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Schuerrmanns Disease

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Chronic Pain
What should I do
surgery - 0.0% - 0 votes
physical therapy - 100.0% - 1 votes
give up - 0.0% - 0 votes
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Posted 7/11/2013 2:21 AM (GMT 0)
So I was recently diagnosed with schuermanns disease. After living through years of back pain my doctor finally sent me to a doctor who specialises in spine deformities. The only problem with this, was that I'm 17. Immediatley after I walked in to the doctor rooms his eyes widened. He was speechless after the physical and really did not have mich to say. He said that I had kyphosis. At the time I had no idea what that meant. The doctor said that it was probably postural only and that a year of bracing should correct my problem but after i had xrays done he told me what was really wrong with me. The way he explained it was by comparong me to an old woman in the fact that I slouch when I sit.(great thing to hear I know) he said that my case was overly sever. Most people who have kyphosis get surgery of they're arch is anywhere near 65-70 degrees. Mine is 85. The pain is nothing to laugh at. It curves so bad my spine is crushing my lungs. Since I'm so young, he didn't know what to do so he sent me to boston hospital to see a different doctor. This doctor aswell didnt know how to go about fixing my problem. Apparently surgery is insane. He told me what it entailed. In GREAT detail, trying to get the very essense of it out of my head. He told me that if I was more active I wouldnt feel the pain. (edited by moderator). I can't be active because I'm in so much pain. I would just like to know if anybody has two (or three) cense to add to this, as for me, I'm fresh out of ideas.:

Post Edited By Moderator (Blessedx8) : 7/11/2013 12:51:48 AM (GMT-6)

Posted 7/11/2013 4:41 AM (GMT 0)
Welcome to the forum, but I'm sorry that you're dealing with so much pain and need to be here. I really don't know anything about your condition. It sounds really painful and like the Dr's are really not of much help right now.

I would say don't give up and keep on searching. Have you been seen at a teaching medical center? Sometimes, those are the best places to be seen. As that's where the medical students are being taught and trained. Some of the top doctors are at the teaching hospitals. There are also great medical centers such as John Hopkins, Duke, Northwestern, NIH, Mayo Clinic. If you could get a referral to one of these places, maybe you could find the right doctor to treat you.

Are you on pain medications now? I'm sure you've been told that exercising is helpful, as well as other things like Physical Therapy, heat, ice, muscle relaxers, acupuncture, biofeedback, massage, TENS units, stretching as well as pain medication. When exercise is recommended it doesn't necessarily mean go out and lift 100lbs but maybe just walking for 5 minutes and gently stretching can help.

I suffer with severe pain 24/7 and I use all sorts of things to try to cope with my pain. As do many of the folks here. We understand pain and how overwhelming it can be at times. Please come and vent anytime and know that we will listen and offer support the best way we can.

I know I haven't offered much in a way of solution, but I wanted to welcome you and tell you I'm sorry that you're hurting so bad. I hope and pray that you'll find the right Dr who will help you and get you out of this terrible pain.

Hugs,
Barbara
Posted 7/11/2013 7:01 AM (GMT 0)
Zackb,

Welcome to HW.... but I'm sorry you have to be here :(

First of all.... I know this disease has been discussed at some point here on the CP forum. I'll try to find it and link it here. It's good that you started a new thread.... but maybe doing some reading would be helpful, too.

I'm sorry you are suffering so much :( I have to say that I know nothing about that condition.... but I do know about pain. I completely understand the "catch 22" about hurting too bad to exercise... but needing to exercise to make your condition better. As mentioned before, maybe just starting w/ some light stretches and walking.

You asked on your poll about "giving up" - and you can't do that :) You are only 17... I've got a son your age.... and you've got a life in front of you! I know it's hard when you are hurting... but you just have to keep searching as Barbara said.

She mentioned other things that are helpful - physical therapy... heat... ice... There are medications; I do hate to see anyone so young get started on long-term meds - but maybe a short term muscle relaxer or something might help.

I'm going to search out those prior posts and link them. Also, keep posting here for support.

Take care, Tina
Posted 7/11/2013 7:03 AM (GMT 0)
www.healingwell.com/community/default.aspx?f=16&m=2366135
Posted 7/11/2013 8:15 AM (GMT 0)
Zackb
I am so sorry you are in such a predicament. I understand about being young, in pain, and feeling like you don't have anywhere to turn for pain relief. Especially when the doctors don't know what to do. I would suggest goggling specialists for your disease and seeing which ones are closest to you then trying to get a referral to see them. If one doctor isn't up to the challenge of caring for you then move on to the next one. They all can't say I don't know what to do. A lot of doctors like to cookie cutter their patients with the same fix all solutions so you just need to keep trucking till you find one doctor who won't give you the same hopeless answer. I would do what Barbara suggested and try physical therapy, some yoga moves might help to because of the low impact stretching and exercise or tai chi. It's slow low impact and you get to work out with out exacerbating your pain level to much.
Keep checking in with us and letting us know how you are doing and if you ever need to vent feel free to hit me up on here or via my email.

of luck
Morgan
Posted 7/11/2013 1:34 PM (GMT 0)
Hello Zack and welcome to HW. I always hate to see someone in such pain at such a young age but you have the advantage of decades ahead of you for cures and treatments to be discovered.

As Tina said "giving up " should not even be a choice. Each new day Zack brings hope for you. New Drs and research being conducted means there is always a chance.

Many of us lived in times where polio had no cure,HIV and cancer were death sentences,no vaccines for meningitis or chicken pox. The only OTC pain meds were aspirin and the great discovery of tylenol. Transplanting lungs and livers were impossible and stem cells were heard of only on the Sci-fi channel.

At your age you will see many more amazing discovery's as we turn out brighter more inquisitive and daring medical students. Giving up? No way would you want to miss the opportunity to possibly lead the way to a cure,treatment or better understanding of this disease.

I urge you to seek the help of a University hospital with research and teaching abilities. They have far more capabilities and much more complex understanding of diseases and cause and effect.

Remember and you will see many of us repeat this over and over, Board certified Surgeon. Its important to know the credentials of the Drs that treat us. Med school is like passing grades still graduate and all Drs are not equal.

Its said we investigate the new car we're buying more then the Drs we place our health and life with.

Hang in there,ask questions, research every thing you can on your diagnosis as this is your best way to help yourself.
Posted 7/11/2013 2:18 PM (GMT 0)
Hi Zack and welcome to the forum. I am a little familiar with your situation from reading about it. We have had people come thru here that has this disease and because we do not have an active forum for it or other members with same they have moved on.

It does seem sound unfair to see someone your age suffering but there are a lot of young people out there in pain from various ailments. Of course being in pain makes everything you want to do seem impossible, but try to remember this, you can become very innovative & make things happen.

I completely agree with getting into one of the teaching hospitals. They have access to much more than our mainstream MD's and have helped lots of people that thought things were pretty much hopeless.

Yes, it is important to stay as active as possible. I know you think its easy for me to say, but like you I am a chronic pain patient of 20 some dd years. Get in a swimming pool where there is little chance f injuring yourself because you are weightless in water. Being sedentary will only cause more problems.

Something else to consider is getting some counseling with say a psychologist that works with young chronic pain patients. I am not saying you are wacko nothing like that at all. You would be amazed at how a good psychologist can be helpful. They come up with suggestions that we could never think of, so give that consideration. A lot of us have done this because lets be honest, it gets overwhelming at times.

Don't give up, keep pushing for real help an answers. Take care....Susie
Posted 7/11/2013 5:34 PM (GMT 0)
Hi there...


Wanted to share a link that gives a lot of good information about SD..


http://www.spine-health.com/conditions/spinal-deformities/diagnosis-and-treatment-scheuermanns-disease


If I may ask a few questions....


What are the Drs. saying about your spine growth? At 17....should be close to the end of that period.


Have they been having you wear a brace for the last few years off/on? I'm just shocked that your first back Dr....(What kind of Dr. was it?) Didn't see the changes as no one goes from the regular percentages of 20%-50% to 85% overnight!


And even though I know the surgery sounds scary....It really can be the best answer for someone with the degree of curvature that you have. Otherwise, I can't imagine with you describing that it is "crushing" your lungs..that you are able to do much of anything now like work, play, drive, go out with friends, get ready for college, etc.....


It just seems so awful that you weren't able to with your parents, find a Dr. all these years leading up to this to help you not get to 85%....


And if you can't do all the conservative things to help, then surgery is really the only option. As you will read in the link I gave you, because the fusion is in the thoracic part of your spine, it won't usually effect the motion of your back and cause further problems or pain down the road.


So, I would do as others suggested and work with your parents on finding the most skilled Orthopedic surgeon who has done many of these surgeries and make the jump now because being young, you have a great chance at recovery, healing, and getting on with the rest of your life in a much better place!

Hopefully they will also be ok with helping you with your pain until surgery can be done as well....

Keep us posted..

Posted 7/19/2013 4:56 PM (GMT 0)
Wow I can't imagine the pain, emotionally and physically, that you must be going through. As advised above try find the best surgeon you can and take it from there. Keep us updated with your progress.
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