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 :p

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 :eek: 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... :eek:

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 :eek: 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]

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! :eek:

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

[Diane BCSW]

I am so happy to hear from Disc, Debbe, Susie, and Sally on your interpretation of this latest thing and your commenseration (sp) of my findings. You know... you have something like this, you don't want it to be anything bad, but you do want it to be something treatable. Then to hear that they just can't find anything!! Damn it, my leg hurts, sometimes when I'm just laying down (when I've been up for a while) and always when I'm trying to walk using the walker. One day earlier in the week, a Physical Therapist came in, and he got me to talking about *what was going on in my life*. He didn't come out and say that it was psychosymatic (sp) but gently got onto the subject. He said he knew the pain was real and he felt that I was going to need some physical therapy to get over it. I've got to try to find his cell number (he wrote it on a napkin) and see what he would recommend me to do, since my doctor failed to go down that route. I've been so out of it with depression I haven't even thought of him until just now. I haven't been back to work --- how can I? (but have been doing work things on the computer today and yesterday). I was really cheered to learn that Debbei works from home. It's such a novel concept to me, it's hard to get my thoughts around it.

On Monday, I'll have to call the internal med doctor again (it's a she)... there was some things on my blood report that she needs to address and one of them, being a high potassium reading, is what might have set her off on the "stroke" thing. That's what the nerve doctor said about that; I've never even heard of having high potassium, low - yes. Due to the telephone call, we didn't finish our visit. When she made that call, I got this mental image of a little ferocious bulldog being in my corner and that's how I'll always picture her (she's a young, knowledgeable new doctor - Chinese by birth). I do remember my surgeon saying they would send her copies of everything done. (they'd better or I'll sic her again, haha)

[discombobulated]

Hi Diane,

I'm glad to hear you at least have a couple of people who'll fight to the death for you :p

How very frustrating that your doc can't get a diagnosis - but remember, technology's good but not perfect, & doctors are only human! Whether or not your depression is making the pain feel worse than it otherwise would, please don't let anybody make you feel "crazy" or like it isn't real! It's great that your physio at least had the sense to broach this sensibly.

If for no other reason than ruling it out or helping the pain - if you feel comfortable to, the mind side of things could be useful to explore. Pain can so easily get us down, & when you're already feeling depressed, pain dragging you down is the last thing you need!

I'm studying to be a psychologist, & I'm constantly amazed at the connections between the mind & body - e.g., hormones & other chemicals released by the brain during high stress can actually increase the experience of pain. So even if your pain isn't directly happening from depression or other "mind things", I really hope that feeling a bit better will help the pain...if nothing else, it will probably at least make you feel stronger to cope with the pain. In any case....depression is such a dark place. Everything will feel a bit better if you're able to get that under control :-)

I'm thinking of you lots, & so hoping things will resolve VERY soon - both pain & the feeling low. It's such a "double whammy" ain't it! Please take good care of yourself.

BTW - don't get freaked by the word "psychosomatic" - it just means that there's a connection between the mind & the body. Feeling pain (esp. long-term) can make us feel frustrated, low, etc., & even change the physiology of the brain; & feeling depressed, anxious, & all those other scary things can have effects on the body. On the other hand, feeling more positive makes it easier to cope with pain & changes the whole body chemistry; & feeling well physically is great for making the mind release less stress hormones, etc., too. We couldn't survive without a connection between the mind & body....so the "psychosomatic" thing is perfectly normal - just not working to your advantage at the moment!


So sorry to ramble - hope this makes some sense!!
Peace to you. Please take care :-)

[Luann]

Hi Diane,
I just thought I'd mention to you another forum that is specifically for spinal revision surgical patients (those who may require one, those who have had one or more after previously having harrington rod surgery) They would welcome your question and since many have experienced multiple surgeries, one may have an answer...just a thought. The website is Flatback_Revised on yahoo.com. Check it out..
Be well!
Luann

[Diane BCSW]

Thanks to all of you who've responded. Thought I'd bring you up to date and ask if there is anyone who's had what I'm experiencing right now. After leaving the hospital and having no answers; matter of fact, all answers said there wasn't anything wrong with me. Yeah, right! Pain that goes up to a 7 or 8. Sometimes the right leg won't work at all and I have to drag it as I'm walking, still continual use with the walker. Can't turn over in bed... too painful. Cannot take a step without the walker, unless I sort of "leap" from one holding place to the other on my left foot. Yeah, nothing wrong.

I went back to my internist for that followup visit about my blood work. She's putting me on Boniva for the osteoporosis. She put me on Levita, which is a medication given to diabetes patients for their leg pains. It really helped with the pain for a couple of days, but on the 3rd day, it no longer did and by that time, I had almost zero short term memory, so I quit it that med. She recommended a Neurologist to me and even though my sleep doctor is a neurologist, I decided to give a new one a chance. I called his office later that afternoon and danged, if there wasn't a cancellation the following day (God is good); otherwise, it would have been November. I really liked him. His name is Henry Raroque and for anyone in my area, he has an office at Las Colinas and at Grapevine. He gave me the most thorough examination extremity wise that I think I've ever had. After about 30 minutes of exam and talking and his viewing the faxed EMG results, he gave me his diagnosis and it makes sense. He said that after five years and five surgeries, each one of them major, my back has been through a lot of trauma. After this last operation in January when I developed Kyphosis around the third to fourth month, he said that this additionally placed strain on my back that my body had to fight, and everything together, including the hardware, placed pressure on my lower muscles. Something about one part of the body will compensate for another part. The result has been that the muscle in my right leg has over fatigued and no telling what. He said there's only one treatment and that's physical therapy. (All of the above has been paraphrased.) He said he would write up a report and send it to my surgeon and my internist. I'll get a copy from someone.

So I got an appointment the next day (yesterday, 9/26) with a physical therapy facility located in Valley Ranch (near Las Colinas) which sets right next door to the Dallas Cowboys training center. Too bad I'm not a sports fan. The first appointment was for evaluation only and to meet the therapist/owner and I will start therapy tomorrow. I'm afraid I don't have any more insurance P.T.'s for this year but in order to walk again, I would take out a bank loan if it becomes necessary. Actually, self-pay patients are $50 visit. So that's not bad. Depends on the number of visits.

My boss agreed to my working at home 3 days and to come in the office 2 days a week. They sent me home Friday with a laser printer and boxes of paper, envelopes, letterheads, etc.

CHRISTY, IF YOU READ THIS, GIVE ME A CALL. The number you left on my VM is missing a digit, so I can't return your call and I would like to talk to you. I only barely remember talking to you while I was in the hospital. These pain pills can really do a number on the memory. :mad: My cell number again is 214-886-4005.

If anyone else has had similar symptoms to these, please let me hear from you. Reply or private will work.

[discombobulated]

Hi Diane,

I'm SO glad to hear you have some answers finally! I hope PT will bring you some relief.

Also - I'd really suggest you edit your phone number out of your post & PM it to your friend instead. You know - scammers, spammers, trolling bots & all that other charming stuff...would hate for you to have to deal with them as well as everything else :eek:

A while back you mentioned some depression (understandable!) - I really hope you're getting that taken care of, too...I know it can make stuff so much harder to deal with :-\ (please don't think I'm "preaching"...just..I know from experience :) )

Take good care now.

[judyk]

I hope the PT works for you. It may be difficult for you, but keep up the faith and you can do it! You have been through so much, and this may be the answer. I know it has worked for me. Good luck. Stay strong! You are to be admired for all you have endured.

[JenniferG]

Wow! That was a disturbing read Diane. I would love to know how you're faring now. Hopefully the PT is doing its job!

Jen