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Tammy Beckoning Bears
Nova Scotia
Posts: 3,739
Website

My 16 yr. old son was just diagnosed  with Scheuermann's Disease ( spinal deformity occuring in adolescence) this week and I am trying to get as much info as I can.   I've read all I can online, but does anyone have any personal experience , or know someone who does.  I don't want him to have a lifetime of back pain   bear_cry

The doctor didn't know much about it , told me to go home and google it-can you believe that ! bear_angry  You'd think when he called us in to review the x-rays he would have been prepared with some info !!! He then referred us to a surgeon with  a 6 month wait to get an appointment !  The surgery sounds horrible and is a last resort according to what I've read .

Carlyle Bear Co. Carlyle Bear Co.
Ft Myers FL
Posts: 492

Hi Tammy,

I was sorry to read about your son's recent diagnosis of Scheuermann's disease.  I work for a chiropractor here in the US and I asked him about it briefly and he is going to get me the name of one of the websites he recommends to patients that offers credible medical info in laymans terms.  That way you can read a little more on it.  You may also want to consider taking your son to a local chiropractor in addition to the specialist to see if perhaps he/she can help with keeping his spine limber and comfortable.  The description in the dr's book here is extremely technical and so I won't bother to list the info.  I will send you the website address as soon as he gives it to me.

Hang in there,
Lisa

Carlyle Bear Co. Carlyle Bear Co.
Ft Myers FL
Posts: 492

Tammy,
Here is the link.  It is for the National Library of Medicine.  I hope this helps a little bit.  My thoughts and prayers are with you! :hug:


www.ncbi.nlm.nih.gov/sites/entrez

Us Bears Pennsylvania
Posts: 1,479

If you haven't already done so, start reading at Wikipedia.

http://en.wikipedia.org/wiki/Scheuermann%27s_disease

Wikipedia is a good "go-to" resource.  I wouldn't consider it authoritative in medical cases but it is a good place to start.

Down near the bottom of that article, it states that surgery is the last resort.  It describes the surgery, should that ever become necessary.  It also describes some other treatments.

You're right to be concerned.  After all, isn't that a mother's job?  bear_happy  bear_happy  bear_happy
However, it might be wise to temper your concern by doing as much information gathering as is practical.
Since you seem to be doing that already I'd say you are off to a good start!  :)

To be honest, I like your doctor's attitude about encouraging you to look it up on Google, etc.
Very few doctors, these days, will actually encourage patients to do that.  They always seem to want to be "godlike" and keep knowledge to themselves.  It's refreshing to see a doctor who takes the cooperative approach and encourages patients to learn.

On the practical side, if the specialist has a six month waiting list and he hasn't seen fit to take your son's case sooner than that, it might be because he doesn't think the problem is severe enough to warrant it.
If you called them up and they said, "Oh!  Come right in!", that's when I would be worried!  That must mean your son has a problem that can't wait.

You seem to be on a good path.  All I can say is to keep your chin up and don't lose faith.  You'll get through it.
By the time you get done with this, I'll bet you'll be saying, "Aw, I've had worse!"   bear_grin bear_laugh

Carlyle Bear Co. Carlyle Bear Co.
Ft Myers FL
Posts: 492

I would have to add caution about any information on wikipedia.  It is an extremely poor source for medical information.  I worked for a surgeon for years who would cringe when he heard a patient mention it.  All of the doctors that I have worked with promote reading about any condition be it on line or in a book but you have to be cautious about which sites to gather your info from.  Just my opinion. bear_whistle

eteddys eTeddys
Phoenix, AZ
Posts: 880
Website

Tammy,
I don't know anything about this disease but have been through the medical ringer since my early 20's.  Let me give you this advice and I hope you take itLOOSE YOUR DOCTOR!   If he doesn't care enough find some information for you, he's not worth a plug nickel.  When you find a new doctor and after you get your records transferred, write this clown a letter expressing your concerns about his apathy!  Make sure you have all of your records first.  I know you live in Canada where your medical system is different, but doctors work for us.  We PAY them for medical care.  They need to realize that patients will not put up with bad service in their office any more than we would put up with bad service at a restaurant. 

Good luck on your quest for answers.  And, try to find a specialist that you can get in to see sooner.  Or, just call that specialist every day to see if there are any cancellations. 

Hugs to you and your son!
Alison

Tammy Beckoning Bears
Nova Scotia
Posts: 3,739
Website

Thank you Lisa for the helpful link and your valuable input bear_original  I agree, wikipedia is so questionable.  Many pages can be edited by anyone.  My son showed me how !

Us Bears, I agree that it is wonderful for a doctor to encourage me to get involved.  I'll find every bit of info I can , believe me bear_original BUT, the doctor needs to provide some information too, that is his job, not just look at the x-ray and say I known nothing about this other than he many need surgery !  I know a GP doesn't know everything, but they must make an effort - Not leave my son and I  hanging with fear thinking surgery is the only option as we left his office ! Besides , with  this condition it continues to get worse until he is finished growing . He's already very self-conscious about it.   That sucks when you are a teen !  To me waiting 6 months is unacceptable if something can be done now to prevent further curvature and compressed discs etc., instead of surgery to insert steel rods and fuse things !  He can do a lot of growing in that time., as he was late starting to grow. 

Allison, that is my gut feel.   This was the first time I met this doctor  and I was shocked when I left the office.  He is my hubby's new doctor .  Our regular (female) family doctor ,whom we've had for years is awesome, but hubby thought our son might prefer a male doctor now.   My doctor will pull out her medical books if she doesn't know something while I am sitting there, find out what she can , then suggest things.   

ANYWAY,  I'm not meaning to bash the doctor as I don't know him yet really.   Just trying to educate myself to get the best support for our son bear_original  I am just so thankful it isn't really a life threatening thing if handled correctly.  I will keep faith, God is good  !

Thanks all !

Us Bears Pennsylvania
Posts: 1,479
yummyheads wrote:

I would have to add caution about any information on wikipedia.

I agree with you, in principle.  That's why I said that you should not consider Wikipedia to be authoritative in medical matters.

On the other hand, Wikipedia makes a great resource to get some quick information and to get you started on your search for some more authoritative sources.

Unfortunately, too many people don't know how to do proper research and will use Wikipedia as a primary resource.  Wikipedia is not, nor was it ever meant to be a primary resource.  People who use it as such are not using Wikipedia properly.

As I mentioned before, it is those doctors who have the "I am the authority" attitude who disdain publicly available sources of information like Wikipedia.  It's weird because they, above all, should know how to do research.  They should know that some sources are considered primary, trustworthy sources and others are considered secondary, auxiliary sources.

For a doctor to dismiss secondary resources, out of hand, is doing his patients a disservice.

Just for information, there are people at Wikipedia who monitor ALL of the information that's been added or changed on the site.  While they do not completely verify every piece of information that's altered, they DO stand guard to prevent people from defacing or putting in obviously false information.

Tammy;

I'm glad you have a good outlook on things.  It will help you cope with this problem.
I think you're going to do fine!   bear_thumb

2catkiss LALand Bears
Oregon
Posts: 448

Tammy - I'm so sorry about your son's diagnosis.  I don't know if it would help, but with arthritis of the spine and other joints, water exercise is often recommended. 
I use a flotation device around my waist and do "aqua jogging" in the deep end of the pool to keep mobility in my arthritic knee.
Because water lifts the weight from your body, there might be some exercises or stretching he could do that would keep him mobile and reduce some of the pain?  Have you spoken with any physical therapists?  I've had good success each time I had the need for it. 
Bear hugs
Lee Ann

Nurse Ratchet Forever Loved
Toronto
Posts: 8

Hi Tammy


I am so sorry to hear of your son's recent medical diagnosis. I found the following article written by a Canadian MD in BC. Please, please as an RN I ask you to be very careful in chosing a chiropractor if you go that route. There are several schools of thought in that profession ...some do not  believe in immunization...or the germ theory. I ask everyone to not email about immunization , please...that was my job for over 10 years. Ask an MD to refer you to a chiropractor. Our medical systems are very different but the Canadian system of universal health care for all is nothing like it has been portrayed during your recent debates over health care.


http://emedicine.medscape.com/article/311959-overview

All the very best to you and your son on this journey,

Nurse R

binglebears bingle bears
Upstate, NY
Posts: 1,559

Hi Tammy, :hug:

I'm not sure what to say--I wish I had some profound wisdom that could alleviate all of your and his fears.  It does sound like he needs a different doctor.  I've had a lot of health issues in the last 9 years and nothing helps like a good doctor.  I don't mean a doctor that has all of the answers; I mean one that listens and researches and keeps trying to find different options and will admit when he or she doesn't know the answer.  But not one that leaves you "high and dry."

The website that my current doctor recommends for information is www.WebMD.com .  In addition, I also like the Mayo Clinic website-- www.mayoclinic.com .

I've never heard of Scheuermann's Disease, but the little bit I did read about it made it sound similiar to scoliosis.  I could be very wrong here.  However, I did see that sometimes braces are recommended to straighten the spine (before surgery is considered).  This sounds similiar to the treatment for scoliosis.  I do have scoliosis and I did wear a brace while in high school.  They caught the scoliosis rather late in me, but the brace did help a bit.  Because my curve was in the lumbar region, I had what they call a Boston brace--like an incredibly thick plastic corset.  There were also braces called Milwaukee braces for a curve in the upper back.  I can honestly say that I have not seen one of these since I was in high school.  Maybe they have found a better style brace for that area of the back.  You may remember the Milwaukee braces--they consisted of metal bars and went from the hips all the way up to around the neck and under the chin.

The teenage years are such a hard time to feel "different."  If you would like more information about my experiences with a brace and/or suggestions for dealing with it, please feel free to email me and we can "talk" more about it.

In the meantime, know that many are thinking about you and your son.  I'm holding you both in my heart. :pray:

Lots of hugs,  :hug:  :hug:  :hug:
Cheryl

Laura Lynn Teddy Bear Academy
Nicholasville, KY
Posts: 3,653
Website

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Tammy I know nothing about the disease... but wanted to send you hugs... :hug:  :hug:  :hug:  :hug:

Rebecca Posts: 2

Hi there Tammy, I actually found this forum while looking up Shermanns Disease myself! I am 16 now, and was diagnosed with it at the beginning of the year. I am currently well hopefully going through the worst stage of this! How is your son now?? I am going to lots of physio and having traction as well. For the last 2 week I have had numbing of the one leg which has been concerning, but have looked it up ands seems to be a disk that is pushing into the spinal colum from which I have read up about. Let me know how your son is now as I want to know if he has relief of pain and what helped him!

Rebecca

Teddybear Posts: 97
eteddys wrote:

Tammy,
I don't know anything about this disease but have been through the medical ringer since my early 20's.  Let me give you this advice and I hope you take itLOOSE YOUR DOCTOR!   If he doesn't care enough find some information for you, he's not worth a plug nickel.  When you find a new doctor and after you get your records transferred, write this clown a letter expressing your concerns about his apathy!  Make sure you have all of your records first.  I know you live in Canada where your medical system is different, but doctors work for us.  We PAY them for medical care.  They need to realize that patients will not put up with bad service in their office any more than we would put up with bad service at a restaurant. 

Good luck on your quest for answers.  And, try to find a specialist that you can get in to see sooner.  Or, just call that specialist every day to see if there are any cancellations. 

Hugs to you and your son!
Alison


Hi Tammy bear_original I agree with just about everything Alison is saying. I dont know about Sheuermann's disease either, but like Alison have hadmedical probs for years and doctors like the one you are describing are not worth a dime. I really hope the best for you and your son. I know what it's like to have back problems, been dealing with sciatica and a hernia for years.

gugu"s teddies gugu;s teddies
durban
Posts: 203

Hi Tammy
I dont know anything about your Sons Illness,be careful of DRS A Very well known Proffeser here operated on my Daughter for TOS shes been to hell and back for over a year, and had to resign her position as MD  WHY because she didnt have TOS
Seek a second opinion even if it means you travelling out of your home town
Good Luck and God Bless
Lots of Hugs Paula

dangerbears Dangerbears
Wisconsin
Posts: 6,021
Website

It was Rebecca who revived this post after four years. Welcome, Rebecca - It may be that Tammy isn't visiting the forum anymore. You could try sending her an email or private message using the links under her avatar photo.

Good wishes to you,
Becky

Teddybear Posts: 97

oops...thanks for that Becky...I hadnt noticed the dates when I responded...never the less, I hope Tammy and her son are ok


John

gugu"s teddies gugu;s teddies
durban
Posts: 203

Oh Boy just shows how clearly we look at things (dates) i do hope anyway all is well with Tammy and her Son
Thanks Becky for the info

Rebecca Posts: 2
dangerbears wrote:

It was Rebecca who revived this post after four years. Welcome, Rebecca - It may be that Tammy isn't visiting the forum anymore. You could try sending her an email or private message using the links under her avatar photo.

Good wishes to you,
Becky

I found this is desperation of finding out more info for Sherman's. I have sent Tammy an Email now. I really didn't expect a reply!

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