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Old 12-15-2003, 02:32 PM   #1
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standingman HB User
Good laminectomy outcomes wanted (really, all experiences)

Friends--For those of you who've been on this board a while, you know that this thread's title is copied from SHG's on "good fusion outcomes wanted," recently reincarnated by Brooke.

This thread is intended to be in much the same spirit--a chance to share experiences between those who've had laminectomies (recent or distant, and including laminectomy/discectomy combos) and/or anticipate having a lami, either definite or possible. I know there are are number of us in that group--Greg B. just had one; Stillwater, I think, is contemplating one; Shosharnah and I are also in the "contemplating" group; and no doubt there are many others.

The goal would be to help each other with the decision-making process; the experience of surgery itself; and aftercare issues and expectations. Of course, many other threads also deal with these questions. Without being too repetititive, we may want to bring in some of the "greatest hits" from earlier threads that relate to this one. Clearly, the decision-making process and criteria have been discussed many times.

Personally, I would say the odds are about 60-40 I will have the surgery, most likely by this spring if not sooner, unless I see some clear progress. Although not in chronic pain if I "stay in the box," that box is very narrow, both re: sitting and a whole range of things that are the "wrong move." Although I am very lucky to have a job (college prof) in which I have been able to accomodate my situation, I would say that, across work/social/recreational spheres, I've had to give up about half of what had once been "normal" life. That may be the way it remains; I may look back and consider this the _good_ times. Who knows!?

The neurosurgeon I've seen is not veryencouraging, partly because of the function I do have (I continue to do a lot of walking and don't have much trouble with that and, as above, pain itself not that bad if I'm very limiting in other ways). Given what are always uncertainties, and his generally conservative approach (which I like), he says a lami would have about a 50-50 chance of being helpful (with help defined broadly). In the downside 50, about 10-15% chance of things actually getting worse. As I look back, I'd say I made a good deal of progress from July '02 (when things really crashed) to November of that year. Since then--about the past year--it's been more of a wash; some things have gotten a bit better, other things worse, in general a lot of up and down. I had significant nerve damage when this began--documented by emg and by measureable atrophy, especially of the left lateral quad. My upper left leg strength has never returned to what it was before the "crash"--I'd say, if I lost 50%, I'm back to somewhere around 80%, or what had been normal for me. I worry about the continuing irritation of the nerve, and I worry that surgery could make that even worse--a common bind for many of us, I know.

So let me stop there. Others' thoughts, experiences, reflections, are very welcome!

Standingman

 
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Old 12-15-2003, 08:28 PM   #2
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Re: Good laminectomy outcomes wanted (really, all experiences)

S-man,
Well you wanted all experiences so here it goes. As you see in my Signature below I had a Laminectomy in 1990 an honestly it did no good at all as my history indicates. You and I have discussed on other threads about the inexact science and how long that pipeline is from your brain to the lower body. Have you had a Discogram for your problem? Just curious. By the way I see you are a Prof. I have a degree in Social Science but ended up spending 29 years in the mining industry. What a back breaker! Two days and counting to fusion surgery.
Again Good Luck,
Larry
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1990-Myelogram=L4-5 LAMINECTOMY.1998-Myelogram,Discogram,CTscan=L 4-5 FUSION w/BAK cages. 2002-Prolotherapy injections. 2003-April-MRI Lumbar spine=DDD,bulges,arthritis,low disc height,Physical Therapy.2003-May-MRI Thorasic spine=Two herniations displacing nerve roots.2003-July-Nerve blocks/epidurals; 2003-August-L5/S1 FORAMENOTOMY.2003-October-Lumbar Discogram=2003-December-L5/S1 FUSION w/BMP/LT cages. 2004-Jan-Pain much worse than before surgery. CTscan & L1/L2 nerve block & Myelogram.

 
Old 12-15-2003, 11:29 PM   #3
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Re: Good laminectomy outcomes wanted (really, all experiences)

Larry--First of all, my best wishes to you for your upcoming surgery. Force be with you in all ways for an excellent outcome.

As for me, no disco yet (although, as you know, the marching band for DDD U is practicing for the half-time show*) I think I'd wait until surgery was a definite before I'd commit to doing that dance! As you know, like everything else, it is also not without controversy.

You have enough on your mind, no doubt, but I'm wondering if the nature of one's pain suggests anything about its origin. For example, I'm imagining (although could well be wrong) that pain that originated specifically from a disintegrating/torn disk would be relatively chronic, as opposed to pain which was clearly "positional"--either totally there or totally not there--and thus suggestive of a "pinch" related to certain moves, postures, etc.. Make any sense?

In any event, again best.

Standingman

*For anyone who doesn't understand the reference and is curious, see the post-idet thread started by Tennisnut.

Last edited by standingman; 12-15-2003 at 11:32 PM.

 
Old 12-16-2003, 06:54 AM   #4
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Re: Good laminectomy outcomes wanted (really, all experiences)

Well Standingman........I had a laminectomy/discectomy on Sept 5th. I am sitting wondering if you are actually the only person that understand what I mean when I say (or you say) that the pain is strictly 'positional'. This is a super long story but I will try to make it short.
About 3 years ago I first 'ruptured' my L4 L5 and L5 S1. I got better after about a year. Was doing really well but still real careful. I guess the doctor I was seeing said the tears healed. Grant it, I also had a fusion of T1 to L1 at age 17 due to scoliosis which probably contributes to the degeneration below my fusion. I am now 28.
Sooooo, I went boating 2 summers ago and we hit a wave from another boat at a pretty high rate of speed sending into the air and slamming down really hard into my seat. I then reinjured everything. After having test and all they didn't really see much herniation. Slight, but it was still there. Once the 'disc' pain was getting better (a little anyway), I was having more of a 'bone pain'. It was like you say, when I move certain ways it would stab my spine and if I was in a certain position sitting or laying down, I would wiggle around and 'reposition' myself so I wasn't being stabbed or pinched. My doctor kept telling me that it was the disc tears and I argued and it didn't get me anywhere. I then went to the doctor that originally sent me to Shriners when I was younger for my fusion and I told him that "something" was going on and I wanted to get to the bottom of it! He did more tests and didn't find much. He said he could do a discectomy and trim the L4 L5 disc that was pressing on my nerves and see what else he could find. I occassionally had leg pain and ankle pain but nothing constant. Mostly trying to do everything was when I would have the pain so I did nothing. I couldn't even roll over in bed. Getting in and out of a car, man it sucks!
Soooooo, I had the surgery and he was amazed to find major bone growth I think must have been from the facet joints and all that was trapping my nerves.
He cut all that away and trimmed the disc.
Well, it was really crappy the first 6-8 weeks. I was doing really well thereafter, I was walking over a mile a day and doing my exercises along with PT 3 times a week. I went back to work after 11 weeks and thing kinda got crappy. I think it is from sitting all day. I'm hoping it will get better for me though.
As far as the surgery working,(?) some days I wonder but try to remain positive. I can do things that I couldn't do before like roll over in bed and bend a bit. I feel as the bone spur is gone but in some sense I wonder if he missed some. By the way, he told my mom after surgery that the nerve was completely free so I'm remaining hopeful.
My last appt., he told me that I was doing well I just had a long ways to go. So, I'm giving myself more time to make my decison on whether I can say it worked or not.
Sorry so long but it seems that you may be having the same symptoms as I had/have. If you have any questions feel free to ask!!
I wish you all the luck in your decision!!
Keep the faith..........

Christina



[QUOTE=standingman]Larry--First of all, my best wishes to you for your upcoming surgery. Force be with you in all ways for an excellent outcome.

As for me, no disco yet (although, as you know, the marching band for DDD U is practicing for the half-time show*) I think I'd wait until surgery was a definite before I'd commit to doing that dance! As you know, like everything else, it is also not without controversy.

You have enough on your mind, no doubt, but I'm wondering if the nature of one's pain suggests anything about its origin. For example, I'm imagining (although could well be wrong) that pain that originated specifically from a disintegrating/torn disk would be relatively chronic, as opposed to pain which was clearly "positional"--either totally there or totally not there--and thus suggestive of a "pinch" related to certain moves, postures, etc.. Make any sense?

In any event, again best.

Standingman

*For anyone who doesn't understand the reference and is curious, see the post-idet thread started by Tennisnut.[/QUOTE]

 
Old 12-16-2003, 10:58 AM   #5
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Smile Re: Good laminectomy outcomes wanted (really, all experiences)

Hello Standingman,

I had a laminectomy/discectomy on November 11 of this year (l4/l5). Before I decided on the surgery, I went through many months of extreme leg pain. I tried everything else because I really was afraid of surgery after reading some of the horror stories on this message board. When I went to see the surgeon, he said I was waisting my time trying the alternatives. I was miserable and at my wits end so I scheduled the surgery. As of this post I am doing great. I was back to work within 3 weeks of the surgery (desk job). The leg pain is completely gone & I am off of the prescription pain meds. I do however still have some back pain, but it is a cake walk compaired to what I went through with the leg pain.

I'm sure everyone's experience is different, but I am glad I did it and sorry I suffered for so long.

JJ

 
Old 12-16-2003, 10:41 PM   #6
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standingman HB User
Re: Good laminectomy outcomes wanted (really, all experiences)

Hi all--Well, we have a range of experiences, which is certainly to be expected. One of the things that may be useful is to see whether there is general "advice" that comes out of all of this.

Mistina--I have followed your discussion with Janatee with interest. It does seem like "taking it slow" is of the essence, although who knows what makes a difference for particular cases. Many have repeated the warning that the most dangerous time, after surgery, is when you start to feel semi "normal" again. There is more of a risk of pushing it.
My own pain is not positional in quite the way yours is. I can turn around in bed with relatively little problem most of the time. It's the sitting that does me in. And also a certain kind of reaching--like getting something
from the bottom shelf of the refrigerator--unless I'm very careful, as I try to be.

MyCatElvis--How long did you actually wait with your leg pain? And did you have back pain before the surgery as well? And do you now have to adjust your sitting at that desk job? Or was sitting even a problem for you before the surgery? (In know in classic "stenosis," sitting is often more comfortable than standing or walking. Not at all true for me, as my moniker implies.)
In any event, terrific that you had the result you did.

Standingman

Last edited by standingman; 12-16-2003 at 10:42 PM.

 
Old 12-17-2003, 05:43 AM   #7
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Re: Good laminectomy outcomes wanted (really, all experiences)

Standingman, where is your pain when sitting? Mine is in my hips and buttocks, with extremely sharp pain if I shift my weight at all or change position even slightly, using my mouse, reaching for something, turning to talk with someone, and really, really bad when I go from standing to sitting. There is a point about halfway up that if hurts so bad, I have to kind of stop to catch my breath. I am embarrassed when someone is there and the pain is that much because I know it shows on my face. There is no way to avoid that. I know it's not something to feel embarrassed about, but I still do. Also, just standing still is bad. There are time when standing still that the pain is so bad it nearly knocks me over, and if anything (furniture) is close, I grab it and just hold on. It sometimes feels kind of like a vise around my hips, squeezing tightly. But all this is not all the time. There are days, or parts of days, that there is almost no pain. I dont' understand. Some nights, it hurts terribly to try to turn over in bed, or to get out of bed in the morning, and other times it's not so bad. There is always leg pain when walking & going down stairs when I first get up, and standing still to make coffee in the mornings it hurts so much that if I didn't like coffee so much, I wouldn't do it. If it hurt as bad ALL the time, as it does SOME of the time, I would have had surgery already. Does anyone else experience that up and down level of pain?

StillWater

Last edited by StillWater; 12-17-2003 at 06:23 AM.

 
Old 12-17-2003, 05:45 AM   #8
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Re: Good laminectomy outcomes wanted (really, all experiences)

Hello again Standingman,

I suffered with on and off back pain for about a year. In August I went boating on a rough day and thats when the leg pain started. At first it was just a nagging ache and developed into excruciating pain. I was always more comfortable sitting than standing. The day I went into surgery I could barley walk. So It sounds as though we have very different situations.

Anyway, good luck with you decision. I wish you well.

JJ

 
Old 12-17-2003, 09:12 AM   #9
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Re: Good laminectomy outcomes wanted (really, all experiences)

Hi Folks--Stillwater, my pain also comes and goes in some surprising ways. There are definitely better and worse days and even weeks--sometimes a few days in a row during which there is hardly any pain at all. Also, my pain tends to go from "zero-to-sixty" quite quickly. If I'm lying down, standing with a bit of movement, or walking, I often have no pain at all. I can also squat and rise without pain--in fact, squatting usually _improves_ things if I am uncomfortable, I think because it lengthens the lumbar area and the somewhat flexed position may reduce the stenosis. As I've said, sitting or anything twisty is pretty predictable to set off, eventually, a major "twinge," that can be excruciating, as you describe, although I can usually get away with 1-2 hours of sitting during a day before that starts to happen. I'm almost always better in the morning than later in the day; again, I've assumed because the disks start to compress together as gravity "kicks in."

In terms of pattern, mine is pretty consistent with upper lumbar problems. My pain usually begins in left low back, about 2-3 inches left of center spine and at about the L3 level. There is some disagreement among the docs I've seen about whether this is "back pain" in the official sense or radicular pain, that just doesn't radiate very far, as would be more likely for upper lumbar problems (L 1/2 and 2/3). If I push it, there tend to be two typical pathways, that I think probably correspond with L2 and L3 nerves. Both go to hip area first. Then one tends to go to upper thigh and inside upper knee (L3) or across groin and even into genital area (more L2). Occasionally, I also get butt and/or back of leg pain, which is more like sciatica. I've learned that these distributions are often confusing--even to the experts! That's why we have myelograms, discograms, etc., and, even after that, there are often "surprises" when a surgeon eyeballs the actual anatomy.

MCElvis's situation is probably more "classic" for laminectomy. Back pain that becomes very bad leg pain, usually worse with standing/walking than with sitting. My sense is that this also often relates to where the "pinch" is, as well as lumbar level. Based on imagery, my worst stenosis is "left lateral," which is consistent with my symptoms.

I suspect that the more "classic" cases--as MCElvis's--are also more likely to have good surgical outcomes, although that is just a presumption. In some ways, it's a circular argument, since these are also the cases for which laminectomy more likely to be recommended--the "fit" between symptoms and treatment is better established.

Standingman

 
Old 12-18-2003, 09:12 AM   #10
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Re: Good laminectomy outcomes wanted (really, all experiences)

Standing "the man",
Thanks for setting up this thread. It will be great to hear from different people, and their experiences with this type of surgery. For those of you that don't know, I had a laminectomy/discectomy on the l4/l5 and discectomy on the l5/s1 last Thursday, November 11. Prior to surgery I was experiencing some of the same leg pain and weakness the Standing has. The difference for me was, it was getting worse, not better. Towards the end of the day, I could barely walk. Standing's estimate that his normal activity has decreased by 50% was not acceptable for me. I'm 42, have 4 very active kids and a very active wife that runs everyday. I've been a runner, ran two marathons and want and need to be active again. Maybe not to the same level as I was, but I was willing to have the surgery to "attempt" to get there. Each and every one of us have different situations, but the best advice I ever received was on this board. Find a good doctor (check his/her credentials) and be honest regarding your symptoms. And most importantly, tell the doctor what you expect and how to get there. If we all feel we are having surgery that will magically heal our bad backs, I think we are kidding ourselves. But, in order to get closer to our goals regarding recovery, it's my opinion we have to be relentlessly optimistic and constantly push ourselves towards that goal.

As far as recovery goes, I'm pushing pretty hard, but I'm only doing what my body tells me I can do. Like I said above, I had surgery last Thursday, went to work 4 hours on Monday, 5 hours on Tuesday with a 2 hour meeting in the evening, and worked 7 hours yesterday. I've been doing some exercises with a large rubber band to strengthen (slowly) my left leg. I am a VP of Land Acquisition and Development for a major homebuilder, which means I sit alot, stand alot, and walk alot. The best part about that is, I can vary what I do if I get uncomfortable. As far as pain medication goes, I'm trying to keep it to minimum. I'll wake up and go to work, and may not take a pain pill till lunch, and then maybe one when I get home and finally one before bed. One of the best sources for recovery I have found, was to get a great night's sleep, period. I'm stiff in the morning, but the goes away quickly. I've rambled too long, but will update everyone as much as possible. Take care everyone, you've been wonderful for me!

Greg
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Old 12-18-2003, 09:08 PM   #11
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Re: Good laminectomy outcomes wanted (really, all experiences)

Greg--Thanks for the update, which is always of interest, and encouraging in a number of ways. I am close to rolling the dice, and your experience, along with a close friend who also had a recent laminectomy, certainly provide hopeful examples. Of course, I am aware that statistics are just that, and not everyone ends up on the side of the curve they'd wish!

Remind me if you would--Did you also have back (as well as leg) pain before the surgery? And problems with sitting? I think I recall that was part of your situation, but wasn't certain. My friend really didn't have sitting problems. It was pretty much walking--and eventually standing--that made life unbearable. For him, the decision was not difficult--it was either surgery or never get up from the floor again!

Standingman

 
Old 12-19-2003, 06:17 AM   #12
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Re: Good laminectomy outcomes wanted (really, all experiences)

[QUOTE=standingman]
This thread is ...a chance to share experiences between those who've had laminectomies (recent or distant, and including laminectomy/discectomy combos) and/or anticipate having a lami, either definite or possible....
[/QUOTE]

If this were a three-act play, with Act I being problem and diagnosis, Act II being information collection leading to a decision, and Act III being surgery and recovery, I would be one of those in the Second Act. It is a lonnnnnng Act, with many players entering and leaving, and long internal discussions about the pros and cons of surgery.

My formal diagnosis is foraminal stenosis at L5/S1 on the left and L4/L5 on the right, caused by arthritis and arthropathy of the facet joints. My symptoms are the classic radiculopathy in the buttocks and down the legs (and into the foot on the left). The left leg is far worse than the right. There is minimal pain in the back itself. I can sit comfortably for hours, walk for 10 minutes with a limp, another 10 minutes with a shuffle and dragging foot. Can stand for 5 minutes okay, 10 minutes if pushed, will fall at 15 minutes.

I have received the following surgical opinions:
1) laminotomy and neuroforaminotomy at both levels;
2) laminectomy at L5/S1 only (ignore L4/L5 for now);
3) two-level laminectomy and fusion at L4-5-S1;
4) do no surgery.

In the literature that one reads about spinal stenosis, it frequently says that the benefits of the surgery last only about 5 years, and then the symptoms return. It never says why the symptoms return, but I suspect it's because the underlying problem -- the flattening of the discs -- goes on unabated. So, the conditions that allowed the facet joints to become arthritic and caused the stenosis originally are still there and, over time, the problem simply recurs.

If this is the case, I ask myself, is it worth having the surgery?

Then, too, I think one of my greatest fears -- perhaps an unreasonable fear -- about any of these surgeries is the trauma to the back muscles. The whole concept simply scares me.

I realize that my situation is somewhat different that most others in that my underlying problem is not a herniated disc. However, it appears that the surgical approach to solve my problem uses many of the same components that are used for herniated disc surgeries, and thus the decision-making process must be similar.

I am interested in knowing, from those of you who made the decision, what was it that allowed you to do that? Level of pain? Length of time of disability? Are you just that kind of person who can make a quick decision and stick to it?

I have become mired in this decision. This situation has taken a usually clear-thinker and turned her into a mush-head. The closest I can come to a decision is that I have decided not to make a decision!

 
Old 12-19-2003, 09:53 AM   #13
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Re: Good laminectomy outcomes wanted (really, all experiences)

Standing,
As far as back pain goes, about 8-9 months ago my back pain was very similar to yours, I couldn't sit down for very long and driving cross country for a move was very difficult. Once I could actually get out of the car, trying to get to a somewhat vertical position was very painful. When I got to New Mexico, and saw a DR an MRI was done and he recommended injections. I had one in April of 03 and another one in June of 03. These injections helped with the back pain, but did nothing for the pain down my legs. As I was getting closer to the surgery, the effects of the injections were wearing off and my back pain was getting increasingly worse. My DR here basically said I should have had surgery instead of waiting and getting the injections...he feels they are temporary at best! Right now, my back pain as I remember it before the procedure is much better. Most of the pain I have now is incision pain and the pain from the muscles around that area being manipulated or cut in some cases. I did get a scolding from the nurse yesterday as she feels I'm doing too much, that may be the case...I'll try and tone it down a bit. Sitting is no problem right now, standing is fine and I still walk with a little bit of a limp due to the fact that I need to build up strength in my left leg. Hope that tells you what you needed, if not let me know. Will get through this thing, and do it together...all of us! Take care Buddy!

Greg
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Old 12-19-2003, 10:02 AM   #14
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Re: Good laminectomy outcomes wanted (really, all experiences)

Pippin,

My decision was made due to the fact that I shared some of the same symptoms as you have. My left leg had alot of pain and was getting weak. In order to guard against any permanent nerve damage, my DR and I felt the surgery should be done asap!

As far as conditions re-occuring, this is possible. I'm not sure about the five year period, basically the procedures I had reduced the amount of disc material, which opens the door for additional herniations. To counter this, exercises and physical therapy need to be done to strengthen the muscles in the back to give more stability...that's my next step once I heal from the surgery. Hope I've helped, if not let me know. We are all in this together and here to help each other. Take care!

Greg
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Old 12-19-2003, 07:12 PM   #15
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Re: Good laminectomy outcomes wanted (really, all experiences)

Hi Folks--This thread is beginning to deepen in some of the ways I'd hoped; I hope useful for others as well.

Pippin--As a sometime playwright, I appreciate your setting the stage. At one point, I was thinking of surgery as a separate act from recovery and aftermath. Well, Shakespeare messed around with dramatic forms, so I suppose we can as well.

In any event, I am with you in that long Act II. Indeed, every now and then I try to work back to Act I--with questions like: Do we really have the diagnosis right? Is the hip pain a separate entity? Is it possible that a stretch injury I also have is really causing the back pain? Should i have a discogram also (I've had several MRIS, myelogram, two emgs, selective nerve block)? Are the disks a red herring? Do I even like herring? etc. etc.

In any event, I suppose this can be considered part of Act II as well. As for more specifics, there are many forms and reasons for laminectomy--literally, all it means is that the nerve is decompressed by taking some amount of bone. It is often accompanied by "trimming" the disk too, if there is bulge or herniation, but not necessarily. If the ligament in the area also appears to be impinging too much, that can also come into play. The point is to create the needed space; ideally, enough so that even if the disc does start to further bulge or the arthritic process and the like continue, there will still be enough space to keep the nerve "comfy."

As far as decision-making, I am going by a combination of "pushing the envelope" to see how much room there really is to have a viable life this way, while closely monitoring for long-term patterns of improvement, worsening, or flat-lining. As reported, it's been mostly the last for about a year, which is why I'm envelope pushing as well as trying a few last things in the conservative corner--more weight loss, abdominal work, increasing my walking, and the like. As I've suggested, while I want to be hopeful, my intuition is that I will end up having the surgery--possibly within months. I know it's a big roll of the dice. Would be "easier" if i was like my friend on the floor. But the box I'm in is costing me a great deal, not only in comfort and enjoyment, but in playing a closer to normal role in my family and in doing the work that it's taken me three decades of experience to be able to do. I would go in hoping for success, obviously, but realizing it may not be had. I said in another thread that I didn't believe in the notion that "when you need surgery, you'll know it." Perhaps I do believe in that more than I thought.

In terms of how long lamis can last, there are, of course, so many variables. I've heard some better numbers than what you report. Likewise, for fusions--one study suggested 8-10 years. Again, one never knows where one will be on the curve.


Greg--thanks for the further description. If you could make it across the country, you're sit-time was much better than mine!! Limited as I am to 1-2 hrs/day, I suppose I would make Lewis and Clark look like speed demons. On the other hand, getting up from sitting not a problem (if anything, a relief). And can still walk and stand for quite long periods comfortably. In those ways, I seem to be the opposite of Pippin, whose pattern is the more classic one for stenosis--sitting OK; walking very limited. That was also true of my good friend before his recent laminectomy.

I wonder if Greg's experience suggests something I've wondered--that the relief one may get from an injection can mask further deterioration of one's actual situation. After my recent diagnostic nerve block, I could certainly sit longer than usual comfortably. That was the idea--to see if that was the relevant nerve. But I was fearful that, in so doing, I'd "pay for it" when the block wore off as scheduled in 6 hours or so. That is partly what happened. The following day was certainly worse than usual with leg pain and more trouble with standing, although that seemed to get back to baseline by the following day.

Greg--Is your PT being planned in consultation with your surgeon? I was amazed at how well organized it was for my friend here. He had PT even before he left the hospital, then both a PT and OT who came to his home for a couple of weeks, and then planned PT at a center. All of this seemed to be coordinated. Very impressive!

In any event, take that nurse's advice. Everyone seems to talk about the danger that comes when one starts to feel "semi-normal." Not the time...yet....to pull out the golf clubs!

Standingman

 
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