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trulyaries
07-04-2005, 02:56 PM
Hi all -
I had surgery in 2000 and I'm fused from T4 to L4, I'm now 62 years old. I have been having excruciating nerve pain in the back and legs, different than the muscle spasms and general soreness I have had since my surgery. After going through all the conservative treatments, none of which helped and actually made it worse, I am now scheduled for a second fusion surgery in August. I have stenosis at L5, and my doctor is planning to clean out the canal, add more screws and rods to the existing hardware, and fuse me to L5. I have some questions:

:confused: If L3-L5 is the most common area for anyone to have back problems, scoliosis or not (according to my surgeon), and if it is already known that the unfused vertebrae take on more more work after a fusion, why would the surgeons leave only one or two vertebrae unfused? Seems to me there's several people on this site who have had to undergo a second surgery just as I have to.

:confused: Second question, which I asked my surgeon, is why doesn't he fuse to the sacrum. He told me they don't do that unless they absolutely have to because it creates more mobility issues and can cause other problems later, including involvement with the SI joint. He also indicated this would be a more serious anterior/posterior surgery.

Linda, I believe your situation is similar to mine.

Does anyone have any knowledge, experience, input for me? Am I doing the right thing by only having one more vertebrae fused? Could I be facing yet another surgery in five more years? Anyone have any input on what further mobility issues I'm facing with this additional fusion?

I apologize for all the questions, but I truly believe experience is the best teacher. And knowledge is power. And that's all the cliches I'm going to toss out today! ;) Thanks!
TrulyAries

LindaRacine
07-04-2005, 03:31 PM
Hi Truly...

I think we're screwed either way. Here's some research on the topic:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15371700
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11337635&dopt=Abstract

Who is your surgeon?

Regards,
Linda

trulyaries
07-04-2005, 03:54 PM
Ouch ... ouch ... and triple ouch ... you're right - we're screwed.

My doctor is David Montgomery, Beaumont Hospital, Royal Oak, MI. I saw some comments about him in other posts. He has a reputation as one the best in Michigan for spinal surgery. I don't have any doubt about his surgical skills, but his bedside manner leaves a lot to be desired. I call him Dr. Charm School. (Gee, I hope he doesn't read these posts!) He was quite a bit more pleasant this time around, perhaps because we now have this shared history.

Once I've gone through this second surgery, do you think if I turn myself over to an experienced physical therapist to get serious about strengthening all my back and leg muscles that it will help? (I have been a bit inconsistent with exercise since my last surgery.) I'm nearing retirement and I was planning lots of vacations and extended car trips and I'm afraid I won't be able to do a thing ...
Thanks.
TrulyAries

LindaRacine
07-04-2005, 04:29 PM
Hi...

I honestly don't know. The PT that I used to go to believes that, after a long fusion, one should avoid using back muscles at all. She works on strengthening abs, so they can do all of the work. Until last Fall, I was pretty religious about performing my daily exercises, and I have to say that I had a lot less back pain. Unfortunately, I did something to my ribs on the left side and now when I try to lay on the floor, my ribs go into a big, painful spasm.

Best of luck with your surgery. I'll be anxious to hear how you do.

Regards,
Linda

rachael
07-04-2005, 07:33 PM
My surgeon told me that they were going to decide during my surgery how far down to fuse, but the farther down they went, the more correction I would get but the less mobility I would have. They fused to L-3 giving much more mobility in my lower back. I am glad they stopped there because I think I would have more trouble riding bikes and bending over than I already have.

Mary Lou
07-05-2005, 07:31 AM
My daughter is fused from T3-L2 and has a slipped vertebrae below the fusion (I think it is at the L4 or L5 level) which the doctor keeps a very close eye on. I asked him before surgery if he would fuse that area and he said no. He does not like to fuse the Lumbar area, especially very low like that, unless he absolutely has to because you lose too much flexibility. So far, the fusion hasn't caused any problems and the slipped vertebrae has remained unchanged.

Mary Lou

Karen Ocker
07-05-2005, 10:35 AM
I am now 63 having had a fusion to the sacrum in 2002. I have no pain.

Here is an excerpt from a scholarly article for medical professionals written by my surgeon:

"The long fusion to L5 patients don't do very well, so I am very very careful in selecting them. I have probably done five L5 fusions in adults. This patient is still doing very well; a couple of others are still hanging in there, but what happens is, it just shifts all the load to the 5-1 so it doesn't take long for 5-1 to degenerate and become unstable. So in most cases we extend the fusion to the L5-S1 level, to avoid refusion and extension. "

Here is the link with pictures and explanations. One patient there is 70:

http://www.hss.edu/Professionals/Conditions/Scoliosis/Adult-Scoliosis

I personally have no difficulty with mobility issues. After I was thoroughly healed I just figured ways around it. I am still working and living a perfectly normal life.

Karen

trulyaries
07-05-2005, 09:54 PM
Thanks to all for your comments. Of course, now I'm even more confused. It concerns me that it is less than 5 years since my last surgery. Most people seem to have at least gone a lot longer than that before they had further problems. Maybe it's my fault; I have a very demanding job and, with that and with pet projects in my personal life, I sometimes just don't know when to quit! Perhaps I should have pampered myself a little more! :o

I guess I have to think about all of this - don't know how my surgeon would react if I try to tell him what I think he should do! And I'm not sure anyway.... now my head hurts ...
Truly Aries

Leigh
07-07-2005, 08:44 PM
Hi Truly Aries,

This is Leigh, truly a picky, persnickety Virgo, responding to your last post!

You said, "don't know how my surgeon would react if I try to tell him what I think he should do! And I'm not sure anyway..."

Well, find out what you think he should do and go tell him! :)

In my dubiously-humble opinion, we should always work in partnership with health professionals rather than pretending to be unintelligent, helpless dependents.

MDs are imperfect people (as are all of us) who simply spent a lot of money to attend a school, read a lot of books with lots of big words, memorize the words & then take grinding exams. If they pass most of the exams, they go on to "practice" medicine (uh-oh), an endeavor which they soon discover was NOT fully explained in the books!

Joke:

Question: Do you know what they call the student who graduates dead-last in his med school class?

Answer: "Doctor."

(DISCLAIMER: My former boss, a Harvard MD & department chief at NY Hospital-Weill Cornell Medical Center, told me that joke!)

Especially when it comes to my body---it's the only thing in life I can't replace---I like to know exactly what is happening and how to respond appropriately. Ironically, it was the experience of the very questionably- necessary and very poorly-done spinal fusion I had in 1978 that taught me I need to take full responsibility for my well-being, rather than relying on the decisions of someone else, regardless of credentials or intelligence.

When I learned of the problems emerging currently with my spine, I hit the Internet, gathering information. I am working with Dr. Boachie by way of a clinic, so it takes some agility to make sure I have the opportunity to speak with Dr. Boachie himself, and not one of the residents or fellows. The last time I visited the clinic, to get the results of my MRI, CT, and myelogram, they foisted a fellow on me, who was well-educated and friendly (and good-looking, were it not for the wedding ring, I might have thought to date him!), but the young doctor did not bother to bring any of my films or written reports with him! He said I could consider (according to his way of thinking) a discogram (which sounds barbaric) and a lumbar fusion, maybe including my sacrum. I think he should consider about 25 more years of experience before he dares again to offer his opinion!

Key point: I know I have a wide variety of options---hey, I'm a Virgo & an Internet surfer!---and I would cheat myself by not investigating them.

First, I want to have the opportunity to speak with Dr. Boachie, himself, with all the test results in front of us. How unreasonable is that? I was so dispirited after speaking to the young doctor, it has taken me a month to get out of the depression.

I get depressed when I let other people make my adult decisions. I keep forgetting I am an adult (as much as a mere 40-year-old can be) and can make my own decisions (most of my friends are near or past 60!).

LONG STORY SHORT---do your homework and discuss with Dr. Charm School what you have learned and the alternatives you believe it would be worth considering.

Best of luck!

Leigh in NYC
thoraco-lumbar fusion in 1978 by Hugo A. Keim (Columbia-Presbyterian NYC) for top curve of ...42-degrees... and a bottom curve of some number below ...30-degrees... Had no pain or deformity until after the surgery. Unfortunately, condition of spine has deteriorated in the intervening 27 years. Current potential-revision surgeon, the angel & brilliant surgical technician, Dr. Boachie in NYC. I count myself blessed!

d_ann
07-08-2005, 01:52 PM
Thanks for posting your thoughts!

I want to add that I did have a discogram and only found out in the exam room just before the procedure how and why they do this. I assumed :rolleyes: that it would be a similar diagnostic test to others I'd experienced (CT, MRI, etc.). Then the nurse explained to me that they would move my wind pipe out of the way and stick a long needle through my neck to inject fluid into my disc for the purpose of *hopefully* reproducing my pain. And, that I would be sedated, but not unconcious because I would have to tell them whether or not they succeeded. OH, and I wasn't supposed to swallow or make any sudden moves because that could be really bad!

As it turned out, the test did cause a great deal of pain, but not THE pain we were *hoping* for. So why exactly do you think this sounds barbaric???

Have a lovely day! :)

trulyaries
07-08-2005, 09:53 PM
I knew when I made that statement "don't know how my surgeon would react" that I would get some flak. Leigh, trust me, a headstrong "TrulyAries" whose nickname is "mad dog" isn't taking what the doctors say without question. I spend hours researching the internet, reading books, talking to other twisted sisters, and of course monitoring this forum. If it was that easy to decide what should be done with my back there wouldn't be a need for this entire web site. In this thread alone are several opinions, and the research that Linda referred to is full of "on the one hand, on the other hand" research. If the doctors can't agree on the best course of action, how can I? I DID discuss the issue of fusing to the sacrum with my doctor and he gave me his opinion and rationale for the surgery he recommends. I do think your opinion of doctors other than Dr. Boachie is a bit unfair. My Dr. Charm School is an excellent surgeon; he's just not blessed with a good bedside manner.

Thanks for your comments.
TrulyAries

KRIS ATKINSON
07-09-2005, 08:17 AM
I agree that researching is an intelligent thing to do. I have had some people comment that I am spending too much effort researching, and just to trust the surgeons. I have had a few experiences where my questions have avoided potential difficulties in the past, when I have not just accepted what the medical professionals said to do. After childbirth 14 years ago, I was given some pills to take "as usual". I asked what they were for and was told, either for my bowel movements. It turned out that I was having the opposite type of movement from what the medicine was for. I'll let you all figure out what that meant. I also was asked by someone who was going around the hospital getting opinions (I assume they had accurate information on who had the operation they were supposed to inquire about). They wanted to know how my epidural was the day before. I told them I had not had the epidural. My husband said I better make sure we were not billed for the epidural. My sister is also an MD/PHD and was more scared than a regular patient when she went through some disc surgery 20+ years ago. I had told her to just trust the surgeon. She said, "I've been on the other end of the knife before and it can slip!" She did fine with her surgery, but I have to admit, it does make sense to use some caution and do some research. Because of her statement at that time, I refused the epidural out of my own desire for safety, rather than because I was brave enough to endure the contractions, as others thought at the time. Ask questions and then trust God after you decide with God's help. Good luck, Kris