Tips for Living with Scheuermann's Disease!

"You have brains in your head.  You have feet in your shoes.  You can steer yourself any direction you choose.  You're on your own.  And you know what you know.  And you are the guy Who'll decide where you go."

Dr. Seuss

To do’s:

 

Finding a Physician

The type of doctor seen, and the person you see, may be the most important medical decision you make in terms of your future spinal health.  

 

The type of specialist would more than likely be either an Orthopedic Spinal Surgeon or Neurosurgeon specializing in spinal deformities (adult or juvenile). It would be best to make sure they have experience with Scheuermann's Disease by finding referrals, reading testimonials, or finding grades on the physicians.

You also may want to check our international DOCTOR DATABASE for physicians.  This database is comprised of specialists referred by people treated for Scheuermann's Disease and want others to receive the same excellent treatment.

The First Appointment with Your Specialist

13 to 16 minutes. That’s the amount of time the majority of physicians spend with a patient during an office visit, according to a 2016 Medscape survey.

 

Of the 19,000+ physicians who responded to the survey, roughly 21% of male doctors and 24% of female physicians spend 17-20 minutes with a patient. The survey confirms what most of us know about 21st century doctor-patient interaction. The time allotted to us is less than we want and often less than we need.

According to a SPINE UNIVERSE article, Spine Surgeon Lali Sekhon (MD, PhD, FACS) helps "Patients How to Prepare for an Appointment."

"While credentials, expertise and experience are critical considerations in choosing a doctor, equally important is finding a physician who inspires confidence, who listens to you, who is thorough and patient and is willing to answer your questions. In short, we all want a doctor who makes us feel comfortable and cared for."

What is the motto of the Boy Scouts?  Be Prepared.  Go into the appointment prepared and make the best out of what time the doctor has allotted for you.

 

Prior to the appointment, make a list of questions for the doctor about his/her experience as well as any questions that you have about your condition.  DON'T BE AFRAID TO ASK THEM!  Some may include:

  • How many patients have you seen with Scheuermann's Disease?  Do you have many in our practice or group?  Have they been children?  Adults?

  • What can be done to reduce the pain without surgery?  Exercises?  Diet? Braces?  If so, what braces do you recommend and why?

  • Are there exercises or sports that accentuate the pain or make the condition worse?

  • After the tests have been completed, please go through the x-ray/MRI with us and explain the problems with my (son/daughter) spine so I can understand.

  • If surgery is required, what will be the expected result?  Recovery period?  How many have you done prior to this surgery?

  • Are there things that need to be done (i.e. get strong and healthy) before the surgery to improve chances of success?

  • Are there any additional surgeries expected after the surgery?

  • What physical limitations will be set following surgery?

ALWAYS take someone with you on important appointments, if possible, so that you don't miss anything the doctor said during the appointment.

You can record your conversation/appointment, but make sure you are upfront with your doctor, if you can't take anyone with you.

Don't forget to take any test results and films with you so the physician has all the info they need to make a proper diagnosis and treatment.

Take a list of any medications you are on as well as treatments and surgeries that you have had in the past. 

After the appointment, discuss the results with the person who accompanied you to insure you both got the same outcome. But remember, YOU have the final decision and need to be comfortable with the doctor, that is most important. If you are satisfied, make a follow-up appointment, if not, work on finding another surgeon who fits your needs better.

Tips for Before and After Your Surgery

 

Surgery is a scary thing, especially when you have never gone through it before.  Combine that with the oftentimes serious nature of surgeries for correcting Scheuermann’s Disease, and it can be really nerve racking.

 

There have been so many inquiries into The Scheuermann’s Disease Fund from people asking for advice on what to do before and after surgery to make their lives easier. 

 

So we (with our good friends Monica A.H. and Jessica M.!) thought we would ask those who suffer from Scheuermann’s Disease, and have had corrective surgery, what they have done before and after surgery to make their lives easier.

 

Here are their responses.  Hope they are helpful….

 

*Remember, it is recommended that your doctor be consulted before trying anything that may risk your health or welfare......

 

Before Surgery

 

  • We made sure never to take anything of value that would be out of my sight (i.e. wallet). But we took extra pair(s) skivvies, toothbrush, toothpaste, razor, shaving cream, Gatorade, snacks to get the horrible taste out of my mouth. Never worry about prescriptions because hospital provided them.  - Doug S.

 

  • The only thing I was allowed to wear at the hospital was the gown, so I only used my hygiene items, slippers, and laptop. Toothbrush, lotion, chapstick was what got me through. - Ashley K.

 

  • Magazines. Gum. If you have long hair, please have someone brush it while in the hospital. Odd, I know, but my husband never thought about it and I had a knot that had to be cut out! I also remember trying to make a drink in the middle of the night and it was too heavy for me to pick up and pour.  - Ginger H.K.

 

  • Another thing I found good in hospital is one of those little micro fiber log pillows, great to prop up arms/neck when in pain and normal pillow was too high, also a little ext lead in hospital to charge ya phone beside you when you can't get up and are stuck in bed. - Andrew D.

 

After Surgery

 

  • At home you need lots of pillows to prop you up and keep you comfortable. I had a hospital bed prescribed since my bed is memory foam and I sank in it. I also recommend a shower chair and one of those shower heads that has a hose and come off for you to hold. Raising my hands above my head was hard for awhile. Gatorade and yogurt or easy to eat items were also great. I completely lost my appetite after surgery. - Ashley K.

 

  • A long grabber for home so you can pick things up. Used it way more than I thought. (Still do.). A raised toilet seat. - Ginger H.K.

 

  • I second the elevated toilet seat for when you get home as well as lots of pillows. I am tall, and I also think my bed was elevated with blocks for a while after my surgery so I could get in and out of it more easily. (I had my surgery white a while ago, so some things are a bit fuzzy.)  - Allison H.S.

 

  • Oh yes, the grabber. There's a kit called a "hip kit " that people told me to get. I def recommend it for after surgery. It has tools to help you get dressed.  - Ashlee K.

Some Other Helpful Tips Offered by Others with SD

 

We are fortunate to have some excellent Facebook support groups solely dedicated to help those of us, and our loved ones, suffering from the effects of Scheuermann's Disease (sdfund.org Home Page).  These groups are great places to talk to others who understand the disease and talk to others who may have the same frustrations or experiences that you may be going through.

One of the best questions asked on one of these sites was this:

"If there was ONE thing that you couldn't live without AFTER surgery, what would it be?"

  • Taller toilet seat

  • Silk-type sheets

  • Lots of pillows!

  • Neck pillow

  • Grabber in case you drop something

  • Dry shampoo

  • Pain meds

  • Hospital bed

  • Handles on each side of the toilet

  • Recliner (electric if possible)

  • Shower seat

  • Something to help you wipe your bottom….

  • Ice pad machine (https://www.facebook.com/photo.php?fbid=10212759837577550&set=p.10212759837577550&type=3&theater)

  • iPad for films

  • Foam bed topper for hospital

  • Bookholder (https://www.amazon.com/Covers-Paperbacks-CookBooks-TextBooks-Magazines/dp/B000ABHIXG/ref=sr_1_1?ie=UTF8&qid=1491252542&sr=8-1&keywords=levo+book+holder)

 

It may be a good idea to consider trying out some of these items prior to your surgery to see if they are to your liking and within your budget.  It is better to have it and not need it than to need it and not have it.......especially while you are recovering from your surgery.

 

Below are some additional ideas and practical, useful tips that others use to make their daily lives a little bit easier once the healing starts.

 

*Remember, it is recommended that your doctor be consulted before trying anything that may risk your health or welfare......

 

 

  • Try A back support when taking trips in the car... a life saver for long journeys.

 

  • A tens machine session before bed can be the difference between no sleep and a decent night's sleep.

 

  •  A floor exercise that goes like this:  towels are rolled up like tubes and placed

    • #1. Right underneath where the tailbone hits the chair (as if sitting on a rail of sorts) 

    • #2 towel roll goes behind the lower back. This essentially forces the body to *somewhat* sit as straight as your body can sit naturally without actual force, and 2 better for circulation all together as it forces our bodies to semi-correct while (correctly) using this method.

 

*I am still working the kinks out myself in getting the situation vs floppy towel thing right.  From what Ive been told, this is one of, or the 'towel method' for sitting in chairs, etc.

 

 

 

  • One tempurpedic chair cushion at home and one at the office. I use one of them in the car for long trips too. Helped me get through college also. About $100 each but worth every penny.

 

 

  • Eating healthy & weight training has always been best for me. And laying down, of course.

 

  • A tempur pedic mattress topper helped me sleep better as I am not waking up in pain and as stiff!

 

  • A foam roller (denneroll kind of does this) is totally indispensible for me. When I walk or stand or basically do anything, laying on something that manipulates my spine in the opposite direction feels super good for me. Before I found these foam things I used to use rounded arms of sofas! It really helps me.

    • The down side is that it does retain heat and becomes hot unfortunately.

 

  • The above is more for the spine, but I also suggest something like portable massager for your shoulders which are usually sore (at least mine are), something like this: (www.brookstone.com/.../product.../700x700/728227p.jpg) or a rice bag that you can put in the microwave which helps inflammed muscles if you need something cheaper.

    • And this way you don't have to bug people for massages when you're ready to cry from the pain.

 

 

 

Living, Dealing, and Planning  - By Doug Strott, Founder

 

Helpful Tips

Living with chronic pain is grueling.  It strains and taxes your mind and your body.  Climbing flights of stairs now takes more out of you than playing a game of hoops.  It becomes all-encompassing and makes you continually wonder, “How did I get to this point?”

 

Ok.  Yes.  Sometimes I do feel this way.  And yes, there remains a small percentage of my time wasted on self-pity.  But it is a SMALL amount most days.  Many times it has been difficult for me to see the light at the end of the tunnel and find things to look forward to.  But that is MY fault. 

 

Below is one of my favorite family sayings:

 

 

“Everybody has problems.”

Nana Houston

 

 

Nana Houston was my maternal grandmother.  She had a quick wit, comedic timing, and wasn’t shy about whacking you with her cane if you got in her way.  She was a riot! 

 

You would never have known that she was also made of steely resolve. 

 

Nana lived through the Great Depression, as did all my parents and grandparents.  My Mum tells a story about the family sitting around the dinner table when she was young.  Conversation would turn to hard times at home and those confronting neighbors and friends.  Nana would always end the conversation with, “Everybody has problems.”  And that was it.  No more complaining.  Thank God most of us never had to experience those hardships. 

 

So when I start to complain, I remember Nana Houston. I try to follow in her footsteps and be upbeat, positive, and thoughtful to others.  Does it work all the time?  Absolutely not.  Sometimes I am an idiot and an ass to the people that I love the most.  I realize that I am human and screw up on a regular basis.  But I honestly do try to make people smile.

 

It is like going to the movies.  I never understood why people go to see sad movies.  Who wants leave a movie feeling worse than when they went in?!?  I am all for those sappy movies where the hero survives and rides off into the sunset.  Or movies that are funny or at least something blows-up.  When people meet me, I don’t want them to see my scars or my pain; I want them to see me smiling.

 

The bottom line is this:  everyone deals with their own demons in their own way.  But I am hopeful that people living with pain can get a glimpse of my struggles and how I have battled through them.

 

 

"Experience is a hard teacher because she gives the test first, the lesson afterwards."

Vernon Saunders Law

 

 

I am probably the last person who should be giving advice on anything, but there are certain things that I learned through all of my surgeries and incapacities.  One of my good friends once said to me, “You don’t have to live through something to learn from it.  Others can live through it and tell you what they learned so that you don’t have to make the same mistakes.”  Smart guy.

 

And that is why I am sharing the following tips.  Hopefully one or two will help make your life easier.

 

  • Trash baskets are placed in corners so that I don’t have to bend over to pick up stray trash.

 

  • I take extra Calcium and Vitamin D.  It may help my bones fuse.

 

  • I wish I was diagnosed with Scheuermann’s Disease when I was a child.  Participating in jarring or pounding exercises (i.e. running, basketball, racket sports, football, kickboxing) really hurt my long term prognosis.

 

  • Finding humor in the little things and being able to laugh at myself has not only helped me, but it also makes people around me feel more at ease

 

  • Using an orthodontic night guard (bit) while sleeping has really reduced the number of broken teeth from grinding.  I lost count at 17 teeth......

 

  • The reflexes in my hands and arms have diminished over time.  I tend to have what my Mum calls “the dropsies” (go to pick up something and frequently drop it).  Now I try to take my time when doing activities or picking up something.  Patience is the key, but I was never really good at being patient.

 

  • Doing yard work was never my specialty.  Especially raking leaves. Well, I have just about stopped all yard work.  No more raking leaves or shoveling snow.  The bending motion is all but impossible for me to do without pain.

 

  • Due to my nerve problems, my arms and legs get extremely itchy (especially after surgery).  Benadryl every once in a while helped reduce my scratching.

 

  • Garbage cans with the foot pedal that opens the lid has reduced the amount of bending at the waist.  It’s much better than having to bend over to open and close the lids by hand.

 

  • I bought a nice 4 door sedan after having SUV’s most of my life. However, I found that bending down into a sitting position in the car was painful, plus I really was not very comfortable in a car.  So, went back to an SUV.

 

  • My house has two floors and I only have so many sets of stairs that I can take in a day so I try and keep my most often worn shoes on the first floor.  It limits my daily steps.

 

  • I have terrible muscle spasms in my diaphragm and neck.  Drinking tonic water (quinine) seems to have helped reduce their frequency and lessen their severity.  I also try to keep a small bottle by my bed at night.

 

  • There are some things that have helped me with certain activities, including

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  • Helps with reading in just about any position

 

 

 

 

 

 

 

 

 

 

 

 

 

  • Finding a chair, recliner, love seat, couch is a personal preference.   This Lazy Boy was perfect for me because I am larger framed (it is no longer manufactured) but you may find something that is completely different for you.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Reading books can sometimes be difficult on the arms and neck.  Using the Kindle, magazine, or book with the Levo book holder makes reading much more enjoyable and reduces my pain and headaches.

 

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