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Old 01-27-2006, 06:44 AM   #1
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Degenerative disk -- surgeon can't help me

Hello all, I am 56 and have been told my degeneration and arthritis is well advanced for my age. I had a diskectomy last year but it didn't help. I have pain in my lower left lumbar spine that shoots down my leg, and now the right side is starting. My orthopedic surgeon said a spinal fusion might help but wanted me to go for a diskogram first. Instead I went to a top spine surgeon at a university hospital, who was confident a spinal fusion would help, so we scheduled it. Then I found out he was out-of-network for my insurance. I then went to another top spine surgeon in the city, who had me get a diskogram. Conclusion: Too much degeneration, they can't do anything. The L5-S1 is so collapsed they couldn't get the needle in. Every one of the discs is degenerated. Surgeon felt a fusion could actually make it worse! He said I'm not a candidate for a disk replacement because the FDA only allows it if the other disks are OK.

I literally cried. I just assumed they would also recommend surgery. I cannot believe they can replace hips, knees, shoulders....but they can't fix my back and I'm only 56? I have to live this way the rest of my life -- and God knows how much worse it will get!?? And how can one spine surgeon be so confident surgery will help, and the other says it could make things worse? I have a notion to get a 4th opinion but even if that doc recommended surgery, I'd probably be too worried that this guy was right.

Any ideas? (I've tried all the typical stuff -- chiro, PT, epidurals, etc. -- wasn't looking forward to more surgery but was sure hoping it would be the miracle cure.) Thanks.

 
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Old 01-27-2006, 07:37 AM   #2
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Re: Degenerative disk -- surgeon can't help me

Hi there,

I am so sorry to hear that you are in so much pain and are going through this to find some answers.

I do recommend that you seek another opinion since I don't understand the comment from the Dr. that "your discs need to be good to operate"?????? This doesn't make any sense at all to me????

The whole purpose for a fusion is to take the bad discs out and then use bone (or the new artificial disc if you are a lucky one) and put that in its' place and then secure with metal plates and screws to keep it in place to fuse together properly.....

If we are allowed to post what city you live in than maybe someone can tell you where they went with great Spine Specialists. I just posted about having my second surgery with a Neurosugeon and then had an appt. with a Spine Institute (these are Neurosurgeons with at least 2 years of spine training and schooling) and he said that my surgery was done wrong! and he wishes I had come there first. Well me too!!!!!

So, first I would see if anyone lives near you and goes to a great place, next I am sure there are stories from people that had collapsed discs like you in that area and have had that fusion and are doing well so I really hope they post...

Please don't give up because there are a lot of "not so great" Dr.s out there and a suggestion with the insurance is to maybe change your insurance to pay an increase each month so you can go to "out of network" and then get your surgery done. THis would save you thousands of dollars.... I did this for my first surgery and that way you are only paying the couple hundred (whatever it is) a month extra to have the surgery covered..... Then after all is said and done, you can change your insurance back. There is nothing illegal about this just in case you were wondering.... THe insurance company only cares about getting it's "extra" money.......

There are a lot of caring supportive people on this website who can offer advice and keep going until you find answers.

Are you able to have a Dr. at least give you pain medicine, muscle relaxers, anti-deppresants, etc. to help with your pain in the meantime???? I would also recommend seeing a Pain Clinic to help you while you are seeking other care so you don't have to suffer.

Again, welcome to these boards and I will pray for you to be led to the right place and to also find a compassionate Dr. to help with your pain.

Hugs and blessings,
Ingy

 
Old 01-27-2006, 07:46 AM   #3
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Re: Degenerative disk -- surgeon can't help me

Avalon,

Please, please do not give up after seeing only 2 spine specialists. The first one is said you could be helped and it is a shame they were not in your insurance network. If you've read the boards long, you know that I saw 10 before settling on the one who has saved my life.

I'm just a bit older than you and did not have back problems until I was in my 50th year. Since then 8 spine surgeries and I have 10 levels of my spine fused. After my first 3 level fusion was cured, and the hardware removed I had a second 3 levels fused, then I was in a wreck. The first fusion which was done prior to BMP being approved by the FDA broke. In the coming months it literally crumbled and crumbling vertebrae got into the spinal canal and had to be cleaned up and the third 3 level fusion done. Thirteen months ago I had the 10 level fusion, with the spine specialist having to cut apart the other fusions and realign the entired area.

Dear, some said it couldn't be done but there are different levels of expertise in every area of speciality just as there are different personalities and different insurance companies. Fusion may or may not be the only answer for your problem, and I am glad you checked out the ADR's. I too held out for the ADR this last time as FDA had finally approved it to be used in conjunction with having fused levels. Previously it could not be used if you had any fused areas, but now it can. I believe it is Europe where they are doing multi levels of ADRs and there may even be some clinical trials here with that.

That said, have you considered traveling to one of the areas where multi-level clinical trials are still going on? There are also clinical trials of yet another kind of ADR. I have participated in clinical trials of medications, as years ago only men were tested, and that is the reason that women had even more problems with meds. Now, we can participate, so that they know the right dosing for our metabolisms andn smaller stature. What I can tell you is that the care I received when I participated was absolutely excellent, and I would not have any hesitation in participating in a clinical trial on an ADR if the initial visit and exams were as thorough as when I was in the med study. That way, your insurance would not be the deciding factor.

Second, even though you asked about the ADR, what about Dynesys flexible fusion? If you have read about that, it might work better for you than the fixed fusion. As for as you being too bad, I don't see that stopping your fusion. I was diagnosed with osteoporsis in my mid 30's, being told my bones were 80 already. I'm about to turn 60, and yet even with crumbling fusion after the wreck, a spine specialist did manage to fuse 10 levels just before my 59th birthday, even with one of his partners (an excellent doctor) referring me to him as he himself said I had so many things wrong with my back that he would not touch me. I'm so thankful that he knew what went beyond his own expertise as a spine specialist and that he knew others would and could do what he himself knew he could not do. I'm not saying to be stupid and don't do due diligence, because you need high expectations of your spine specialist. But there is more than the insurance company to play a part in our choosing, and maybe it will mean driving a hour or two from home in order to find the right doc, maybe the right doc will be one participating in clinical trials, but don't give up. If the first spine specialist thought fusion would help you be better, perhaps it was beyond the particular capabilities of this second spine specialist. Please seek out other specialists who have done extensive spine fellowships and who work on just the spine.

Best wishes.

 
Old 01-27-2006, 08:26 AM   #4
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Re: Degenerative disk -- surgeon can't help me

Hello Ingy and QC -- I live near Phila. so there are many good surgeons around here. The one who recommended surgery was at Rothman Institute at Jefferson University (their spine guys are out of network for me) and the one who didn't was at Booth/Bartolozzi/Balderston at Univ. of PA. These are both tops in their field and I made sure they were spine specialists with spine fellowships. Neither was a neurosurgeon -- should I check that route?

QC, I get concerned where I hear how many surgeries you had. I sure don't want to get involved in multiple surgeries, not to mention I'm sure my employer wouldn't be too thrilled. It did sound like one fusion might cause a domino effect with the other bad disks -- hence, I'm now hesitant to even try. The doc who did the discogram strongly discouraged "trying" the fusion to see if it would help -- saying it's MAJOR surgery and not something you just "try" -- and then of course, I saw the surgeon right after that and you know what he said.

The surgeon encouraged me to keep up with my line-dance lessons ("stay as active as possible") so I went last night. Mid-way into it, my back and leg were killing me and I had to sit out the rest of the lesson. I'm still hurting today. I take about 2-3 Percocet a day, doesn't do much but takes the edge off a bit.

I sure hate starting the process over again of finding a doc, going for the consult, doing whatever tests he recommends, waiting for his recommendation -- it's all time off from work and keeps my life in upheaval because I feel I can't make plans if surgery could be in my future. But in this case, I will at least get one more opinion. Let me know if you think it should be a neurosurgeon this time. Anyone in the Philly area, references would be appreciated.

 
Old 01-27-2006, 09:02 AM   #5
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Re: Degenerative disk -- surgeon can't help me

I was told similar things as yourself, when I first got x-rays I was 25 and I was told I had the back of a 40 year old. After seeing different back specialists, the only thing that worked for me was reading Healing Back Pain by John E Sarno. There is hope for your back, even though it may seem like the pain will never end.

 
Old 01-27-2006, 10:28 AM   #6
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Re: Degenerative disk -- surgeon can't help me

[QUOTE=Avalon]Hello Ingy and QC -- I live near Phila. so there are many good surgeons around here. The one who recommended surgery was at Rothman Institute at Jefferson University (their spine guys are out of network for me) and the one who didn't was at Booth/Bartolozzi/Balderston at Univ. of PA. These are both tops in their field and I made sure they were spine specialists with spine fellowships. Neither was a neurosurgeon -- should I check that route?

QC, I get concerned where I hear how many surgeries you had. I sure don't want to get involved in multiple surgeries, not to mention I'm sure my employer wouldn't be too thrilled. It did sound like one fusion might cause a domino effect with the other bad disks -- hence, I'm now hesitant to even try. The doc who did the discogram strongly discouraged "trying" the fusion to see if it would help -- saying it's MAJOR surgery and not something you just "try" -- and then of course, I saw the surgeon right after that and you know what he said.

The surgeon encouraged me to keep up with my line-dance lessons ("stay as active as possible") so I went last night. Mid-way into it, my back and leg were killing me and I had to sit out the rest of the lesson. I'm still hurting today. I take about 2-3 Percocet a day, doesn't do much but takes the edge off a bit.

I sure hate starting the process over again of finding a doc, going for the consult, doing whatever tests he recommends, waiting for his recommendation -- it's all time off from work and keeps my life in upheaval because I feel I can't make plans if surgery could be in my future. But in this case, I will at least get one more opinion. Let me know if you think it should be a neurosurgeon this time. Anyone in the Philly area, references would be appreciated.[/QUOTE]


Avalon,

Some surgeons say that fusion will cause more, but the ones I've heard that from were NOT spine specialists. Indeed, I have had to endure a number of surgeries, and I've been temporarily paralyzed by not starting with a spine specialist. However, there is absolutely no indication that any of my fusions were caused by having had the first one. You see, I worked as a civilian with the military for 28 years, and during that time I lugged heavy briefcases through airports, logged many hours out in the field hauling butt with heavy objects, and I cannot tell you how many tracktor trailer loads I've helped with, even though I was considered a desk jockey! HA!!! I also maintain my home and an acre yard and have done every imaginable thing from the top of the roof to replacing insulation in the crawl space, so you might say that I am active. What caused my problems and so many surgeries?

Well, I have a number of major health issues including Fibromyalgia and asthma, arthritis, ulcers, heart and more. Now, when the asthma was totally out of control for 2 years, I lived on 200 mg of predinsone a day in order to breathe. Believe me, that has a lot to do with the damage my bones have, plus I was born with a bone defect. Some of my other meds have also taken a toll. Take the illnesses in general and the many years of hard labor, my almost 60 years of proving I was not going to be the weakling some doctors thought I should be, wrecks and life lived instead of standing on the sidelines and you get a body that collapses now and again.

I would hope no one else would face that many surgeries, and seriously with the many patients I've spoken with at the various doctor's offices, I've not run into anyone else with my history. Of course, none had all the major things wrong with their spine either, but remember, I had birth defects and possibly I am considerably older than you. Don't let my history cause you to recoil from care that may help you. Instead look at it, that in spite of my general health and many years on me, by the grace of a super spine specialist, even after being paralyzed, I am now highly functioning again, I am maintaining my home again, even though I have to have a little more help and do some things differently. I am to be able to fully maintain my acre yard this year as I can return to my ride mower, and most importantly I am able to care for my mother who is quite ill. I do not regret that I had to go through the surgeries, but am thankful that the skill and the technology is out there to allow me to return to a greatly functioning life.

One of the reasons I would encourage someone to seek yet more opinions when 2 collide relates to when I fell and crushed my arm many years ago. The arm crumbled because of steroid injections for tennis elbow from a doctor who did NOT inform me nor did he limit the injections to 3 within a 12 month period. When my body began rejecting the prosthic elbow I went to the doctor he referred me to and was told that I had to learn to live with the pain and the red streaks in the arm. That it was stuck in place and if forced to move, it would just hang limp from the shoulder. I was in my 20's and this was going to be my life????

I sought out 5 more opinions after calling the states AMA to see who would be the best to see for my problem. All 5 disagreed with that doctor, and thank goodness, because I was ready to have the arm amputated as the pain was so great. The prosthesis was removed, several more surgeries over the next 6 years to reroute things and I have 40% use of the arm, thus saving my self from a very early disability retirement on which no one could have lived. I found new ways of doing things and today, few people ever realize that I have only 40% use of the arm. I worked on, used my sick leave sparingly and got full retirement on which I could live plus had 2 years of sick leave to cash in.

I am blessed that an extremely strong mother raised me to not let the birth defects and the road blocks that life throws at us get in my way, but to just find a new route around the road block and keep my goals in site. Had she not, I would have given up and not enjoyed the tremendously wonderful life I've enjoyed.

No one should rush into surgery, by any means. That's why even now I get second opinions, because there are different ways to treat almost every condition. Likewise, I hate it that some get discouraged so easily and won't seek out someone else who is more skilled and could help them, choosing instead to take no action and wind up suffering miserably for years and not enjoying a less painful life because they simply didn't seek out a more skilled doctor. Every one of us must do what suits us best, and certainly I cannot force anyone to seek more opinions, but I can encourage them to seek out more information, more opinions and then make up their mind on the path they take based on a more rounded flow of knowledge. That's all I can do to help.

Last edited by Quietcook; 01-28-2006 at 07:22 AM.

 
Old 01-29-2006, 04:38 PM   #7
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Re: Degenerative disk -- surgeon can't help me

Avalon:
I'm in the same boat with you. I hurt my back at work 6 1/2 years ago and have DDD in L3-L4, L4-L5 and L5-S1. I've had two positive discograms (wouldn't wish these on my worst enemy!), MRI's, CAT scans, Epidural Steroid injections, Physical Therapy, Oral Steroids, a ton of different meds, two levels of IDET (failed) and am now 36 yrs. old and have an implanted morphine pump. I saw a spine specialist that refused to do fusion on my saying that if I saw any relief it would be short lived (approx. 6 months) and had a very good chance of it making matters worse. He actually told me even if I wanted to take the chance he would not do it. My attorney had never heard a doctor say that a patient was so badly damaged that they would refuse to do surgery. The pain I already live in keeps me from being able to work, drive, sit for very long, stand for very long, or walk for very long (varies on all these from 15 - 30 minutes), bend, lift more than 5-10 pounds, etc. I'm sure you know the limitations of severe back pain. There was no way I was going to subject myself to making my pain worse.

I have pain in my low back that travels down to my left buttock and down my left leg. The morphine pump has allowed me to get off the oxycontin I was taking, but I'm still on oral narcotics for pain. It was very frustrating to hear a surgeon tell me there was nothing more that could be done. But at the same time I respected him and appreciated that he would not perform surgery just to get the money. I've dealt with a slew of doctors due to my back and I will just say that some of them have been less than ethical.

I was placed on Permanent Total Disabilty with WC and am awaiting a hearing with Social Security. It sucks that I know there is nothing more that can be done for me and it took a long time to accept my fate. But my Mom always told me when I was growing up that "into each life a little rain must fall" and I've come to terms with it. That's not to say that there aren't days that I don't get REALLY depressed or angry or sad or a combination of emotions. But for the most part I TRY to have a positive outlook.

I'm sorry to hear that you've been told the same thing. A second opinion never hurts anything, so if you aren't pleased with this doctor's recommendation, then I would go see another doctor. The only advice I could give is that if you find a doctor that is willing to do it, make sure you trust him/her, check out their background, talk to some of their patients if you can and go with what you feel is the best thing for you.

I wish you all the luck in the world and hope you find some relief soon! I know there aren't many people that are in this situation, so if there is anything else you want to know about my experience, please don't hesitate to ask.
Take care!
Dee

 
Old 01-29-2006, 06:05 PM   #8
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Re: Degenerative disk -- surgeon can't help me

Wow, Dee, our stories are almost identical (except I'm 20 years older than you!). My pain is also lower left back and shoots down the side/front of my leg to my knee. Also my left foot has been numbish (which actually hurts as well) for a few years. Now my right side is starting with the pain.

The last surgeon pretty much said the same thing as your guy -- wouldn't even attempt it. But that's where I'm so confused -- the previous surgeon was very confident surgery would help and we even scheduled the surgery (til I found out he was out of network and I'd have to pay 4 grand). And this was a top spine surgeon -- not someone I would think would want to do surgery unless it would be successful. How can two top orthopedic surgeons from university hospitals have such different opinions? They are both spine specialists, board-certified, spine fellowships -- all the criteria we look for.

I plan to now see a neurosurgeon for yet another opinion. But even if the neuro recommends surgery, I'm sure I'll be very leery/afraid based on what the last guy said -- that relief would be short-lived or I could even end up in worse shape!

I'm curious about your morphine pump. How does that work, what's involved in it and why do you still need oral pain meds? I think I will have to try more aggressive pain management solutions (instead of just Biofreeze and Percocet) now that it doesn't sound like surgery can miraculously cure me.

I will keep you posted when I get the neuro's opinion. Thank you for your kind message and words of support.

 
Old 01-30-2006, 09:42 PM   #9
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Re: Degenerative disk -- surgeon can't help me

I have the same thing, but I'm 18. The doctor told me the only thing that can really help is to build up core strength, so ask him about exercising

 
Old 01-31-2006, 01:18 PM   #10
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Re: Degenerative disk -- surgeon can't help me

Hi Avalon!
I'm sorry you're getting such conflicting opinions. Hopefully the next dr. will be able to give you the answers you need...

About the morphine pump - it's an implanted device. The resevour is in my belly just under the skin (about an inch or two below my ribs) then there is a cathetar that goes around my side and attaches to a port that goes directly into my spine. It delivers a constant flow of morphine into my spine and my body doesn't have to filter and absorb as much as if I were taking it orally. I go about every 2 months and have it refilled. There are no preservatives in the morphine, so the have to remove whatever is left over (a couple cc's) and refill it with new. There isn't much pain involved, it's a fairly large needle, but actually hurts less than having blood drawn! The pump is about the size of a hockey puck and you can see it under the skin, but it's not too bad. When I have clothes on no one would ever even know it's there.

If you have ANY more questions, please just let me know, I'll be happy to tell you anything I can about it - the surgery, the recovery, etc..

I still take percocet (10/650) 3 or 4 times a day. I was able to get off the oxycontin after they got the dosages increased on the pump, but I still have pain. If I don't do anything, I mean ANYTHING the pump helps with a majority of the pain. But if I get out of bed, then the percocet is necessary to manage the pain as well. I've talked to other people that manage without much oral meds at all with the pump. My discs are so bad though that it's not feasible.

Like I said, let me know if there is anything more I can tell you or if you just need to talk!

Take care,
Dee

 
Old 01-31-2006, 01:20 PM   #11
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Re: Degenerative disk -- surgeon can't help me

Hoyt:
I'm so sorry to hear you are in this same boat - and you're so young! I'm truly sorry you are having to live in such pain at such a young age. I'd love to find some exercises that I could do that wouldn't cause more pain. If your doctor recommends some specific ones to you could you pass them on to me? My dr. says anything I can do that doesn't cause pain is fine, I just haven't found any that don't.

Thanks and good luck to you!
Dee

 
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