"Scoliosis does not hurt" RANT

[dsal]

I have minor Scoliosis, and I read and post on the board only occasionally--usually when I'm having some type of problem, lol.

I hesitate posting since my curves are much smaller than most of yours on the board. I have problems with my small-degreed curves, so I super sympathize with all of you who have it so much worse than I do! <hugs>

So, risking sounding like a whiner, here I go!

My primary curve is 18-19 degrees (depending which dr. you ask), and is in my cervical region. I am short in stature, and you can visibly see (even though my curve is small!) that one of my shoulders is higher than the other. My left arm also hangs shorter than the other arm, and I often need to hem my blouse sleeves 1/2" -3/4" to accommodate it. Same thing with my leg--pants need to be hemmed about 1/2-3/4" shorter for my left leg.

My range in motion in my neck is limited, and I often get neck strain on that side, and shoulder pain radiating down throughout the shoulder blade, upper arm pain, etc.

Awhile back, I went to see an orthopedic surgeon who is a Scoliosis specialist. He treated me as though my issues were no big deal, and rx'd some anti-inflammatory meds. He was probably thinking something like, "This lady doesn't have it all that bad--most of my patients are much worse!" Yet if I'm having structural problems, it doesn't really matter how bad I have it compared to the person in the next examining room. My problems are still my problems!

While doing yoga, I realized that my range of motion problem were getting in the way of executing the stretches properly. I mentioned this to my
general practicitioner dr., and he recommended that I see a Physical Medicine specialist.

One of the first things the Physical Med doctor told me during the appointment is, "Scoliosis Doesn't Hurt."

PLEASE, SOMEONE, ENLIGHTEN ME!!

That doesn't make any sense to me! If Scoliosis causes a person's muscles to be stretched or tightened in a way that they aren't supposed to be, and then your range of motion is decreased--yet you try to use those muscles in a normal way, then of course it hurts!

I was so dumbfounded when she said this, that I didn't think to ask her to clarify the statement. There must be something I'm missing!

She rx'd muscle relaxers and physical therapy. I've been taking the muscle relaxers, but always feel guilty doing so--like maybe I should just tough-it-out since "Scoliosis doesn't hurt". The PT is helping my range of motion. Yes, I know it won't cure Scoliosis, but that's not my goal--my goal is to be able to move my left arm/shoulder close to the way that I can move my right arm/shoulder. But those PT copays are adding up...

I went for my re-check this week. Even though she phoned me with quick feed-back when my Xrays were received, I was thinking that she'd have them in the app't room and point out things on the Xrays (i.e. arthritis or whatever). She didn't. She asked me a couple questions, asked me to turn my head this way and that, and then flew out the door. She seems friendly enough, but doesn't spend much time during these follow-up visits. (Is that normal/what's to be expected?)

So, I'm wondering: Why do drs. keep saying that Scoliosis doesn't hurt?

dsal

Thanks,
dsal

[Jacque's Mom]

Dsal - I completely understand why you are frustrated. I have ALWAYS had pain from scoliosis. I was 12 years old and would cry to my parents that my back hurt. I do not know what my curves were then but when I had my surgery in 1981 it was in the 60's, so it certainly was less than that. I'm guessing since it continued to get worse, it couldn't have been that high at 12, but I could be wrong. I ALWAYS HAD PAIN. It seemed like it was constant. I would lay on the floor when I got home from school to get some relief. The only thing the doctor did was send me to physical therapy, which did nothing. I had the same problems with the pant leg, blouse, etc. I had a lift in my shoe inside and out. I feel the same way, if your spine is curving and pulling your muscles, etc. how can it not hurt. My daughter has scoliosis, which thankfully nothing had to be done except keep an eye on her. She never had pain. You are not alone feeling this way. I ditto your feelings. I hope you find some relief and someone that will be willing to spend time with you at your appointments. That too is very frustrating. Good luck, LYNN

[dsal]

Thank you for your kind response, Lynn. Yes, that was one thing I forgot to mention: I also have orthotics, mainly to lift my left foot up a bit.

I'm glad to hear your surgery worked for you! Yeah! And I'm also pleased to hear that your daughter's Scoliosis is mild, and is causing her no problems so far. Please keep in mind, however, that aches and pains in her neck and back might insidiously creep up due to the muscle tightness that Scoliosis can cause, even though her Scoliosis is mild. ;) My daughter also has slight Scoliosis, and she, too, was on a wait-and-see plan. She's almost 23 now. Her regular orthopedic app'ts stopped when she was 18, but I'm rethinking that now. Maybe she should still go periodically just to make sure her curve isn't sneakily progressing.

I hope that your daughter will continue doing well! And best wishes to you, too, with this Scoliosis struggle!

Hugs,
dsal

[sccrm08]

I also was told scoliosis does not hurt, but I knew better. I want to know how many of these Dr. have scoliosis to be so certain it does not hurt.

The year before I had the scoliosis surgery, I had to have cervical surgery, when meeting with the surgeon he noticed I was not sitting straight...I told him I have scoliosis he recomended I have it checked, not his speciality. Well I had been seeing Dr.s for 5+years and continuously told I did not want to have surgery as an adult. When my husband and I insisted on seeing a surgeon for the scoliosis we ended up in my cervical surgeons office knowing he did not do this type of surgery. Lucky for us, he did have a complete set of x-rays taken but did not give us a lot of hope. but he was going to a scoliosis conference that weekend and promised to bring my file. Four months later I went back for a follow up appt and he told us he found a surgeon who would see me (still not sure why he didn't call sooner)....we saw the surgeon the following Sunday...the offices were closed which made me nervous, but he explained he had gone over all my x-rays and MRIs and did not want me to wait the 3 months it would take to get in during office hours. He also told us he believes scoliosis can cause pain!!! Maybe Dr.s will start to beleave this as they learn more.

[Jacque's Mom]

Dsal - you bring up a very good point. My daughter will turn 21 in November. She also stopped seeing her ortho at 18, in 2005. I wonder if we should bring our girls for a check up to see if their spines haven't gotten worse. Has anyone in our situation taken their child for a re-check a few years after their last visit? Linda/Karen - do you think it's wise to have them checked? I'm now curious to find out. Thanks Dsal for that thought. Take care, LYNN

[dsal]

he was going to a scoliosis conference that weekend and promised to bring my file. Four months later I went back for a follow up appt and he told us he found a surgeon who would see me (still not sure why he didn't call sooner)....


What the Heck? He sat on this info for those few months? ARRGGHHHHH!!! Probably so busy that he forgot. Yet having that info from him sooner might have saved you some time and pain. grrrrrrr.



We saw the surgeon the following Sunday...the offices were closed which made me nervous, but he explained he had gone over all my x-rays and MRIs and did not want me to wait the 3 months it would take to get in during office hours. He also told us he believes scoliosis can cause pain!!! Maybe Dr.s will start to beleave this as they learn more.

Yes! A knowledgeable and compassionate doctor! I'm so glad you found someone who would listen to you, be able to help you, and then act on it! :) I'm glad this worked out for you!

I'm still so baffled as to why drs. love to spit out that line, "Scoliosis does not hurt." They shouldn't need to have scoliosis to realize that a misshapen back would hurt. I don't need to get shot with a gun to know ahead of time that it would hurt... :rolleyes:

dsal

[dsal]

Dsal - you bring up a very good point. My daughter will turn 21 in November. She also stopped seeing her ortho at 18, in 2005. I wonder if we should bring our girls for a check up to see if their spines haven't gotten worse. Has anyone in our situation taken their child for a re-check a few years after their last visit? Linda/Karen - do you think it's wise to have them checked? I'm now curious to find out. Thanks Dsal for that thought. Take care, LYNN


You didn't ask me, but I think it's a good idea. I was reading the forum this afternoon, and read a post from someone who had a curve that didn't need bracing. She was released from her regular ortho app'ts (that monitored her Scoliosis) when she was 18. Then in the next few years, her curves progressed. Of course now I can't find that post to reference. (Maybe you'll be able to find it!) I'll bet that that young lady will recommend that we encourage our daughters to keep having their curves monitored!

dsal

[Karen Ocker]

Lynne, I definitely believe checking you children's back after 21. A search through this forum shows many cases of adult progression after being released from monitoring/bracing.
This darn scoliosis is so insidious. However, finding no progression would definitely put them and you at ease. After which a regular, every 5 year, check-up has been recommended elsewhere.

[amae28]

I am 20 and my scoliosis is still getting worse. Not as fast as if I were still growing, but definitely around 3 degrees or so a year. For some reason I have also recently developed a 65 degree kyphosis along with my scoliosis and I am very rotated for the degree of my lateral curve. I am still seeing a doctor. I don't feel comfortable just letting it be. I'd prolly be a good idea to get your daughter's checked just to see if and how much her back is progressing so you have a sense of how long you should be waiting (if at all) to get it checked again so it doesn't get out of control.

[nzgirl]

As you can see from my numbers below... my curve has progressed, even though I am post surgery, I believe that it would have progressed more if I didn't have the op. I'd suggest keeping regular check ups, it's not cool to try and think that it's fine and then later on see that it has moved. You might only need 5 yearly check ups or something.
As for the pain thing, I had an excellent and caring doctor say 'I wonder why your scoliosis hurts'. I wasn't upset by that comment because now I know that it's kind of a medical myth that scoliosis doesn't hurt. I downloaded a lecture by Dr Boachie who said 'most people with this have pain' and felt like my experience of pain had been validated. For a long time I thought that it must be all in my head, and if I wasn't such a woos it wouldn't hurt. My reason for this was I didn't notice back pain until I got diagnosed. Maybe I had just ignored it, but at 12 realising this was a big deal.

[Mobee211]

I have to say I have had the WORST experience with orthopedic docs. They told me the same thing. My curves are "moderate" at 32/30 and I am in pain all day, every day. If I stand for long periods of time the pain becomes severe. Scoliosis does hurt. I sometimes feel like telling the doc "YOU don't have scoliosis, I DO and I am telling you, my BACK HURTS!"

[rtremb]

I have a minor scoliosis and I agree it hurts. It has all my life. If I stand for a long time it is worse. My daughter is experiencing pain too.

[dianeh]

I'm sorry. I've already forgotten your user name. My scoliosis has always given me pain off and on before the surgery yet I've read and heard doctors say scoliosis does not hurt. I'm confused too.

dhansen

[allgipan]

Hi I am 32 and like in my post I have just added Scoliosis is causing me much pain! I have been told the same "it does not cause pain" by two people now who probably dont have it themselves. Sometimes I could rip my spine out it hurts that much so take comfort in the fact that so many people here are saying YES it does bloo** hurt, agony sometimes does not describe it high enough...what a bunch of muppets these medical people can be to presume you would waste your time crying in agony!

[dsal]

I went in to my dr. for a re-check, and I am feeling much better. She did reiterate that Scoliosis does not cause pain. (I'm guessing that's something that med schools teach on Day 1 of classes for the spinal column. ;) )

Anyways, I have been going to physical therapy pretty faithfully twice a week. This is because I had a horrible muscle spasm in my left shoulder. The dr. doesn't think it was caused by my slight Scoliosis, however I wouldn't be surprised if it were. (Mainly because I have a tendency to get spasms there on a somewhat recurring basis. That also happens to be the side that is most affected by the curve in my neck, and the side where my hip is higher and my leg looks shorter.)

The PT sessions consist mainly of strengthening my left shoulder muscles while keeping my right muscles working, too. I'm also doing neck stretches, etc. The PT then does some stretching of my neck and shoulder, which feels w-o-n-d-e-r-f-u-l !!!! I'm also doing some work on over-all core strength.

Obviously this is not to correct my Scoliosis, but to help me be able to live my life with less discomfort and have more neck/shoulder mobility.

My Physical Medicine dr. suggested a Home Traction Unit. I'll post a question about that in a different thread.

dsal

[dawney]

I too was told scoliosis does not cause pain from my family doctor. My pain definitely progressed to the point where I could not function without pain pills. I finally had surgery and my pain is bearable. I also had a physicians asst from an orthos office say to me, why would you ever condider having that surgery, it is horrible. Needless to say I did not go back.
Have you been xrayed lately? If not maybe your curve has progressed. I think it is a matter of finding the right doctor.

[Dimitri]

I've very new to this site, but I just haven't seen anything about Chiropractors for pain. I'm worried that I'm going to read something discouraging...but it would be difficult to persuade me that seeing a Chiropractor is bad. We didn't know my 13-year-old daughter had scoliosis until we went to a Chiropractor, who took x-rays as part of the initial consultation--and we just kept going to see him because her relief from pain was almost immediate!--while we waited for appointments with her primary care physican, then on to 3 different ortho-surgeons for advice.

Gwen had complained of back pain and had pretty lousy posture...thus the initial visit to the chiropractor. She was a 54+ Cobb angle but all the ortho-surgeon-doctors commented on how good her posture was, including her pelvic alignment, etc....something they couldn't have said if she hadn't been to the Chiropractor first because she did not look good when we first walked into the Chiropractor's office! Incredibly important: the pain relief she honestly experienced within just the first few visits.

[rtremb]

Dr. Rivard told us this week that structural integration is good for relief of pain.

Dimitri: I noticed in your other post that you said you were going for the Shroth therapy. I am wondering if you did and if it is helping?

[cherylplinder]

Scoliosis causes pain. My 9 year old did not imagine that she had pain and couldn't run, play, sit upright for very long, etc.
She had immediate relief when she got the Spinecor brace at 10. She was in pain for about a year before that. She is 12 now and has no pain.She is still in her brace.

[ang_crash]

I too was told that and I do NOT comprehend how a medical doctor could think that scoliosis would NOT cause pain!!! Your spine is curved! Anyway. I had pain long before I found out what was wrong with me. Went to a family doctor when I was in the 8th grade who said oh, we just need to watch it! At that point it was 25 degrees - 6months later it was 60 in the lumbar and 45 in the thoracic. Anyway, point is I've always had pain and still have pain. I had my first surgery in 1985 and my second in 1990. I am now 37 years old and live in constant pain! Had to go on disability at 36 years old!!! Not an easy thing for me to do!! Can't play with my kids like I want or pick them up - no doctor will every convince me scoliosis doesn't hurt!!!

[CHRIS WBS]

What I find even more disheartening than hearing a doctor tell you that your crooked spine should not cause you pain is the fact that you’ve undergone two corrective surgeries only to end up in constant pain and on disability at age 36.

Chris

[Writer]

Doctors who say scoli does not cause pain have been reading the wrong clinical reports, since some of them say there's no pain, perhaps because the authors didn't encounter a scoli patient who had pain. There are over 12,000 articles on scoliosis listed in PubMed. This myth is also apparently propagated in some medical schools.

Dr Martha Hawes' book Scoliosis and the Human Spine (available from the National Scoliosis Foundation -- see the Store > Books page) devotes quite a few pages to pain in several sections.

Yes, pain is often associated with scoliosis, but the doctors don't know what to do about it. Hawes writes in one section about post-operative pain, and second or third surgeries that are at least in part an attempt to reduce or eliminate the patient's pain.

Chiropractors can be helpful for pain, they did help with mine, but the effects did not last.

[trcylynn]

I have heard this my whole life. I too have minor scoliosis 19-25 degrees depending on the xray and doctor but the rotation is much more severe. They all treat me like I should feel guilty for even seeing them since I'm nowhere near being a candidate for surgery. Its so irritating. The nurse or whoever walks in (on my first appt with the new doc) and says "you have scoliosis? it didn't look like it when you walked it." no lady I'm here because I missed the door to the dentist- are you serious? These people have no idea what its like!! I hate wearing bathing suits or anything revealing because you can see how off my lower back is. The emotional stress and pain is almost as bad as the physical. BTW I found out I have a degenerative disc "much worse than the doc would like for someone my age" but hey its not supposed to hurt so his advice- exercise, and don't smoke. PT helped some but I'm still skeptical. My next plan is to try rolphing and possibly this form of therapy my PT told me about I forget what its called though- some funky name. The PT I was seeing said she saw one person's curve correct during the process and told me if I could find a different PT that specialized in it she would rather have me go there than stay with her.

Anyways, just adding to the rant. And its irritating that no one seems to understand. I hate when people say oh my back is hurting today- they have no idea what its like to wake up everday feeling a 5 on a scale from 1-10. I'm excited when the pain goes down to a 3. I can't remember a day that my back did not hurt. I wonder if there are tests for pain tolerance- I swear anyone with scoliosis must have a very high pain tolerance.


Ok, I feel better now, sorry for the long rant.

Oh, PS- not sure who posted by my scoliosis did get worse. Age 13 -13degrees, Age 16- 15degrees, Age 18- 18degrees, Age 22- 23-25degrees. But I think the rotation is worse than that- I'm not sure if they measure for the rotation or if I have to ask for that or something- if anyone knows please let me know.

Thanks,

[becky1956]

Yes....Scoliosis does cause pain! Since finding out I have Scoliosis (july 07), all the Dots have connected. Since I have been "diagnosed" with a 35 degree upper Lumbar curve, the only relief provided (by Orthopedic Spinal Surgeon) was Celebrex and one hour conversation with a physical therapist. The only relief I've received since then was a muscle relaxer for a groin muscle I pulled while attempting to do my therapy at home. Currently, I am taking over the counter antiflammetory drugs and even though I swore off alcohol for the past fifteen years, I have fallen to half a glass of wine every night, heating pad, and shiatsu machine massage......... No, I'm not a whiner about "pain", and I have to be crawling on the floor before I see a doctor.

I'm a 51 year old female, and have suffered with mild to severe back pain that have gradually increased over the past fifteen years. I had know idea what was wrong with me. During that time, I would go to medical doctors and once I was refered to an ortho. specialist. "None" of them saw what was happening to my spine. I've had two bone scans, one MRI, and one CAT scan all covering my back and hips. I always got a "shrug", and don't know, maybe just muscle spasms, bursitis, etc................

But this past year, I had a really bad bout of pain, but instead of going to a "medical doctor", I went to a Chiropractor. And he was the one who told me I had Scoliosis. Of course he promised he could straighten me out, the cost of $9000 took me off guard, especially since my insurance only covers $500 a year for Chiropractor services. Due to the money issue, I opted for the Medical field, which as noted above, this particular doctor was of little help, and with a continuous wait of three hours plus on all appointments with him (sorry, I have to work to make a living), I am switching to another doctor of whom I hope will work out better. Will know in a couple of weeks......

I DO NOT fully trust medical doctors, therefore I am also searching alternative methods to either/or straighten my spine, relieve the pain. Since any alternative would come completely out of my pocket, I'm taking it slow and careful on what I decide to do. I am researching - Structural Interfacing, Myofascial Therapy (spelling?), Accupuncture, .... anything.... EXCEPT SURGERY!

But let me digress......... connect the dots....... I've always been 5'6", I'm now 5'4" (closer to three inches). I noticed over the past three years that it seemed one pants leg was shorter than the other, just thought it was "cheap clothing". Continuous menstrual cramps are getting worse.... yes I should be into menopause by now, but not yet....... During physical therapy from knee surgery, I mentioned my height loss and leg length difference to my therapist, and he just shrugged his shoulders.

I have always "worked out". And I still do - five hours a week doing TaeBo. Don't know if it helps or hurts my curve, but it's my moment that I "fight" my pain, "fight" my aging body, and feel some since of accomplishment in overcoming this Scoliosis. Some mornings are harder than others, but I keep at it. I've tried Yoga for Scoliosis, but haven't really applied enough time to it to receive any relief. Am also looking into Pilates..... I stretch and stretch and stretch... but receive only temporary relief.

My one big risk factor I am facing, is not Scoliosis, but the fact that my maternal grandmother had Osteoporosis. Therefore, no matter what, I will stay in contact with a medical doctor and continue to get a bone density test yearly. (curving of the spine with brittle bones does not go well together)


Enough of my "pity pot". Yes, medical doctors are good, but no one should depend totally on what the doctor says. Do your own homework. One description of Scoliosis really grinds my nerves, and that is "Deformed Spine". Now I know it shouldn't matter, but to me it does. Scoliosis is a disease, no matter whether you have surgery, or opt for other methods, even after your spine may seem to be straightened, it will eventually curve back. Some may disagree, but that is their right and I respect it. This comment is strictly from my own experience and from doing my own research. No, I'm not a doctor, but I do feel like a victim that gave way too much trust to the medical
profession. I know better now, and hold no one responsible for me except me!

Good luck to you all, and I will continue to read this forum. No one understands Scoliosis better than the people on this forum and I thank you all for enlightening me, and helping me to know that I am not alone in this.

Everyone have a Happy New Year!

[csc]

Becky,
I really admire your spirit and proactive stand. It really sounds like you are doing the right thing. I, too have been fighting this disease most of my life. It was not until my 40's that I really started experiencing pain. I've always kept my weight down and exercised. Finally, going into surgery on Jan. 29th. It's time.
You're really on the right track. Knowledge is power!

[becky1956]

Dear CSC,

Thanks for your positive response. Sad to hear about your surgery, but I fully understand. I know it will be a long recovery, just try to stay positive... Hope you the best of luck, and God Bless and look over you.

Becky

[green82]

HI guys i'm a 25 year old male that has just recently been diagnosed with scoliosis after visiting the familt doctor for back pain.He said it was mild and seemed to blow it off as no big deal but it's causing me great pain.Does anyone know if orthopedic doctors are more sympathetic about the condition?

[Writer]

Hi green,

I'm afraid that neither orthopedists or almost any other physician in Anglo-American medicine understands any scoliosis treatment beyond 1) watch and see if it gets worse, 2) put the young patient in a torso brace, or 3) fuse vertebrae surgically if the curves get bad enough.

None of these addresses the real problem in scoliosis, which is a complex imbalance of musculature, particularly (but not exclusively) in the back.

Read around in some of the other threads here, particularly patient experiences with the Schroth physical therapy method of treating scoliosis. There are a few American Schroth therapists practicing now, as well as prominent Schroth clinics in Spain and Germany.

Yoga or Pilates could conceivably help your pain, normally if the specialist knows how to diagnose your particular case, which one really has to have extensive kinesiology or physical therapy training to do. The point is that to be effective and not counterproductive, an exercise must address the particular pathological configuration in an individual body, and my scoliotic configuration is not exactly the same as yours.

[green82]

Well I decided to go see a specialist on this.He did x-rays and said I have a 20 degree curve,not bad but it still hurts.He gave me anti-inflammatory medication but nothing for pain.Am I being a baby about the pain seeing my curve isn't so bad?

[aktech23]

I have two twenty degree curves and my back hurts!

When I received my diagnosis, the Dr. told me "scoliosis causes pain, and it will cause you pain for the rest of your life"

[pleasemama]

I have severe scoliosis and was told a few years ago that scolisis doesn't hurt. He made me feel like a freak or something. I would love to go back to him and show him what doesn't hurt LOL


While the scolisis didn't hurt as a child it sure as heck does as an adult.