Back Surgery Nightmare Please Help Me

  • Thread starter Thread starter kenbird1
  • Start date Start date
K

kenbird1

Guest
My name is Ken, I am thirty three, I have six children the oldest seven, yes all mine and my wife's. I own and operate a residential and commercial roofing company in Grand RapiRAB, MI. Here is my story... I have had two failed lurabar fusion attempts, L5/S1, the first was the Axial Lif, this failed and a facet screw broke on one side, I was in horrible pain. The surgeon went back in and put in two lag screws with an interconnecting rod and reattempted the fusion. The first surgery was 10/07 the second 11/08 and I am still not fixed and still in a tremendous amount of pain. I take Percocet 10/325 4 times a day and Oxycontin 20mg 3 times per day, and I still have intolerable back pain. I need some advice from someone who knows more or maybe has been through this. I have appointments at Mayo and U of M in the works but they could be months off, please help...
 
I'd just like to chime in that most spine surgeons really do want to help their patients. They aren't out to make us worse or put us on disability. They put their patients interests before their desire to make financial gain.

It's easy to say they make tons of money and they aren't the ones who live with this pain, but I think we're all very fortunate there are people out there willing to become doctors and help people like us. While they make salaries that are higher than most of ours, they also give up an awful lot - most work 80+ hours per week and have gone to school for many, many years and come away with an incredible amount of debt. They also have to pay a lot of money for malpractice insurance and have high overhead costs to pay.

It's unfortunate that there are cases like many of ours where we actually come away worse after surgery than we were before. However, the spine surgeons wouldn't do the surgery if they didn't think ahead of time that our chances of getting better outweighed our chances of getting worse. Undesireable surgical results unfortunately happen sometimes, and doing our homework before surgery is part of our responsibility.

Most people who have spine surgeries get better - not like they were before they had problems, but better than they were before surgery. The people who hang around on this board tend to be people who didn't get better or who have continuing problems. Those who got fixed are out living their lives.

In conclusion, I'd like to thank all the spine surgeons and other medical professionals out there who are willing to give up so much of their own lives to help people like us. We really do appreciate all you do for us!
 
:confused: Sorry to hear about your situation Ken. From the get go, these painful fusion surgeries don't work. Read the threaRAB onboard here and you'll know what I'm talking about. Yes I did all the options of injections, pain killers, pt and they don't work either. When I finally agreed to surgery provided it wasn't major fusion surgery, guess what, the Orthopaedic Surgeon does it anyway and I am worse off then before, because of a impinging nerve from a bone or hardware. 17 months forward, I am still in pain, on painkillers and pt three times a week which doesn't help. I do get some relief from the painkillers otherwise I couldn't function or continue to live like this in alot of pain. I guess the heavy physical roofing working that you do caused this problem. You're kind of young to be dealing with this. It's to bad you went with the fusion instead of the less invasive Micro Discectomy with a quicker recovery. Hang in there Ken. My prayers are with you and your large family.

Leticia
:angel:
 
My spinal fusion was done @ the Cleveland Clinic and I'm yet another case of Failed Back Surgery Syndrome. :(....janiee
 
You need to get to one of the best spine surgeons out there. I live in Minnesota, and I can tell you that Mayo's neurosurgeons are not the best there are out there for spine surgeries (am I bad or what for saying that?). Lots of other departments at Mayo are world class, but not this one.

Cleveland Clinic is well known for their spinal surgeries, so you're probably best to go there. Make sure you go to a surgeon who has been performing spine surgeries for at least 10-20 years as your case is now a bit more complicated.

I'm really sorry to hear about you bad luck with your spine surgeries. If it makes you feel any better, you're in good company here. I've had 4 spine surgeries now and still not fixed. However, I do wish you the best with finding the right surgeon who is able to give you back some quality of life, and if you have any questions or just want to vent, this is the place for that!
 
One more thing - if you haven't already applied for SSDI, now would be a good time to do that. To qualify, you just need to be unable to work for a minimum of 12 months - it doesn't mean you will be permanently disabled.

The process can take anywhere from 2 months - 5 years to get SSDI, and your family will need financial protection under your circumstances.

When I first applied, I thought it was ridiculous - I was always healthy and I was just going to have back surgery and get back to work. That hasn't happened yet for me, and I am now realizing that I may not be able to go back to work. This was a really hard realization to come to as I've always been a very hard worker.
 
Hi Ken,
My name is Mike, and I live and work in Japan. I'm older than you (77) and like you am suffering from a failed luraber fusion. Low back pain aplenty; so much so that I cannot stand up straight and walk. Here's one for you. Both my legs from just above the knees down to the tip of my toes are about 75% nurab. I've got an appointment at a university pain clinic tomorrow at 10am. I don't expect any miracles, but I'll go anyway. So OK, here's what I am doing for myself to get a little relief:
A hot bath in a bathtub. I place a board across the front of the tub there-by raising my legs from about mid-thigh to my feet out of the water. Right, I sit in the hot water that is situated from a little below my arm pits down to the upper portion of my thighs. I like the water to be hot, not just warm. You do the same. After the bath (20 minutes) I massage my back with one of those massage belts they sell for losing weight. The vibration is for the massage, anything else is nonsense.
There's more, but I don't want to confuse you. I do manage to get some restful sleep by sleeping in a reclining chair. I don't use the chairs ottoman. I made one that raises my legs higher (parallel to the floor). If you want to know more, contact me. Trust me on the bath and massage advice. Even a little relief is better than none. Mike
 
Ken, It's me Mike,and I just read your latest post. How right you are. I spent the day at the hospital's pain clinic. Phooey, no help at all. Ken, what I am about to say I beg of you to not think I'm crazy and grabbing at straws.I've been having a go with self hypnosis for over a week now. And I swear to you that I'm experiencing some relief. At first I thought it was just wishful thinking, but I walk a little straighter, and some of the pain has diminished. I know that I cannot cure myself what with all the hardware they've implanted, but auto suggest to myself that the pain is tolerable to the point where I will become comfortable is my ultimate goal.

My wife already has commented that my disposition has improved and I'm not as "crabby" as I was. Of course! I don't hurt as bad as I did. Check out what I'm telling you.

Amen! Mike
 
I'm listening and willing to give anything a try at this point so please let me know some more details and when or what it is.
 
Ken:

Push for the U of M and Mayo appointments. Keep calling regularly to see if there have been any changes or any cancellations so you can get in sooner. I know U of M is great but the waiting times to get in to see someone can be crazy (my dad lives in Ann Arbor and had his hip replaced there last year); Perhaps for a full review and consultation. I had to change doctors this year and I gathered all my operative reports from the hospitals and all test results and ended up with a great new physician who looks at something from the "big picture" as opposed to the prior which seemed to look at jus the problem at hand and not the whole spine and body.

Maybe even check out the Cleveland Clinic (if you'd be willing to go to MN for Mayo I'm guessing the Cleveland Clinic might be a reasonable as well and they have a great reputation).
 
Good Afternoon Ken,
I've just read your reply, and I promise to give you a workable answer in two to three days.

Be cool, and do the bathing thing I wrote about. Anything, and I mean ANYTHING that will make life worth living should be given very serious consideration. Mike
 
Thank you for your responses thus far, it is amazing how many people there are out there with back pain. I think that back surgery is big business in several different aspects, you have those who make money performing surgeries that have little or no chance of working, and for those cases like me they get to do it more than once. Then you have the pain clinics who passify these patients who are now in more pain. This is a viscious cycle that continues until I don't know what at this point. I am lucky enough to still be working, plus I don't think SSDL will replace my income which is vital for my survival at this point, I have nuraber six on the way. Being on these narcotic painkillers has made me feel like I am no longer myself and I need to get off of them, but I stuck in this insanity of I want off them but then again I can't be without them. I want the pain relief but I don't want to feel like I'm screwed up all the time. It affects my will and I hate it. I want to get to the bottom of the problem and be permanently off these painkillers and I want my pain and back fixed permanently. In the meantime I would like to raise awareness so other people do not make the same mistakes that we have. Back surgery should not be allowed until the patient has seen three different surgeons and has exhausted off the alteratives.
 
Hello all, sorry you are still in pain with or without fusions. Back problems are very confusing. How did some of you know when your fusion did not work. I am post op 5 weeks from 360 fusion and spondy stage 1 and my pain level is at maybe between 3-5. Do you still have the same pain you started with? My legs were bothering me the most and they still are. I know I have a long way to go for full recovery but I still wondered how you knew the surgery did not work. I don't think I had much choice because my legs were that bad, so of course I went for it. Hope you all get better or at least get relief. Linda
 
Ken:


Please know that for many people spine surgery is the only viable solution. I've had 3 lurabar fusions and 2 cervical spine surgeries and I don't regret any of them nor do I consider them a mistake.

In addition, I have an amazing Pain Mgmt practice and a great doctor in that practice. Their goal is to make each person as functional as they can and they work in conjunction with my surgeon and my primary physician.

I have lurabar spondylolisthesis where one vertebrae moves forward or backward over the vertebrae below. This can not be fixed by PT, chiropractic care, injections, etc.

I just went through one of the toughest spinal surgeries I've ever had. A posterio-lateral revision and fusion (L3 had moved forward over L4). I have a 6 inch scar down my back vertically and a 4 inch horizontal incision on my side at waist level. Surgery was 11 days ago and I came home Tuesday after a week in the hospital. The pain is fierce, but the meRAB help.


I can already say I'd do it again. I sense the change already. They removed my old L4-S1 hardware, put in new hardware at L3-L4 and extended hardware to S1.

If I need to remain on some form of narcotics permanently I'm okay with that. There are some that work differently and thus don't cause sedation or euphoria effects. As my body builRAB tolerance I can increase the dosage or try new medications as they become available. Via these meRAB I was able to work and keep my life moving at a good pace until last May when I had to go out on disability. I am blessed that I dont have dependence tendencies or issues.

For me it's all quality of life so if I get 25 % improvement I'll be happy.


I agree that every patient neeRAB to do research, get multiple opinions from both Neurosurgeons and Orthopedic Spine Surgeons, and be his/her own advocate. When surgery is an option it's important not to aim solely for the most minimally invasive surgery, but for the procedure that will do the most to fix the problem even if it's an open procedure. And of course surgery is not always the best option and may never be an option for some patients.

I'm lucky that my employer provided both STD (short term disability) and LTD (long term disability). STD was at no cost to the employee, but upon hire each employee had the option of which LTD plan to choose or to waive coverage (which no one should ever do). I made sure to "buy-up" to the richest option of LTD that provided 60% of my earnings tax fee. And my LTD insurance company will mandate I apply for SSDI once I am out of work for a year.

I also purchased an individual disability policy through my financial advisor (however my low back is excluded as it was pre-ex at the time I applied in 2001).

I'd like to return to work but if I can't I've already accepted that even at the young age of 43 things may change. Hubby and I are very financially conservative so we have no debt aside from the house and we bought way under what we were approved for in terms of mortgage.

So please pursue more consultations for your conditions, advocate for yourself and keep pushing until you find a physician (or physicians) that will aim to improve your quality of life.
 
kenbird1--you are so right!!! It is a travesty to screw up peoples lifes like this. I had a double fusion with
plates,screws and cages. The whole bit.(2006)My back is so screwed up and crooked it isn't even funny! It looks terrible and the PAIN is horrible. I go to a pain specialist 100 miles from where I live and I she has done several epidurals plus radiofrequency, and none of it worked!! I am on Methadone and oxicodone IR for breakthrough pain. And several other things. But it just takes the pain down to a tolerable level. But not pain free-believe me. I have other health issues, so I have to leave my back on the "back burner"so to speak. It would be great to try and get it fixed, but I am afraid of the outcome. So I live on disability and have for a long time. But let us know how you turn out with the Mayo or the Unniversity of Minn. They are both very reputable. Good Luck! babyboomer6
 
First fusion was posterior L5-S1 without hardware in 1987 at age 20 in Wisconsin due to Spondylolisthesis. After, x-rays showed fusion was complete. No problems. I was in a bowling league in 1990 but in 1992 I started having leg symptoms again. Sat out of bowling for a while, symptoms didn't get better, but pain was only at around a 3. Eventually saw a spine surgeon in Chicago who did CT, MRI, and tomogram. All indicated possible pseudarthrosis (where there is not a full fusion). In 1993 the surgeon planned to add hardware to L5-S1 but pedicles at L5 wouldn't take hardware (I have some odd anatomical stuff that shows up occasionally). So he did L4-S1. In the end that was better anyway as he said the L4 was starting to shift forward.

I then did really well. Stayed active, moved to NJ in 94 then back to Chicago in 97 then to AZ in 01 with no problems besides the occasional backache controlled with advil.


Fast forward to April 2009. Sudden severe pain that seemed to be from the hardware and L3 nerve area. I could feel that L3 seemed slightly out of place. MRI and CT were inconclusive due to my bulky stainless steel hardware of plates and screws. One key x-ray showed L3 moved forward (spondylolisthesis again) and within a few months leg symptoms. Now in Phoenix I had to find a new Orthopedic Spine Surgeon. 2 weeks ago I had L3-L4 fused. The surgeon said the area down to S1 still needed stabilization but he could not get screws in at L5 either so hardware is L3-L4-S1.
 
Back
Top