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  • Rant - Heard from neurologist

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    Old 07-27-2015, 07:17 AM   #1
    inspirations7
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    Rant - Heard from neurologist

    On the Patient Portal, I heard from my neurologist. He talked to the neurosurgeon who addressed my legs giving out. That was one of my concerns, but the neuro told my neurologist that we should try PT for my back and knees first. What? The concern the neurosurgeon had was with my off-balance; he never addressed my legs giving out to me. He said that he and my neurologist needed to discern why I was so off-balance, whether it was from the polyneuropathy or from my back. And I've had PT many times before, and the last time, it went badly. I ended up going to a chiro for relief.
    I can't believe this. I wrote my neurologist to ask if all these ongoing things--stenosis, flattening of the cord, etc--would be safe to take PT. I'm at a loss.
    Any thoughts? Maybe they're thinking this way because of my age and the fact I have little to no pain??? Or because I'm on Medicare? I'm 71, but fairly active, carefully active, and I work from home still.

    Last edited by inspirations7; 07-27-2015 at 09:43 AM. Reason: Additional info: Doc said surgery was too risky, so wants PT.

     
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    Old 07-27-2015, 01:18 PM   #2
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    Re: Rant - Heard from neurologist

    Well, with the retrolisthesis and multiple levels of stenosis you're looking at a 3 level surgery most likely if you go that way. That's a pretty big deal especially for someone who is 71. Add in the no pain and you'll have a lot of surgeons questioning the surgery I would imagine.

    The wildcard is the severity of the spinal compression especially at C5-C6. Any time you have cord compression it can cause symptoms at spinal levels at or below the compression. A common symptom, for instance, is loss of proprioception in the legs which means you lose track of where they are in space which can cause balance issues and the like. In your case, it's hard to say if that's what's happening or not. One other thing with cord compression is some kinds of conservative treatments such as traction may be undesirable. If the compression is bad enough or is causing symptoms of myelopathy, then I would think many surgeons would want to get that surgically decompressed.

    All of this does dovetail into insurance as well. Most insurances require a course of PT and/or other conservative treatments such as steroid injections before they will approve surgery without documented evidence of issues requiring more emergent surgery.

    Given what your surgeon said, it sounds like they are thinking surgery might be warranted but presents too much risk presumably because of your age and the number of damaged levels. That is certainly a judgement call and I would get at least one more opinion on the situation if I were you. Also, if you haven't, I would discuss the failure of previous PT attempts with the surgeon.

     
    Old 07-27-2015, 01:35 PM   #3
    inspirations7
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    Re: Rant - Heard from neurologist

    I am really, really confused. The surgeon's nurse, I guess that's who she was, said that I don't have any compression on either of the MRIs. The way it reads, it looks like it, even to a very common layman like me. The neurologist did write and say that PT was not as risky as surgery, so that's why they want to go this route.

    The lady told me I was scheduled for pain injection, and I said, "Why? I don't have any pain, and have had very little the past ten or twelve years." So, she said they'd delete that pain injection, but go ahead with the PT. I then asked what if it is worse and creates pain, and she said, then we'll go ahead with the pain injection. They want to do some gait training and something else (I forgot), plus strengthening legs and core. Well, that's what caused my back to go out completely, with me walking at an angle, years ago. I finally went to a chiro, who fixed it with one of those small devices for the atlas.

    When you get a second opinion, don't you go through the same doctor who initially sent you to the first doc? If so, my neurologist said he didn't think a second opinion was warranted since, without pain, they would probably ask for the same thing.

    I guess I'm a little frustrated. The neurologist said they did a thorough workup on me to try and pinpoint why my leg(s) were giving with me, and why I was so off-balance. Both docs are on the same page now. I'm not quite comfortable though.

    Any other thoughts?

     
    Old 07-27-2015, 02:37 PM   #4
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    Re: Rant - Heard from neurologist

    Well....unless the neurosurgeon's nurse or whatever she is, was looking at the films and they are totally different from the radiology report, she doesn't know what she is talking about.

    I don't know how you could have severe stenosis at several levels, in both the cervical and lumbar spine and NOT have nerve compression.

    Maybe there is some reason that they don't want to have to consider surgery, as you suggested (age, Medicare, etc.), but anything else, they are not leveling with you.

    I would never rely on the neurologist managing my case or making the spine surgeon the consulting physician. Further, I would make an appointment with a fellowship- trained orthopedic SPINE surgeon. For whatever reason, this neurosurgeon does not want to treat you.

    And, by the way, many seniors a lot older than you have spine surgery and do well. I do agree that if you are not in pain, and the spinal cord compression is not dangerous, there is no reason to risk surgery.

    Why did you go to the doctor in the first place, or have the MRIs?

     
    Old 07-27-2015, 02:41 PM   #5
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    Re: Rant - Heard from neurologist

    I am ranting, too! What is the cause of your poly neuropathy? It could be caused by your spinal issues and the severe stenosis.

     
    Old 07-28-2015, 05:42 AM   #6
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    Re: Rant - Heard from neurologist

    I've been seeing my neurologist for the polyneuropathy (at first, peripheral neuropathy) of unknown origin. But when my off-balance issues got a little worse (not daily), but weekly, for sure, several times, and my left leg collapsed with me to the floor, and no sensation for a couple of minutes, I became alarmed. That happened in March. It starts with a short twinge of pain in my left (or right), predominately left, ankle. And usually my leg gives way halfway to the floor, but in March, it went all the way to the floor. He, the neurologist, wanted me to go for pain shots (I have no pain), PT, and I told the neurologist about my bad PT experience, so he set me up with the neurosurgeon for consultation. I found out this week they finally got around to discussing my case and decided it was less risky to have PT than to go with surgery. I don't want surgery; I really don't. I only want to know what's going on with my back, and how I can prevent any issues from this time forth. I want the truth.

    I've made an appointment for a consultation with my trusted chiropractor who, I feel, will tell me the truth. I'll see him today at 2:30.

     
    Old 07-28-2015, 04:36 PM   #7
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    Re: Rant - Heard from neurologist

    What did the chiro have to say?

     
    Old 07-28-2015, 05:08 PM   #8
    inspirations7
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    Re: Rant - Heard from neurologist

    He read the report and agreed with you all. He said I have cord compression, which is what he, personally, would be concerned about. The foraminal stenosis, he said, would affect my arms. (I have had what I call "wrist drop" in both wrists.) But it's not too serious at all. He can't understand why they would want me to do PT when there appears to be a neurological issue that wouldn't be addressed by doing PT. He asked if I had EMG and nerve conduction for the cervical area, and I hadn't; only had the legs done. I had cervical EMG and nerve conduction done about 20 years ago though. He thinks I should talk to my neurologist about considering doing those tests to see if that answers the questions about my off-balance and leg(s) giving way. He also thought that the docs may be in a quandary deciding what to do since I have no pain, while my cervical MRI is such a mess. He said, by the looks of the MRI, I should be in a whole lot of pain.

    So, I am thinking of canceling the PT, and rescheduling with the neurologist. I'm going to say that I have lost all trust with the neurosurgeon and would like another recommendation. If that doesn't happen, my chiro will talk to people he knows to see if he can find someone.

    The other thing that made me so unhappy was the fact that NO ONE explained what was going on with me or my MRIs. I think my neurologist figured the neurosurgeon would do that. But he didn't.

    I am so glad you all saw what I thought I saw ( I really didn't know any better). But you all have been immense help. Thank you so much.

     
    Old 07-28-2015, 07:26 PM   #9
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    Re: Rant - Heard from neurologist

    I think it is probably wise to skip PT until you have a better understanding of the cervical issues. Unless the PT is very experienced with orthopedic cases, he/she could do more harm than good. Again, I really suggest you look for an orthopedic spine surgeon.

     
    Old 07-29-2015, 07:27 AM   #10
    inspirations7
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    Re: Rant - Heard from neurologist

    Done!

    I work from home and am on deadlines. I have to work, even at 71, since my husband was laid off from three successive jobs ten years ago. He has a job now, but it doesn't pay enough to make ends even barely meet. So, I explained this to the person from PT, and we cancelled. It's true. If I don't work, I can't even pay my supplemental insurance and everything else is moot. I still plan to talk to my neurologist on Aug. 14, and see what he has to say. I was to the point of being terrified of doing PT, anyway.

    I need to know what to do for preventive care for my cervical and lumbar. I know some things that were taught about twenty or twenty-five years ago, but I can't recall a lot of things. I still roll over to get out of bed. I was taught to do that years ago. I can't really bend at the knee to do things, as my knees have lost half the cartilage, and I can't get back up. Enough talk!

    Have a wonderful day, Teteri and ChuckSTR.

     
    Old 07-29-2015, 08:32 AM   #11
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    Re: Rant - Heard from neurologist

    You want to avoid bending and twisting as much as possible. Buy a "grabber" if you do not already have one. You can use it for most things that would require bending.

    Sitting puts over 30% more stress on the discs than any other position. Every 30 minutes try to stand up and move around a little...walking back and forth. Have them pack groceries "light" so no one bag is too heavy. I don't buy things in the jumbo size any longer, or if I do, I have my husband carry it into the house and transfer it to a small, lighter, bottle. When someone wants to carry something to your car, let them. This is a hard one for me. But I have a permanent lifting weight of 30 pounds, so things like dog food, potting soil, etc. must be carried out and put in the car!

    Basically you want to save yourself as much wear and tear as possible!

    Last edited by teteri66; 07-29-2015 at 08:33 AM.

     
    Old 07-29-2015, 08:43 AM   #12
    inspirations7
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    Re: Rant - Heard from neurologist

    Thanks! I just copied and pasted that, so I'll remember what you've said.
    No, I don't have a "grabber," but have seen them in the past. Any recommendations where to get one? I am very cognizant of bending forward, but I have to in daily chores (which are fairly light). My husband does the heavier things for me. I know at one time, many years ago, my doctor told me not to lift anything more than 5 pounds. I do now, but I try to be careful.
    If I drink enough coffee, I don't have to worry about jumping up every 30 minutes ... LOL.

     
    Old 07-29-2015, 12:07 PM   #13
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    Re: Rant - Heard from neurologist

    I have seen them at one of the big box stores and some drug stores. Also you can find them online.

    I can give you another tip that is the most valuable thing I have to offer. You may have seen it in other threads, as I mention it fairly often. It seems so simple but it is one of the most rejuvenating things one can do for the spine. I think most people try it a couple times and then never do it again. It needs to be done every day and results are not noticeable right away. It is very good for people with healthy backs too!

    Lie on the floor or a firm surface, on your back with knees bent. Place arms close to the sides with palms facing up. Be sure pelvis is in neutral position. Now relax and breathe deeply from the belly ...deep enough that you can see your belly rising and falling. Continue breathing deeply and slowly in this position for about 2 to 5 minutes. That's it!

    I do this morning and night. I also do it whenever I know I have done too much and my spine is about to react badly! I have been known to find a quiet corner of an airport and stretch out on the floor to do this.

    This is a natural form of traction. It allows the discs to unload, allows any muscles that may be guarding an injured area to relax, helps to naturally realign everything, and it also affects the parasympathetic nervous system...which can provide some break in the pain chain.

     
    Old 08-07-2015, 08:19 AM   #14
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    Re: Rant - Heard from neurologist

    How are you doing?

     
    Old 08-07-2015, 09:01 AM   #15
    inspirations7
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    Re: Rant - Heard from neurologist

    Hello, Teteri.

    I hope all is well with you and yours.

    I went to my neurologist yesterday and told him I was dissatisfied with the neurosurgeon. When he mentioned the physical therapy, I told him of my concerns, having had that bad experience with them a number of years ago. When I said that I walked out of PT, walking at an angle and the only one to fix me was my chiro, he said, "OK, let's do this." Go to your chiro once a week for two months, and then we'll reassess to see if you have more leg give way problems and need to see a neurosurgeon. He's not sure where the off-balance is coming from--the polyneuropathy or cervical or even lumbar.

    He showed me my DVD (I have copies too), and said that my cord wasn't compressed, but was abutted by ... can't recall what. He did say the cord wasn't flattened, but the report said so, and the head of his small practice was the person who did the report. He did say to NEVER fall asleep in a car, airplane, or my recliner because of my neck issues. Like you said, he said not to twist or bend or reach above my head either.

    Along those same lines, I wonder if I could 1) safely go to a dentist; 2) get my hair washed/colored using one of those basins; 3) have my cataracts done, etc.

    I have a very conservative chiro, so I feel all right with him, but just wonder how bad my neck/back is. To me, I don't feel it is that serious after talking to the neurologist, but my chiro (looking at the report) came away with it is. He, the chiro, a week ago offered to refer me to another neurosurgeon, but he doesn't really know any in the area right now.

    Wow! Does anyone else have this kind of issue? After looking at the report, it seems serious, but after talking to neurologist, and his looking at the DVD, it doesn't seem quite as much. I'm not sure where I stand with all of this. I'm trying to decide how much I can safely do. Any thoughts?

     
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