Pain Pain

[briarrose]

Hi Laura.

Thanks for your reply. I just got back from Dr. Porter. My back stayed the same, so that's good. He said there's no way I can have a pain free life. He said surgery might help, but it wouldn't take away all the pain either. I'm really depressed now. At least I didn't cry while I was there like I did last time.

One thing happened that was annoying and kind of funny. I went to get my x-rays done and they had me lay on that table thing and they did 2 thoracic x-rays. The guy told me I could go. I said, "Don't I need to do one standing up?" He said no. So then Dr. Porter came in and asked if these xrays were done standing up. I said no. He was annoyed. I told him that I had asked about having one standing up. He took me down to get another xray. He was like, "Guys, scoliosis means standing with a full back xray." It was funny, though it did cost me another half hour.
Dr. Porter told me to come back in 2-4 years.

Now I don't really know what to do. I guess I could wait a year and try the Rothman Institute or just forget about it. Though the pain is sometimes unbearable and my tingling arm isn't very nice either. I don't know what to do.

Is Dr. Balderston nice? I can't stand doctors who are mean. Dr. Porter is really nice, but he just doesn't seem to give me any options. It's so frustrating.

I've read some about rolfing. Does it help you a lot?

Have a good day!

Michelle

[EmilyB]

RE: Briar Rose's post

Hi,

I'm afraid I don't often peruse these forums, but as I'm heading off to a new orthopedic surgeon tomorrow, I've been doing all my "research."

Briar Rose-Michelle is it?- your recent posts jumped out at me because I'm 23, have "had" scoliosis for about 10 years and am very troubled by the pain it causes. The doctors I saw growing up always told me that scoliosis doesn't cause pain, and I must be doing something wrong, or should just quit doing whatever causes the pain--unfortunately a life in bed didn't quite work out. I've sinced moved states and will see a new doctor, get new x-rays tomorrow.

At any rate I was hoping to compare notes on what you've tried for pain mgt. etc. I've been determined to avoid surgery up until this point, but am starting to wonder if it wouldn't be so bad.

Thanks in advance for yours, or anyone elses, thoughts.

~Emily

[briarrose]

Hi Emily!

How did your doctor's visit go? Did you find out what your curvature is? Where did you move from?

I've tried several things for pain, and only one has helped a little- deep tissue massage. I go to a lady from Thailand, though I haven't gone in about 3 years because of the cost and because it's a very, very painful experience. I always felt better about 2 days after, but the initial massage is awful.

I've also tried chiropractors, physical therapy, cortisone shots, prescription naprosyn, and pilates. None of these have helped in the slightest. Though, they might work for some people.

Surgery sounds scary to me, but I think I would have it done if I was in enough pain. My doctor told me yesterday that he would do surgery if the pain was bad enough, but he wouldn't guarantee that the pain would be gone. This is a horrible condition to have. I empathize with anyone who has to deal with chronic pain.

What type of job do you have? I'm a waitress/student. Being a waitress isn't the smartest job for me to have, but it pays the bills and then some. I come home from work and I'm pretty much shot for the evening. Friday and Saturday nights consist of me laying on the couch because I'm in so much pain I can barely move. My husband is nice and rubs my back for me, but he says the knots come right back as soon as he leaves a spot.

I've been told that too- scoliosis doesn't cause pain. Really, look at the x-rays. It looks like it would be painful. Sometimes doctors make me so mad.

Anyway, I'd like to know how your appointment went. Take it easy and I hope your pain subsides.

Michelle

[lrmb]

I only had time to skim the latest messages on this thread, but Michelle, did the doctor really say "no way you can have a life without pain"??? That is unbelievable. If he said this, was his "reason" because of the scoliosis or disk damage?? You absolutely should get as firm as possible an answer about what is causing your pain. Nobody should be told they have to live in pain. That is disgraceful! There are many ways of managing pain, and I know it's tiring, but if you keep trying you will finally get help. I can't believe he told you that you have no other option but pain and then come back in 2 years! If I were you I would try somebody else. Dr. Balderston was fine, very direct and to the point, but he spent time answering questions and also had a nice resident who also spent a lot of time talking with me.

If I were you I would try him and/or also try the rehabilitation person at Rothman. Please don't give up! I have been there, and it is difficult to imagine being out of pain, but you mustn't give up.

Take care. Laura
p.s. Have you already tried low-dose anti-depressants as painkillers? I take 20mg Amitryptilene each night and it really cut my pain level.

[briarrose]

Hi Laura,

My doctor said, "There's no way you're going to live a perfect life." I'm assuming perfect meant painfree. That was all I could figure it to mean. His reason was because of the scoliosis. I mentioned something to the nurse about my arm tingling and she wrote it down, but the doctor didn't say anything to me. I need to learn to speak up. I'm in this habit of not saying anything if the doctor doesn't. I just feel dumb because my curve is only 33 degrees and I'm complaining about pain. Yours is 49! You have a reason to be in pain.

I have not tried anti-depressants. Do you have trouble sleeping? I usually sleep fine, I just wake up with aches and pains. I was given prescription strength naprosyn, but that did nothing. At work I'll take 3 advil, but that doesn't do anything either. I think I just do it for peace of mind.

Thanks for the encouragement. I was seriously thinking about giving up, but you're right, I don't need to live like this. I'll go to the Rothman Institute at some point, maybe this summer.

Thanks again!

Michelle

[lrmb]

Hi Michelle,

We all need a bit of backup sometimes!! If you see another doctor, it might be worth asking them specifically about your disks. A lot of back pain comes from disks (and people with scoliosis are more likely to have degeneration of the disks I think).

As you probably know, most doctors will say you don't get pain from scoliosis until it's severe (I think they usually say about 70 degrees)... but a lot of patients probably disagree like you! Anyway, with my 49 upper curve I only get bits of muscle pain here and there, it definitely makes me tired, but nothing really awful as yet. In my case my real trouble right now comes from a bad disk in my low back. I personally suspect the pain is from a combination of the bad disk and the scoliosis, but nobody will attribute the pain to the scoliosis with only a 30 degree lower curve.

I only had trouble sleeping when I had chronic pain after injuring the already bad disk. Everybody told me the amitryptilene would help me sleep, but it didn't seem to have very much effect. But it certainly helped the pain A LOT (from 5-8 on the pain scale to 2-4 on the scale). It might be worth asking your MD if you could try it. Nothing else had helped before that. Doing a course of Rolfing seems to have got me down to 0-1 on a daily basis. I have also made some substantial day-to-day modifications in my lifestyle as preventive measures: never lift anything heavier than a juice carton if possible, be careful bending, no long car rides if possible, always sit with a lumbar roll. It's worth them to be out of pain. As for the Rolfing, it was expensive, but in my case worth it. After 10 sessions now I only have to go once every couple of months or when I'm having trouble. I can tell you more if you are interested.

Well, courage and fortitude and keep thinking about your options. We are all here for each other, don't despair, you will find ways of managing and people who will help.

Take care. Laura

[EmilyB]

Hi again,

Sorry I'm still a bit slow at this...my doctor's appointment went well all things considered. I grew up being told I was an example of a bad case of scoliosis that would eventually injure internal organs etc. and that there was no hope other than surgery which I adamantly opposed out of fear. Just like you, I always freeze up and don't say anything or ask any questions. I guess (especially as an adolescent girl) I was just so insecure and unhappy. I felt like no-one really thought my back hurt.

I'd been preparing for this visit since I moved to Colorado about eight months ago. I try to take less naprosyn and ibuprofen, I've been writing down questions (which I held out so I had to read them), and have been seeing a PT who does exercise, manipulation and Feldenkrais weekly (using my grad school savings as insurance covers nothing!)

My goal was to defy science and improve my curve and pain. No such luck on the curve, but I think the pain is improving slowly. The respectable doctor basically said there's nothing they can do at this point and it won't ever improve, but until I'm absolutely immobile and miserable he doesn't recommend surgery because the size/location of the curve would require such fusion that I would lose almost all trunk movement! yikes. He also said there is no guarentee the pain would subside at all.

So my next tactic is to focus solely on pain mgt. I've found yoga and stretching help a little, and have heard great things about acupuncture, so I think that's next. I've tried all sorts of therapies and even had a boston brace, so my fingers are crossed. What have you tried? Does anything work better than something else? Do you find you've grown immune to ibuprofen?

Thanks for your thoughts--I look forward to hearing from you again. Btw, you asked what I do--I recently finished college and now work in the nonprofit world, at a computer all day! Not fun on the back, but better than waitressing I would guess...standing seems to exacerbate the pain for me.

[EmilyB]

Oops, one other thing. I thought I'd tell you my curves were measured at 25 and 35 with right rotation...similar to yours. And, yes, previous doctors claimed that this curve couldn't cause pain, but this doctor aknowledged that because of muscle strain and pressure on the discs it can! While he couldn't suggest a cure, at least he admitted that we're not crazy!

[Littleone1016]

Hi there,
I am 23 years old and I was reading your posts. Boy do they sound familiar. Unfortunally I do have a severe curve (both Scoliosis and Kyphosis curves) which is currently at 75 degrees. I have had the works done: 3 spine surgeries, including rods and rod removal. Every brace you can think of, excersises, acupuncture, PT, massage, you name it I've probably tried it. And I've tried it before and after surgery. The only thing that I haven't done is medicate. I am really concerned that if my back pain is this bad now, and I take strong pain meds, what will I do when I am older? I stopped working at the age of 20 because my back would hurt to bad (I waitressed too for a while) and now I'm on disability. So all that said, don't give up. First, you need to find a better doctor. If you are in that amount of pain something needs to be done. I feel like I have gone to millions of docs (ok an exageration) for second opinions even if I agree with the first one. You never know who you are going to find that will truely care about your case and make you feel comfortable. But you have to stay on these doctors. Make sure they understand just how much pain you are in. Also it's a really good idea to bring someone in with you to ask the tough questions when you are crying, upset or in shock. If your husband has the time ask him to go to as many appointments that he can. My mom is the one who goes with me but even a trusted friend will do. If you write down any questions you think of before the appointment and you forget them the person with you can help prompt you. Also they can take some notes so that if you missed some information they might have heard it. Pain is bad enough, you don't need others to tell you it's all in your head. Find someone worth your time and you may be able to find some kind of help after all. Good luck.

And by the way, it is really good to see some people my own age (no offense to anyone else) talking and dealing with the same issues. Sometimes I feel like I'm in between age groups of people with Scoliosis. So thank you :-)

[briarrose]

Hi gals!

It's so great to have others to relate too. A friend of mine sent me this article:

http://specialsections.lancasteronli...scoliosis.shtm

Does it sound like a scam? Do you think it's worth looking into? I live about 30 minutes from this place.

Laura,

I would like to know about rolfing. What exactly is it?

Emily,

I'm glad your doctor's appointment went well. I've done pilates a lot, but that doesn't help. I was doing tae bo for awhile, that hurt more than it helped, but it's so much fun! I feel like I have become immune to ibuprofen. It takes a lot to make a headache go away. What kind of things are you doing in physical therapy?

Littleone,

75 degrees! Wow! I feel really bad for you? Did your surgeries help at all? Thanks for the encouragement.

[EmilyB]

Hello there!

Michelle - I looked at the article, and it doesn't sound too crazy. Then again at this point I'm willing to try just about anything. Do you think you could speak with a past patient? Or find out the degree of curves and pain levels they are accustomed to working with? I know I was stoked to read about minimally invasive surgery on the iscoliosis site, but my curve (and I'm guessing yours and littleone's) are completely different than the "example patients."

The PT I see now also practices Feldenkrais, which has helped with decreases pain assoc. with general movements (picking things up, standing in line etc. Let me know if you have more questions about that.

I have also tried rolfing. I met with a rolfer about 10 times before moving (which is why I stopped). The actual session was less painful than many of the massage options (or pilates in my opinion), and I always felt much better when we were done, but the relief didn't last very long (a day) and it was expensive. If you're looking for a rolfer, I would recommend a certified advanced rolfer with scoliosis experience. I might try it again to...

OK, hope some of this is helpful...I look forward to hearing from you all. And, littleone, you inspire me that with your curves and all you've tried, you're still trying--my fingers are crossed for all of us

[Littleone1016]

I know it sounds crazy but yes the surgeries actually did help. My curve was bad enough at 10 that I was slowly crushing my heart and lungs. Which is why I had the first surgery before I had fully grown. At 12 they put in rods because my back was still curving. A year later they became infected and I had to take them out. (Mind you that does not happen in most cases) So I'm now fused from T-12 to T-2. The fusion is holding in the 70's however above and below the fusion I am slowly starting to curve a bit. Like I said before, I have somewhat of a extreme case. For me, the surgeries did overall help my pain. There were some things that I had to change in my life and adapt but the surgery did make a big difference in how I felt. It has only been in the last 5 years or so that I have been having more and more trouble with pain again.
Have either of you tried acupuncture? Before I had surgery I went twice a month for sessions and they did help with the pain. But you have to really talk with the acupuncturist to explain what and where you need help. It did help me a lot but I eventually had to stop, one because I couldn't afford it (no insurance at the time) and two it only stopped the pain for about two weeks at a time.
I too am having a hard time with meds. I only have 800 mg Ibprofen and extra strength tylonol. I could probably get a prescription for higher strength meds but like I said before, I'm 24, I don't want to not have any options left to me for my pain as I get older.

[Littleone1016]

Re: article
Hehe, forgot to mention the article you posted. In general I believe the "if it's too good to be true it probably isnt true" philosophy. I mean, it has possibilities, however when you spine is crooked that is they way it was designed. A doc once explained to me that my back will forever be trying to recurve my spine because that is the way it was orignally. Hell, even our bodies try to fight us!!! I don't really see how wearing weights for 20 mins a day will pull our spines in the right direction? But that is just me. And I'm not saying that if was close to me I that I wouldn't try it. I was always taught to fight, to find a way, so I will usually try just about anything.
Some ways that you can check out this guy would be to talk to other patients, check out some of the national scoliosis dr lists and see if he's on it, and see if your insurance will pay for it. I know insurance is usually not our best friend but sometimes they require more information to approve a treatment and if it isnt a proven help they won't pay for it. Also if the doc does not take any form of insurance and/or asks for money to buy the weights etc then I would tend not to believe in this treatment until I had heard a lot more information. I hope I'm not too negitive. If something as simple as wearing weights will cure my pain I'm all for it. However I am a little skeptical. Good luck and please let me know what happens. Whether you go to see him or find out more information.
I am also the President of the Scoliosis Association of San Diego California. We just had a speaker at our last meeting, Dr, Kamshad Raiszadeh, who will be the first to be trying a new back strengthening for scoliosis patients. It is not something you can do at home, more of a specific PT for Scoliosis patients. I do not know all the details yet but if it has anything to do with weights like your article or even something else I'll be happy to pass it along


P. S. I am retarded and posted this on a brand new thread lol. And I can't take it off. Oh well.