time have to be aided. Mum got me a wheelchair as I can not go out the house anywhere or on my own.

      Sometimes my body just twitches from no where and it comes on all of a sudden..

      I have tried loads of different medication but nothing seems to either take the pain away, it dulls it for a while but the pain is constantly there. I have a lot of trouble sleeping where I cannot get comfortable but I'm always so tired so it's a vicious circle!

      Thank you for the support and for replying, I'm always here to talk to aswell

      Danielle x

  • hayleybell
    hayleybell Danielle1997

    Posted

    Hey Danielle.....

    You mention a DR found your Chiari on a spinal MRI, have you had an MRI of your brain?

    If not, with seizures, I suggest you get one done as a matter of great urgency, your GP can refer you or go straight to a&e and push for one, especially after a seizure!

    I have done a lot of research into Chiari, I was diagnosed 7 years ago with 9mm hernia/no syrinx. I had decompression surgery 12 days ago and am home now recovering. I spoke to many other ladies whilst in hospital (6more +me) all in for decompression surgery. All with different stories & symptoms.

    L

    I am happy to talk to you if you want to message me privately, are you in the UK?

    Thinking of you- chin up- your looking for all the right help & support- you may have to push the medics , politely of course, but don't be afraid to push for a result sooner rather than later hun x

    • Danielle1997
      Danielle1997 hayleybell

      Posted

      Hello and thank you replying,

      Yes I am waiting for a brain scan but no one seems to want to give me one my mum has had to fight then NHS for everything I have had. They only found my syrinx because my mum said she wanted a back X-Ray and had to fight to get one. I went in for the X-Ray and wasn't allowed home then they done the MRI. They discharged me the way I was admitted. My mum has taken me to A&E but they said because it's an on going problem they cannot help me😔 but thank you for your support and help.

      Yes I'm in the UK, I live in Kent x

    • hayleybell
      hayleybell Danielle1997

      Posted

      Bless you....it is so exhausting!

      Ok- how can I help??-

      have you been on the Ann Conroy trust website?

      They have excellent information and a list of specialists with an interest in both Chiari and Syringomyelia- I would track one down & then ask your GP to do you a referral asap.

      Ideally they like to have a full brain & spine MRI to look at when you visit, with the name of the hospital you have had your investigations done at, so that they can see them when you go for an appointment.

      Your GP should really push for an emergency MRI of your brain if you have a syrinx in your spine hun.

      I had to do this.....find a specialist in Chiari/Syringomyelia- then get your GP to refer you!

      It is possible to have a brain MRI done privately, it is not as expensive as you would think! Perhaps look into that?

      I travelled all the way to Liverpool to see a specialist in Chiari, they hope to stop the progression of symptoms, it is not a cure, but can prevent further damage occurring......I am trying to say, don't leave it too long Hun......

      Xx

    • Danielle1997
      Danielle1997 hayleybell

      Posted

      I will look into that thank you! And me and my mum have being trying to push things further we have contacted different people and no one seems to be helping. My mum has already paid for me to go private and it was the private doctor that found my problem but he then refered me back over to the NHS so my mum didn't have to pay further costs. 

      I just don't know hat to do with myself sometimes and it's uncontrollable pain most of the time just getting me down👎

      thank you you for all your help and support!!! Xx

    • carolinagirl1
      carolinagirl1 Danielle1997

      Posted

      Yes, I have looked at the Ann Conroy site. Great info. My neurologist referred me to a neurosurgeon, dont have the appt yet, waiting on them to call. That!!! Is one of sufferers problems too, haveing to wait so long, going through their stupid system. There is a Chiari Hospital in the USA in 2 different states. A long travel, but im ready. I have suffered for 11 yrs, and wrongly diagnosed the entire time. Thank you
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