Just dx with "severe degenerative disc disease", need help

Discussion in 'Fibromyalgia Main Forum' started by pepper, Aug 16, 2006.

  1. pepper

    pepper New Member

    I know that I have seen this discussed many times on this board and I tried to do a search but cannot sit at the computer long enough to find out what I need to know. I apologize for taking this short cut.

    I have been in severe pain for a couple of months and thought it was from herxing. 2 weeks ago I figured that it can't be FM and told my GP that he had to do something. He took x-rays and I got the results today.

    The report says "severe degenerative disc disease" between L2 and L3, and "ddd" (not as severe I guess) between L4 and L5.

    My GP wrote out a referral for physio and traction and I will call them tomorrow and hopefully get some answers.

    Meanwhile can anyone here with DDD tell me that there is hope that this pain can be reduced? Naproxen helps but I can't stay on it because I have a bad liver. After almost 14 yrs of severe CFS/FM, I am feeling that this is the last thing I need.

    What else can be done besides physio? I would appreciate any advice that you have. I am really distressed over this.

    Thanks to you all.
    (((HUGS)))Pepper
  2. TXFMmom

    TXFMmom New Member

    Usually degenerative disease involved arthritic changes of the facet joints of the disc, these can be injected, under sedation and x-ray flouroscopy and the pain can be greatly relieved in that manner. It lasts three to six months.
  3. kirschbaum26

    kirschbaum26 New Member

    Dear Pepper:

    Many of us have this terrible disease as well. Here is some info from MEDICINE.NET

    I have also this disease and have so far avoided spinal surgery. I have a good ortho that I trust, and he has advised me to wait until I cannot turn my head, or the pain gets so bad that I am willing to risk the surgery and potential complications. With FMS, it is very hard to predict a good outcome with spinal surgeries.

    What is degenerative disc disease?

    As we age, the water and protein content of the body's cartilage changes. This change results in weaker, more fragile and thin cartilage. Because both the discs and the joints that stack the vertebrae (facet joints) are partly composed of cartilage, these areas are subject to wear and tear over time (degenerative changes). The gradual deterioration of the disc between the vertebrae is referred to as degenerative disc disease.

    Degeneration of the disc is medically referred to as spondylosis. Spondylosis can be noted on x-ray tests or MRI scanning of the spine as a narrowing of the normal "disc space" between the adjacent vertebrae.

    Degeneration of the disc tissue makes the disc more susceptible to herniation. Degeneration of the disc can cause local pain in the affected area. Any level of the spine can be affected by disc degeneration. When disc degeneration affects the spine of the neck, it is referred to as cervical disc disease. When the mid-back is affected, the condition is referred to as thoracic disc disease. Disc degeneration that affects the lumbar spine is referred to as lumbago. Lumbago causes pain localized to the low back and is common in older persons. Degenerative arthritis (osteoarthritis) of the facet joints is also a cause of localized lumbar pain that can be detected with plain x-ray testing. The pain from degenerative disc or joint disease of the spine is usually treated conservatively with intermittent heat, rest, rehabilitative exercises, and medications to relieve pain, muscle spasm, and inflammation.

    Not sure if this helps...

    Good luck.

    Ingrid

    [This Message was Edited on 08/16/2006]
  4. PVLady

    PVLady New Member

    I am sorry you have to deal with this new diagnosis. It looks like you have received excellent info.
    If it were me I would also research diet and supplements that may prevent the condition from getting worse if that is possible.
    There is a famous nutritionist, Gary Null who I saw on TV recently.
    (He has many books and probably a website).
    Anyway, he discussed deg. disc disease and recommended diet and supplements.
    It might be one more thing to consider.
    If you have a lot of pain, find the best spinal doctor.
    My husband also has deg disc dis. in lumbar spine. He also developed stenosis in April and had surgery.
    I can happily report he is currently pain free.
    He has a excellent doctor (they are famous).
    The Dr. group is called Kerlan-Jobe in Culver City, CA.
    They have a excellent website that explains your condition and also the treatments.
    If you just do a web search with their name it will come up.
    My husband had a rare synovial cyst on his spine after surgery. These doctors diagnosed it and gave a steroid injection using a X-ray.
    The next day he was pain free for the first time in months.
    With your condition, just be very careful not to lift anything heavy.
    I am not sure the steroid shot 2ill last forever, but it is so important to have the best doctor you can find. (Not just one that gives you pain pills and sends you home).
    Take care...


  5. pepper

    pepper New Member

    Txfmmom, I will definitely look into the facet joint injections. I have a friend who had it done recently for a problem in her neck. There is no sedation used here for the injections and she had to go elsewhere so I will give her a call and get that info. Thank you for the suggestion.

    Thank you so much, Ingrid. Yes, the information you gave is very helpful. My doctor did mention osteoarthritis but I was in such a state by that time that I forgot all about it. I have seen spondylosis discussed here and never really knew what it was.

    DDD is "treated conservatively with intermittent heat, rest, rehabilitative exercises, and medications to relieve pain, muscle spasm, and inflammation." I will keep all this in mind. Thank you!

    Thanks, pvlady. My doctor told me to take Glucosamine Sulphate but I have been taking it for many months. He suggested I add Chondroitin but to take it 2-3hrs away from the G.S. I will try to find out what Gary Null has to say. I have never heard of him.

    I am so happy that your DH is finally pain free. That is very encouraging. I will look up Kerlan-Jobe in Culver City.

    Thank you all for the information. This has been so helpful!

    (((HUGS)))Pepper
  6. kirschbaum26

    kirschbaum26 New Member

    Dear Pepper:

    I went to Kerlan-Jobe for 3 years way back in 1995-1998. I started out with back problems, with constant sciatic pain. I had mri, ct scans etc., did physical therapy for some time...had some improvement, but walking about 2-4 miles a day. I think I saw Dr. Dillan for my back. MRI showed many herniated and bulging discs, as well as degenerative disc disease, bone spurs, etc. I actually had a date set to have the damaged discs removed and have 2 vertebra fused.

    I got pneumonia and had to postpone, and by then, I really did not want to go through with the surgery. Also, 2nd opinion told me to wait until I could not walk, or turn my head, as I have worse damage in my neck. I had a mylegram and then found out I was allergic to the dye. I then started seeing a Dr. Carden at Centinella in the pain management department, when they were just starting out this clinic. I had lots of new treatments there, as I was a bit of an oddity. I think that I had about 40 epidurals and steroid shots..and some with floroscopy, and even had some nerves frozen. It did help with much of the sciatic pain, and I have not had the burning down my leg that I once did. Just an electrical zap once in a while.

    I then had problems with my achilles' tendons...I had all of these nodules on them and they kept on contracting, not matter how much I streched them. Then finally, I had terrible problem with my right hip. X-ray showed large bone spur was pushing the femur head out of joint.

    I went to their hip guy (Sptizer, I believe), who advised that I had a necrotic (dying) hip and needed a hip replacement right away. FYI, I was 33. I had synovial fluid drained and tested...it was not nectrotic. Spitzer sent me to Dr. Lawerence Dorr, who used to be at Kerlan-Jobe, but went on to USC to establish his own center. Dorr has done thousands of hip replacements all over the world. He immediately told me that I needed a "repositioning" surgery to move the femur head from where it had destroyed the cartilige to new stuff. He said that would "buy" me about 5 years before I would have to have the whole joint replaced. This was also the time I was dx with RA, and started taking prednisone.

    My insurance company forced me to get a 2nd opinion before having the surgery, and I am very glad that I did. The ortho that I went to was Dr. Loddengaard here in the south bay. I had seen him many years before for knee problems. He told me that it would be terrible if I had the surgery that Dr. Dorr suggested...saying that it would speed up the destruction of the joint, and not really help me much. He told me to wait until I could not walk without pain, or that my daily life was impacted. I actually did p/t for about a year and then returned to a very active lifestyle. I played softball about 5 nights a week and was constantly doing sports of some kind. Still have not had to have the joint replaced, but eventually will.

    I think that Kerlan-Jobe is great, but just wanted to warn you, as I think that they are quick to offer surgery.

    Ingrid
  7. bigmama2

    bigmama2 New Member

    I have recently been thru something similar with my neck and was scared to death that i'd need surgery bucause the pain was so bad I couldn't function at all for a few weeks and also I had nerve damage that affected my arm.

    In addition to drugs (anti inflam, pain, and anti spasm) the dr. prescribed physical therapy and traction. I am now totally fine!!!! So definately try the physical therapy and traction. I hope they help you!!

    Oh, by the way If you try narcotic pain killers - many of them cause major constipation so be sure to counter-act that with lots of water, fiber, prunes, etc.
    [This Message was Edited on 08/16/2006]
  8. TXFMmom

    TXFMmom New Member

    The FDA recently approved HIP RESURFACING.

    It has been done in Europe and Asia for years, and successfully.

    Instead of going in and cutting off the head of the femur, and reaming out the inside of the bone, and putting in a new head and then a new socket, they just put a new surface, and a fitted socket which requires far less trauma, is less likely to cause blood clots, infection, necrosis, is done with a small incision instead of the gargantuan one on the leg, and it is believed that the resurfacing can delay hip replacement, AND THE THING PERMITS MUCH, MUCH BETTER RANGE OF MOTION, AND PEOPLE OFTEN CAN WALK THE NEXT DAY WITH LITTLE PAIN, AND CAN BE UP AND ON WITH THEIR LIFE IN A RELATIVELY SHORT PERIOD OF TIME, compared with hip replacement.

    The problem is, that few of the physicians here in the US really know how to do it, as only a few center were involved in the study, and even then, they did not really do as many as I would like to have someone have performed before little old me lets them do it.

    Physicians in Europe, and India and Thailand have done many, many more, and some American insurance companies are even beginning to pay for their insured to go to those hospitals for surgery.

    JUST STICK WITH THE BEST, WITH THE BEST RESULTS, AND BE FASTIDIOUS IN YOUR PLANNING AND INVESTIGATION OF IT.

    I recently read that one of the MAJOR HOSPITAL COMPANIES INVOLVED IN PROVIDING THIS POSH, LESS EXPENSIVE CARE IN THAILAND HAS PURCHASED A HOSPITAL IN PANAMA AND THEY INTEND TO PROVIDE FIRST RATE CARE, AT GREATLY REDUCED COSTS, BY AMERICAN TRAINED PHYSICIANS, WITH ALL RN CARE, ETC. IN THE NEAR FUTURE.
  9. pepper

    pepper New Member

    I still can't sit here long but want you to know that I appreciate all this information and support. You guys are great!

    Ingrid, I cannot believe all the problems you had at such an early age. I guess I am lucky that this didn't really hit me hard until I was an old lady of 58. :)

    I appreciate the info about Kerlan-Jobe. However, I think that I can use a lot of their info when trying to find treatment up here.

    Going to the U.S. is not my first choice since everything is paid for up here in Canada but it is always good to be armed with as much information as possible. I have learned that in dealing with CFS/FM for so many years. I always like to know more about what I am seeing a doctor about than he does. But I am careful not to let him know that!

    Bigmama, I am so glad that the treatment recommended by my GP helped you so much! That is certainly encouraging.

    I am having problems with my arms too and was afraid that it was from my back. P.T. is certainly a better option than surgery if we can avoid it.

    I am going over to a P.T. this afternoon to see if they can see me asap. Getting narcotics in this country is almost impossible so I don't know if that will ever be an option for me. Right now it sounds like a great idea.

    When I was taking anti-inflammatories for 10 days, I was in heaven because they totally eliminated my IBS-D! My bowels were normal for the first time in years. Maybe something that causes constipation would work out well for me.

    Yes, TXfmmom, I am starting my research. I have found what a couple of people have told me is the best spine dr. in the city, especially for low back pain. I will not ask for a referral until I get this confirmed by others in the know.

    I am hoping that surgery will not be necessary for me. But of course we don't always get what we want, do we?

    I saw a program on TV (Dateline maybe?) about people going to countries like India for surgery. It is amazing that it actually works out cheaper! And is still high quality surgery.

    I have never heard of hip resurfacing before. When I think of all the hip replacement surgeries that might not have been necessary - just in my own family! Good info.

    Thanks, Wendy. Yes, I am encouraged by the news that things can be done. I do not feel nearly as desperate as I did when I heard the news yesterday.

    Thank goodness for this board with all the knowledge and experience and the willingness to share it!

    (((HUGS)))Pepper
  10. hob

    hob New Member

    DDD is not fun. I have been dealing with it for several years now and find that acpuncture helps me. It got so bad for my aunt that she had to have surgery (fusion) but the great news is that she is doing awesome now. Just 8 weeks after her surgery she has no pain! Really no pain! Just an idea???
  11. NyroFan

    NyroFan New Member

    Pepper:

    I have it, too. Mine goes from C-2-3 and then further down cervical all the way to lumbar.

    I take pain meds for it.

    Some days I can not lift my head and hold it up because of the pain. Ergo, the pain meds.

    nyrofan
  12. nonni1986

    nonni1986 New Member

    Hi Pepper
    I am sorry to hear of your agony, as a fellow(past) sufferer, i can empathize. I struggled with it for 10 years, and eventually had to give up my business and for the last 2 years was pretty much useless, my days consisted of getting out of bed, to couch, and back again. I couldn't even carry my grandchild.After trying physical therapy, injections, drugs, all the Drs. and I saw 7, told me there was nothing that could be done but surgery.
    I started doing lots of research, and learned about spinal decompression. After months of searching, I found a chiropractor in my area, who did it, and went to see him. Well it has changed my life. I reccomend it to anyone to try, who like me wants to leave surgery as last hope. After the first 6 treatments, I was doubtful that is was doing anything except making me hurt more. Then I started seeing improvement, and by the time I finished treatment, I am now able to bend, and stand straight, even carry that precious grandbaby. I still have pain from my fibro, but, that is a given, but the excruiating pain in my spine is gone.
    I don't know how this would work for you, but it may be something to check out. The success rate is about 85%.
    Hope this info helps.
    Blessings
    Nonni
  13. lilaclover30

    lilaclover30 New Member

    So sorry about all of your pain Pepper. I just looked again at your profile and you are a beautiful lady.

    I can sympathize with you. i have had back problems for years but it didn't stop me - i just rested when it hurt. Now it is different.

    I have FMS, OA, Spinal Stenosis and scoloisis. After my MRI of my back, I learned that i have stenosis in Lumbar 2,, 3, 4, 5 and 6. A neurosurgeon looked at the MRI and said I could have no surgery. It would be an 8 hour surgery and I would have to have a rod inserted.

    He didn't say it but I know he considered my age - 75. He sent me to the Pain Clinic. I first had an Epidural - no help! Then I had Lumbar Nerve Block - that takes 8 insertions of needles. It is just slight sedation and not bad. The only problem - I had it 2 times and nothing.

    Then I had radiofrequency lesioning. That is similar - an extra needle is inserted in each of the 8 sites that burns off the ends of the nerves. Sorry to say, I had it 2 times and nothing.

    i have been dismissed by that Dr. and i am at the end of my wits. Tylenol #3 2 in the AM and sometimes an extra 2.

    Sorry I can not give you any hope from my experiences. But have Faith ---maybe something will appear.

    God bless you and give you hope.

    Gentle Hugs,

    Joan
  14. pepper

    pepper New Member

    I drove around today until I found a physiotherapist who had a break and was willing to treat me! He gave me a thorough work-up and a treatment with ultrasound, a suction cup machine (TENS machine maybe?) and moist heat. I felt so much better when I was finished.

    The pain is by no means gone but it is so much improved I can't believe it. He made it clear that this may not be the entire answer for me but it should help. And that I have to go back 2 or 3 times a week for awhile. I don't care if it gets rid of this pain!

    Hob, I am glad that acupuncture works for you. I know a great acupuncturist but hadn't thought of going that route. I will keep that in mind. Surgery will be the last resort as I am sure it was for your aunt. I am amazed that she is doing so well so soon!

    Nyrofan, it is no wonder you are on pain meds. That sounds awful - all the way from C2 to the lumbar area. Poor you!

    BlueSky, you are another example of the strength of the people on this board who are so strong in the midst of so much suffering. Surgery is not an option for me until I have exhausted all other avenues and I am doing as much research as I can.

    Nonni, thank you so much for the tip. I will put spinal decompression on my list of things to check out. I used to go to an excellent chiropractor but haven't been in awhile because I have been following so many other treatments. I was wondering if skipping my chiro treatments might have brought this on.

    Thank you so much, Joan. I am sorry that nothing seems to be working out for you. All those problems must be so discouraging! I have had back problems too for many years, long before I came down with CFS/FM but I was able to just carry on.

    After CFS/FM I always just put the pain down to FM pain and muddled through as best I could. That all changed in the past couple of months. I could not live with the pain since it was all-consuming. I wish I could take Tylenol 3 but I am allergic to codeine!

    I hope that I have better luck than you have had, dear lady.

    (((HUGS)))Pepper

  15. pepper

    pepper New Member

    Guess what the physiotherapist told me caused my problems between L2 and L3!

    1. All the high impact aerobics I did/taught several times a week in the 80's and

    2. My large chest! He said that heavy-chested women just like pregnant women try to compensate for the weight in front by bending backwards a bit. This causes the disc to form a wedge which is more easily worn down than an even disc.

    I have been reading on this site about breast reduction surgery and mentioned it to my GP awhile ago. Now I have a serious reason for considering it.

    Pepper