Neurosurgeon Visit And Lyme
Last month my Neurologist told me my he found a new spinal cyst, more bulged discs and my spinal stenosis was worse. He told me I was one “small jolt away from be paralyzed from the neck down”. That’s enough to scare you. So I was a little nervous for my appointment yesterday with the neurosurgeon.
For the first time ever my neurosurgeon really surprised me with his answers and he was a really nice guy. I won’t bore you with how the long appointment went since he was running an hour behind. He was probably one of the nicest doctors I have since since this nightmare started.
The first thing my neurosurgeon asked me when he walked in was “did your kids do this pain chart’? (I posted a picture of it below) My pain chart circled the whole body and I filled in the various shapes all over the body. He said “there is no way your spine is causing all of these issues you must have an illness” and I told him about lyme disease. He said that makes sense.
So after going over some physical tests with my and my 2 CD of MRI scans he said my neck was worse. He said I have “hypermobility” and he can tell by my fingers. He measured the compression on my spinal cord and said that it wasn’t enough to cause he to perform emergency surgery. He seemed confused the whole time we talked.
He said I do not need surgery and I should be fine. He blames my paralysis and loss of ability to walk a couple months ago on lyme. Yep he actually told me he believes I am really sick and lyme is causing it all. I can’t believe a neuro said these words. So no surgery and no plates and screws. He said he can do the surgery but with all of the pain I have he said “what is the point you wouldn’t know if it helped anything”.
He recommends I go to a well known hospital and have a a community of doctors or meeting of the minds to figure out what is all wrong with me besides just lyme. He saw my medical records and each doctor has different diagnoses such as Fibro, Lupus, Lyme, CFS….. so he said I need Dr House in my corner who will figure out exactly what is going on.
He said I was a nice guy and he really hopes I can get some help. Which was very kind and doctors have never said that to me. He even talked about the 49ers with me. I was very pleased with the visit and happy I do not need surgery. Although it doesn’t cure the paralysis, radiopathy and pain at least he said it was the lyme and not my spinal cord for sure.
My pain chart. My hand cramped or I would have marked more.
49er Bryan
Lyme Inside - Living with Late Stage Lyme Disease 
Mate that pain chart made me laugh, sorry. Not good your pain is so severe!
Did he setup this Dr House visit for you?
Ha ha it’s okay to laugh. It’s just when they say mark where your pain is and from 1 to 10 I think wait “healthy people pain scale or illness pain scale”? He said he was going to set up two visits with Dr House type of doctors but we will see how that goes. Keeping positive though. Hope you are doing okay.
That is such good news about the surgery and the promise of hope from informed and passionate doctors! Perhaps you should share this nice doctors name and city, so he can get good press and you can help out others like you who may need someone like him to rule out false diagnosis!
Thank you. His name is Gary A Schneiderman from the Sutter Neuroscience Spinesurgery in Sacramento, California. He was joking with me and shook my hand for a long time. Really made me feel like he cared about me and nobody has ever done that. He didn’t seem like the others just trying to make a dollar from surgery that isn’t needed and was honest with me.
Arghhhh!!
Wow, you really are having a rough go of it. You know, by sharing your journey with Lyme disease has really helped me and so many others to understand just what we are going through and know it’s not just in our minds as many people think. God Bless you and know I’m always here for ya. Remember, you are NEVER alone in the fight against LYME!
Thanks Barbara. Before becoming so ill from Lyme I remember talking to others and they were disabled, i thought wow I hope this never happens to me. You never know when these bugs will take what little you have left. It is a rough journey for us all regardless of how many years and how ill we are. We just need to rally together for awareness and support and hope. Thank you and best wishes to you friend. Hugs
Happy to hear the worst fears weren’t realized at least and ditto to what Barbara Brady said.
Thanks Bill. Hoping you are have a much better week. Take care friend.
I had back surgery 3 years ago by a neuro surgeon because he told me all my pain in my back was from a disc touching my spinal cord and if i had the surgery i would be better. I had the surgery and my pain did not go away. I now have a huge scar from the surgery. I just found out last week all my problems the past 9 years are from having Lyme disease. This is all new to me.
It’s such a hard disease because it mimics so many other medical problems. I’m sorry you went through the surgery with no success. After measuring compression on my cord the surgeon was pretty sure mine was good for a long time and lyme was causing all the same symptoms.
I had surgery 8 yrs ago in my neck. Turns out it was an emergency because I had symptoms that lead to paralysis. My surgery went fine and no more pain numbness tingling etc. I have chronic Lyme disease. The dr.’s told me in the future I would have to have my lower back done. Turns out I also have Spinal Stenosis FROM LYME. I had the surgery done 11-3 2020. I had an incredible surgeon. I won’t lie, it was rough but now I’m in recovery which in my case will be long. I waited too long again. I had 3 collapsed discs. Now a PT comes to my house and one day that too will be over. If any of this sounds familiar get the surgery. You will end up paralyzed if you don’t. My Drs. and surgeon both believe it’s from lyme. I have no doubt. I’m telling you it won’t go away no matter how much exercise, what you eat , do yoga etc. It’s a progression. Good luck. I have many more issues from the horrific disease that I can’t fix. I’d sure like to fix my Narcelepsy…… Sheri Peters
Thank you for sharing. Sorry I’m late I just now saw this comment. Since Covid they’ve pit off a few surgeries I need. So I’m still waiting. They worry that my immunodeficiency I won’t make it through the surgery so I’m not sure what to do. I had the flu which might have been Covid 2 years ago and it took me 5 months to stop coughing and I broke ribs I coughed so hard.