01-16-2004, 05:08 PM
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#61 | Senior Member
Join Date: Dec 2003
Posts: 159
| Re: Good laminectomy outcomes wanted (really, all experiences)
Hi Folks--I've been thinking about Stillwater all day, as you probably also have. First, I hope she's OK and got the help she needed. Second, I hope we'll hear something soon. If we don't, that may also mean that she and they chose to move ahead with surgery. In whatever outcome, power to her!
I got another NS opinion myself today, but I'll save real sharing of it for another time. At core, it makes things that much more confusing for me, since it was anti-surgery and this is a very experienced guy (senior person at major teaching hospital, listed in "Best Doctors," national rep., etc.). I have utmost respect for him, as well as like him very much personally. But my gut tells me it may not be right. So the journey continues....More to follow.
Standingman
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01-16-2004, 05:50 PM
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#62 | Senior Member
Join Date: Jun 2003
Posts: 259
| Re: Good laminectomy outcomes wanted (really, all experiences)
thanks for your responses, and for caring. I didn't go to the er. I should have, and will if it happens again. I did call my internist, and the nurse was supposed to call me back -- and she did, but not until 4:30. By then the dr was gone for the day. I haven't been happy with that dr, and this just reinforced it. During the day, by 10:30, I was able to urinate just a little bit (a 'trickle') off and on, and finally the pressure didn't feel so bad. For now, I'm still a little uncomfortable, but "things are flowing, slowly, little by little". I know I should have gone to the er, and would advise anyone else to do that. If I had decided on a surgeon, I would have called him - but I haven't decided yet for sure. The one I'm leaning toward is at least a 3 hour drive, and if he had wanted to see me, I didn't feel like driving that far. I could have called the orthopedic surgeon I've see for the past 2 - 3 years, but that wouldn't have been good, if I'm not going to go with him. And I'm sure he would have jsut wanted to do surgery and his opinion is that I need a fusion (which he has been pushing for "right away" for a year), while the dr I feel the best about says that a fusion would cause more problems. I don't know what to do.
thank you again. And Standingman, I'm anxious to hear more about your app't today.
StillWater
Last edited by StillWater; 01-16-2004 at 07:35 PM.
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01-17-2004, 09:23 AM
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#63 | Senior Member
Join Date: Dec 2003
Posts: 159
| Re: Good laminectomy outcomes wanted (really, all experiences)
Stillwater--First, great to hear from you. Second, great that things are beginning to "flow" again. Do you also have a urologist whom you've seen? Of course, we here tend to assume it is back-related, but there may be other things that can cause this--bladder stone, etc.. The primary thing is not to ignore it.
For whatever it's worth--no such anecdote is worth much!--I had an episode of urinary retention before my back problems appeared a couple of years ago. At the time, I did go to the ER. They and I assumed it was related to an inguinal hernia for which I had surgery scheduled a few days later. They did consider the possibility of back-causation, but rules it out based on the ER exam. Things came back slowly, had the hernia surgery, and continued to slowly improve. But it took a while, and the assumption remained that it was hernia related.
Since then, I have seen my urologist a number of times, we did a thorough work-up--checking for stones, prostate (not your problem!), etc.. I came to remember that, over the years, even when I had a very slight "strain" in my back, I would sometimes seem to get a bit urinarily (new word, I like it) "slowed" for a day or two. Pain itself, I am told, can cause relevant sphincters to "tighten up," although again, it is a serious symptom for a back patient, especially if accompanied by pain and/or numbness in both legs and any numbness in the "saddle area" (part that would be on the saddle if you were on a horse).
In any event, I have described it to docs many times, and I get pain in that area at times as well, which is of concern.....certainly to me. It continues to merit careful monitoring. If I had an episode that even began to resemble the first one, I would act quickly.
I appreciate the situation you describe with your neurosurgeon. I can't imagine a three-hour drive myself, but is there anyone who, in an emergency or for a consult, who could take you? I have contingency plans, with a foam pad in my back seat, if I needed to get driven somewhere and I couldn't drive/sit myself. And, of course, in a real emergency, that's what ambulances are for. I also learned, during my original episode, how to self-catheterize, and I have the relevant equipment on hand if need be (luckily, I haven't had to). It's obviously unpleasant (harder for men than women for also obvious reasons), but it's also amazing what one can do if need be. My friend who had a lami a few months ago needed to self-cath through about the first two weeks post-op, and he hadn't had urinary problems pre-surgery that he was aware of. But all that did normalize for him afterward.
More on my own recent appmt in later post--I'm still "assimilating" it.
Standingman
Last edited by Standingman1; 01-17-2004 at 11:12 AM.
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01-17-2004, 11:07 AM
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#64 | Senior Member
Join Date: Dec 2003
Posts: 159
| Re: Good laminectomy outcomes wanted (really, all experiences)
A simpler version of my last message: It's important to get a symptom like this assessed, even if it's getting better. And understanding that that can be scary as h--both doing so and not doing so. Stillwater--I really hope there is a doc near enough to you, and about whom you feel good enough, to help. In the immediate term, it doesn't have to be a surgeon. A neurologist, urologist, or internist ought to be able to assess it. Hoping the best for you, and a less stressful day in all ways,
Standingman
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01-17-2004, 11:21 AM
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#65 | Senior Member
Join Date: Jun 2003
Posts: 259
| Re: Good laminectomy outcomes wanted (really, all experiences)
Standingman,
Your first msg was fine. I agree, it does need to be assessed. I haven't seen a urologist since I moved here 3 years ago. I had seen one where I lived before, and after IVPs and cystoscopies, his findings at that time were just chronic inflamation of the bladder.
I have an app't scheduled with my internist for Monday, and I imagine she will refer me to a urologist here. I also expect her to tell me she thinks the current problem is related to my back. I'm sure the urologist will be better equiped to say.
I do need to decide on a surgeon soon, at least to see for further evaluation and so I'll have someone to call, whether or not I decide to have surgery now. The [I]easiest[/I] one to see would be the orthopedic surgeon I've been seeing. He gave me several ESIs in the past 2 years. I'm feeling more like a NS is what I want to go with, though, and while I did see a NS here for a second opinion, I haven't had any other contact with him, and don't really know how experienced he is or how I feel about him. Yes, I could get someone to drive me to the one who is farther away. It's just hard for me to ask. And I don't have family here.
It will all sort itself out in time, however. I won't delay following up on the urinary problems. And, I suspect if I find that it is related to my spine, I'll do something about that rather quickly.
Thanks, for your insight, and for sharing!
StillWater
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01-19-2004, 01:01 PM
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#66 | Member
Join Date: Sep 2003 Location: Naperville, IL
Posts: 67
| Re: Good laminectomy outcomes wanted (really, all experiences)
Stillwater, just following up to check and see how you are doing. Have you been able to see the urologist yet? Just the sound of the word urologist makes me queezy, I've had 6 kidney stones all of which were passed. You mentioned you were having trouble choosing a DR, do you have someone you trust and/or feel comfortable with? Obviously one that would tell us what we NEED to know, not what we WANT to know! Just wanted you to know we were thinking about you, and hope everything is working right and you're feeling ok!
I did have my first PT appointment this afternoon. I'm basically 39 days post-op, and she put me through some exercises that I would have been scared to try on my own, based on DR's orders. Alot of stretching, leg lifts, abdominal crunches, not really sit-ups. Also some balancing and leg strengthening for my weak left leg. The weird part about my left leg is when I'm sitting, leg strength is the same as the right, I just lose it when I'm standing. Maybe I could trade some of my sitting for some of "standingman's" standing!??! The PT also cut my appointments in half based on my current status, now only once a week. She felt the toughest part will be to keep me from over doing it, which will be right! Will begin some twisting stretches next week, hopefully preparing me for the links!! I don't have ANY "holes-in-one" standingman, but I sure love the game.
Everyone, take care and let me know if you have any questions!
Greg
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Greg
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01-19-2004, 07:14 PM
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#67 | Senior Member
Join Date: Jun 2003
Posts: 259
| Re: Good laminectomy outcomes wanted (really, all experiences)
Hi, Greg,
I saw the internist today, and I was surprised, but she didn't send me to a urologist. She did a ua and ordered a culture, and wants to wait to see what they show. I mentioned my concern that the problem was related to spinal stenosis, and she said that it is a concern of hers also, but wants to wait. I also mentioned getting out of breath easily when going up stairs or walking on an incline. She had her nurse give me an EKG, which was normal. She has ordered an Echocardiogram and another test that I didn't recognize the name of. I was thinking of lungs (& history of asthma), not heart. I guess it's good to get these things checked out before surgery, though.
As far as difficulty in choosing surgeon, the one who is the farthest away, is the one I trust most. I'm not sure whether to call his office tomorrow to talk about the off-and-on urinary retention, or to wait on the other tests.
I'm glad to hear you got off to a good start with the PT!
StillWater
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01-19-2004, 09:59 PM
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#68 | Veteran
Join Date: Sep 2003
Posts: 408
| Re: Good laminectomy outcomes wanted (really, all experiences)
Quick response, Stillwater. Given how long it can take to get in to see a surgeon, I don't think I'd wait for the other test results. Or, at the least, I'd call the office, let them know the whole situation, and see whether they think a consult in the near future makes sense. The way they respond will also give you more information about how things work with that office, which may be useful to have as you think about the possibility of surgery.
Standingman
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01-20-2004, 04:29 AM
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#69 | Senior Member
Join Date: Jun 2003
Posts: 259
| Re: Good laminectomy outcomes wanted (really, all experiences)
Good thoughts, Standingman. I will try to call the one away from here today and see if I can talk with the nurse.
Hope you all have a great day!
StillWater
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01-20-2004, 05:39 AM
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#70 | Member
Join Date: Sep 2003 Location: Naperville, IL
Posts: 67
| Re: Good laminectomy outcomes wanted (really, all experiences)
Stillwater,
I agree with Standingman, I wouldn't wait. The fact that the internist "may" think it's linked to the spine problems you are having should send up a red flag, in my most humble opinion! The tests they are running are more than likely tests that you will be required to have with surgery any way.....I had to and I'm 42. If the DR you trust is further away, get there some how, some way. We are thinking of you, take care!
Greg
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Greg
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01-20-2004, 08:23 PM
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#71 | Senior Member
Join Date: Dec 2003
Posts: 159
| Re: Good laminectomy outcomes wanted (really, all experiences)
Hi all--A few different messages....(threads within the thread)...
First, Stillwater, please do keep us updated on how it goes with your seeing the surgeon and things in general. I also have to have some additional med tests this week that are not back related. It's hard enough to balance one set of concerns! No fun at all to have a few!
Greg--Thanks for the first installment of your PT report. Also look forward to continuing descriptions of what you're doing. Interesting what you say about the difference in strength sitting vs. standing. I don't have a good theory for that, and I have one for most things! In any event, if you're going to get into twisting, you must be doing well. (The very thought scares me!) As I know I've relayed on other threads, I'm sure it's the holes-in-one that did me in--golf gods' revenge. I actually had one the year prior to the two in one round, and I had actually only played for three years. So my aces per year ratio was pretty good!
Here's now a little more of the story of that last surgical consult I had. As mentioned, I got an additional opinion from a senior neurosurgeon with an outstanding reputation in all regards. I brought the usual studies--MRIs, CT-myelo, EMGs, etc.. The CT-myelo was most recent--just two months ago--so that was the one of greatest interest to him, which certainly makes sense. In contrast to two other surgeons, a neurologist, and a physiatrist who had seen these films, this surgeon said he saw _nothing_ on the CT myelo that would be a target for surgery. This was entirely bizarre to me, since the other guys all went directly to the same spot, without benefit of seeing the radiologist's report beforehand. I know the films well, and the area is noted by the radiologist's crayon in any event. So I pointed it out and relayed some of what others had described. He simply didn't see it.........
Even though the other docs had different interpretations of what it "meant" as far as recommendations and options, they certainly all saw it. So, as much as I respect this guy, and personally like him, I have to chalk the experience up to something like sunspots! The films haven't changed, and it just doesn't seem possible to me that four other specialists would indpendently see something, in the same place, describe it essentially the same way, and it not be there.
So I was left with the mix of reactions you'd expect: (a) it's nice that this accomplished doc doesn't see a problem on my CT-myelo, (b) I doubt that can possibly be true, (c) my symptoms, etc., certainly remain the same and (d) in terms of figuring out what to do, this didn't help! (As you'd assume, he was certainly not recommending surgery himself.)
So, as I said earlier, the search goes on. At the very least, I need a "reality check" with some of those who viewed the films before whom I will be seeing again. And maybe they can also help explain why such an experienced person would see things differently.
Could I have been in..........the Twilight Zone??? Or, more to the point with x-rays, maybe "only the shadow knows."
Standingman
Last edited by Standingman1; 01-20-2004 at 08:29 PM.
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01-21-2004, 06:12 AM
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#72 | Senior Member (female)
Join Date: Sep 2003 Location: Ohio
Posts: 138
| Re: Good laminectomy outcomes wanted (really, all experiences)
Standing,
Was this new doc at all reluctant to see you since you're someone else's patient? I had a problem switching doc's since he didn't want to be perceived as stealing patients.
On the PT front, I'm still going 3 X week, focusing on stretching & press-ups. My arms were more sore than my back! I've also been using a treadmill & stationary bike. I agree with Greg, when he said he would have been afraid to do these things on his own. I'm experiencing less leg pain as time goes by. Celebrating no pain meds for 2 days. \
Carol
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01-21-2004, 07:09 AM
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#73 | Veteran (female)
Join Date: Jan 2002 Location: Dresden OH
Posts: 386
| Re: Good laminectomy outcomes wanted (really, all experiences)
Standing Man
Call me a dummy, I didn't realize until just now that my sister's surgery in Dec 2002 was a Lamie....It did not help her. She has had PT and after that the neurosurgeon had her try epidurals, neither of which helped. She finally researched and found that some were trying an injection in the periformis muscle, don't know that I spelled that right. That has helped the most, however she still can't walk far. The only injury she can think of that would have contributed to the herination was a fall down the stairs and landed on her rear. She has no problem other than trying to walk. Sitting and standing bending etc, doesn't bother her at all. The neurosurgeon has her on Bextra and Neurotin and these seem to help. She is up to about 5 minutes on the treadmill. She can stand all day or sit all day doesn't bother her just the walking.
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01-21-2004, 10:12 AM
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#74 | Inactive
Join Date: Nov 2003
Posts: 64
| Re: Good laminectomy outcomes wanted (really, all experiences)
[QUOTE=Standingman1]
Even though the other docs had different interpretations of what it "meant" as far as recommendations and options, they certainly all saw it. So, as much as I respect this guy, and personally like him, I have to chalk the experience up to something like sunspots! The films haven't changed, and it just doesn't seem possible to me that four other specialists would indpendently see something, in the same place, describe it essentially the same way, and it not be there.
Could I have been in..........the Twilight Zone???
[/QUOTE]
AHA! You and I shall certainly meet in this Twilight Zone! This is exactly the reaction I had when 5 different surgeons gave 5 different opinions, ranging from the surgical extreme (2 level laminectomy and fusion) to conservative extreme (surgery will not help you; there is nothing wrong with you; get more exercise).
You would think I have a fixation on neurosurgeons, because I am now seeking a SIXTH opinion from a younger surgeon who has training in all the latest and greatest technologies! And then, I have promised myself, I will proceed with SOMETHING. I WILL decide to trust one of these surgeons and get on with it.
Living in limbo-land has worn thin. A recent transforaminal injection gave me about 2 weeks relief -- enough relief for me to realize just how much pain and discomfort I have been experiencing, and just how much of my previous life has been taken away. I played hookey from work one afternoon to go shopping, just because I could walk (you know, a real heel-toe, heel-toe) for the first time in eight months. Enough, already! It is time to move on.
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01-21-2004, 10:35 AM
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#75 | Veteran
Join Date: Sep 2003
Posts: 408
| Re: Good laminectomy outcomes wanted (really, all experiences)
Hi Gang! Thanks for your various responses to my "Twilight Zone" experience, and for some of your additional thoughts and suggestions.
I'm quite confident there was no issue of "patient stealing" here--this guy gives second/third/twelfth (!) opinions all the time, and he doesn't "need the business." Maybe whatever the neurosurgical equivalent of a "bad hair day"......but who knows? Again, it's not so much different recommendations a la Pippin--which I semi-expect--but such a different "look" at the films themselves that took me by surprise. But maybe recommendations and film reading are closer to being intertwined than I'd considered--a worthy thought!
The posts also remind us again of how various we all are in our circumstances. I do a pretty intensive hour on the treadmill almost every day--now!! Most of it is at a 7-8 degree grade, and certainly not power walking--but fast enough to do a good aerobic workout, which for me is about 140 bpm pulse which I maintain for most of the hour. And I usually feel better after. On the off-treadmill days, I do faster walking on the flats, at least an hour, sometimes more. All of this is heel-toe because the disks that control feet/calves not affected for me. But ask me to sit.......well, I'm up to about two hours/day, total. And standing in one spot for too long also takes a toll after awhile--perhaps I'll soon become Movingman.....or, as I like to think of it, The Shark (has to keep swimming, swimming, swimming!).
Pippin--how is this for a Freudian/wishful read?--When I first saw your post, I read "I played _hockey_ for a day"!!! Now THAT would be some improvement!! But your good walking must have felt at least as good as a dead-on slapshot. I entirely relate to living in Limboland. As I said on an earlier thread, it's not so much like being in Purgatory--it's like being in the _waiting room_ of purgatory. Heck, we might already be in hell!
Or not.
Best to all,
Standingman, aka The Shark
Last edited by standingman; 01-21-2004 at 04:08 PM.
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