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Old 10-15-2007, 02:23 PM   #1
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Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Just wanted to post some items of my current situation and see if anyone has anything similar or thoughts:

2.5 years ago the disc at L4/L5 ruptured as I bent over one morning. Worst pain I've ever felt. Had several months of back, shoulder, leg pain treated with PT, narcotics and eventually tried the drx-9000 treatment + chiro treatments for a year. Things today are improved but still not great.

After a first MRI (about 6 months after initial rupture) a surgeon said he didn't think my case could be fixed with surgery. So, things continued on with the chiro, increasing the exercise and manage with vicodins and muscle relaxers as needed.

So today, the biggest problem is if I have to stand still (in a line) or walk slowly, wait for an elevator or things along that nature, within a couple of minutes the pain starts in my left foot - radiates up my leg into my back and the right foot usually starts the same mess now and then. If I sit down or lay down for 5 to 10 minutes, the pain will usually go away and I can continue on (until pain comes again and I have to sit down again).

Some times I medicate prior to the onset of pain if I know I'll be in a line somewhere or more likely will have to stand around or do something that will trigger the pain and though the pain is dulled, it is still there.

A follow-up MRI which also included my neck (when they tried to determine why my shoulder was hurting so much) showed:

There is degenerative disc disease at the c5-6 and c6-7 levels with disc space protrusions. At the C5-6 level, there is cord compression from a central disc space protrusion. The exit foramina are patent. At the C6-7 level there is central and right sided disc space protrusion...

Anyway, the surgeon looked at the MRI for my neck (which now doesn't hurt and the shoulder pain hasn't been a problem for a long time) and said that he could fix with replacing the protruding discs with a donor bone and fusion and I'd be back at work 3-5 weeks later.

At the time I told him my neck wasn't the problem and it was still my back pain and I didn't want my neck cut open if there was no pain and no loss of control.

The 2nd MRI writeup of my back (sorry to type all of this but again, I am hoping someone has had similar / same issues): There is degenerative change seen throughout the lower lumbar spine. For this report, the lowest most well formed lumbar type vertebral body is called L5. There is degenerative disc disease at the L5-S1 with a tear in the annulus and a central disc space protrusion with some central nerve root compression. There is mild facet disease. The lateral exit foramina are judged patent. At the L4-5 level there is degenerative disc disease with diffuse disc space protrusion causing central canal stenosis and nerve root compression. The L4 lateral exit foramina are patent bilaterally. Degenerative change is seen in the lower thoracic spine with mild disc space protrusions at T11-12 and T12-L1 levels. The conus ends normally at L1. No fracture or subluxation is seen.

There was an area for "impression" which basically said no overall significant interval change from the 2005 MRI.

My primary care doc has referred me to an Orthopedic Surgeon at Georgetown Medical school that I see in early November and will see if he has any ideas or solutions to my present state of things.

In the meanwhile, again - does any of the above sound familiar to anyone or why the pain is so much worse when I stand still than any other time? If I am active and moving, then usually things are tolerable but if I have to stop and wait for a traffic signal or walk slowly through a grocery store, then the pain starts in my legs and travels up into my back and relief will only come if I can get off my feet - which sometimes I end up just sitting/lying on the ground where I am at if I can't find a chair close by.

Long car drives used to be a problem but either that part has gotten better or simply knowing about the issue with a pain killer before and a tolerance to pain, I've simply learned to live with it. Sitting at a desk is sometimes an issue if I stay in one position for too long with moving. Sometimes manual labor is an issue and other times, it is not.

The original surgeon I see said he would be willing to try a fusion on me or some other type of operation but didn't think it would be successful in my case and might lead to my being in worse shape and/or the need for additional operations.

Originally, my insurance was a not so great HMO so getting additional opinions and treatments were limited but I've changed companies with a better insurance plan so the primary doc told me while I've got the coverage, I might as well take myself down to Georgetown to see what their view is.

It's not like I am hunting for an operation - I just want the pain to go away and the fact that the first surgeon told me, 'I cut people open every day and most problems have a surgerical fix in my opinion but in your case, I don't think it will fix anything" does not fill me with much confidence.

thanks for any comments.

Alan.

 
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Old 10-16-2007, 03:12 AM   #2
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Hi,

I know your symptoms well...its exactly how mine were a year or two ago...quick walking (from the off) was fine but queues, or walking at a slow pace were murder for me, most days, but not all. Mine progressed so that instead of being something that happened a few times a week, it was everyday, and the length of time shortened and eventually led to it being anything where I was upright or straight-backed...sitting upright, lying flat, walking fast or slow...I can't imagine wanting to try running! but I'm still fine if I sit curled up, lie in the foetal position, and I'm (well, until recently for reasons below) still pretty supple, flexible etc...I can (could) squat, bend,lift etc...as normal.

Moving along, I had an operation in April and another september and am still waiting for improvements. I've had a little (I can walk for 5mins instead of 2mins) but its nothing to write home about. Whether this is just a long recovery or a second unsuccessful operation is yet to be seen.

Anyhow, the symptoms are typical "claudication" which occurs from stenosis - narrowing of the spinal canal (where the nerves start) and/or foramina (where the nerves exit). In my case its from a big lateral disc bulge on one side, but its seems there are a few potential causes in your case...disc protrusions, facet disease (the facet joints get bony growths on them which narrow the canal and foramina). the reason its only when your standing is that when you're upright the back extends slightly and the spinal canal and foramina narrow, but when you bend over, or flex forward everything opens up to give the nerves room.

As for treatments its complicated...surgeons may be reluctant if there's a lot of problems at different levels...however, there's some on here, Baybreeze in particular, who had good results from surgery for stenosis. I'm still waiting to see...keep hunting for opinions because you shouldn't have to live with the pain! see another surgeon if necessary.

I never found a painkiller that worked...I'm sure they're there but I don't want to try anything that's going to knock me out...the idea is to control the pain so you can function again and if you're in a constant state of grogginess it kinda defeats the point. Like you, I'm not in extreme pain all the time, so while I have no life on my feet, I can at least be relatively pain free when I want...after reading some stories on here, I'm grateful for that.

Well, I hope I haven't rattled on to much and that you find this useful. The causes are a bit different I think in our cases but the symptoms are very similar. My gut feeling is that its not something to be solved by physio or painkillers and surgery may be your best bet, so it may be time to see another surgeon. Surgery isn't always 100%, but sometimes even 50% relief can make a big difference. Problems often recur with stenosis (the bony overgrowths grow back) but that can still take a while. On the other side, sometimes you can create more problems with knock-on effects on other levels, instability etc... these are all things you would need to discuss and weigh up in your own mind...

All the best for now,
Jinks

 
Old 10-16-2007, 07:03 AM   #3
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

It sounds like classic aquired stenosis or neurogenic claudication. Because of all the changes in your spine the nerves are not getting the blood supply they need. They are in effect being squeezed off. They function fine when no demand is being placed on them but cannot carry a load like a brisk walk. Leaning forward does open up the spine hence leaning over a shopping cart often makes walking easier.

I can no longer walk except for short distances around the house. Going out for me requires the use of an electric scooter. I am seeking surgery. Sometimes this condition can become severe enough that even walking around one's home becomes impossible.

I also have a large herniation which plays into my symptoms and I have a very old fusion. You may stay the same for quite some time. No one can predict how you will progress.
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Old 10-16-2007, 02:57 PM   #4
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

I had surgery in February (fusion at L3-4) for spinal stenosis and have had excellent results. I was afraid I had waited too long and that the nerves had become permanently damaged, but that wasn't the case. Anytime nerves are impinged for too long, they won't recovery; the problem is there is no "time limit" as it differs from person to person.

The reason the surgeon wanted to operate on your neck is because of the spinal cord compression at C 5-6. You don't want that compression to get much worse....you risk being paralyzed at some point, so get a close eye on that with MRI every 6 months or so.

I hope that you will get a couple more surgeons' opinions on what needs to be done...you've got a lot of stenosis.

Carol
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Old 10-16-2007, 05:45 PM   #5
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

I have neck problems as well and that is the area that can have serious consequences. The spinal chord which is not present in your lower lumbar is present in your neck and is much more sensitive to injury and does not recover. So please pay attention to your surgeon in regard to your neck not so much nerve root involvement but the chord compression as this can become very serious much more serious than your lower back problems. Also chord compression is painless but can have devastating consequences.
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Old 10-16-2007, 06:03 PM   #6
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Let me chime in here, I had nerve root problems in my neck, cervical stenosis, narrowing the whole thing, and it affected my legs, walking etc.... this is nothing to fool around with, nothing at all, the longer you wait the worse it's going to get and the more neurological problems will come up and then if your surgeon decides to do surgery the damage that is done will never get better, yes surgery is not a cure all, and any surgeon will tell you that, I was told that for both of my neck fusions my surgeon said to me, that 1. I will come out of surgery better, 2. I will come out of surgery the same, or 3. I will come out of surgery worse, I took my chances because I knew that I couldn't live the rest of my life in the condition that I was in and the amount of pain I was in plus I knew that if I went longer in my condition the more neurological problems would come up and I would just continue to get worse, and I'm thankful I went through both surgeries and came out better then I was before surgery.

Now I'm going through lumbar issues, I'm at the point right now that everyday I have pain, it's difficult to walk, to stand, sit, lay, my nights are a mess, and I don't know what is in store for me I"ll find out more this week, but I've tried everything medications, injections and I continue to get worse. All I'm saying is just be very careful when dealing with your neck, because there are so many nerves in that area that control so many issues for us it's nothing to put off lightly.

Neck pain and lumbar pain are both difficult to deal with, and I'm still trying to think of which area is worse, because I still deal with neck issues and always will as my whole neck is degenerated. But not being able to walk with my lumbar issues is very difficult and tough to deal with, I'm almost at the point of telling my docs. to go in and fix it and let me get on with my life, because I can't live my life in this condition.
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Old 10-16-2007, 06:09 PM   #7
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

You have received excellent information from the other posters. Many of us on this board know very well the symptoms you are describing. Please be sure to go to a fellowship trained spinal specialist who does nothing but spinal surgeries. This is very important!! I'm sure Georgetown has some sort of "Spinal Clinic" that is attached to the university, and that would be a good place to begin.

No amount of therapy or exercise is going to help the stenosis. Depending on the amount of stenosis, there is little to almost no room for the nerves; this is what causes the pain in your legs (for the lumbar stenosis).

I would recommend getting several opinions and reading as much as you can on your condition so you will be able to make an informed decision.

xx Tsohl

 
Old 10-16-2007, 08:11 PM   #8
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Alan, you might want to check out Thomas C Schuler MD in Reston VA. The entire practice has an excellent reputation.

 
Old 10-18-2007, 10:26 AM   #9
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Jinks,

Thank you for that reply. You did more to help me understand the situation and give me some ideas for further research with that one reply than what I've gotten from anywhere else for the last two years.

A.

 
Old 10-18-2007, 10:42 AM   #10
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

pooby,

you cite some of the same reasons the doctor wanted to do the ACDF on my neck for the future potential problems that might come up.

For me, it is just difficult to accept having such a serious procedure done for a condition that at the moment doesn't cause me any pain or other issues (I have full mobility, no numbness in the arms/fingers) but yet have so many problems and pain with the back and leg issues that I would love to have that resolved first and then move on to the preventative item which is sort of how I am seeing the ACDF at the moment.

I suspect the doc at at Georgetown will take one look at the cervical portion of the MRI and agree with wanting to do the ACDF since I got the impression from the first doc that my case was such a clear indication of the problem that it was almost a case where the first doc told me we didn't need to schedule the surgery "tomrrow" however I needed to not wait around for months and months before things crossed over into the "too late" category which I think was his biggest concern since I wasn't in pain from this.

Again, it is the lower back items that I most want to discuss with the next doctor and the comments I've gotton on this reply have given me some great info in what to research prior to the next appt and to help me understand some of the related items.

A.

 
Old 10-18-2007, 11:01 AM   #11
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Yes, please don't wait. Paralysis is a very real complication of chord compression so get attention sooner rather than later. [B]Pain is not a symptom[/B]. This should take priority over your lower back.
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Old 10-18-2007, 08:14 PM   #12
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Again, I'd like to thank all of you for taking the time to share your information, thoughts and advice with me - I found it all to be very helpful as well as giving me some areas of concentration to look into instead of trying to delve into "all things back-related" as I sought out different medical opinions.

I hadn't realized that with the cervical cord compression issue that the case of no associated pain didn't make it any less of a serious situation. Guess I had it in my head that since due to the back pain and there being a torn disc that even with two buldging discs in my neck (and when the surgeon showed me the MRI - even to my untrained eye, it seemed quite simple to see where the buldge from the discs were impacting the cervical cord and the noticeable bend or curve to what otherwise probably should have been a smooth line) since the neck wasn't hurting, the issue could wait.

At one point, after the MRI that showed the cervical issues and the surgeon telling me it was a serious problem (and then me being a bit freaked out) I took the MRI to the chiropractor who was treating me with the drx-9000 plus adjustments and who had been making some adjustments to my neck a couple of times a week, immediately stopped any futher neck adjustments (beyond some mild stretching exercises) after taking a look at the MRI result. Guess that should have been another tip off of how serious the issue could be.

For several months, I had extreme pain in my right shoulder off and on that would just ache for hours on end and then go away (however, no specific movements by a doctor or physical therapist to my arm or shoulder could ever make the pain occur during the non-pain times so they all sort of came up blank and that was what prompted my primary doc to order the MRI for the cervical area. The thing is, at some point after about a year (and after about six months of working with the chiro plus specific exercises he assigned to the shoulder pain, things just sort of went away - which also might be why I felt the cord compression wasn't a problem, although it may now be a case where the shoulder pain was not due to the cord compression and I'm still just as messed up as before).

I think when the surgeon first metioned the operation for the ACDF I asked if it would make the shoulder pain go away and I got sort of a non-committal answer from him on this which was also why I didn't go forward with the operation at that time since it didn't sound like it would really help me and some of the "bad stories" I read (possibly on this board) about the ACDF procedure really didn't motivate me to want to get it done (but I also realize that the people posting here about problems after that procedure were probably in the minority and the ones without issues, simply got on with life with no problems or complications).

At one point, the shoulder pain was so bad it was waking up every night to the point that I begged the primary doc for some type of prescription sleep aid to see if I could get through the night and get some rest (which she gave me) instead of having to wake up once or twice every night, swallow a couple of vicodins and valiums and slap on an ice pack for 30 minutes waiting for the pain to go away enough to be able to go back to bed.

I'm just so glad that shoulder pain (whatever the cause) has gone away. I will still get a little pain once in a while from it but nothing like it was originally like. Also at the start of this year, I joined the hypertension and diabetes clubs so getting those things under control and understood moved to the front of my to-do list but now that I have a handle on these, I'm ready to go back to trying to make a decision on what/how to handle the back and neck issues.

123dietdrpepper - thank you for the mention of Thomas C Schuler MD in Reston VA. I'll keep him in mind for a 3rd opinion if needed. The doctor I am going to see in November is William C. Lauerman MD who is listed as a Professor in the Department of Orthopaedic Surgery for Georgetown medical. My primary doc said she has heard good things regarding this doctor and has sent other patients to him who have reported good results (it was just a 3 month wait to even get the first appt with him as the only bad part).

The first/other surgeon I have seen also is a pain mgt doctor and has so far been very helpful either in the pain meds or for other drugs or treatments I have asked about over the last two years which has helped make things a lot easier but as many of you probably know, pain meds can only help manage the short term pain and temp relief but will not ever fix anything.

A.

 
Old 11-12-2007, 01:20 PM   #13
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

For any one keeping score, I was able to see the doctor from Georgetown last week and it was his opinion based on talking with me, physical exam and a look at the MRI results that he doesn't think I need surgery either on my neck or back at this time. He wants me to go through a rehab process with a PM and spine specialist doc nearby.

There was a small slip up with the mri results - my folder that said 2007 actually had film from 2005 and 2006 in it but part of the write up said there didn't seem to be any real change from 06 to 07 so the doctor didn't seem overly concerned by this.

He made it sound like spine rehab was going to be something more involved than normal physical therapy and/or the exercises I did for a year with a chiropractor but I'm not sure what to expect.

On one hand, I was relieved that the doc at Georgetown didn't immediately want me on an operating table but on the other hand, I don't see a rehab program as offering any quick solutions (although in reading some of the postings here, some of the operations didn't offer quick solutions either).

A.

 
Old 11-12-2007, 01:42 PM   #14
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

That is good news Alan and I respect a surgeon who is not in a rush to go to the operating room. My initial surgery was done at Georgetown by a Dr. John Langloh - not sure if he is there anymore.

Personally, I would consider a second opinion just to be extra cautious. Good luck and I pray that things settle down for you.

 
Old 11-28-2007, 10:28 AM   #15
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Re: Extreme back/leg pain when standing but otherwise, not too bad - looking for help

Turns out the referral to the capital spine and pain mgt center worked out fairly well for me. The doctor there recommended an SI Joint injection after the exam and here it is a week later, and I feel almost pain free now.

In the past, I could only stand or walk slowly for a couple of minutes before shooting pains tore up from my foot and into my back and I had to sit down in order to get some relief.

I just went for a 30 minute slow walk and even stood around and paced back and forth on the side walk for 10 minutes trying to see if I could bring on the back pain but it never came. Two weeks ago, had I tried this I'd have been running for the pain killers and a place to lay down.

There was a bit of an off/on tingle in my foot but nothing near the level of pain as before and my lower back and hip at worst felt mildly uncomfortable but wasn't pain of any sort.

I have a follow-up appointment next week to discuss how things are going.

I thought when the doctor was administering the injection and I asked if this was a "stop gap" measure, I'm pretty sure he said, no - this was a permanent fix.

From what I've read, I wouldn't think an SI Joint injection was meant to be permanent but more of a temporary relief and as a diagnostic tool to see if the SI joint was the source of the pain before going forward with any other treatements.

Does any of this sound right or perhaps I misunderstood what was said?

I would think treatment would be either additional injections down the road if the pain returns and/or that radio frequency nerve burn procedure for a little longer term option.

Not that I'm complaining or anything since this is about the first time in two and half years I've been mostly pain free and not having to worry about finding a place to sit down along the way from my office to the parking lot on the bad days if I had to park more than 5 minutes away.

Again, thanks for everyone's posts.

A.

 
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