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View Full Version : Rant - Heard from neurologist


inspirations7
07-27-2015, 07:17 AM
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.

ChuckStr
07-27-2015, 01:18 PM
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.

inspirations7
07-27-2015, 01:35 PM
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?

teteri66
07-27-2015, 02:37 PM
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?

teteri66
07-27-2015, 02:41 PM
I am ranting, too! What is the cause of your poly neuropathy? It could be caused by your spinal issues and the severe stenosis.

inspirations7
07-28-2015, 05:42 AM
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.

teteri66
07-28-2015, 04:36 PM
What did the chiro have to say?

inspirations7
07-28-2015, 05:08 PM
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.

teteri66
07-28-2015, 07:26 PM
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.

inspirations7
07-29-2015, 07:27 AM
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.

teteri66
07-29-2015, 08:32 AM
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!

inspirations7
07-29-2015, 08:43 AM
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.

teteri66
07-29-2015, 12:07 PM
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.

teteri66
08-07-2015, 08:19 AM
How are you doing?

inspirations7
08-07-2015, 09:01 AM
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?

ChuckStr
08-07-2015, 03:09 PM
There can be variation in reading MRIs. It is fairly common to have someone grade stenosis as severe and another person grade it as moderate for instance. Also, when talking about spinal cord compression (or nerve root compression for that matter), you have to look at all the images in both the sagittal and axial planes. As an example if you look at the T2 sagittal images of my neck, at C5/C6 the canal is narrowed to about .9cm. That is definitely stentotic, but it appears as if there is still spinal fluid around the cord, and theoretically since the cord is only about .8cm at that point, there shouldn't be any compression. However, if you look at the axial plane, when you get to C5/C6 a couple of the images clearly show a dearth of surrounding spinal fluid and a slightly squashed, football shaped cord. I had neurologists tell me that my spine was ok, but the spine specialists all knew that I had some cord compression. They differed in opinion as to the significance related to the necessity for surgery, but they all agreed there was some compression.

All of that said, it's weird that the radiologist would say there is compression and splaying, which to me would indicate a pretty recognizable thing, and the neurologist say there isn't either of those. If there is compression and even more so if there is splaying you need to get to someone who will do something about that. If the compression is mechanical, PT, chiro all of that is unlikely to do much good and the condition could progress. I believe you were getting feedback from the neurosurgeon that surgery was called for but "too risky" correct? Did they look at the MRI images or just read the report? All of the spine specialists I went to pretty much ignored the radiologist report and read the MRI themselves. That's why I would recommend going to the best spine specialist you can find to get everything evaluated properly. These guys really are the experts. Neuros and even neuro surgeons who don't see this stuff all the time are just not as good. If you have a teaching hospital near you that has a spine department that might be a good place to start. You can also look for the "best spine surgeons in the USA" there is an "ASC review" that has a good list if there is someone relatively close to you. Two of the folks I saw are in the ASC top 100, the other 3 were in a local "best doctor" list which can be useful too.

It sounds like your chiro is one of the good ones, but in general I would not recommend chiropractic to anyone with cervical spine issues, especially with cord compression. The kinds of manipulations they do can cause serious permanent damage. My sister had partial paralysis in her arm from chiropractic with cervical spine issues. Luckily that was only temporary, but pretty scary.

The thing about all the activities you mention is that they are likely to put your neck into extension (head back). This can shrink the spinal canal by up to 30% so can lead to more compression then with your spine in alignment (as you'd see in a cervical MRI). If you are careful with that I doubt any of the things you mention would cause problems but you should be aware. Twisting or sudden movement in that position could be detrimental so you'd want to avoid that as you would twisting, jerking, heavy lifting etc., in any case.

Obviously we are not Drs but I and others have seen MRIs. If you post your pictures somewhere I'd be willing to take a look and see what I see if you like.

inspirations7
08-07-2015, 03:54 PM
Oh, yes, I'd like to post the MRIs. I have no clue how to do it though. If you could tell me how and where, my husband will try to figure it out.

The neurosurgeon said that "PT is less risky than surgery."

Also, I haven't even mentioned my lumbar, but the Impression on it is:

Severe left neural foraminal stenosis at L4-L5 secondary to herniated disc along with degenerative and hypertrophic changes of the facet joint.
Right paraccentral herniated disc with compression of the S1 nerve root at L5-S1.
Severe degenerative disc disease at L4-5 and at L5-S1.
Mild bulges on sagittal images at L1-, L2-3, and L3-4.

If you could let me know how to post those, I'll figure out a way to do it. Also, the person who read my MRIs was the head doc at the neurologist's office. There are only two of them.

Thank you so much for "hearing" me. Sometimes, I don't feel as if anyone is listening besides you all.

istitch4ever
08-08-2015, 12:16 PM
How about checking those crystals in your inner ear with a super guru balance doc?

inspirations7
08-08-2015, 12:21 PM
No, I haven't been referred to a balance doc, but that isn't the only issue. The balance issue could also be from my polyneuropathy. The leg giving away, to the floor (once) with no feeling at all for several minutes and unable to walk back in March, and several times since then, halfway to the floor is the other issue.

teteri66
08-08-2015, 01:52 PM
Sometimes people think a neurologist is the place to begin when confronted with an issue of the spine, but you have to keep in mind that the neurology specialty concentrates on diseases of the nervous system. They are often specialists in stroke, and diseases that affect the nerves like Parkinson's, ALS, Alzheimer's, etc.

As a specialty, they do not have addition specialized training in the structural alignment, mechanics and disease of the spine. As a profession, they can be useful as a secondary consultant to a spine specialist but are not an adequate substitute if one has any complex spinal problems.

You have sufficient stenosis in both lumbar and cervical spine that I would think you would want a spine specialist in charge of your case.

A radiologist may only comment in the written report on issues that are relevant to what the original doctor specified on the order for the MRI. That's why the spine surgeon will look at the images and pay no attention to the report.

inspirations7
08-08-2015, 02:04 PM
Good afternoon, Teteri.

I was seeing the neurologist for my polyneuropathy when I had balance issues and my leg(s) giving away at times. He was the one who sent me for the MRIs of my cervical and lumbar. If he hadn't done that, I wouldn't know anything was going on. So, I'm grateful for that. He was the one who sent me to the neurosurgeon as well.

If Chuck is able to take a look at my MRIs, I would know more about what to do. Hopefully, he can. I"m in a catch-22. If I take off a lot of time to see doctors, then I'll lose my at-home job which pays for my supplemental insurance. I have to have the job to pay for the insurance in order to see the doctors, but I can't take off too much time or I'll lose my job--catch-22.

I truly appreciate everyone's help.

istitch4ever
08-09-2015, 07:43 AM
So totally understand you may have multiple things going on here, but balance issues CAN be vertigo related... and a quick look into your ear by a ear guru can tell whether that 'checkmark' can be eliminated. Not one 'fix' will be the cause of your issues.
Otolaryngology is the oldest medical specialty in the United States. Otolaryngologists are physicians trained in the medical and surgical management of BALANCE; also called ENT docs. No doubt your other problems are due to your spine compression -- but if your imbalance isn't ? well? then other factors might be at play here?

inspirations7
08-10-2015, 05:50 AM
Good point, istitch4ever. It would be worth a look, but right now, I'm in the middle of deadline work this week. I'll look into it after I get this out of the way in a week or so. Thanks for pointing this out.

fatjuicymouse
11-11-2015, 10:17 AM
I have BPPV (benign positional paroxysmal vertigo) and it predates by nearly a decade the sudden and unpredictable weakness in my legs due to stenosis. I had my husband help me through the Epley maneuver at home and it made it so the "bad" ear is much better but the "good" ear now gives me slight spins when I turn my head. A tradeoff I am quite willing to accept.
Anyway, for me, the weakness in my legs has nothing to do with the crystals in my ear - the sensations are totally different and so are the triggers. I know what causes the dizziness in my head but no clue as to when my legs will try to give out. I have to use a four point cane or a walker every time I go outside of my house. My rollator has a seat on it so i can spin around and try to sit if my legs act up. (I am so glad I bought this for my mom when I was her caretaker)
Just my two cents...