I don’t know what to do!

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I am male

Currently 33 yo

I had decompression surgery  around 1996 or ’97, I was told that I had had Chiari 1 Malformation and my spinal cord was fused to my top vertebrae. I never had any pain from the Chiari, just a stiff neck before having any surgery (nothing that couldn’t be helped by a chiropractor).

I was “normal” until 2012 when I was celebrating my birthday, came home, missed my bed, and hit my carpeted floor hard enough to gasp.

The next day I was slurring my speech and everyone thought I was still drunk from my birthday. The day after that I went to work and my boss could not understand me, I had to repeat myself. I didn’t think anything of it at the time.

About a year after that I got double vision and I was unable to drained my bladder all the way (I saw the corresponding doctors for these probIems, to no help).

I went to a 2015 New Year’s eve party at my friends house and noticed I was dragging my feet. A couple days later I lost my balance and was unable to walk.

I went to the ER and saw a NS he ordered a MRI and saw that my tethered cord needed to be untethered, thinking that was the cause of my problems.

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14 Replies

  • Posted

     I thought that I could edit the post after I posted it, I don’t know how. 

     Well, fast forward to now, I am just laying on my bed (because I have been getting worse!) because this is the safest place to be.  Nobody! not even my own parents, understand me! I have just got copies of my MRI images and have been trying to set up my computer to view them. It’s difficult because of the way my vision is and the way I can’t control my limbs. 

     I thought it might be my Chiari because my dad said “what, are your feet glued to the ground“

    Well, thank you for reading and sorry for the length of the post. If you have any suggestions or ideas let me know, I will be here waiting! 

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  • Posted

    Justin,

    I had the Chiari decompression surgery, and the "safer" form of tethered cord surgery in Barcelona, Spain.  The neurosurgeon does the 60 minute surgery and you are walking around the same day!  The Chiari surgery saved my life from respiratory failure, and the tethered cord surgery (filum terminale dissection) provided more relief but I still found myself in bed for 2-1/2 years.  Well, Jesus led me to kneeling and putting my head in my hands on the floor (looks like you are praying when you do this).  Well, it took about two weeks for this "inversion" therapy and I found myself getting rid of my Chiari symptoms.  Now, 8 months later, I am still out of the bed living life again.  Like a diabetic takes his insulin daily, I will have to do this safe form of inversion therapy about 60 minutes a day.  I was so bad off that if I can be helped, anyone can.  I have modified the therapy where now I stand and lean down and read a book for and hour or so.  The only thing I can think of is that it is/has pushed my brain back into my skull...which improves CSF flow and thus decompresses the brain stem and relieves Chiari symptoms.  Please promise you will try this for a week or so...and let us all know the results.  A girl with Chiari here in my town saw "miraculous" results in two days after I showed her this therapy!

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    • Posted

      Justin,

      Let me clarify: my Chiari surgery was her in the US, and my tethered cord surgery was 6 months later in Barcelona, Spain.

      Godspeed,

      Steve

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    • Posted

      Thanks for the reply Steve! Yes,  thank God, that sounds good, I read your story on here. I suppose I will try the inversion therapy and see if that changes any of my symptoms. 
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  • Posted

    Hi there,

    when do you have to untethered your cord, how could they see that?? have you have your MRI would you be able to attach it so that we can see an example the tethering cord

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    • Posted

      I had the untethering surgery like two years ago but, unfortunately, I was told by another doctor that it has tethered back, again.  I don’t know how he kew either (I was wondering the same thing too, at the time). I will look and see if I can send the MRI file on here (I’m having a hard enough time navigating it, myself) since it’s a

       big MRI file. I will try to find the one the NS might have seen, on the disc I got from records. 

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  • Posted

    My wife and I chose to have the tethered cord release surgery at the Institute de Chiari in Barcelona after a lot of research and prayer.  They do extradural (do not touch actual spinal cord but release the end - called "filum terminale dissectum"wink as opposed to intradural where they go into your spine and untether.  Two neurosurgeons in the US do the extradural and then the clinic in Spain being the third, whereas everyone else we researched goes into your spine which can have dangerous results and can actually lead to re-tethering again.  The waiting list just to see the two US doctors was six months or more, and was out of network for insurance, and if you add in the pretesting it would have taken me a year or more with that route.  Testing and surgery in Spain was completed within six weeks of our decision to travel there.  I was required to spend the night in the hospital there, and was released the next day.  They also require you to spend 10 days near the clinic so that they can give you a thorough exam before you travel back to US.  Pain was minimal - my wife and I were walking around Barcelona the next day.  The intradural surgery requires lengthy hospital stay and possible post-op problems and recovery.  The Institute de Chiari in Barcelona and the adjacent hospital where they do the surgery provided the most professional medical path I have ever witnessed.  My neurosurgeon in Spain spent almost two hours with us during the initial consult and showed me all things relating to my case that the US doctors just blew threw or missed or wrongly diagnosed.  The hospital was clean, orderly and provided my wife and I with constant care, including English-speaking staff as needed - same for the Instituted de Chiari.  Cost was about 25,000 US dollars for surgery, flights, hotel and meals.  Our church set up a GoFund which helped.  Surgery for me was worth every cent.  My medical journey in the US started with being poisoned by Ciprofloxacin when I went into a hospital for a simple kidney stone.  Cipro destroys collagen and connective tissue and accordingly attacked my spinal cord and brain to the point where I went from never being sick in my life to becoming bedridden if 4 days after being administered that evil drug. Six months later came the Chiari surgery whcih save my life, but they removed the back half of C1 which I found out later that they did not need to do and caused me to have cervical instability.  The tethered cord surgery save my life again, and the inversion therapy got me out of the bed and has kept me out of it for the most part. 

    I do not share my medical records over the internet, but am glad to help in any other way.  Stay away from Ciprofloxacin, it literally caused my Chiari by having my spine (connective tissue) pull my brainstem tight and pulled my brain (collagen) down.  They have linked Cipro to Gulf War Syndrome, it was created for Anthrax poisoning and now they give it out for even simple urinary tract infections and never tell you the dangers of it.

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    • Posted

       Well, thanks for the info! I’m not sure when my cord became tethered to my top vertebrae. So I don’t know when it got like that because I was fine and walking around my whole life, up until three years ago.  The hard part is that nobody understands/believe me when I tell them what’s going on. It’s gotten to the point where I am frustrated and don’t say anything just because I know they won’t understand me anyway.

      I trust God‘s plan but, it’s very difficult for me, sometimes, most of the time.

      One neurosurgeon thinks that it is my spinal cord which would mean, it’s my Sringx, I have never heard of that affecting anybody the way I am affected.

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  • Posted

    Hi Justine, that they find out that your tetthering cord from the MRI/Scan??
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    • Posted

      Yeah I guess he saw it on my MRIs. Just to let you know, my tethered cord is at the top of my spine attached to my top vertebrae, NOT the bottom of my spinal cord. 

      My MRI images look way different then at the doctors office! So, I need to find out what program the doctor is using! So I can see what’s going on, myself. 

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  • Posted

    Hi Justin

    How are you doing since you wrote this post?

    I understand when you said no one understands what you are going through....I have same situation....Are you on facebook or instant messenger would like to discuss this further with you

    MarieChiari

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    • Posted

       I am doing okay I suppose, I get to see a neurologist on Friday, so that’s good. Hopefully he can tell me more than the neurosurgeon did!  I have just stopped trying to make others understand me and it seems to be working in my favor.  I don’t have either at the moment. Can you talk on here? Through the PMs? 
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    • Posted

       The neurologist was of no help!  He didn’t give me any explanation and said it was probably like that from my Chiari, which is not true. He did not look at my MRIs and he did not look into my symptoms. He just came in and gave me paperwork for exercises to do to stay strong!(I have a hard time grabing things, I am starting to get claw hands) In my opinion, it was a waste of time. I really need to find someone familiar with Chiari malformation! I really need to find someone familiar with Chiari Malformation! 
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