Would Like Some Advice Dealing w/my PN
 

Hello,

In 2003 I had corrective surgery for scheuermann's kyphosis. My entire thoracic spine was fused.

About the beginning of this year I started experiencing loss of motor control in my right hand, along with tingling. I had an MRI of my cervical spine and it showed stenosis. In January of this year I decided to get a laminoplasty of my cervical spine.

The surgery resolved the issues in my right arm. I started to experience paresthesia in my abdomen, the sides of my groin, thighs, and tops of my feet. On my followup with my surgeon he told me my PN could not be a result of my laminoplasty.

I got an appointment with a neuro who prescribed me 50mg/3x a day and an MRI of my lumbar to see if that was causing my PN. Unfortunately all the metal from my kyphosis surgery obscured the results but I can post what they found below:

MRI SPINE LUMBAR WITHOUT CONTRAST: 9/4/2015 5:00 PM
HISTORY: PARESTHESIA, history of Scheuermann's kyphosis and corrective surgery at age 18 affecting his thoracic spine, paresthesias down his legs
COMPARISON: Lumbar spine MRI 01/11/2012
TECHNIQUE: Appropriate pulse sequences were employed in multiple planes.
FINDINGS:
This study assumes five lumbar type vertebra.
Alignment: Alignment is within normal limits.
Marrow: Significant susceptibility artifact emanates from spinal fusion hardware in the visualized thoracic spine extending to L2. Evaluation of these levels is essentially nondiagnostic.
Conus: Obscured by susceptibility artifact.
T12-L1 and L1-L2: These levels are obscured by susceptibility artifact and evaluation is nondiagnostic.
L2-L3: Partially obscured by susceptibility artifact. Sagittal images demonstrate no evidence of spinal canal or neural foraminal stenosis.
L3-L4: Trace disc bulge without spinal canal or neural foraminal stenosis. Mild bilateral facet degeneration.
L4-L5: Disc degeneration with mild loss of disc height. An annular disc bulge has a superimposed right paracentral protrusion/fissure. The disc material indents the ventral thecal sac without causing significant spinal canal stenosis. Mild bilateral foraminal encroachment is stable. Minimal facet degeneration.
L5-S1: Disc degeneration with mild loss of disc height. The previously seen left paracentral disc protrusion has resolved. A small annular disc bulge flattens the ventral thecal sac without causing spinal canal stenosis. Mild bilateral facet hypertrophy with slight right neural foraminal encroachment.
Sacrum: Normal appearance of the visualized portions of the sacrum, without evidence of acute fracture or suspicious lesion.
Soft tissues: The paraspinous soft tissues and visualized portions of the retroperitoneum are unremarkable.
IMPRESSION:
1. Interval resolution of the previously seen L5-S1 disc protrusion.
2. Mild degenerative disc disease L4-L5 and L5-S1 without spinal canal stenosis or nerve root impingement, otherwise unchanged.

The neuro told me there was no impingement and I assume the cause of my PN is unknown. I think something happened during my last surgery.

I'm wondering if now I have to deal with PN for the rest of my life and if it will only get worse.. I've been suffering from depression this whole year and was hospitalized for suicidal behavior. I'm currently getting Electro Shock Therapy and wondering if that affects my PN.

I have a followup with my neuro next week, as well as my surgeon. Is there anything I should be asking them?

Should I be taking supplements? Avoiding things like alcohol? Any advice you think would be helpful I would be happy to hear. Sorry this was so long.

Hello itburns,

Sorry you find yourself here, but welcome.

Like a lot of us, you appear to falling into the idiopathic PN black hole. There is a cause, of course, but it's escaping current medical diagnostic capabilities...or the right tests just haven't been ordered.

I have a lot of spinal issues as well, but nothing that explains the neuropathy. Still, could something be going on that they just don't understand yet? I certainly think so. Or it also could be something completely unrelated that is also escaping detection by all the tests I've had done.

I guess the only input I have is to not let your spinal issues obscure the possibility that your PN is being caused by something else. Here's a list from Mayo:

http://www.mayoclinic.org/diseases-c...s/con-20019948

Blood sugar issues and B12 are biggies. If you have unknown problem with the former, dietary changes could help. And yes, reduction of alcohol consumption could help as well.

Supplements could possibly bring you some relief, but it's a bit like throwing darts. MrsD has a nice thread discussing various ones you can try.

http://neurotalk.psychcentral.com/thread121683.html

I wouldn't expect a neuro to be terribly encouraging of taking supplements. At least that was my experience. My integrative medicine doc encouraged lipoic acid, though. All the others ones I'm taking I learned about on my own, and many from this forum.

If it offers encouragement, my idiopathic small fiber neuropathy has not worsened in two years. My symptoms seem to morph and change on a whim, but I don't think they're worse.

As far as your appointment goes, make sure your neuro has ruled out all the other possible causes. And don't let him gloss over the blood sugar ones. It seems doctors aren't raising red flags when some people are pre-diabetic. You don't have to be a diagnosed diabetic to have neuropathy caused by blood sugar.

So you do have metallic hardware in your spine?

There are some people who are intolerant of devices and metals
in various replacements for joints and fusions.

If this is the case for you, there is not much you can do about it
I am afraid.

Do examine your lifestyle for toxins, heavy metals, glucose metabolism, various drugs, and vaccines. Some food intolerances can cause burning. The Nightshade veggies are one group of foods that can cause burning. MSG in processed and restaurant foods is another.

@janieg Thanks for the welcome. Yes, I do feel I'm never going to get answers and if I do know the cause... If the nerves have been damaged I do not know if they can be healed. I feel like I've lost my way of life at 30 years old. I think my PN is caused by my last surgery because coincidentally it showed up after my laminoplasty.

I will get my blood tested. See if I have below 400 b12. I will look into mrsD's recommendations for supplements. My last neuro told me to stop taking a multivitamin because I had high levels of b6.

@mrsD Yes I've had metal in my spine since 2003. I am confused though as I didn't start to develop PN until the beginning of this year. The drugs I am taking are effexor 300mg, lyrica 50mg/3xday, and trazadone 50mg for sleep.

The amount of B6 in a multivitamin is not very large.

But if you did not stop all vitamins several days before the test, it will show false elevations. The ranges were made with volunteers who were not taking any vitamins at all.

What was your B12 result?

@mrsD I unfortunately don't have access to my last lab results, but I'm getting more blood work done in the coming weeks. I can report back then.

Hello itburns, welcome to the forum.

It seems like you've had quite a few MRI's, but were any of them done "with contrast"? I've read several horror stories about neuropathy type issues occurring after MRI's using gadolinium contrast fluid.

My own PN symptoms changed and became more severe after getting an MRI with gadolinium contrast. I don't think it "caused" my PM, but it certainly didn't help, and I think there's a good chance it made things worse.

One thing they didn't tell me when I had the MRI was that you should drink a lot of fluids afterward, in order to flush the gadolinium out of your system as soon as possible. Gadolinium is very toxic, but it is bound to a cheleating agent that keeps it from depositing in your body and allows it to be flushed out through your kidneys. But, if it stays in your body too long, more will escape from the cheleating agent and stay in your body, where it then becomes very difficult to get rid of.

The metal medical devices, are changed over time. So the earlier surgery could have used a different alloy.

What we see here from others who have had procedures done, MRIs can be problematic with that contrast medium ragtop mentions, and endoscopes are alarmingly increasingly becoming contaminated and not adequately sterilized so patients may be
infected with "who knows what" .

I had a new crown made for a molar last Jan. The temp my dentist put on was made of steel/nickel. One night some salt or something reacted to it, and the gold crowns above, and one mercury silver... and I had a two beat throb...in that tooth, followed by what I can only describe as an electrical jolt that went to my neck and down into my chest affecting my heart beat. I almost lost consciousness, and it took about 5 minutes for my heart to stop racing. It was an awful experience, so I looked it up...

http://toothbody.com/is-there-a-battery-in-your-mouth/

I was using a salt substitute (Morton), which has fumaric acid in it (why, I had no idea)...I can't use salt, so at dinner I use a small amount of this product. My dentist has never had anyone report something like this either. But it happened to me.

Weird things happen when metal gets into the body. I switched to NOW brand salt substitute...it does not have acids in it. But it was a painful frightening lesson to learn for me!

Try a search on Google... I found this one by doing
metal implant reactions:
http://www.arthritis.org/living-with...-allergies.php

I saw many other sites with discussions.

Some people will react to foreign bodies in their bodies, more so than others. Everyone is different.

Do see that your B12 is above 400pg/ml, and your Vit D at least at 50, and that you use some form of magnesium supplement, either the new lotion, or a good oral form (not oxide type), and see if you feel any difference.

@Ragtop262 My last MRI was without dye. I did have a CT Myelogram before my stenosis surgery. They injected the dye into my lumbar. Now that I think about it, I did feel tingling in close to my groin during the procedure. I've read stories about myelograms causing arachnoiditis. I will add that to my list of questions causing my PN to my surgeon and neuro.

@mrsD thanks for the info. I will definitely get those levels checked and those supplies. :)

itburns, yes it did burn and tingle for me for about 5 yrs after hip replacement MESS. I ended up with Femoral Nerve Damage and just lived with the burn/tingle until a naturopath gave me 4 suggestions on what I could try to eliminate the burn. I chose Inosine and Sphingolin and these have pretty much given me a burn free thigh...still very numb as I guess the nerves are so damaged and if they ever come back, who knows. I am much older than you but have a pretty old back with a lot of degeneration, but I just deal with it and choose to do no back surgeries. I've heard enough stories on those.

I ended up with spinal stenosis from surgery and did a lot of specific PT and learned specific stretches for that area. I'm pretty good there considering where I was. Rheumy did acupuncture on that area for a year or so and then I did some more at a clinic.

I don't know how old you are but I'm 77 and have had back, mostly lower, for about 60 yrs. But somehow I got thru it all. Was very active for most of my life and it started to catch up with me in my 60's and then bam with the hip replacement. So we all have our stories and how we have managed it all and yes we're all different. I take quite a few supplements for EVERYTHING which includes joints. C