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    Old 01-05-2008, 03:06 PM   #1
    Wendy88
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    DDD options?

    hi everyone,
    so i've had DDD forever... Im 33 and I'd say about once a year i totally throw out my back (either slip a disk or tear fibers) that leave me in horrible pain and bed ridden for close to a week and then in pain for a long time after. This just happened on Dec 25th... not ever sure what I did, but I was bed ridden for a week in terrible pain, back spasms etc... and Im still not able to sit or stand without being in a ton of pain.
    During the course of the year, my back will give me smaller issues and may throw out one more time... it totally sucks as you all know...
    I take percs 10/325, usually relafen but it hurts my stomach so im now taking 3-4 advils at a time instead, and I am now trying baclofen for a muscle relaxer. It seems to work ok.
    I'm doing a standing MRI next week as Im in so much pain when I stand for more that like, 5 minutes, or even sit for too long. Ive done regular MRIs in the past.

    My question is (and of course I'll ask my doctor when I see him in 3 weeks) - what other options besides meds, PT etc are there? Like, what kinds of surgery could I look up online or read about on this board and learn about so I can be educated for my next meeting with my doctor? Im terrified of any surgery, especially on my back, but I think I'm realizing Im too young to live like this... this weekend Im still in bed, I've missed work and dont know what Id do without my meds, I think i need to possibly try something else.

    Thanks!!

     
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    Old 01-05-2008, 04:14 PM   #2
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    Re: DDD options?

    also - sometimes i dont feel the percocets work as well as they should... like i need to take about 2 at a time when im as screwed up as I am now after having such a flare up... and even then, i can still feel pain. i could have a bit of a tolerance to them as i also take them for migraines (and they work fine and of course for "regular" back pain as well as when these more severe episodes happen)... and as I said they work fine for that stuff but not for what Im going through now... it's like i get breakthrough pain. I think my doctor was hoping the new muscle relaxer would help.... but i feel like it could be better.

    what are those pain patches people write about? what is the benefit of those? Do any of you put those on and then go into work or do they cloud your head?
    again, just curious as to other things to talk to my neurologist/PM about... he is a really good doctor and very kind/ understanding... and always gives me time to ask anything I want.
    thanks!

     
    Old 01-05-2008, 06:44 PM   #3
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    Re: DDD options?

    [FONT="Comic Sans MS"][COLOR="Red"]Hi Wendy,

    I can relate to your situation. I'm young, 29, and was originally diagnosed with DDD when I was 27. In addition to having DDD, I also have problems w/bulging and herniated discs and permanent sciatic nerve pain/numbness.

    Are you in pain in between your flare ups, or only during them? I have chronic pain but probably more so from the bulging and herniated discs than from DDD. If you're experiencing chronic pain I would recommend discussing a longer lasting (extended release) pain med with a shorter acting pain med for breakthrough pain with your doctor. I take oxycontin 2x's a day and percocet (10/325) for b/t pain. There are lots of extended release pain meds on the market that last up to 12 hours like oxy. I like oxy b/c it controls my pain well and I don't have to take it every 4 hours like I would if I were just taking percocet. I don't have any experience with pain patches but you may want to check on the pain mgmt board, there are a few people there that use them.

    You may also want to switch the meds you currently take for migraines to something else, so when you take percocet for your back, your tolerance level is higher. Have you tried any other meds for migraines? I take topamax for sciatic nerve pain but I know it's also on the market for migraines. One of the side effects of topamax is weight loss, which I have to say is a plus. Just a thought.

    Please let us know what you and your doctor decide to do. Either way, I sincerely wish you the best.

    Take care,
    Scrappin'[/COLOR][/FONT]

     
    Old 01-05-2008, 07:54 PM   #4
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    Re: DDD options?

    hi! thanks for writing me.
    yeah - i have some bulging disks too, numbness/tingling/icy feelings in my left thigh when im in certain positions, sciatica that comes and goes, arthritis etc... it's really fantastic.
    My pain comes and goes during the year (in between flare ups) although not to the level it is now. This situation Im going through now feels like a disk herniation, although i think it's just a tear. However, during the course of the year i think i can get away with the percocets when i have pain... but in this situation i wish i had something longer lasting. I'll probably ask my doctor about the oxy when i see him after my standing MRI. something must be getting compressed due to the pain i feel when im sitting/standing.

    yeah i take topamax already for migraines. It worked great for a while but i think it is starting to not work quite as well, and I dont want to up my dose. So I mostly rely on percs... cause a lot of other typical migraine meds dont work for me. It also did really helped me with the tingling numbness in my leg, which is a bonus. and the Baclofen sometimes can help with migraines my dr. said, so if it does, Im going to go of the topamax for sure.
    Anyhow - I'll take a look at the pain management board. I didnt think of that. thanks!
    Has anyone discussed any surgical options with you? Or that injectable disk material i think they can do now?
    thanks again for writing me back! sorry for such a long response! no one I know has this issue and it can make you feel lonely to be going through all this pain and that it isnt just some ache. and of course, being basically trapped indoors for 2 weeks isn't so hot either.

    wendy

     
    Old 01-05-2008, 09:51 PM   #5
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    Re: DDD options?

    I have two herniated discs L4-L5 and severe arthritis in my lower back. The surgeon said he can't help the arthritis only the nerve pain down the legs but wants me to see another surgeon. A few weeks ago I simply bent over to pick up a pillow and went down on the floor in agony. I couldn't move. Hubby rubbed my back for awhile and I was able to get up on the bed but everytime I moved I thought I would throw up the spasms were so bad. I had pain patches that were prescribed for my wrist (I have rsd) and had him apply one on my back. An hour later I was able to move. The patches are linocaine patches 12 hours on 12 hours off. My mom used them for her osterporosis (which I have also) For me, the patches helped me get through the next week until the pain eased up to the bearable stage.
    My mom has stopped using the patches as she says she has no pain for the first time in 4 years. She takes Glucosamine Hydrochloride and chondroitin pills called MoveFree. It's supposed to be good for the joints.

     
    Old 01-06-2008, 07:07 AM   #6
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    Re: DDD options?

    [QUOTE=Wendy88;3376281]hi everyone,
    so i've had DDD forever... Im 33 and I'd say about once a year i totally throw out my back (either slip a disk or tear fibers) that leave me in horrible pain and bed ridden for close to a week and then in pain for a long time after. This just happened on Dec 25th... not ever sure what I did, but I was bed ridden for a week in terrible pain, back spasms etc... and Im still not able to sit or stand without being in a ton of pain.
    During the course of the year, my back will give me smaller issues and may throw out one more time... it totally sucks as you all know...
    I take percs 10/325, usually relafen but it hurts my stomach so im now taking 3-4 advils at a time instead, and I am now trying baclofen for a muscle relaxer. It seems to work ok.
    I'm doing a standing MRI next week as Im in so much pain when I stand for more that like, 5 minutes, or even sit for too long. Ive done regular MRIs in the past.

    My question is (and of course I'll ask my doctor when I see him in 3 weeks) - what other options besides meds, PT etc are there? Like, what kinds of surgery could I look up online or read about on this board and learn about so I can be educated for my next meeting with my doctor? Im terrified of any surgery, especially on my back, but I think I'm realizing Im too young to live like this... this weekend Im still in bed, I've missed work and dont know what Id do without my meds, I think i need to possibly try something else.

    Thanks!![/QUOTE]



    Hi Wendy, sorry you are having to deal with DDD. I was diagnosed with DDD in 2004. It was at the L5 S1 level. Every subsuquent MRI was worse than the first and like you I was not in chronic pain at first. I would have three good weeks one horrible one. Then that began to change until I got to the point that I could not sit down for more than five mintues or so and then standing long periods was an issue, tossing and turning all night in pain trying to get comfortable, I was not able to enjoy any of the things in my life that I once was able to do. I tried pt, injections, medication, rest. I had a discogram done two months prior to surgery.
    Have you tried injections? They helped me for awhile but then even they failed. Also, Lidoderm patches helped me for a bit too.
    Also, about the migraines, I have migraines as well, pretty severe ones, I have needed infusion at home on two occassions because they could not stop them. I have never taken percocet for a migraine. I take Maxalt and Fiornal#3. I find that the triptan Maxalt was the best one for me, some of those triptans are so harsh and if the Maxalt fails then I have the Fiornial as a back up. I use the Topamax as my preventative (200mg) a day. The topamax has been a lifesaver for me as far as migraines go.
    Anyhow, good luck to you, keep us posted
    Lori

     
    Old 01-06-2008, 10:06 AM   #7
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    Re: DDD options?

    hey -
    thanks everyone. i guess i'll see where i am later after the MRI, and then i can see if we are going to change meds or what.
    I cant remember what level my issues are at, but its my lower back... same with the herniation i had and the bulging disks.
    This is the first standing MRI I will have done, which we think will give us a lot of info since all my other ones show tons of stuff but not exactly why i can be in so much pain. We are pretty sure there is a lot of compression (although i dont really exactly understand what that is... i didnt ask... or how that can be fixed) happening since im at my worst during a flare up when im sitting and standing.
    i hope i can go to work next week. i work in TV and it's pretty hard to be out! i had xmas week off, which was when my back gave out but i do need to get into the office.
    Hearts, as far as migraines, i take 75 mg of topamax, but i dont like myself at 100.. i get pretty forgetful. I cant take immitrex, maxalt etc... they dont work for me... weird right? But axert works sometimes... especially if i mix it with a pain med. really sucks to have two issues that are painful disorders right?
    anyhow thanks again everyone for the support! I'm looking forward to my MRI since it's been about 2 years since my last. I'll keep u posted.

     
    Old 01-06-2008, 10:09 AM   #8
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    Re: DDD options?

    [QUOTE=Wendy88;3376588]hi! thanks for writing me.
    yeah - i have some bulging disks too, numbness/tingling/icy feelings in my left thigh when im in certain positions, sciatica that comes and goes, arthritis etc... it's really fantastic.
    My pain comes and goes during the year (in between flare ups) although not to the level it is now. This situation Im going through now feels like a disk herniation, although i think it's just a tear. However, during the course of the year i think i can get away with the percocets when i have pain... but in this situation i wish i had something longer lasting. I'll probably ask my doctor about the oxy when i see him after my standing MRI. something must be getting compressed due to the pain i feel when im sitting/standing.

    yeah i take topamax already for migraines. It worked great for a while but i think it is starting to not work quite as well, and I dont want to up my dose. So I mostly rely on percs... cause a lot of other typical migraine meds dont work for me. It also did really helped me with the tingling numbness in my leg, which is a bonus. and the Baclofen sometimes can help with migraines my dr. said, so if it does, Im going to go of the topamax for sure.
    Anyhow - I'll take a look at the pain management board. I didnt think of that. thanks!
    Has anyone discussed any surgical options with you? Or that injectable disk material i think they can do now?
    thanks again for writing me back! sorry for such a long response! no one I know has this issue and it can make you feel lonely to be going through all this pain and that it isnt just some ache. and of course, being basically trapped indoors for 2 weeks isn't so hot either.

    wendy[/QUOTE]

    [FONT="Comic Sans MS"][COLOR="Indigo"]Hi Wendy,

    I don't mind your long response or writing you back. Feel free to post anytime for any reason, to to ask questions or just to vent, we all know how you feel . I certainly know all too well what it's like to feel loney and housebound . I have a big family but no one else has back problems, so while they can say they know how I must feel, they really have no idea. Finding this website was a Godsend for me, in fact, I actually have no idea how I found it, which is funny now, but I do remember how I lurked for mths b/4 joining. I spent a lot of time reading other people's stories .

    I think what triggered my DDD was pregnancy. After the birth of my first and only child is when my back problems started. I'm glad I didn't know I had DDD before I became pregnant, (even though looking back there were signs of DDD) b/c if I had known I would have never made the decision to get pregnant and have a baby. My son is now a happy, active toddler and I wouldn't trade him for anything. He is such a blessing! I believe God gave me and my husband our son so we could get through this terrible back mess. I hurt chasing after him everyday but it's worth it.

    It's interesting that you have DDD and migraines b/c I've always had terrible headaches but have never had them officially diagnosed. There must be a connnection between the two. There are many people on this board and the pain mgmt board that have migraines and back problems.

    I have never heard of any procedures involving injectable disc material, but would welcome any information you have about it. I've tried other treatments though, PT (physical therapy) and ESI's (epidural steroid injections). Physical therapy made me feel worse. Have you tried ESI's? That might also be something to discuss w/your doctor. It's an easy, quick, painless procedure my PM does in his office. Steroids shrink the disc causing it to back away from your nerve. It can be a temporary way of relieving some of your pain. How long the ESI last varies from person to person but can be anywhere from 2 wks to 6 mths according to my PM. Personally,I've never received any pain relief from ESI's but it doesn't mean you wouldn't. I've read many different articles written by top notch doctors that people who have both back pain and sciatic nerve pain usually benefit from ESI's. I only have back pain. Due to a herniated disc (L5-S1) compressing my sciatic nerve, my left leg and foot have been numb for almost 2 years now.

    I have also had surgery. I had a level 1 spinal fusion at L5-S1 almost a yr ago and I'm in more pain now than b/4 surgery. I feel bitter about my surgery experience but to tell you the truth I don't think my NS (neurosurgeon) necessarily did anything wrong, I think it's the typical progression of DDD. At my pre-op consultation w/my surgeon I had 3 herniated disc - L1, L3, L5 - my NS wanted to take a conservative approach b/c of my age. He told me if fusing L5-S1 didn't help my pain then we would address L1 and L3. During surgery, when he was actually able to see my back, I think he was shocked at it's condition, I think it scared him off. He told me after surgery that I had the back of a 60 yr old's and that it looked worse than any test had previously shown. Seven mths after my fusion instead of trying to fix me and lessen my pain he instead sent me to a PM doctor. During the 7 mths his nurse and secretary were very unkind to me several times and I felt like getting an appt to see him was like breaking into the CIA. I honestly don't think he's a bad surgeon, I think he didn't know what else to do once he cut me open and took a look at my back, mainly b/c of my age. The good thing that came out of this is the PM doctor my NS referred me to. He is wonderful. He's not a typical PM that just writes scripts and pushes ESI's. He did tell me I was a "failed fusion syndrome" statistic and that 70-75% of fusion surgery patients have failed fusions, meaning they spend the rest of their lives living w/chronic pain. You can bet my NS is not telling his pre-op patients how high the failed fusion statistics are. I'm sure he has included me in his sucess statistic, b/c his goal going into my surgery, as told to me by his nurse several times, "was to relieve my nerve pain"...lol...(I'm shaking my head right now) I've NEVER had nerve pain. My PM tells me that right now I'm too young for additional surgeries. He definately thinks more surgeries are a strong possibility in my future but to go ahead with them now would be a waste of time b/c fusions generally don't last for more than about ten yrs. So, I'm stuck w/trying different treatments and meds in an attempt to manage my pain.

    I do think that your back problems are probably going to keep getting worse. That seems to be what happens with those of us with DDD. I definately think it's a good idea to discuss different pain meds and treatment options with your doctor now, before your pain gets too out of control.

    I'm sorry my post is so long. I hope your pain subsides so you can get out of your house for a while.

    Take care ,
    Scrappin'[/COLOR][/FONT]

     
    Old 01-06-2008, 12:22 PM   #9
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    Re: DDD options?

    thanks scrappin'! I'm chilling out today... taking advil, percs and baclofen... trying to rest up so maybe i can do a half day of work tomorrow. My boyfriend has been waiting on me, which has been lovely!
    Anyhow .... Wish me luck!
    so sorry you've had to go through all that. It must have been so frustrating to say the least... although it has been very interesting to read. I always wonder about getting pregnant and having kids. I feel like i'll push out my disks as well as the baby!! At least you got a lovely little treasure before things got really bad.
    gosh - all i want to do is go to the gym. that was my new years resolution.
    yes - i feel like there must be some type of connection b/w migraines and back issues... maybe something with the muscles and nerves? hmm....
    you should look into your headaches... cause for some people, there are meds out there that are very helpful and you may not have to suffer with those too. I've found the migraine board here helpful here since I've had such issues getting mine under control.
    I dont really know a lot about that artificial disk material injection that I mentioned. My parents told me about it (they would like me to have surgery and not rely on meds) but i tried to do a search on ****** and had trouble finding exactly what they were talking about. Perhaps it's still in trials. I thought it was an injection where they put in artificial cushioning between the disks for those of us who don't have it anymore.
    I'll ask my Dr. about it and post what I find out.
    Yeah, I've heard/read a lot, probably too much, about failed fusions... (im so sorry yours didnt work)... so Id be reluctant to do it unless I was desperate, which I guess at times I feel like I am. As far as injections, my Dr. wanted to do the cortisone injections last time this happened, but I was too scared. Im a huge baby when it comes to procedures, HUGE. But, I'll ask him about it i guess. I have to suck it up and think about injections if Im considering surgery! Just the thought of a long needle in my back freaks me out. I get worried somehow he could hit something and make it worse. But logically I know that doesn't really make a lot of sense.
    Anyhow - i hope you are having a nice and somewhat pain free Sunday!

     
    Old 01-06-2008, 03:59 PM   #10
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    Re: DDD options?

    [FONT="Comic Sans MS"]Wendy,

    Isn't it nice to have someone wait on you for a change? Actually, speaking from experience, that gets old quickly. I have a wonderful husband. I think he's superman in disguise . He can do anything I can do - household chores, grocery shopping, taking care of our son - but I wish I could do those simple things all the time. I miss doing simple things like that!

    ESI's aren't painful. The only painful part of the injection is the "bee sting" when your doctor numbs you, other than that you don't feel anything. I don't mean to scare you, b/c I really think you should try the injections, but I had an injection this past Friday and have been terribly sore since. My PM wanted to give ESI's one more try b/4 moving onto the next treatment, even though I NEVER get any pain relief from the silly things . I usually am sore and achy the day of the injection but am feeling better the next day, so this is the first time I've had such a terrible reaction. From what I've learned, ESI's can cause inflammation b/c a bunch of fluid is being inserted into such a small space and that may be why I'm so sore. Luckily, today I feel less sore than yesterday.

    You could try surgery but with DDD you're probably always going to have problems . Actually surgery may give you many good years, who knows, that's the crazy thing about surgery, it's a gamble. There's no guarantee either way.

    I think the artificial disc material your parents told you about is called 'artificial disc replacement'. I'm not sure, but that's what it sounds like. I'm still not familiar with it but I've heard the term thrown around before.

    I hope you're able to go to work tomorrow.

    Take care,
    Scrappin'[/FONT]

     
    Old 01-07-2008, 11:17 AM   #11
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    Cool Re: DDD options?

    [QUOTE=Wendy88;3377154]hey -
    thanks everyone. i guess i'll see where i am later after the MRI, and then i can see if we are going to change meds or what.
    I cant remember what level my issues are at, but its my lower back... same with the herniation i had and the bulging disks.
    This is the first standing MRI I will have done, which we think will give us a lot of info since all my other ones show tons of stuff but not exactly why i can be in so much pain. We are pretty sure there is a lot of compression (although i dont really exactly understand what that is... i didnt ask... or how that can be fixed) happening since im at my worst during a flare up when im sitting and standing.
    i hope i can go to work next week. i work in TV and it's pretty hard to be out! i had xmas week off, which was when my back gave out but i do need to get into the office.
    Hearts, as far as migraines, i take 75 mg of topamax, but i dont like myself at 100.. i get pretty forgetful. I cant take immitrex, maxalt etc... they dont work for me... weird right? But axert works sometimes... especially if i mix it with a pain med. really sucks to have two issues that are painful disorders right?
    anyhow thanks again everyone for the support! I'm looking forward to my MRI since it's been about 2 years since my last. I'll keep u posted.[/QUOTE]

    Hello again!
    I know what you mean about the Topamax, forgetfullness, feeling dumb etc Being on topamax is all part of it but it is the drug that took my migraines from 4 - 5 a week down to 2 a week. Some people refer to topamax as stupamax! The Triptans are like that, I can't take Axert or Imitrex but can manage Maxalt, plus there's a nasal spray that my nero wanted me to try, OH my gosh! Made me really sick! Prior to surgery I was still having migraines, the usual, one to two a week, knock on wood.... i have not had a migraine since surgery!!! It's like I keep waiting, because I have had them for so long, but so far so good! My nero will not believe it.
    I don't think I am cured or anything, I have gone a month before but I am encouraged!

    And yes, having two painful disorders is the pits. Before, between my back and my migraines, I felt like I never got a break. I felt like I had no life. I am only 41 and so many times my migraines or my back would spoil a planned event, I would get so depressed about it.

    I hope your situation works out.... keep us posted

    Lori

     
    Old 01-09-2008, 07:46 PM   #12
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    Re: DDD options?

    hi all
    so i have been back to work, although its been hard. I can only put in a few hours.
    However i discovered if i take a baclofen and a percocet, i can get through a 5 hour day ok. I never really thought taking pain killers at work was an option. But its been very helpful and I can still think clearly.
    My insurance has denied my doctors request for my standing MRI!!
    so he is appealing it. so insane! I have pretty good health care. my last MRI was 2006.. ugh. i dont understand how they could do that. I dont know the basis in which I was denied...
    Well if it doesnt get better soon I will possibly do the ESI... and Im going to start acupuncture. I find that to be pretty helpful when my back is so tight and spasming. I can totally suggest that to anyone having a bad time with their backs. I know it doesnt work for everyone, and it's not inexpensive... but i find that i leave feeling very relaxed as if i had a massage... and it has helped control my pain in the past.

    anyhow thanks for all the support. I feel a bit better. Being able to leave the house and knowing that as long as i take meds i should be able to go to work, has been freeing.
    I hope you guys have having a good week so far!

     
    Old 01-10-2008, 07:47 PM   #13
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    Re: DDD options?

    Wendy, thank you so much for the update! I am glad to hear that you are receiving some pain relief from your pain medication. I pray that your insurance will cover a standing MRI. Please continue to keep us all updated about your condition!

     
    Old 01-10-2008, 08:58 PM   #14
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    Re: DDD options?

    [QUOTE=Wendy88;3383046]My insurance has denied my doctors request for my standing MRI!! so he is appealing it. so insane! I have pretty good health care. my last MRI was 2006.. ugh. i dont understand how they could do that. I dont know the basis in which I was denied...
    Well if it doesnt get better soon I will possibly do the ESI... and Im going to start acupuncture. I find that to be pretty helpful when my back is so tight and spasming. I can totally suggest that to anyone having a bad time with their backs. I know it doesnt work for everyone, and it's not inexpensive... but i find that i leave feeling very relaxed as if i had a massage... and it has helped control my pain in the past.[/QUOTE]

    [B][FONT="Comic Sans MS"][COLOR="DarkOrange"]Hi Wendy,

    Is there something different about a standing MRI other than the obvious difference? A standing MRI must be new b/c I've never heard of it until I read your post. I know regular MRI's are pretty expensive, I wonder if your insurance company denied your dr's request for one b/c it is pricey. Have you called your insurance company?

    I'm glad you've found some different ways to help ease your pain. You will get better at learning what helps control your pain and what doesn't b/c, as we all know, no pain medicine provides 100% pain relief .

    Take care Wendy. I sincerely wish you only the best.[/COLOR][/FONT][/B]

     
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