Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

11 Apr

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Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

After losing the ability to walk recently my walking slowly came back. Vertigo has not been my friend though so I never walk like a “normal” person. I knew my body was telling me something and I bought a wheelchair because I could feel something was wrong. My body was right so always listen to it. I had a lot of bad news this week not just about me so let’s just say I am a walking zombie.

At my neurologist appointment today the neurologist said “why did you come to me, you need to see a neuro surgeon asap”. He did the standard muscle testing and poked needles in my body and I couldn’t feel most of them. I have numb, cold areas down my spine, legs and feet do not work well, a lot of spinal pain. My arms are really numb and couldn’t feel the safety pins he stuck in them.

The neuro said “you are very close to becoming a quadriplegic and you should have had surgery back in 2010″. Well back then my Lyme doc said “no surgery” due to the antibiotics and the neuro surgeon told me not to come back until I was losing feeling in my arms because the surgery is not the greatest and try to get by as long as I can.

I was told by my LLMD and by my new LLND that Lyme can ruin the spine. So I am not 100% sure if this is Lyme related or just a coincidence. But how does ones discs herniate when they just lay in a bed all day and barely walk around the house? The doctors seem to think I am out playing sports.

I am going to remain positive and know that this surgery will help keep me from being a quadriplegic. I am now looking at options for surgery so if anyone has feedback good or bad feel free to comment. I am thinking about the laser surgery in Arizona versus the standard plates and screws.

I was looking at the Laser Spine Institute in Arizona. Any feedback? Better than normal surgery?

http://www.laserspineinstitute.com/back_problems/spinal_stenosis/treatment/surgery/

 

 

– Hope you all are having a better day. Keep your head up better days are ahead.

 

PS I haven’t slept in 24 hours so I may not be really writing this and just hallucinating. LOL

 

 

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24 Responses to “Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?”

  1. Bill April 11, 2013 at 2:25 pm #

    Wow! This is sobering. I wish there were something I could say or do to ease your suffering. I also wish there wasn’t a continent in between so I could help out more. Just know I am thinking of you as I’m sure are so many others.

    • 49erBry April 12, 2013 at 9:30 pm #

      Thank you Bill. I hope you are finding some peaceful days/nights.

  2. discovertroy April 11, 2013 at 2:33 pm #

    Mate, that just sounds like further negligence by these Doctors, what do you have to do to get adequate help? Good thing that your new neuro is proactively addressing the issue. If I were you I’d get a letter written by this Dr regarding the situation with your spine and then seek legal advice. Here’s hoping surgery will sort this and at the same time they bathe you in abx!!!!! Feeling for you.

    • 49erBry April 12, 2013 at 9:39 pm #

      Yeah I haven’t had the greatest choice of doctors around here. I may seek legal advice once everything seems to calm. Too many bad things going on around me. Hope you are well.

  3. Jeff April 11, 2013 at 4:32 pm #

    hey give me a call if you want to talk.i hate typing but i can give you alot of info to help with your spine surgery number one ive been through all the spine stuff and had surgery at laser spine institute and the reason the spine gets so bad is the lyme eats up the collagen the discs , the eyes the joints all are made of collagen. my phone 2033879612
    jeff

  4. Jeff April 11, 2013 at 5:14 pm #

    http://www.healthgrades.com/physician/dr-juan-bartolomei-27kv3/background-check

    this surgeon is one of the best originally from yale.he was recommended by the nurses that worked with him because they said he was the only surgeon whose patients recovered quickly and had the best results compared to others at yale. he moved on to another state. maybe arizona or texas. check him out. i went to laser spine institute it did not help me very much at all. maybe a little on my neck , but its kind of a factory. in and out and you need a top surgeon with a great track record. i wish i had gone to the doctor above, but im in ct and my insurance at the time wouldnt cover it. i just had a spinal fusion 1 year ago and a tumor in my spinal cord several years before that. these infections are brutal. hang in there. jeff

    • 49erBry April 12, 2013 at 9:36 pm #

      Thanks for the link. I don’t ever talk on the phone sorry, nothing personal just hard to talk and don’t like the noise. I will check out your surgeon. I was looking into the the latest procedure TCMD? What are your thoughts, http://www.youtube.com/watch?v=PtT2yZYNkik

  5. Barbara Brady April 11, 2013 at 5:23 pm #

    Dear God honey, this is horrible! I sure wish the doctors had given you better options years ago before this got so bad. It makes my lyme blood boil over just hearing this!!! I will pray harder for you and please, please, please keep us posted. We are here for you brother. If I can find any neuro-surgeon that can help, I will definitely shout out to you a.s.a.p. this lyme shit is a real bitch and you have suffered greatly, mostly like us others because of being miss-diagnosed and not receiving proper treatment. love ya, barbara

    • 49erBry April 12, 2013 at 9:37 pm #

      Thank you Barbara. How have you been? I don’t use facebook much. Hope you are doing better. Love ya back

  6. decimawho April 13, 2013 at 5:26 am #

    What a sack of crap! I’m so sorry you’re having to deal with all this. I hope you find some good options for surgery.

    • 49erBry April 14, 2013 at 12:24 am #

      Thank you. I am still searching for something near by and that takes Medicare. No luck yet. 3 different surgeries and I don’t like the fusions. Looking for ideas.

  7. tersiaburger April 13, 2013 at 7:18 am #

    Please consult more than one neurosurgeon. There are many option. Fusions will inevitably lead to further fusions. There is a prodisc option that works well. Good luck.

    • 49erBry April 14, 2013 at 12:23 am #

      I was hoping to avoid a fusion. I don’t want to keep coming back every 2-5 years for a new surgery. I was looking at the TCMD where they drill a hole in the bone and do not removal of your bones.

      • tersiaburger April 14, 2013 at 2:38 am #

        I am holding thumbs for you. My daughter suffered from Osteogenesis Imperfecta and her spine was terribly fragile! It caused debilitating pain in her life. Good luck. I read your blog but find it hard to “like” your posts. I will in future so you can know I am thinking of you.

      • 49erBry April 16, 2013 at 11:58 pm #

        All my best to your daughter and so sorry to hear that. Thank you for your support. I will keep you and your daughter in my thoughts and hope you find some happy days.

  8. Bambi Albert April 16, 2013 at 3:07 am #

    Oh Bry I’m so sorry to hear this, I was just thinking of you the other day and had to come see how you were doing. I was hoping to see you in DC this year. My husband has had 2 successful fusions, 1 in the lower back the other in his neck. But he doesnt have lyme, which always complicates things. I’ll be keeping better watch on you my friend. Sending good vibes and prayers.

    • 49erBry April 16, 2013 at 11:57 pm #

      Hi Bambi, I haven’t been to social lately. Hope you are progressing? I would love to go to DC but I don’t think I will be traveling for a while. I had to stop abx for this surgery and you know how that goes I am feeling worse lyme wise. Good to hear your hubby had two successful surgeries. I just want to keep from going in every few years for a new one. All my best to you and your lyme healing. Thank you.

  9. Penny April 16, 2013 at 3:42 am #

    Best wishes for the future. I wish I had the answers to help

    • 49erBry April 16, 2013 at 11:54 pm #

      Thank you Penny, and to you as well.

  10. Eileen April 16, 2013 at 3:47 am #

    I found this from Bambi’s repost. Hope you get help soon. I had NO idea Lyme could do this. I had a fusion done over 30 years ago…and it would not “take”. In all had 5 surgeries to fix a slipped vertebrae. Now is completely degenerated and what I find strange is the discs that are within the fusion are gone. GONE. How do they compress and become non existent when they are immobile for 3 decades? My doc said when lyme is in the bones it is NOT good, much like when cancer is in the bones. I did not know it could lead to this. My appointment for surgery discussion is supposed to be this week but am cx it. I can’t deal with any more pain and being down, weak for that long on top of a 7 month relapse *and counting. Wishing you well and hoping you get things started right away. Do you have help at home when you are healing from surgery?

    • 49erBry April 16, 2013 at 11:54 pm #

      Eileen, I was told by my LLMD and LLND that lyme can really mess up the spine and spinal cord. I’m sure there is the DDD but I think Lyme has caused the bulging because I literally just sit in a chair all day and never do any movement besides a exercise bike for 5 mins a day. It baffles me how our backs can deteriorate. I’m sorry to hear about situation. I know Osteomyelitis can do a lot of bone/marrow damage. I had it as a kid but supposedly was cured. http://en.wikipedia.org/wiki/Osteomyelitis

      I hope you can find some relief and get a surgery that will hold up. So sorry. I live with my parents thankfully so I have some help. Without them I don’t know what I would do. Take care and best wishes.

  11. Janet L. DeCesare April 16, 2013 at 11:27 am #

    I wish only the best for you, I understand exactly what you are saying, I am in the same predicament right now. I have spinal stenosis, herniated discs, degenerative disc disease, numbness in my feet, walking is not easy for me at times. I see a ND who is also a chiropractor but right now I doing pilates to strengthen up my core and keep myself moving. Because I know the alternative is not what I want to do, I’m only 58 and not ready to just sit in a wheelchair. I have two older sisters with ss and they are in a wheelchair. Blessings coming your way and pray that everything goes well for you.

    • 49erBry April 16, 2013 at 11:48 pm #

      Janet, that is horrible to hear your 2 sisters are in wheelchairs from ss. I have an uncle who waited to long and the ss caused perm damage so he walks really strange and cannot pick up his foot. That is why I know it’s best not to put this off too long as I am sure you know. I hope the therapy helps. Keep me updated if you decide on surgery. Best wishes to you and your sisters.

  12. Mark September 19, 2013 at 8:47 pm #

    I find it hard to believe that a neurosurgeon would tell you to wait until you start to lose feeling in your arms. It’s a known medical fact that once the nerves are damaged like that it’s irreversible.

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