Degerative Disc Disease - Arthritis Message Board

clementine · 08-25-2002, 03:59 PM

My brother, age 42, is suffering with degerative disc disease. He worked as an electrical lineman for years, and now is on total disability. The discs in his spine are deteriorating. He has been told here in the midwest, that there is nothing anyone can do. My question is, is there nothing to be done? He is in terrible pain after the slightest activity and spends days flat on his back. He is very depressed. He was very active for years. He has a wife and two children who are supportive, but this is not enough. He has been hospitalized for suicidal ideation (thinking about committing suicide). Does anyone know of anywhere he can go for treatment? He is now on methadone for pain management, but I don't think he can go on much longer.

Any replies are welcome. Thank you.

Jay Tor · 08-25-2002, 09:03 PM

This FDA article may be worth discussing with your brother's doctor.

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FDA APPROVES FIRST DEVICE TO UTILIZE GENETICALLY ENGINEERED PROTEIN TO TREAT DEGENERATIVE DISC DISEASE
FDA today approved the InFUSE Bone Graft/LT-CAGE lumbar tapered fusion device to be used in the lower region of the spine as a treatment for degenerative disc disease, a significant cause of back pain that plagues many adults.

The device consists of three components split among two parts: a metallic tapered spinal fusion cage (known as the LT-CAGE lumbar tapered fusion device) and a bone graft substitute (known as the InFUSE Bone Graft). The InFUSE Bone Graft consists of a genetically engineered human protein (rhBMP-2) and a carrier/scaffold for the protein (manufactured from bovine [cow] Type 1 collagen) that are placed inside the fusion cage.

The fusion cage maintains the spacing and temporarily stabilizes the diseased region of the spine, while the InFUSE Bone Graft is used to form bone that would permanently stabilize (fuse) this portion of the spine.

The InFUSE Bone Graft component is used instead of the patient's own bone (autograft bone). Device labeling explicitly states that the components are only to be used as a single system and that the InFUSE Bone Graft should not be used alone for this or other purposes.

FDA based its decision to approve the InFUSE Bone Graft/LT-CAGE lumbar tapered fusion device on the results of a clinical study that demonstrated the use of this device is safe and effective for promoting spinal fusion. The study also showed that the device is as safe and as effective as the same fusion cage component filled with the autograft bone. Both the InFUSE Bone Graft/LT-CAGE device and the same fusion cage component filled with the autograft bone produced fusion in approximately 90% of patients.

The study was performed at multiple sites and consisted of a randomized arm which included 143 patients who were given the InFUSE Bone Graft/LT-CAGE device and 136 patients who were treated with the cage and standard bone graft. Another 134 patients were enrolled in a non-randomized study arm and also received the new device. The primary study endpoint was the rate of spinal fusion at 24 months.

The InFUSE Bone Graft/LT-CAGE lumbar tapered fusion device should not be used if patients are pregnant or are suspected to be pregnant since potential adverse effects of the genetically engineered human protein (rhBMP-2) on a developing fetus are currently not well understood.

The other risks associated with the use of the device are those normally associated with spinal surgery, which were not seen in greater numbers than expected in the clinical trial, and the potential for exuberant bone formation. The manufacturer of the device, Medtronic Sofamor Danek, of Memphis, Tenn., will monitor for any long-term immunological or other side effects that may be associated with the use of the device.

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Here's the link to the article and contact information:
[url="http://www.fda.gov/bbs/topics/ANSWERS/2002/ANS01155.html"]http://www.fda.gov/bbs/topics/ANSWERS/2002/ANS01155.html[/url]

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Clinical trial information on degenerative disk disease:
[url="http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=0153F669222515B0 A683E312F5B558C4?term=degenerative+disk+ disease&submit=Search"]http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=0153F669222515B0 A683E312F5B558C4?term=degenerative+disk+ disease&submit=Search[/url]

NIH Spinal Diseases page:
[url="http://www.nlm.nih.gov/medlineplus/spinaldiseases.html"]http://www.nlm.nih.gov/medlineplus/spinaldiseases.html[/url]

clementine · 08-27-2002, 08:14 PM

Thank you I have forwarded these on to my brother. Though...he has been told he is inoperable, we still have hopes that a breakthrough will come.

scottieK · 08-28-2002, 06:58 AM

Hi, sorry to hear of your troubles but I just wanted to give you this web site that has helped me and to tell you of my experience. I had degenerative problems after a whiplash injury to my neck and lumbar spine. I thought at the time the problems were so severe that I couldn't get relief without surgery. I now wish I would have given it more time. I guess I was so of pushed by the insurance, by family all that wanted it over and me back on my feet. I had three fusions. I fell at work and ruined all the doctors work and now am in chronic pain never to be fixed. - the new insurance case said I was injured before so they do not have to fully compensate me- tough luck.
I also know now from experience that once you have surgery you come out with pain- pain that was never there before. You first get told that the surgery will be better after three months. Then they will say no it will heal in 6 months. Then they say REALLy we won't know for sure if it is successful until 2 years after the surgery. And you know what they SHOULD tell you is that you have the chance to heal all by yourself in those two years and the nerve and muscle damage caused by surgery will not be there after the two years either.

I know I sound like a synic (sp.?) but wouldn't you like to be up and around within two years rather than wondering if you will be well in those two years?
I think that your brother should ask all the questions he can to diagnose the condition and then give it a few months and then go over the evidence again. Talk about suicide- I am here to tell you that suicide is a much easier descision during the months after the surgery.
One positive thing he can do for himself is to get himself to a very restricted program like pilates for bad backs and he will at least feel like he is doing something positive. there is nothing worse than sitting there feeling your pain and not moving- it makes it worse. To describe it to a woman is like not being able to wash your face, comb your hair and put some sort of makeup on. You feel dirty, bad and just not able to face the world.
Try your best to get his mind off the back. Do not let him focus. I know it is hard if every movement is painful (that is why good pain physcicians put their patients on the harder pain killers from the beginning- they find that the sooner the patient gets on with their life the sooner they go off the pain killers and get well).

take care and lots of love and understanding will go a long way. yours,K.

[This message has been edited by moderator2 (edited 09-02-2002).]

clementine · 08-28-2002, 10:32 PM

Scottie: What was the outcome of the degeneration? From all the research I have done, that does not stop...the stuff between the vertebra continues to deteriorate and the discs crumbles...I have begged brother to look at percutaneous verteboplasty and have in fact email Washington University Hospital ie Barnes Hospital in St. Louis Missouri they are very supportive. Their BJC telephone is 800-392-0936 they are there to help. There is a doc there who does the percutaneous verteboplasty have you heard of that? Very interesting...my brother has been disabled for 4 years and back only getting worse at first he had a healthy outlook, then he now sits in his Lazy Boy recliner and looks out the window and has a definite "wild" look in his eye. I very most definitely understand his despondency and am worried that I will recieve a call that he has done away with himself. Thank you very much and any further comments aer appreciated. From Clementine