My history - and where to go next?
 

Hi,

Many years ago, I got diagnosed with spinal stenosis, mainly at L4. The symptoms I had at that time was mostly that if I stood or walked for any period of time, both of my legs would start going numb and hurt, to the point that it was like I couldn't feel them anymore.

I eventually had a minimally-invasive laminectomy at L4, in 2010, and the results were tremendous. That whole leg numbness was immediately gone.

However, during recovery from that 1st back surgery, I noticed that I had numbness and tightness in both feet and ankles, and on the outside of both calves (I remember sitting during recovery and flexing my ankles and going "huh?", when I first noticed this).

I don't remember if it was also at that time, but currently, I also get intermittent "burning" sensation in the same areas (both feet/ankles/outside of calves).

This numbness/tightness and burning is worse on my right side than on the left side.

I had a 2nd spine surgery, earlier this year, by the same neurosurgeon, for a "re-exploration of L4". He said that he removed some small cysts and bone spurs, but didn't find anything else. I saw the same neurosurgeon after getting a new MRI, and he said that everything looked ok.

So, I subsequently saw a neurologist, who did a bunch of blood tests (lyme disease, lupus, vitamin B, D, etc.) and said they all were ok except some vitamin D deficiency, so I've been taking once a week 50K vitamin D capsules. He also did an EMG, and diagnosed "idiopathic" peripheral neuropathy.

I had asked him if he could tell if it might be being caused by something going on in my spine, but he said that he could only do the EMG from the knee down because it was too soon after my most recent back surgery. The reason that I asked this is that, to me, it feels like the numbness/tightness and burning get worse after I've sat for awhile.

Aside from this, I also got diagnosed with ostheoarthritis in my right hip (bone-on-bone), and so I just had a hip replacement done on my right hip (currently still recovering from that).

I recently ran across some info that indicated that this kind of burning might be caused by undiagnosed diabetes, so I just had a 2 hour oral glucose tolerance test done this week, and everything was ok (92@fasting, 91@2 hours).

As I mentioned above, I am still having this numbness/tightness and intermittent burning, and am not sure where to go next.

I understand "idiopathic", but I would really like to be able to find out if it's being cause by a back problem or not.

During the period that I was seeing the doctor that did my recent hip replacement, I also saw one of the doctors in that same practice that specialized in spine issues, and he looked at my post-spinal surgery MRIs and basically ridiculed "minimally-invasive surgery" and said that what he thought that I needed to do was a full laminectomy on both L4 and L5 and a fusion, so I'm stuck between 2 different opinions: the neurosurgeon who did my 2 surgeries says no back problems and the other orthopedic surgeon says I need full laminectomy to eliminate the neuropathy.

I'm kind of inclined to go to either the same neurologist that I've been seeing, or maybe another one, and try to get a new EMG or NCV. The question is, having had a hip replacement 2 months ago, if I did that, would they be able to answer the question of whether or not this numbness/tightness and burning is being caused by back problems?

Thanks, and apologies for the long post.

Jim

Welcome to NeuroTalk:

I am going to suggest you get your test results for B12 in numbers. "normal" is not normal today, because the lab ranges have not been updated to the new information about this vitamin.

Hence you may be really low and not know it.

The B12 thread:
http://neurotalk.psychcentral.com/thread85103.html
The 2003 link to American Association of Family Physicians has the guidelines for doctors now explained at a minimum of 400 US units.

All that surgical trauma of the spine certainly has a suspicious air as far as PN goes.

But also you know, drugs, and lifestyle also factor into PN quite a bit. So what drugs have you taken and are taking now?
Also vaccine history.

mrsD,

After the 1st spine surgery (2 years ago), I was given Hydrocodone and Lyrica during the recovery. I took the Lyrica for maybe 2-3 weeks, then stopped that, and only took the hydrocodone for awhile (maybe 1.5 months) after that. Again, that was 2 years ago, just after the 1st surgery.

More recently, after I saw the neurologist, he prescribed Horizant for the numbness/burning, which is a newer/branded version of neurotonin. I took that for over a month, but it didn't relieve the symptoms at all.

After that, I wasn't taking anything for a couple of months, until just before my recent hip replacement surgery. When I first got diagnosed with the hip problem, the doctor prescribed meloxicam, for the hip pain, which I took for about 3 weeks, and stopped that a week before the surgery (in early August).

After the hip replacement, I've been taking hydrocodone (7.5/325), mainly for pain, for about 8 weeks now. The most I've been taking that is 1x4times a day, but for the last 2 weeks, I've been trying to wean myself off of it, and am now down to taking 2 per day.

In the last 2 weeks, I've also been taking 2 benadryls at night, to help get some sleep (apparently, this is a common problem with hip replacement recoveries).

I'll try to get the B12 numbers from the neurologist's tests and post back.

I'm still interested in if getting another EMG might be able to pinpoint whether the leg/feet/ankle numbness/burning is from a spine problem or not? Also, since I'm now only about 2 months post the hip surgery, and now have a metal prosthetic, would that cause any problems with getting an EMG or nerve conduction test?

Thanks,
Jim

P.S. I forgot to mention, besides the hydrocodone and benadryl I'm currently taking, since after the hip surgery, I've been taking a number of different supplements (wife's idea :)).

I'll need to find out what exactly, but it's like glucosamine (e.g., move free from costco) and some other stuff.

Also forgot to mention that in the period before the hip surgery in August, I was having acupuncture, 2-3 times a week, for about 10 weeks, with no improvement re. the leg/feet/ankle numbness/burning. That Chinese doctor also had me taking some herbal medicine for inflammation (huo luo xiao lin dan/HLXL).

Jim

The drugs I am looking for are not related to this problem.

They are mostly statins for cholesterol and certain antibiotics.
These can damage nerves.

Here is post about drug damage.
http://neurotalk.psychcentral.com/thread122889.html

There have been posters here who report PN after joint replacements. It might be a trigger, from a reaction to the
metal used.
http://bonesmart.org/forum/threads/m...acement.13261/

Hi,

I haven't really taken any statins as far as I'm aware (haven't had problem with cholestorol). I've taken antibiotics occasionally, e.g., maybe for a flu, but haven't for a number of years, I think.

Re. your last paragraph, as I mentioned earlier, this numbness, etc. was noticed a couple of years ago, whereas my hip replacement was ~2 months ago.

Jim

Oh, and I forgot.... that D you are taking? Is it the RX one?

If so that is D2 and doesn't work. You'll need to be on D3 OTC at 1000IU for every 10 pts you need to raise. You will need to know your D test results also.

Hi,

Yes, the vitamin D was prescribed, 50000 units once per week. I still have to go find the neurologist's report to get that number.

Out of curiousity (and maybe you don't know the answer), why would the neurologist prescribe something that doesn't work?

Jim

They prescribe it because their therapeutic text books still say to use it, and are not updated. It is a sad fact, but along with the B12...doctors will test, and then either not apply the correct therapy or ignore the results. :rolleyes:

Here is the study that showed D2 is far less effective than the active D3.

The original D that was RX on the market (now generic) is over 40yrs old. Back then that is all there was. It was made by Lilly and called Deltalin, and was sold to another company who renamed it Drisdol.

This explains it in more detail.
http://articles.mercola.com/sites/ar...d-mistake.aspx

Doctors in general know little about nutrition, supplements, testing and one has to expect to do their own work in this area.
Integrative doctors, may be better, but they are new, and we don't see many posters going to them. In fact we only have one poster posting about that, currently. They are just beginning to show up in searches on the net.

Thanks for the explanation.

Getting back to my earlier question about the EMG or nerve conduction test and being able to identify the source (back problem or not) of the numbness, etc.

Can you, or anyone else here, comment on this?

Thanks,
Jim

Glenn is our test expert.... you'll have to wait a bit for him.
Weekends tend to be slow on this forum. He might look in early Monday morning.

You might in the meantime ask about your spinal issues on the spinal forum...

http://neurotalk.psychcentral.com/forum22.html

In general forums like this tend to have members who have "failed" surgeries... the successes don't post on boards, as they are on their merry way living well. The people in pain, are the ones who show up on the net as a rule, from what I have seen over the years.

Hi,

Ok, hopefully he'll see the thread. I posted here because, really, where I'm coming from is trying to address the neuropathy. But then, as I said, I'm getting mixed feedback from various doctors, the neurosurgeon who did my two surgeries vs. orthopedic doctor, etc.

And then, I was disappointed that when the neurologist that I saw did the EMG, he only did the test from the knee down. I really would have though that he would have told me beforehand that he couldn't do a complete EMG at the time, as I would have been fine waiting a few months. That was why I'm asking about now, with the hip replacement and having had that done 2 months ago, would it be better to wait 'x' months before trying to have another EMG done to try to identify whether or not there was back involvement in the leg/feet/ankle numbness?

In the past (before my 1st back surgery), I had an EMG, by a physiatrist, and he was able to identify that the original problem was from the L4 stenosis. Unfortunately he retired a couple of years ago, so I can't go back to him at this point, which is why I started seeing the neurologist earlier this year.

I agree with your last paragraph, BTW :)...

Jim

Naw, I'm here.
 

And having read the thread, I think the more likely problem is still somewhere in the spine. That's not to say that on can't be "co-morbid"--experiencing more than one problem at a time with similar symptoms (there are plenty of people who have both problems with peripheral nerve AND problems with the spinal cord or the nerve roots next to it, and because of the so-called "double crush phenomenon", may have symptoms that are more than the sum of these parts), but given your history, and the initial relief, I think the lower spine is the place to look first.

And yes, a good neurologist, or perhaps physiatrist (they often tend to be more integrative) , should do a complete NCV/EMG study of BOTH lower extremities, starting with the lower paraspinal muscles and doing the whole legs. The idea is to find out if there is a nerve signal abnormality and if so, where it originates from. This is likely to be a long, uncomfortable test, though, so be forewarned. Moreover, results often depend on the skill of the tester in placing electrodes, and on the temperature in the room (it's supposed to be cool in the room, as heat is the enemy of nerve conduction).

One thing I didn't see you mention--have they done a new MRI of your lower back and pelvic area? It's entirely possible that even if your L4 area is in good shape, there are problems at other levels that might contribute to these symptoms (the Spinal forum people here can certainly speak to this--surgery at one level often leads to additional loading at other levels, and often begets the need for more surgery). They should be looking at your hip and pelvic levels, too--compression at the hip and pelvis can also bring symptoms down the legs and even into the feet, depending which nerve pathways are involved--there is a lumbosacral plexus of nerves where a lot of these pathways merge, integrate, and then spread out again into the nerves of the leg and feet, and there can be compression there as well:

http://www.theodora.com/anatomy/the_...al_plexus.html

As you can see, it's often difficult to tease out problems of the spine from problems with the nerves a little farther, or a lot farther, along the pathways.

Quick question, Glenn. My last EMG/NCS at Hopkins involved 45 minutes with a heat lamp before they would proceed with the test. Why did thy do that if cold is more conducive to nerve conduction?

Everything I have read says that your body needs to be warm and not cold. When I had mine I believe I was plenty cool enough - perhaps too much.

Just a couple sites:

http://www.nlm.nih.gov/medlineplus/e...cle/003929.htm

http://www.spinemd.com/non-operative...-reston-va.php

Hi Glen,

The last MRI that I had was of the hip and pelvic area. This MRI was done after my last spine surgery, and before the recent hip replacement.

It was ordered by the neurosurgeon that did the 2 spine surgeries after an appointment I had with him where I told him that the numbness, etc. still existed even after the 2nd spine surgery (the "re-exploration"), and the order he wrote mentioned lumbosacral plexus. The reading from that MRI said, basically, "no problems", and the neurosurgeon said the same thing when he looked at the MRI himself.

I haven't had an MRI of my spine after the last spine surgery (which was in April of this year).

This is the quandary that I'm in:

- I know that I have the numbness/tightness/intermittent burning (at least from after the 1st spine surgery/laminectomy, possibly before that)

- Neurosurgeon that did the 2 spine surgeries says spine, etc. looks good

- Neurologist who did a "partial" EMG (after last spine surgery) says that I have idiopathic PN, but wasn't able to tell me if it was from spine or some other cause(s).

And that was why I'm trying to figure out what to do/where to go next...

Thanks,
Jim

I'm not sure--
 

--about why the heat lamp was used before the NCV/EMG, unless it was to warm muscles and make them more pliable for the EMG part of the test, but everything I've ever read about nerve conduction indicates that heat slows transmission. Maybe some neurologists like to see how one's nerves function under more aversive conditions-- a normal study under heat probably means there are no problems in the areas tested.

The MS people are really adamant about cooling helping to ease nerve transmission symptoms; in fact, cooling vests are prominently displayed and sold in most MS publications.

Ohaya, I think they'd still be interested to do an MRI post second surgery--something might have slipped or there might be compression in a new spot. Of course, it's possible the problems stem from farther down the nerve pathways than the spine, so it would be helpful to have the NCV/EMG reports, to see exactly where and what was tested (you should get and keep copies of all test results anyway).

glenntaj,

Sorry that I haven't posted back earlier. I've been debating whether to try a neurologist or a physiatrist, but I finally went ahead and got an appointment with a physical medicine and rehabilitation doctor next week, and will see what he says, and then go from there. This'll be my first time seeing this particular doctor.

The burning, etc. still remain about the same, but had a kind of bad bout of something similar to cramping on the side of my right calf last night. It was quite cramping, but more like the muscles around the outside of the calf, and the ankle got really tight, to the point that it hurt. This happened while I was lying down. I keep thinking that, because the burning/tightness seems to get worst when I sit and lie down, that this might be associated with my back, rather than something else. I guess that I'd really find out if that is or is not the case, so I can try to figure out what to do about it.

Will post back.

Jim

Hi,

Sorry that I haven't posted to this thread lately, but I found the neurologist's report (in prep for an appointment tomorrow with a physiatrist).

Vitamin D, 25-Hydroxy: 13.2 ng/mL

Vitamin B12: 549 pg/mL


Also, here're his findings from the EMG and NCV (done in May 2012):

Nerve Conduction Studies:

The right peroneal and tibial motor potentials reveal borderline low amplitude, with normal distal latency, and conduction velocity.

The left tibial motor potentials reveal normal distal latency, amplitude, and conduction velocity.

F-wave latencies are normal in the right peroneal and tibial nerves.

The right superficial peroneal sensory potentials are absent.

The right sural sensory potentials reveal normal onset latency, low amplitude, and normal conduction velocity.

The left sural sensory potentials reveal normal onset latency, amplitude, and conduction velocity.


Needle EMG:

Testing of selected muscles of the right leg with monopolar needle reveals no spontaneous activity such as positive sharp waves, fibrillation potentials,, or fasciculations in the tibialis anterior, gastrocnemius, vastus medialis, EHL, or FDL muscles.

The motor unit potentials reveal large, polyphasic configuration in the tibialis anterior and EHL muscles with reduced recruitment pattern.


Conclusions:

There is electrophysiological evidence of a sensorimotor peripheral neuropathy, with predominant axonal features, mainly affecting the sensory fibers and the right leg.

Needle EMG testing reveals no acute denervation, BUT there are chronic neurogenic changes in distal muscles, which correlates with axonal, length dependent involvement.

Reinnervation changes of the L5 myotome can also be associated with chronic L5 radiculopathy.


Can anyone interpret/comment on the above in English? I'm especially wondering about that last sentence ("Reinnervation..."), vis-a-vis I showed the above EMG/NCV info to my original neurosurgeon, and he said that there were no problems with my back/spine?

Thanks,
Jim

Well, your D is very very low. When it gets this low, you cannot absorb calcium well, and then the muscles get strange and you can have paresthesias. If this is not fixed your body will rob your bones and eventually you will get osteoporosis.

You should be on OTC D3 at 1000IU for every 10 pts you need to increase. For you to get to the new lowest "normal" of 50, you'd need 4,000IU daily. If you are heavy or large you may need a bit more. Do this for 3 months, and then get retested to see how your level has changed and how you feel.

The B12 is just above the lowest normal...for people with neuro symptoms, it is suggested to take B12 anyway (Dr. Snow suggests this in his medical paper), since it is non-toxic. We here like to keep our B12 at 1000 or more for best results.

Axons are the long parts of nerves that travel distances to the spine. They enervate muscles mostly but some pain signals also. When damaged by inflammation or autoimmune attack, or toxins, they may repair if B12, folate, B6 and Omega-3s are present to rebuild the myelin. Some drugs block remyelination, like statins for cholesterol. So it might be that reinervation is similar. Length dependent PN is a damage to the axons.

Let's see what Glenn thinks.
Since you are showing axonal damage, you might consider Acetyl Carnitine, as a supplement. Start at 500mg a day (divide doses 250mg twice a day) and work up by 500mg a week to 2 grams. Do this for a month or two and see if there is any improvement.

Methylcobalamin B12 1000mcg or 5000mcg a day on an empty stomach, to bring you up a little. 5000 would be faster, and can be lowered to 1000 later if you choose.

Fish oil 3 a day with food. Or 2 reg. Krill oil a day with food.
Multivitamin for the rest (without iron if you are male or postmenopausal female).

Vit D3 4,000 IU daily.

See what happens or changes.

Hi,

I just got back from my appointment with the new physiatrist. Surprising, he spent quite a lot of time with me, going through all of the information, including my past MRIs, two EMGs that I had done, etc. He said the latest EMG, where the neurologist had diagnosed idiopathic peripheral neuropathy was suspect.

He offered that he could do another EMG, which I might go ahead with, but he said that with all the info he'd seen, he felt that the numbness, etc. was probably due to spinal problems that didn't get taken care of by the minimally invasive laminectomy that I had undergone in 2010.

He also said that we could try an epidural, but with a different practitioner, but I'm not sure if I'm going to go forward with that.

Jim

Hi Jim
 

Glad you found a physiatrist. I go to one too and have had good results. She never presses me to do anything I don't really want to do. More and more people are discovering this kind of physician. I wish you all the best. ginnie