Tuesday, July 5, 2011

Finally....Some Answers

In 2006 I was diagnosed with acute degenerative peripheral neuropathy. The collective response muttered under most peoples breath is; What the hell is acute degenerative peripheral neuropathy? Good question.

Neuropathy is a condition that affects over 20 million Americans and is typically associated with diabetes. It is nerve damage. Basically the nerve endings die due to lack of circulation. It primarily affects the feet and legs and causes numbness and severe pain in the affected area. And it really goes beyond that. The numbness and pain are hard to describe. One of the comparisons that I often use is the that it's almost like the pain and burning sensation that you get when you put your frozen feet in hot water after playing out in the snow. Except it's a constant pain. I can step on glass or a sticker and not feel a thing. But if I step on a rock it feels like someone is sticking a knife through my foot. I can't feel someone touching my feet but rubbing my feet is extremely painful. What really sucks? I can feel the itch but I can't feel the scratch to get rid of it.

The biggest danger that people with neuropathy face is sores. Since there is little or no feeling in the affected area, it is easy for a minor sore to turn into a serious issue. A shoe doesn't fit right and it rubs a sore on the foot; you step on something and don't realize that it cut your foot, etc. Poor circulation to the area doesn't allow it to heal as quickly as it normally would. If the sore isn't noticed it can get infected easily and left too long it can eventually lead to amputation.

Neuropathy is very debilitating and often leads to permanent disability. I my case, I am unable to stand for very long and I have difficulty walking for any distance. My posture is reminiscent of a swan in heat. My arms stick out a little and the pain in my feet tends to make me bend forward a little. My balance is affected and my bad knees don't add into the mix well.

My neuropothy has puzzled my doctors since day one. I am not diabetic and I haven't had other issues that typically cause neuropathy. They have even told me that they think my height may be the cause. I have had several nerve conductivity tests performed on me, part of which includes a needle test. Basically they take a needle and start poking you in several different spots to see if you can feel it. The Dr. asked me to close my eyes and before I knew it she was done. I didn't even realize that she had done the test. I felt about 3 pokes out of about 50-60. My legs were covered with little red blood spots from all of the sticks. 

In February I had a CT Mylogram done. That's where they inject dye and then take a series of x-rays. They did this to see whether there was an issue with a pinched nerve in my back. Then in May I had a nerve block (epidural) done in my back to block the nerve to my right leg. It worked almost immediately. It didn't help with the numbness but the pain was almost completely gone. I felt fantastic...For about 3 weeks. Not near long enough. After the shot wore off I went back to my "swan in heat" posture.

Today I had an appointment with a neurologist to see if they could shed some light on my problem. I found out a couple of interesting tidbits.

The neurologist informed me that the CT Mylogram wasn't done correctly. They didn't inject the dye into the the correct area and because of that they didn't put the nerve block in the right area either. Like I said, it worked temporarily, but they think that if it would have gone in the right area then it might actually work the way it's supposed to.

After running some more test and taking x-rays that required me to bend every way possible and assume positions just shy of sticking my head up my ass they came back with a possible cause. Since the CT Mylogram wasn't done correctly they didn't get a clear picture, but he was able to see enough to think that I may have Spinal Stenosis.

According to the Mayo Clinic;

Spinal stenosis is a narrowing of one or more areas in your spine — most often in your neck or lower back. This narrowing can put pressure on the spinal cord or spinal nerves at the level of compression.
Depending on which nerves are affected, spinal stenosis can cause pain or numbness in your legs, back, neck, shoulders or arms; limb weakness and incoordination; loss of sensation in your extremities; and problems with bladder or bowel function. Pain is not always present, particularly if you have spinal stenosis in your neck.

Spinal stenosis is commonly caused by age-related changes in the spine. In severe cases of spinal stenosis, doctors may recommend surgery to create additional space for the spinal cord or nerves.

I had back surgery in 1995 and 1997 and had a fusion done. I have hardware in my back and right above the hardware there appears to be a narrowing of the spinal cavity which the Dr. believes is pinching the nerves running down my legs. That may not be causing the numbness but it is public enemy #1 in the pain area.

When the Dr. told me this I felt a huge weight lifted off of me. I have lived with this pain for so long, not knowing what the cause is and to hear that I may have a way to alleviate the pain was fantastic news. I have always felt that there was something going on but no one could pinpoint it. Hopefully this is it.

The neurologist wants me to get another nerve block done. This time in the correct area. He said that I will need to get another CT Mylogram done but he wants to get the nerve block done as soon as possible to help with the pain then go from there.

Hopefully it will work. I'm keeping my fingers crossed. 


  1. Oh Roy...this is absolutely wonderful news. I hope and pray that these are the answers that will have you on your way to a pain free life and give you back what this rotten condition has taken from you. You will be in my thoughts and prayers and please keep us updated!

  2. Fantastic! And ditto to what Cmom said!


  3. Thanks ladies. I know it's not the manliest thing but when he told me his thoughts I started to tear up a little. It was such great news to hear that there was finally HOPE. I will definately keep everyone informed.

  4. I love your blog, so I gave it an award.... you can get it on my post here: http://www.myhusbandateallmyicecream.com/2011/07/this-week-in-blogger-idol-in-true.html