Perhaps someone has an idea of what's going on with my leg

[Diane BCSW]

I would love to hear your comments if you have any. I'll precede this with saying I'm 8 months out from the 4th revision surgery and have been doing fairly good. Have my bad days and my good days. Last Friday, at work, around noon, I experienced an extreme weakening of my right leg. I had my cane with me, so knew I could hobble around on it and at least get to the car. I didn't have any trouble driving. Once I arrived home I switched over to a rolling walker and here it is Saturday night just past Midnight (making it Sun morn) and I'm still using the walker. My right leg will not support me although I've tested it many times over the past two days. When I'm resting in bed, I also have trouble moving the leg due to a slight amount of pain it has. I felt up and down the leg to see if I felt anything unusual or different, and on the outside of the leg starting around the knee, it's pretty sore all the way to my waist. That includes the Bursitis I've had forever and a day on the right upper thigh and hip. When I attempt to place weight on this leg, I initially get a shooting pain that goes across the lower part of my torso with a jab going across my groin. There's been two new things - one is my mother moved in with me; however, my brother handled the heavy work and the movers handled the rest. Occasionally I picked up something small. The next was on Thursday when I got a Bone Scan. Telling the technician about the rods in my back, she took the tests on my hips. I was both osteoposis and osteopenia. Both of those things sound like far-fetched to what's going on.

Diane

If you have an idea, please let me know. I may not get to see the doctor until Tuesday as Monday's are surgery days.

[discombobulated]

Hi Diane,

Just wanted to wish you well with sorting this out. To be honest, I'd say get on to your surgeon as soon as you can as it could indicate nerve involvement (not to say it's anything major, but it's always good to rule out these things).

I've had osteoporosis for several years & have never heard from my docs the potential of anything like you describe being a direct result of osteopaenia or osteoporosis...I'm gonna take a leap & guess you'd have noticed if you'd broken the leg

Anyhow, all the best. It sounds like you've been through the wringer, with 5 spinal ops!

Take care

[Diane BCSW]

Thanks Discombobulated for your response. I didn't think that osteoporosis has anything to do with the condition, but it was just something new that had happened. I'll try to contact my doctor tomorrow and see when they can get me in. It hasn't let up any over the weekend and I have continued using the walker to get around. Whenever I lay down, I'm feeling some very uncomfortable pains in my lumbar and that, coupled with the leg thing, has me pretty worried. Although I've never had the leg thing before, the symptoms of broken rods are pain.

I don't know if I reported this or not... I feel that I did, but my memory is getting so bad. I saw the Pain Management doctor early last week (or was it the week before?). His diagnosis was that I have a protruding screw. He thinks it interferes with my exercises. I don't usually dispute a doctor's finding, but I just don't agree. I know the protruding screw is there because I can feel it, but it causes no pain and it's way up near the lower shoulder blade area... a far distance from the other problems I am having.

I think your nerve involvement idea might be a possibility; and as to the broken leg, no... I haven't fallen or twisted my leg. What I'm wondering is, is there something going on in my lumbar and is it referring pain to the upper leg.

[discombobulated]

Hi Diane,

At least there's no broken leg

I have some irritation from my top screws, too (just in a bit from my shoulder blades), but I'd have thought any nerve involvement up that far should also be noticible in your chest/trunk region, as well. I tend to agree with your idea about a lumbar spine nerve possibly being involved, but for sure only your doc can say. If it helps ease your mind at all, I'm told that it's EXTREMELY difficult to break a rod, & the result is immediate, excruciating pain So I wouldn't expect that to be your problem

With the osteopaenia/osteoporosis, have you been referred for treatment for that? Especially while your fusion's healing, building (or at least maintaining) bone density is VERY important. There are several oral & IV meds that can be helpful (my favourite is ZoMeta - one IV infusion per year!). Also, it's important to ensure adequate calcium & vitamin D intake + minerals like zinc & magnesium, & also weightbearing exercises like walking (of course, when you're up to it). Sorry if you already know all that, but better to be safe than sorry. I have a revision of my lumbar/pelvic rod extensions coming up in December, because my osteoporosis caused the rods in the pelvis to not fuse properly - they're just shifting around in there, grinding up bone. Again, I don't mean to scare you, but I'd hate for that to be a problem for you.

I hope you can speak with your surgeon soon & all this turns out to be something minor Please keep posting & let us know how you're doing.

Take care.

[CurvySAT05]

What levels are you fused?
My thinking, like discombobulated, would be that you have some form of nerve involvement. Have you ever had sciatic nerve pain? If your fusion isn't far into the lumbar spine, have you ever had issues with degenerated/herniated discs? Do you have any numbness in the leg or groin region, or just the pain with palpation? Have you had any issues with bowel or bladder retention/incontinence?

Sorry for so many questions. I'm trying to think of what it could be...

[Diane BCSW]

Thanks again Discom & for your posting, Curvy. I went in yesterday and saw one of the other PA's. I'd forgotten that I had issues with this same leg back in July and according to my chart, my doc said at that time that a nerve study needs to be done but in July, it was too early. There was talk then about the sciatic nerve. So, I have a nerve test or study scheduled for tomorrow with another doctor in their practice. They are also sending me for another bone scan next Monday & Tuesday. I had to stay home from work again today in that I'm experiencing real pain in the right leg which comes and goes. The Xray they took showed no rod breakage, but she said there were some shadowy areas around the screws in the lower lumbar region that she wants Dr. Viere to look at. I'm scheduled to see him next Tuesday after the 2nd bone scan. (I noticed I called last week's test a "bone scan" - my mistake. It was a bone porosity scan; but ya'll probably knew what I meant)

Curvy, let me see if I can answer your questions. My initial surgery covered the area from T12 through S1. At that same original surgery, there were 3 degenerated discs that were fused. 3-1/2 months later, my first revision surgery was to search out the cause of my not being able to walk more than a few feet, and the Xray showed either a broken rod or a loose screw in the pelvis. It was a loose screw and Dr. Shelokov (my first surgeon) replaced both pelvic screws with bolts, but while he "happened to be there anyway", he opened me up completely to make sure nothing else had happened. On the 2nd day after surgery, he sent me to a nursing home where I wasn't allowed to raise above 30 degrees for 7 weeks. Yippee. The next revision was a year & a month later (Jan 05), when Xrays showed me not to have fused throughout the thoracic. I don't know about removal or replacement of hardware, and know only that he cut me open from the top to my waist. Then last summer, after having trouble with my back all throughout the spring, an Xray taken by Dr. Viere's office revealed my rods had broken. The breaks were occurring just above my waistline, so that was proof that you don't have to be experiencing pain... lots of discomfort like I'd had all spring long, but not the horrible pain. So the revision surgery was in Sept of 2007, and in December of 2007, I did indeed start having the bad pain that Disc spoke of; Dr. Viere had already dismissed me, and was actually out of town, so when I called in, I got an appointment with his PA and the Xray revealed another set of breaks, this time in the lumbar. So at this last surgery this past January, Dr. V took down his repair of Sept and made one continuous repair of the broken areas.

That is why I am so paranoid about rod breakage. But nobody warned me about this nerve thing. I do remember having some problems with the same leg in the early part of the summer, but due to this now-horrible memory of mine, had dismissed it from my mind. At that time, it only hurt, so this weakness and inability to stand on it is a new symptom.

As to the treatment for the osteoporosis, it was just discovered last week. Additionally, I also had a couple of other things show up on the blood test that my new internal med doc had circled and wrote down to see her about them. I haven't had a chance to call make an appointment; I'll simply have to get through these back/nerve tests that are scheduled then will get with my new internist. One of them must have been a level of something showing a bladder infection, because the PA asked me if I was being treated. Nope. I think she then forgot about it, so I'm just drinking a lot of cranberry juice.

Thanks for giving me a forum to write down all these worries and concerns and for writing back and trying to help me figure out what's going on. Maybe it'll all blow over and I can get back to just living. And Disc, I wish you so much luck with your upcoming surgery. I'm hoping that the new internist will treat me with the once-yearly stuff like you. I took Fosamax for a long while, but stopped it when some people began to have the horrible side effects (jaw rot).

[Susie*Bee]

Diane-- thanks for the update. You've been through so much that it just doesn't seem very fair that you're having such pain and problems again.

I take Evista-- which is a bone strengthening med that unfortunately you take each day, but it's a routine you get used to. I also take 1500 mg. of calcium with vit. D (Os-cal) daily. Even so, I have osteopoenia, but shudder to think what it would be without having those for the last 3 years...

Keep us informed with what happens next when you get a chance. I hope they are able to figure out how to help you get relief. And with all the other medical problems you're having!

[Diane BCSW]

I know, Susie, it's kind of blown me away. Since I've been using the walker ever since Friday and seems like this might keep up, then I don't know what to think. It might be different if I hadn't been so active in square and round dancing before all of the surgeries but now I'm getting further and further away from those activites. I'm definitely not the spectator sort. Only my being treasurer at my long-standing club keeps me going to the dances... just to take money, and my being a webmaster keeps me involved with several clubs and organizations for their websites. This counselor I start seeing told me that I really needed to start getting out and having some fun. I agree.

I'll know more about this time next week and will let the group know.

By the way, I ordered a book spoken about in here - "Scoliosis Surgery" by David Wolpert - got it at Amazon and it is great! I wish I'd had it before I ever went down this road.

DebiE, be sure to get a copy of it before your surgery.

[debbei]

I know, Susie, it's kind of blown me away. Since I've been using the walker ever since Friday and seems like this might keep up, then I don't know what to think. It might be different if I hadn't been so active in square and round dancing before all of the surgeries but now I'm getting further and further away from those activites. I'm definitely not the spectator sort. Only my being treasurer at my long-standing club keeps me going to the dances... just to take money, and my being a webmaster keeps me involved with several clubs and organizations for their websites. This counselor I start seeing told me that I really needed to start getting out and having some fun. I agree.

I'll know more about this time next week and will let the group know.

By the way, I ordered a book spoken about in here - "Scoliosis Surgery" by David Wolpert - got it at Amazon and it is great! I wish I'd had it before I ever went down this road.

DebiE, be sure to get a copy of it before your surgery.

Diane,

I did get the book months back, also from Amazon. I read it in less than a day. I think I'll re-read it after this weekend. Thanks for the reminder.

[discombobulated]

Diane,

All my fingers are crossed for you with your scans, I think, soon. I can certainly understand why you'd be worried about breakage Horrible that you had to go through all that, but at least - much thanks for the tip that breakage doesn't have to be excruciating. Useful to know :-\

It's good that you're still able to be involved in some of your "former life", but definitely pick up some new things for fun, too. All this is pretty wearing....

Thinking of you, hope you get some answers. Take care.

[Diane BCSW]

Update

On Monday, after the leg pain started on a Friday, I went into my surgeon and saw one of the PA's. The best news of that day was the Xray... nothing broken!! I got an appt for the next day with one of their staff doctors who is the nerve/pain specialist. He ran the nerve tests on my right leg (ouch, ouch) and found nothing. So I went on about my way, still using the walker. I had a follow-up appointment with my new internal med doc on Friday and when she saw me, she had a fit. She immediately got on the phone with my surgeon, and unfortunately, I couldn't hear the conversation, but apparently, he told her to tell me to come straight to their office, that he was going to put me in the hospital and run more tests. When she came back to the room, she told me she was worried about a stroke. So I was admitted around 1pm on Friday, and had a cat scan around my pelvis and whereever else that evening. No more tests until my doctor got back into town on Wednesday and he had them run a cat scan on my brain. Still nothing. I took pain pills pretty regularly in the hospital, and take them now, probably 2 to 3 times a day, but the leg is still the same. Won't support my weight and hurts to varying degrees. I sort of agree with my doctor's last comment that he thinks it might go away as mysteriously as it started. It started two weeks ago tomorrow.

In the meantime, I'm going to get set up to work from home. My boss has said he's fine with this as long as I come into the office twice a week.

So, there's really nothing else to say or do. I'll let you know when the "magic day" comes. haha

[discombobulated]

Hi Diane,

I'm sorry you still have no answers, but sure glad they ruled out the big nasties like rods breaking or strokes!

All my fingers are crossed that your magic day comes SOON. Handy that you can work from home a few days a week.

Take good care of yourself & please keep us posted Thinking of you.

[Susie*Bee]

Diane-- I know this must be so unsettling, disappointing, and confusing for you. I'm sooo glad your doctor called your surgeon and read him the riot act, so to speak, and feels that this is serious and needs to be addressed. It's probably not real comforting that they haven't found the problem, but hopefully it will be true that it will disappear as mysteriously as it came. Do keep us posted. I'll be praying for you.

[debbei]

Oh Diane honey,

I am so sorry, you must have been scared when the Dr. mentioned the "S" word. Thank goodness that was ruled out. I hope that it will be a disappearing mystery too. Good news about the working from home thing, and if you think going in 2x a week is too much, you let your boss know. Once you prove that you are actually doing your work and not just sitting around watching soap opera's the boss might agree to more time at home. I've worked from home for years, and every time I got a new boss I had to prove myself over again in that respect.

(((Hugs))) and here's wishing for a mysterious, miraculous, full recovery.

[loves to skate]

Wow Diane, you have certainly been through the mill way to many times. I'm sorry the Doctors don't have an answer for you, but glad that the most serious things have been ruled out. I'm also glad that your boss will let you do most of your work at home. Lets hope and pray this problem actually does disappear as mysteriously as it came, and soon. Hugs, Sally