Sandy sorry to hear about the wasted trip and like you I understand surgeons having to miss but not the receptionist lying to cover up their mistake. If it were me I wouldn't go back to see him unless you are really prepared to have a surgery. I would accept the other surgeons analysis if it is in line with what you know. The day had to be a day from hell with all the traveling and the pain it caused you along with the irritation due to the lack of communication by the office. I hope it doesn't take you too long to recover from all the traveling.
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Hi Mark,
I agree with you, I really don't want to go back but on the flip side, my husband is really kind of pushing for a second opinion and wanting to see what he has to say. I did email the surgeon himself and tell him what happened and showed him copies of the phone calls I made to his office, but telling him that I got none cancelling. So he did apologize but I am still ticked off that the "assistant" tried to play it off that it was somehow my fault.
The ride down was bad enough, then to add that long bumpy cab ride.......I think that I would have done better on the subway......seriously. By the time we got home, all I wanted to do was lay down somewhere and not get back up for awhile. It's been a long time since I took the train into the city, then while I know that the city streets can be full of potholes and stops and starts, getting tossed around the cab right and left really didn't help matters.
Ah well, I haven't decided what I am going to do, about going back or not.......I understand my husbands' position but he's not the one who's back pays for trips like those.
As for the second consult, that went much better......basically, he is suggesting at revision, attempts to remove the overgrowth of the bmp, refusion, although some of the fusion looks like it is there, he thinks that it is more along the lines of bone bridges rather than fusion in between the vertebra......he also thinks that the pars is fractured at L3 but isn't sure because of the bmp overgrowth.....in some images it appears to be, other it doesn't...he is concerned again about the dura, but given the amount of overgrowth, he can't tell for sure how much is adhered......fusion revision and extension would run from at least L3, leaning toward L2 to S1....some of the extensive nerve foraminal compression he doesn't feel like there would be much in the way of improvement, is concerned about the canal but with the whole chronic CES, he wants to open the canal remove the lamina etc...sigh
Sounds scary to me..........so I don't know what I am going to do.Bi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandy, you don't have an easy decision but only you know if you are ready for going through more surgery on your spine. I guess the best way to decide is what will you gain by doing this and if it is worth it to you then go for it. I have decided that I am not willing to have more surgery, despite more disk going bad, unless I am being paralyzed which is why I don't see my surgeon any more. It would be easier for you if the trip into the city was a lot easier for you. What does the surgeon say the revise will do for you? Isn't if to prevent more problems or to improve things for you?
I forgot to mention about the inversion table that you don't have to be totally inversion to benefit from it. In fact all though I can do total inversion I get better result for now by being just 60 degree down.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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Well, the bladder and bowel issues are worsening again, and the sensory and motor loss is increasing.........the reality of it is , is that I have had this second onset of CES since the second surgery added the bmp to the area........but with that, and the increased overgrowth in the areas, and I guess the addition of the normal wear and tear it is causing the symptoms to increase and worsen in some things.
I really don't know what the benefit would be since it has been so long.....other than to stablize those two spondylolysthesis at L3-4 and L5S-1 . The L5-S1 isn't too bad, stage one but the other is stage 3, just over the 73% slip mark. Three years ago is was at the low to mid ( 36% )stage 2 slip (26-50%), so it is progressing.......The L5 is slipping posteriorly and the L3 is slipping anteriorly.. and if he is able to remove some of the bmp overgrowth and open the canal, it might ease some of the compression in the canal but it's a big if........that bmp is not going to make any surgery easy, nor is it going to be without risk..
I seem to recall being in a similiar conundrum back a few years ago, and feeling stuck, darned if I do, darned if I don't.....I am supposed to see the second consult again on February 2nd, when he returns from vacation, so I guess I have time to sort it out.....but still.........it's funny or maybe not, but it was around this time in 2006 when I started to down the road to surgery the first time........here it is 9 years later, two not so great surgeries later and I am in a frighteningly familiar place all over again. Honestly, I didn't bother to ask about the risks of paralysis, given what was said to me at my last consult three years ago...but I suppose that I should. I am just not sure that I want to know the answer definatively, if you understand what I mean.
I have kind of approached these last several years as each day that I am able to remain on my own two feet is a blessing, and not worried about what tomorrow would bring...now, I guess that maybe that wasn't the smartest way to handle it.
My biggest fear is what if I went ahead with anothe surgery, how long before it leads to another couple of levels blowing apart? We all know that the more levels involved, the higher the risk of issues further up and down.....not that there is anymore down to go to, but there is up.........Bi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandi, I remember your consternation following the first surgery and heading into the second surgery. It is a shame you are still stuck with the same concerns today. If it were me I would be looking at another surgery but I would do as much as I could to have the best spinal surgeon in the world do this one [unfortunately we are limited by money, insurance, and how far we can travel]. I feel very fortunate to have found my surgeon as I believe he has kept me from major problems. He told me heading into the 3rd fusion that any additional problems or surgeries would make me totally disabled so he was right. CES isn't anything to mess around with so if you have found the 'right' surgeon I would be looking at a surgery date. Hopefully the 2nd consult will make things clearer for you. Yes I do know what you mean about not wanting to know about paralysis. My wife takes it as a given that it will be my fate at some point but I have avoided it for 15 years now and I don't have any issues indicating they will cause paralysis for me. As you can see, the surgeon's honesty about the possibilities of my spinal problems hasn't cause the paralysis he warned us about. You may find a miracle worker that can do wonders with a revision surgery that makes you wonder why you didn't act sooner. One other issue you bring up is how surgery causes nearby disk to go bad. I haven't found that to be the case for me but my degenerative disease has caused disk in other sections of my spine to go bad. My surgeon left a bad disk in my lumbar spine [it only accounted for 10% of my pain] because he was concerned about doing a fusion of so many levels. I still have that disk and only have minimal pain with it despite it being 20 years since my lumbar fusion. I believe I haven't faced disk going bad at nearby levels due to my surgeon's skill at aligning my spine when putting in my rods and screws. Looking at my xrays my spine looks like it has ideal curvature at each fusion site.
Well you know how easy it is to go round and round about additional surgeries but clearly you have enough issues to seriously finding a surgeon to do your new revision. As I said before, only you know if you are willing to go through another surgery or not. Your husband must see enough decline to want to see you go through another surgery but he doesn't have to deal with all you will go through with another spinal surgery. I had decided not to have another surgery after my lumbar fusion; that is until my thoracic spine decided it was shutting down parts of my body IE my entire lower left side. I am glad my days of decision are over and I don't envy you making this decision.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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The way that this surgeon explained it when I asked about how much room is in the canal was " you don't have any wiggle room" and the spondylolysthesis at L3-4 is worsening at a rapid rate.....so
the longer it is left this way, the worse the risk to what little bit of thecal sac is available...I did ask him for the dimensions and he avoided that question completely. Instead he said that the part of the canal that he could visualize was barely open, and that further slippage could have major impacts on neuro deterioration. What I didn't make clear to him was that in the last couple of weeks, I have had several accidents and even more far too close for comfort calls , out of the blue.
He was very clear about the neuro and muscular issues not resolving, his goal would be to stablize the spondy's.......so he would most likely start at L2 and try not to have to fuse below L5, because he says that it is the worst level to try to fuse.....although he is not confident that he would be able to avoid it........it is degenerated as well, and bulging already, coupled with the second spondy, but he would like to avoid it if at all possible.......If not, he may fuse to S2, to give the lumbar spine as much stability as he could. I got the pin test and of course couldn't feel any of it.....and there are obvious muscular and neuro deficits.
If there were a possibility of some improvement or regaining some neuro or muscular recouping, then the surgery might be worth the risks.....in this situation Mark, I just don't see the benefits........I think that is why I am so hesitant as the idea of it.......the risks are huge, but the benefits, the pain, and the likelihood of seeing little in the way of improvement seems almost pointless. I know what I deal with now, and while the numbness is greater, the burning, stinging pain, isn't there anymore......that is bearable, and I have adjusted to not feeling things, and looking to see where my feet are, and coping that way.....
He went into great detail about how other options are not options in my case, and talked about how spine surgeries are typically "elective" meaning that surgery can be done but it is not always structurally or neuropathically necessary that it is a choice to undergo surgery, but then he said, in your case, it is not a choice.........it is the only option.
My girlfriend moved to North Carolina and she wants me to come to visit her and go to Duke University, since they are supposed to have some of the best spine options available......and I am giving it some serious thought. Maybe visiting her for a week and a consult or two with their surgeons might be a good idea......Bi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandi, this surgeon sure put it on the line as it sounds like he was saying surgeon was needed due to things going bad. I wish you didn't have that issue but you know how it is effecting you. I listen to you saying that there isn't much benefit to have the surgery while I look at not feeling the pin test, CES issues, and the mess of your spinal lumbar showing that there is benefit from going through another surgery. On the other hand I know how I feel about any more spinal surgery and understand why you don't want any more surgery. Visiting your gf sounds like a good way to see another spinal surgeon that is well experienced in doing spinal surgery. I do worry about the pin test Sandi as I had no feeling when getting mine which was shortly followed by losing my use of left leg and paralyzing my diaphragm. With no wiggle left in your canal it seems like losing the use of your foot and leg isn't too far away. If you need to see the Doke surgeon to feel good about another surgery go visit that gf. I wish things were much easier for you. I think you and I both ignore the negative things from our spinals and focus on what we can still do now and then. Just don't ignore 'accidents' as losing neuro isn't something to overlook.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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Hi Mark,
I know that you are right, but since my last encounters with spine surgeons and the determination regarding the risks of paralysis, etc, I have adopted the wait and see approach. On one hand, I am really glad that he didn't promise me the moon and stars like my first surgeon, and was quite frank with me.. on the other hand, there is a small part of me that wishes that he had blown some smoke my way.......LOL
I haven't felt my legs for some years now, nor my feet... what little spots of sensation there were are diminished from the last time I got the pin prick test...... the bladder and bowel issues are increasing.
I have learned to cope with an awful lot over the last 9 years.......as have all of us with ongoing spine issues, and adjusted or found ways to work around those things.
I guess the bottom line is that the whole idea of another surgery, multiple levels scares the pants off me.......far more than the paralysis does.
I am giving some thought to going to see my best friend in N.C. and possibly visiting Duke to see what they have to say. They do have an extensive spinal cord injury program so maybe it is worth the trip.....guess I will find out if I decide to go.
That first surgery was an absolute nightmare, from start to finish, and now the idea of facing that again, and it being far more riskier than it was, is what has my head spinning......that, and what to do about my family and how all of this is going to impact them.. Even though my kids ( two are grown now, two aren't and are at ages that rely heavily on my husband and I for their activities, and transportation.
SandiBi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandi, you have said all the issues that many of us have had to go through when deciding on surgery. It is wonder that anyone goes through spinal surgery any more but sometimes it is worth it. I think back to when I first dealt with this and going through three spinal surgeries but also have to think about the 15 more years I got to coach football and teach teenagers. If I had any sense I would have stopped after the second surgery and been disabled then but I wasn't willing to give up at that stage. I already knew about my thoracic spine at the time of my lumbar spine surgery but my surgeon and I decided the Lumbar was the bigger issue at the time. I got three years until the thoracic had to be done [that or live with paralyzed diaphragm and losing the use of left leg] and got another four years after that. I sometimes wonder if the extra years of coaching and teaching were worth it and if I knew I would be in better health now if I stopped after the Lumbar surgery I would have stopped then. So what is the best decision, even after going through it I can't say. I know what you are going through and there is no easy answer other than to think of your kids and husband and what condition you will be in in another 10 years.
At least you have some time to decide, I hope it gives you enough to feel good about your decision.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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Mark,
Again, everything you have said is true.... we all have to weigh the risks and the options , and come to some conclusion that takes all of those things into account Complicating matters is that my MIL is almost 81 years old and for the last three months, has been in and out of the hospital........we are worried sick about her, and her ongoing medical issues, and what may or may not occur over the coming months. It admittedly is also a convienent excuse to delay any decision making on my part, if I am honest.
I know that I have a couple of bulges in the lower thoracic area, and those concern me as well.....obviously, I am not sure what I am going to do.....perhaps wait for another consult or three and then maybe I will find some clarity with what I should do......but most likely not. LOL
.Bi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandy, wouldn't it be nice if we could make surgical decision without other life issues intruding? It is a wonder any of us would pick surgery. I am sorry to hear your MIL is doing so poorly. We are getting to the age where the people around get sick or die on a regular basis. My cousin just died, fortunately she died quietly in bed but you still feel bad since she was just 59 and enjoying having a granddaughter in her life. I am thankful my mom is still doing okay but just two years ago I would have said she was doing great. She is now dealing with lumbar issues and Parkinson's so she is learning to handle each day as it comes as we have been doing for so long. Penny' dad died this past Fall and her mother is healthy right now so we don't have much concern on that side right now.
When the time comes to have another surgery you will know it and the decision will be much easier than it is right now. It sure sounds like you are content with just the holding pattern you are in right now. I know I am thankful for as long as I can stay in my holding pattern right now. Every now and then I get frustrated because I would like to do better but I just have to focus on the good days I do have and minimize the bad days.
Did you get hit by any major snowfall? I know most of the heavier snow missed NYC and hit further up the coast. Try to stay warm enough and avoid getting out on the slick streets any more than you have to do. Hey I just remembered you had a ramp put in, did all the problems get worked out and how is it holding up for you?1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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Hi Mark,
This time it is her gallbladder from what they can figure out. She was in the hospital last month from the week before Christmas right up to Christmas, they were talking about open heart surgery to replace a valve, and to bypass a couple of major blood vessels on the left side of her heart......then two and a half weeks later or so, she is back for her gall bladder. They are treating her with antibiotics, and hoping to avoid having to do surgery. The month before that it was Chron's disease/ibs........so it is one thing after the other.
I am not sure content is the right word, but resolved. I explained before, after my last surgery consult didn't turn out so well, I decided to take each day as it came and as long as I could stay on my feet for another day, then I would be grateful for each day that I did. Guess it was my own version of a holding pattern. It wasn't until things flared again this fall that I became a bit concerned, when it didn't subside and then things started worsening little by little. It's kind of hard to explain but so much of my lower half has been numb so long now, and the bladder and bowel issues never resolved, that it makes it hard to determine when things are worsening other than for the back pain.....the electric nerve pain has died off thankfully, but the mechanical pain has increased..It is both a blessing and a curse, in that it makes it difficult to determine where things really are...
We thankfully only got about 8 inches, which was far better than the 18-24+ that they were originally predicting.......the storm moved about 50 miles more out to sea than it was supposed to, which was just enough to change our area's snowfall.....
My sons were thrilled they got two days off school anyway, but they really could have gone to school on Wednesday with little to no issues with busing.
What about you? How did you make out?Bi-lat Nerve Damage, Post L4-5 PLIF/TLIF
Revision L4-5 PLIF for broken and bent screws 8/07-failed fusion,collapse of L4 on 5 vertebrae
tethered cord,CES Post original fusion
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Sandi,, your MIL has really been going through the wringer lately. I hope she can make it through the surgeries and then get back on her feet. You said it right about it is hard to determine when things are getting worse. We get so use to our situation that it becomes the new normal, its not normal, and when it changes it is hard for us to explain what is exactly worse. We have had a mild Winter so far with little snow and temps that haven't been too cold; of course the Winter still has some time to hit us. We have missed the big snow storms each time as it stayed North of us or East of us each time.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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We get snow now and again, but didn't this time. No kids to worry me to death about not going to school and the great-grand's are all too young to worry over it.
Sandi, I feel for all you have facing you. Try not to worry it too much. I found out many years ago that surgery wasn't an option for me. the neuro-surgeon worked with me about 2 years and nothing seemed to help, just got worse. So, he sent me to a pain management Dr. He has been treeting me for about 10 or more years. I have COPD and now I spend much time with my Pulmonary Dr. The pain meds. are interfering with my meds for COPD. One thing right after another these days.
Well, I am thankful I don't have to face the problems you have right not. I also feel for Mark. My daughter is a physical therapist and I'm gonna ask her about your new toy, Mark. Sometimes it feels like it would feel so go to stretch the muscles , but I'm afraid I would do more harm than good. Some of my other issues is getting worse and I am so bent I can hardly walk. Oh well, no hope for the wicked!
You 2 get to feeling better real soon. Mark, I hope Penny is getting some relief from your device. Gotta look that up and see what it looks like. Take care and get some rest.
my love, Julia sLast edited by Jo6; 01-30-2015, 02:53 PM.Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
'cause you are the wind beneath my wings
for my brother Ben
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Hi Julia, I have gotten more out of the inversion table than Penny has as she isn't very good about following through on different treatments. Her back is much better but she needs to start strengthening up her core muscles or she will be back in bad shape again. Remember with the table you don't have to be inverted to get the stretch. I have tried inverted twice but I get much better results taking a step at a time. I can feel the stretch up to my T3 now so it is still moving up my spine and helping out. I still have bouts of severe pain but it feels so good not to feel so tight all the time. PS this week I can feel the relief up through my C7 so it will be time to go totally inverted next week.
Our older granddaughter got a Curious George hand puppet so I have built her a puppet playhouse for when she comes over. We get a kick out of the shows she does and the stories she comes up with. We went over this past evening to see the kids and the littlest girl wanted to wear her ICE costume just like her bigger sister had one. We came walking up the sidewalk and there was the littlest one in the window looking out for us to get there. Penny and I had been out to eat so neither one of us were able to stay for very long this time but it was good to see them as we haven't been to their house for a while. It seems like they have been over here every time the past few months. I think it helps Megan not to get the girls ready to go out so when we leave they are settled into their bed clothes.
Sandi and Julia have a good week and I will check back in to see to checks in.1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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