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Hi everyone!

xtixxti Posts: 3
edited 06/11/2012 - 8:53 AM in New Member Introductions
Hi everybody, I'm new to the forum and I'm basically just wanting to speak to folks who can relate to and understand what I'm going through.

I've been suffering from lower back pain for years (since I was 16, I'm heavy chested..), and started getting sciatic pains in my left leg about 2 years ago.

The pain has been going on and off until January this year when I got a sudden onset of extreme pain (about an 8/10), so I went to my GP, was given the usual analgesic painkillers and referred to the hospital.

I was sent for an MRI scan on my lumbar spine as they suspected it was a bulging disc, causing the leg and back pain. After the 1st scan they couldn't find the cause of pain, so off I went for a 2nd scan. This time a full spinal.

The conclusions from the 2nd scan were that I have a spinal cyst (a syrinx) which stretches from my neck right down to the bottom of my back. It bulges in 3 places - neck, upper back and lower back. I was sent for another MRI, this time on my brain. The results came back clear for that. (much to my relief.)

At the moment I have seen a Physiotherpist, a Neurologist, and I am awaiting an appointment to see a Neurosurgeon in regards to treatment (I have an appointment in June). I am currently on Amitriptyline for the pain as it is all nerve based.

In the space of time between my GP seeing me and my 2nd scan my symptoms have got worse. They have settled down now (only just) but they are hard to deal with. I'm just managing to go to work at the moment, which is the only thing keeping me sane.

The main reason why I've joined this forum is that I'm really struggling to deal with all this. I guess I'm looking for support and advice from those who are in the same boat.

Any advice or comments are muchly appreciated.




  • Xti,

    Welcome to Spine Health! I've not had a Syrinx, but 2 spine surgeries (click my avatar for more), bugling, herniated disks and epidural fat compressing the cord. Pain is hard to deal with for sure, but finally getting answers as to what is causing it gives us some relief - answers do help!

    I hope your doctors can come up with a plan to help cut that pain down. Sorry you had to find yourself here, but too, happy you are here as you have found the right place for support and understanding. We all have different things going on, but you will find on here "we get it" and understand. Welcome aboard!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks Brenda, you all seem so friendly and supportive here. I'm glad I found you all! :)

  • xti said:
    Thanks Brenda, you all seem so friendly and supportive here. I'm glad I found you all! :)


    You will find that on here we all 'get and give' support for the most part. What is great about this site is we 'get' each other, and understand. Something many of us don't get with family and friends, as they can't relate or understand our 'unseen' pain and other issues.

    So, jump on in, the water is warm! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • to see how things progress for you.
    My goodness I am so glad you found this forum. I have found so many caring individuals here....
    If you need to chat, feel free to send me a PM. You can click my avatar for my medical history.
  • Hi,
    My name is Melissa Daisy from Canada.
    I want to join in this forum to learn more knowledge and have more friends.
    Look forward to being a part of this community.

    Post edited by Tam for solicitation.
  • Welcome to our forum - there really are a lot of caring people here who will support you.

    I haven't had your problem, but hope all goes well when you see the neurosurgeon and that he can come up with a plan to help you with your pain. Let us know how you get on.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Hi Melissa Daisy

    Welcome to our forum and I'm sure you'll make friends.

    Do tell us more about your pain issues.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • to both XTI and Melissa. Glad that you have found us here.As Trish said, it would be great to know about what brought you here Melissa. You could maybe start a new thread and tell us about yourself.

    XtI, I am sorry that you are having pain. Glad that you had some tests done, and now that you know what it is, go from there. Wishing you all the best with your neurosurgeon's appointment in June (I too am meeting my new neuro in June)Hopefully they will be able to make a plan of action to help you.

    Please keep us updated on how you are doing...and again welcome!

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Hi All,

    Thank you for your warm welcome.

    Sorry that I've not replied since my initial post. But I got some bad news from the neurosurgeon, and I've been trying to get my head round it and also deal with the pain.

    The neurosurgeon confirmed that my symptoms are caused by the syringomyelia. And that my condition is congenital, and is not caused by a Arnold Chiari Malformation. He also said that he cannot treat me.

    To put it into his words "even if I was given a million quid I wouldn't operate on you."

    It turns out that even though the syrinx is causing me so much pain it's too small to drain. The consultant said that if it gets bigger in future surgery could be a possibility, but it seems unlikely. He said he would damage the spinal cord if he operated, so he won't do it.

    He also said that draining would only stabilise my condition as my nerves have been severely damaged.

    In a nutshell, it looks like I'm stuck with this for the rest of my life. I'll be honest, I was heartbroken when he told me. At 25 you don't expect to be told that you'll be in constant pain for the rest of your life.

    I realise that in my first post I didn't give details about the symptoms I get. Here we go -

    Migraines, pins and needles in hands and feet, inability to feel hot and cold in hands and feet, stiffness all over my body (including hands and feet), sciatic pain in both legs (really quite severe), shooting pains down both arms. Aching all over. Partial paralysis in my left hand. Severe pain in my lumbar region of my back.

    (I think I got most of them.. my symptoms are the same, but they change from hour to hour. I can have no back pain one hour, then the next I can be in agony.. That sort of thing)

    I've been trying to be positive (I'm sure you'll all sympathise with how hard that is) and trying to get on with things. I've been referred to physiotherapy and have been given exercises to build up my core muscles, a tens machine to help with the back pain (I think it's kinda working) and referred to our local leisure centre for free gym sessions to help build up the strength in my arms and legs.

    On the plus side I've been told that I can't do any damage to myself, so there's no limits on exercise (just the pain barrier).

    I'm also going for a consultation with a pilates instructor, to see if pilates would help.

    I've also changed medication, I'm now on gabepentin, which has made life easier as I'm not constantly drowsy. I am constantly exhausted however.

    I've tried looking up information online about my condition, but the only info I can find is about Arnold Chiari Malformation, because this is the most common cause of Syringomyelia. I can't find anything about sufferers who have been born with the condition.

    I'm continuing to try to get to grips with my condition, and promise to try and keep you guys posted.

    Christy x
  • Christy,

    Medical advances are made all the time. Maybe sometime in the near future, medical science will come about to give you some relief.

    I guess the 'good' news here is that you aren't restricted from exercise, as no damage will result. I don't know the structure (make up) of these syrinx's, so wondering if maybe a lot of flexation exercising will help ease the pain this thing is causing? Please keep us posted on how you're doing. Sorry you are going through this, but too glad that you know what is going on. Gentle *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Sending you >:D< >:D< >:D<

    I'm so sorry that you're going through pain all over your body, especially as you're only 25. I'd have been distraught too if my neurosurgeon had told me that he couldn't help me.

    I hope the exercise will help relieve some of your pain and do let us know how you're going from time to time.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Christy I am new to this forum but have been dealing with congenital syringomyelia without a chair malformation for 21 years since I was 18years old. I did have surgery to have a shunt place in 1991 with the help of some wonderful neurosurgery mds in several states on the east coast. I have never met anyone like me and I work in a medical field. I have had many successes in live but it is challenging and I deal with a lot of pain despite the meds and other therapys used. I would love to give you any support and info that you would like that may help you. You are in my thoughts and prayers.
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