Scheuermann's Disease

Hi

I have just been diagnosed with Scheuermann's Disease which has been causing chronic pain in my back. Has any one got or heard of this my rheumatologist said it was a rare condition initially he thought I had Ankylosing Spondylitis but my MRI came back with SD.

Nothing much they can do apart from manage my pain level any information would be helpful.

Hibee

Hi Cogito

Thanks for your reply yes I have googled the condition and found some good information. The problem I have is I am 36 so fully grown so a back brace would have no effect on improving or straightening my spine. The rheumatologist said there was a lot of ware and tare at various points down the spine due to the curvature of my spine and also some degenerative disk disease.

I don't really want to have surgery at this point in time but after looking at some SD forums it seems a lot of adults opt for the surgery. I am going to a PT lead exercise class which starts next week which I feel could help a lot and the consultant wants me to raise the Lyrica to 600mg per day but I have my reservations about that. I hope things get better for you, I will ask my doctor on Wed re injections.

Thanks again

Hibee

Hi Suzane


Thanks for the reply not many people seem to have heard of SD so trying to find out as much as I can on the web. The pain I have been getting in my back has been unbearable I went to see my doctor this morning and he had never dealt with a patient with SD but is very understanding and we get on well. He has prescribed me some strong pain relief so hoping that will ease the pain and start PT next week.

If surgery is required the would put a metal rod on my spine with a view of trying to straighten the spine to reduce the curvature sounds painful to me so will be looking at other things first and that would be a last result.

Thanks again

Hibee

Hi Draka

Scheuermann's Disease is very rare from what I have read only 1% of the UK population and 8% of American population have this disease. Both my rheumatologist and family doctor had not heard or treated someone with the condition it basically causes a lot of ware and tare in the spine due to a curvature of the spine of over 45 degrees which puts extra pressure on the vertebrae of the spine.

In most cases it is piked up in childhood and a back brace is worn which stretches the spine back to straight and has good results in reducing the curvature and pain. Unfortunately if it is not caught before early it causes problems in adulthood with patients presenting with severe back pain.

My MRI showed that I had a lot of ware and tare in the joints of my spine and a curvature over 45 degrees it also showed 3 bulges which need to be monitored incase the herniate it also showed the there was degenerative disk disease. The main options seem to be pain management with various pain medications and physiotherapy and light exercise. In severe cases and if the above do not help with pain surgery to straighten the spine is an option.

I am still doing research myself to find out as much as I can as it seems doctors not really upto date with how to treat this condition.

Hibee

Hi Susie

No not in the care of a neurosurgeon or an orthopedic. My doctor is reading up ready for my next visit and hopefully we can come up with a plan. I think the PT is going to help so fingers crossed on that one my doctor has put me onto codeine 30/500 which I started last night.

I have been feeling really ill today in fact I was violently sick not sure if I have a sickness bug or the codeine is not mixing well with the other medication I am on?? I was on Naproxen 500mg x 2 but I was getting bad stomach ache so stopped.

I spend most of my time in the anxiety forum and this SD is something I could do with out. Thanks for the warm welcome here I appreciate your reply's.

Hibee

Hi

Welcome to HW and thanks for the reply. I start PT next week and I have a good doctor and I think he is looking into getting me into see a chronic pain specialist. I until last year was a outdoor pursuits instructor so like you have speeded up the process so I have a lot of ware and tare on my spine. Marijuana is not an option for me as I have various mental health diagnosis and suffer with severe paranoia.

Hibee

GPlayer,

Just a quick note to welcome you to the board.... and thank you for providing helpful information on this thread. I'm sorry, though, that you've struggled w/ chronic pain.

Hope to see you posting more... --Tina

Hi

I agree the pain in unbearable at times and constant pain. I was told by my PT today that I need to accept I will have chronic pain and will have to manage it the best I can which is a depressing thought. There really is not much information out there for adults who have this disease. It has been good to meet others here so thanks for the replays.

Hibee

Hi

Good to meet you welcome to the forum. You are right SD is very rare and I have found that a lot of doctors don't really understand the pain that this can cause and feel that it is an adolescence disease which you grow out of, This is just not true I have had years of chronic back pain which has been really bad this last year.

My MRI also showed a lot of ware and tare of the vertebrae in my spine as well as other problems. I am doing some physiotherapy at the moment which has helped loosen my lower back and decreased the pain but my upper back and neck are still very painful and don't seem to be improving with physiotherapy.

To answer your question I would say that light exercise if you can will help improve things. The chronic pain team can also help with pain relief and things such as acupuncture may also help with the pain. I use a tens machine which you can buy from a chemist or on the web which has helped reduce pain levels. I am also due to start a mindfulness course which is about living in the moment which I have heard can be really helpful for people who have chronic pain.

I think you have to do all you can to manage the pain the best you can which can be a hard thing to accept and I am still coming to terms with that myself. Surgery can be done but you would need to get advise from your doctor on that, This is something I am going to be looking into myself. I take a number of medication to help with the pain and have found pregabalin to work well for me.

I hope you can find a understanding doctor who can give you some proper advise about how best to move things forward. There is hardly any information on Adult Scheuermann's disease on the web and a lack of understanding by the medical community can be a real hinderance.

Hibee

I am so sorry about your recent diagnosis of Scheuermann's Kyphosis. I too have the genetic disorder. Because of the pain and the meds I have to take, I had no choice but to take disability retirement from a job I LOVED! I was a high school Biology teacher. From T3 to T11, my intervertebral discs degenerated completely. Only ligament hold my mid back together! Because the thoracic discs are gone, this creates a smaller exit for spinal nerves eminating from the spinal cord. I am left with eleven pairs (yes, 22 in all!) of severely pinched spinal nerves. This is ultimately the source of my excruciating pain. I have been seen repeatedly at Johns Hopkins Hospital. The last two doctors I went to see (one orthopedic, the other a neurosurgeon) BOTH were infatic that NO surgery be done, but rather PAIN MANAGEMENT be the only source of treatment. I wear a Fentynal Patch, and take Oxycodone for break through pain. This unfortunate disorder has dramatically upset my life. I pray your case is not as bad, nor involves as many intervertebral discs as mine. If I can help, please ask whatever you want. I have been living with Scheuermann's for YEARS! My sincere prayers are with you. Trust God! He has been my source of HOPE in this seemingly hopeless time. or

Post Edited (EJD) : 7/31/2012 12:25:44 AM (GMT-6)

Hi EJD and welcome to the chronic pain forum. I am glad that you found us but sorry you have to be here.

Yes, it just stinks when our bodies give out on us and then the domino effect sets in and you start seeing pieces of your life being stripped away, layer by layer. For some of us its our employment, loss of financial freedom, loss of friends, hobbies & ect. Been there & done that. Now I am on my second life that I have been building. I am not as active as I once was but I give it my best shot, lol.

I have always heard that drs will not operate on the thoracic spine because it is too dangerous. I hope you can at least keep you pain at a level that still gives you quality life.

I see that Hibee popped on and said hello to you, please feel free to pop over and visit Hibee at the anxiety forum too.

Anyway welcome aboard. Susie

I would definitely find a Board Certified Neurosurgeon/Orthopedic surgeon as they should definitely know about Kyphosis (Scheuermann's disease...curving of the spine) and know how to treat it. It is listed as one of the diseases on my spine institutes website. So if a Dr. is saying they don't know of this I would seek out other care.

What degree is yours? Surgery is really only recommended as an adult if it's over 60 degrees or if causing difficulty in breathing. (Unless it was caused by an infection or tumor) and needs immediate intervention.

I have a smaller version of it at 19 degrees as many of us spineys with DDD and Spondylolisthesis have to be deligent of watching out for this.

So once a BC Neurosurgeon or Orthopedic surgeon diagnoses this, they should be able to refer to a pain management Dr. who also understands that this is a painful condition that needs treatment just like many other spine issues.

Hibbee and HJD...have you all been prescribed a brace to wear and physical therapy along with the medication?

I guess I am blessed to live in a very populated area to find Drs. who know about these type of spine conditions...So I am hoping that you both can find good Drs. who treat this.

Ahh...I missed the part for your Dr. as I was focusing on the sentence where your pain Dr. doesn't believe you...sorry about that I misunderstood.

My particular Neurosurgeon still believes in a brace and PT along with medication for adults as the kyphosis usually comes on slowly over the years with the curving and not all at once. It's all just meant to help with the symptoms not as a cure.

I've known two people who had the surgery to help them with this but they were over 60%.

So yes, most people stay away from it and good Drs. will not recommend doing the surgery unless completely necessary.

I hope you can find a good PM Dr. that accepts the diagnosis and will help you manage your pain.

Post Edited (Snowbunny21) : 7/31/2012 1:24:15 PM (GMT-6)