daily pain

[kaye]

I'm 56 years old and having a lot of pain with my scolosis. I was operated on when I was 26 and had a rod put in but it had to be removed because of staph infection. My curves are now 95 degrees lumbar and 67 degrees thorac. The orthopedic doctor I have been to doesn't want me to take pain medicine because he said of the danger of addiction,so I take 1800 mg of ibuprophen each day. This doesn't help very much at all. I work full time as a teaching assistant in special ed. and I'm careful not to lift anyone heavy. The most pain is between my shoulders and a burning pain on my left side at the hip where the curve is so bad. I have to lie down in the evening around 7pm because my back is so tired from the curves. My husband of 27 years is the best! He helps me a lot. I have been to physical therapy and done yoga exercises but they don't really help. One orthopedic doctor told me that people with my type of scolosis have excruciating pain as they age. Is there any help? I need to continue to work as we have a son in college and I love my job. Sorry this is so long. I have read the forums a long time but never wrote before.

[lelc2002@yahoo]

Kaye,
I have 60/60 curves & 95 thoraculumbar & 85 kyphosis. I thought there was nothing that could be done for me. Thank god, I found a Surgeon who says he can help me and that I have full confidence in! I'm younger(46) than you but I would think if you get checked, there could be help for you rather than the pain you are enduring. I also have pain mostly at night & must retire by 7-8pm. keep in touch...Lynne

[cdhheidi]

Many doctors (and patients) are afraid of pain meds because of their reputation for addiction. The thing is, if it is treating real pain, it is not like what most people think of as addiction. My son's orthopod detested the idea of Sean having anything more than regular strength tylenol for pain, but it was truly debilitating for him. He laid on the floor reading books instead of playing with his brothers. I spent months expressing my concern for the pain, we finally got an appt (thanks to our pediatrician... I love the man!) with a pain specialist. The orthopod sent the pain doc a note saying he did NOT want him on narcotics, the ped said help this boy with pain.

Pain doc prescribed a small dose of methadone and naproxen, and literally, within 24 hours, my son was able to run circles around his father when we picked him up at the airport. The only reason we have had to go up in dosage over the last 5 yrs that he has been on it was due to further surgeries or injury. And he still is on a fairly low dose, only 2x per day. We did have to switch the Naproxen to neurontin as he had a gut bleed, but truly, I am EVER so thankful for the ability to control my son's pain so he can have decent quality of life. Funny thing... the orthopod actually took the credit for sending my son to the pain doc... I didnt correct him, but OH boy was I laughing later on at home! Sheesh!

Pain can and SHOULD be treated. There are so many good drugs out there these days, and other ways to treat pain that it saddens me terribly when docs like yours are out there not really helping their patients with pain. I would HIGHLY reccomend getting in to a pain specialist. There might be a bit of a wait, but it is worth it, at least it was for my son.

Heidi

[kaye]

Thank you so much for replying (the two ladies that wrote back on the same day ). I really appreciate you taking the time to get back to me. I will make an appointment tomorrow with my orthopedic doctor and let you know what he says. Here in Knoxville,Tn there are only two scoliosis doctors that I know of and I have been to both but I'll go back because both of you have given me hope that something can be done. I have been hesitant to write to this site before because I don't want a young person to get discouraged by reading my story. All cases are different and some people have wonderful results with their fusion. The pain has only gotten really bad these last two years and I have lived with scoliosis since age 13. God bless you and have a wonderful day! kaye

[Jacque's Mom]

Kaye, I sent you a PM. Lynn

[dying2die]

hi .. SWIMM and it willease u i hope

[kaye]

I wrote last month and everyone was so kind and informative about my severe scoliosis. I went to the spine specialist here and he said I needed surgery because having the rod taken out back in the 1970s gave no support to my spine and it has continued to curve. He said some of it may be fused but he couldn't tell from the x-rays and also he thinks it has progressed about 10 degrees more in the thorac region. Hence the pain. He gave me hydrocodone and wrote a prescription also for Mobic but my insurance will not pay for Mobic. At this point in my life I don't won't to go through with another surgery and I don't know how experienced he is in working on older patients. I just want to be able to continue working for another couple years and not be hurting so bad I have to go to bed at 6:00 and not go to church and be able to sit for a couple of hours. I go back to see him April 4 so I'm going to ask for a referral to the pain clinic. I have two questions, what kind of bra can I wear that doesn't add more pain to my back? Is it possible for my curve to increase 10 degrees more since last summer?

[Karen Ocker]

Unfortunately, it is possible for these darn curves to increase the rest of our lives. You history is similar to mine except I NEVER had rods to begin with and lost correction. :eek:

I sent you a private message.

[Jadey]

I have pain all the time and it's so uncomfortable and frustrating. My curves are 31 and 26 but were originally 29 when I was first diagnosed. I've now been getting extreme pain which has been going on for over a month and is physically and mentally draining me :(

[ScoliGal]

Mobic doesnt work

[Gailee]

Mobic helped me alittle.But that I was using for arthitis in my fingers.Im falling apart. :eek:

[macky]

Gailee, what degree are your curves?
I know what you are going through believe me. My doctor has got me a strong meds but only a small dose. The attitude of all the doctors I have seen is that no one should have to suffer pain so that it interferes with their quality of life.

Have you been to see an orthopaedic specialist?

God bless,
Macky

[purecain]

pain meds all the way.... once your pain is controlled you can exercise which will also help you live a normal existance. i'm hoping to go up from dihydrocodeine to oxy contin or fentanyl. my appointment is this thursday and it will be the differance in weather i live out my days in terrible pain, constantly uncomfortable and extremely unhappy and unmotivated or happy because i can go through a day without wishing i was dead able to live my life going to the gym and socialising whenever i feel like it.
the pain i get from scholiosis is my prison and oxy contin is the key to the world out there waiting for me.

[Karen Ocker]

pain meds all the way.... once your pain is controlled you can exercise which will also help you live a normal existance. i'm hoping to go up from dihydrocodeine to oxy contin or fentanyl. my appointment is this thursday and it will be the differance in weather i live out my days in terrible pain, constantly uncomfortable and extremely unhappy and unmotivated or happy because i can go through a day without wishing i was dead able to live my life going to the gym and socialising whenever i feel like it.
the pain i get from scholiosis is my prison and oxy contin is the key to the world out there waiting for me.

This is a nice short-term solution; the problem is, unless the cause is addressed, the pain will continue, the curves will increase and narcotics stop working after awhile--despite higher and higher doses.

I was using fentanyl patch and hydromorphone while recovering from scoliosis revision surgery for 3 months. I was under the care of a pain management specialist who also used other methods, along with those, to enable me to get around, do PT etc. After 3 months we started to taper off those narcotics.
The withdrawal was terrible and fortunately my pain doc recognized it and used short-term antidepressents to taper off. The antidepressents also helped pain. Gradually, I healed and I am now totally pain free.

I hate to think of what type of life :eek: I would have had if I just resorted to pain-killers and did not address the cause of my pain.

[macky]

Pain meds are fine short term as Karen said. They are definately not a cure. Purecain, it worries me that they are putting you on really strong medication that I have read are really, really hard to get off,

OK I am on strong pain killers, only 40 milligram a day and they do not kill the pain. In fact the pain breaks through all the time. But there is absolutely no way that I would take more because as Karen said your body just gets used to the ones you are on and then wants more and more to control the pain and it is a never ending cycle.,
Just be careful, honestly I do know what I am talking about and I can read that you are hurting from the pain and missing your daughter as you said.
I have been in pain for 10 years and truly it is horrible, but you learn to deal with it.

God bless,
Macky

[zuma]

Can only 100% agree with what Macky and Karen have been said above. Addiction to legal drugs is no different or any easier to come off than illegal drugs. I hope you can find some other way to manage your pain.

I know pain management is not easy especially if you have led an active life. Have you tried acupuncture or other alternative therapies. Try having a word with your pharmacist see if they can recommend some alternative natural remedies.

I am sorry to read in another post that your scoliosis has led to a break down in the relationship you have with your wife.

Z

[girls1706]

I also had surgery with DR. Hugo Keim in 1978 and I am currently suffering from alot of pain. My 2 daughter were diagnosed with minimal scoliosis, no treatment needed yet. I now live in Miami, FL and it's been very hard to find a good doctor that's Scoliosis educated. :mad:

[purecain]

all i get from doctors is that i'm fine and that i will be fine. they say that my scholiosis isnt getting worse even though it blatently is. i am completely controlled by the pain. i also had a lumber puncture go wrong with a long needle being pushed into and scratching my spinel cord and have a constant sharp pain in my lumber region along with the pain from my scholiosis. and i am not hearing anything new, i know what all the facts are about pain meds. i am not able to have surgury and i have tried everything alse to help the pain but now i cant do for myself and that is unacceptible. without pain meds i will no doubt end up going crazy. i learnt to live with my pain when it was just bad pain. now it is excruciating and impossible to live with. and when i am on these pain meds i wont be coming off them 'ever'. my choice is the inconvenience of being on pain meds but able to live a normal life or being completely debilitated not celebrating christmas, the new year my birthday others birthdays and being trapped in my flat. before anyone replies please keep in mind i am intelligent(others say) and would not make such a decision lightly.
i dont want to live out my days on pian meds but i dont want to live out my days in pain. i have to find a happy medium.
i feel a little dissapointed with your replys to be honest, i thought you would understand. obviously not. :(
my appointment is as at 5.50 today. i'll let you know what the doctor says.
my daughter deserves a father and at the moment i am unable to do my part.
by the way i am already addicted to dihydrocodeine only it deosnt help enough with the pain. i have taken mst 30 mg before and it was brilliant and enabled me to live a normal life.
ok it seems this is worrying people, may i just say i have been on morphine before for a couple of years and have researched opiods for years. Please bare in mind i am already on opiods, i am just moving to a slightly stronger preperation. i have first hand experiance of what i am asking my doctor for.

[zuma]

If you already addicted to one pain killer why not get help to come of that before you go try anymore. I don't know how the medical system works in America but in the UK if a Dr knew you were addicted to one pain killer they certainly would'nt introduce you to another that would be very irresponsible of them.

I understand you want to spend time with your daughter who would'nt i have one and i could not imagine not being with her everyday so my heart goes out to you and your situation. However i would really er on side of caution when deciding on what drugs you take if you are having a problem with one then starting another may really affect your life.

Have you tried any form of counselling or alternative therapies such as acupuncture it could help both the addiction to the pain killer you are currently taking and the pain you are now suffering. I know back pain is not pleasant and i have suffered it most of my life so i can sympathise to some extent with your plight. However which ever drug you take you will build up a tolerance to it over time (as it seems you have with the one you are now) resulting in it not working and you will have to start again.

You say your scoliosis is getting worse do you know the degree of your curves or to what degree the curve has progressed over the last number of years and why has the Dr said you are not a candidate for surgery. If you have already answered these questions elsewher i apologise its just i'm trying to understand how the condition is affecting you because i can clearly see it is having a massive impact on your life

You say you are disappointed with the replies and no one understands what you are going through i would very gently wish to disagree with you there. From reading posts on this and a lot other scoliosis websites lots of people suffer pain to varying degrees and each has a different way of coping with that pain i would'nt like to critice anyone for the way they manage pain i just want to offer all the support i can if thats not want you want hear i'm sorry.

By the way if you having trouble with the Drs have you thought of trying another Gp or getting referred to a different hospital. Are the Drs you have seen scoliosis specialists or general orthopedic surgeons

I really wish i could offer you some better advice but unfortunately i can't

Peace

Z

[macky]

I dont know how to answer you purecain. Sending you a private message.

Macky

[zuma]

You just have to do what you have to do dude. Your obviously an adult and capable of making your own decisions. I would just caution you to get help for the addictions you already have before embarking on another journey with another drug. If your in England you can always change your Gp ask him him for a referral to Stanmore or Queens Medical Centre those are two centres of excellence in England

[zuma]

I hope you can find a non habit forming way to relieve the obvious pain you are in. I would seriously consider acupuncture if only to say you tried it. If it does'nt work then look elsewhere. I know a good few people who have found acupuncture helpful not just in managing pain but also in the way they live

take it easy

Z