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.

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:
http://www.fda.gov/bbs/topics/ANSWERS/2002/ANS01155.html

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

NIH Spinal Diseases page:
http://www.nlm.nih.gov/medlineplus/spinaldiseases.html

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.

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).]

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

Hi clementime and scottie,
I too have DDD in my lumbar and had a complete thoracic spinal fusion due to scoliosis when I was 17 (now 27). I have those times where I lay on my back and don't even try to move along with the thoughts of throwing it all away. There IS nothing that they can do for DDD and it is very hard to comprehend.
I always say, they can clone people but they can't fix my back. I have a very hard time with it and so does my family. I am due to get married next year and wonder if it is fair to my fiancee to deal with this. Also afraid that he will just leave for someone who is "normal".
I don't know what else to say other than the only thing we can do is think positive and hope for miracles!
My thoughts and prayers are with you all!
Christina http://www.healthboards.com/ubb/clown.gif

[This message has been edited by ChristinaD (edited 08-30-2002).]

Jay Tor: Do you know anything about the percutaneous vertebplasty procedure? I have looked around on the web but an unable to find out much about it, or if it helps degenerative disc disease. Thanks from Clementine

Sorry - I'm unfamiliar with this procedure; also unable to locate any information on this procedure. Does it have an alternate name, or do you know the name of the principal investigator/surgeon who developed this procedure?

However, if you're interested in more detailed technical information, suggest you do a search for the following.

Type in at least all of the first sentence in the search:

"Other Treatment (injection, manipulation, etc.): New intradiscal techniques are being investigated to ascertain whether they can obviate the need for a fusion procedure. Intradiscal electrothermal therapy uses a navigable intradiscal catheter to heat the posterior annular wall at the nuclear interface corresponding to the 4-8 o'clock zone. Temperatures produced in the outer annulus (46-48°C) are sufficient for thermal coagulation of nervous tissue. Temperatures within the nucleus and the annulus (65-75°C) are sufficient to result in collagen contraction or shrinkage."

Jay Tor: I misspelled the word, it percutaneous vertebroplasty. Apparemently is it used in the treatment of osteoporosis of the bone Washington Medical Center, a part of Barnes University Hospital in St. Louis has had success with it. A Dr. Louis Gilula has perfected the spinal procedure. I also found out it is used in the healing process of for instance tibial fracture. Some sort of liquid is injected into the bone to promote healing etc.

I did go to the Mayo site and found the disc heat you referenced above and forwarded that on to my brother. Though he is not receptive at this point to any further medical help, since he has had nothing but bad experience, perhaps something will open his eyes. He is in very deep depression and the pain drugs do not help that one bit.

Thanks so much for your help. From Clementine

I would like to suggest you get another opinion. I have DDD along with stenosis. I use a neurosurgeon. Pain will/can put you into depression. I too have had days of just flat in bed with the heating pad.

I ro have degenearative disc diease another name for arthritis they tell me I am 40 years old and have had surgery on my neck i had a fusion because of disc degenerative and herinated I still deal with a lot of pain I see a Rhemuatoligist now I have been on pain medicine since the surgery, I do understand if it is in the middle of your back they cant do much for it My neurosugeon says they can not cut u open in the back because of all the nerves and cant cut you open from the from because of all the organs. I saw a thing on tv the other day about some doctor shooting some kind of cement in the discs for fractures it might work for this kind of thing to, I wish you best of luck THEY say DDD is arthritis make sure they give you good pain medicine I am only 40 and deal with pain daily I am signing up for Social security

Hello I am new here, I have some quesstions. I have degenerative disc diease a vertebral hemangioma in the L3 verterbrate, foraminal stenosis in L1-2 & L2-3.
L3-4 and L4-5 Degenerative disc diease with spinal stenosis. also C6-7 a focal midline disk protrusion, 8 Deterating disc, tore disc and who knows what else. I have been dealing with this for over ten years and each year it would get worse. I have done the pt 3 times did not work, myalogram and fixing to have a discagram and also done the steriod injections.

Is there surgery for this are do I have to be in pain the rest of my life? I thought about just giveing up everything med. etc. untill I can't walk anymore.
Thanks <>< Debbie :wave: