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Scheurmann's Disease

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chantellecole1989 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chantellecole1989 Quote  Post ReplyReply Direct Link To This Post Topic: Scheurmann's Disease
    Posted: Jun/27/2017 at 11:15am

Scheuermann's disease: - What a name to be talking about, not even the doctor’s that I went to see had ever even heard of it which was hard then to find out how rare the disease is to the point where only 1% of the uk population suffers from it! How is anyone meant to deal with that information on top of finding out I have a broken back and fractured neck along with damage to my T9,T10 &T11 then a herniated L3, nerve damage to my left side , across both of my shoulders and down my left legCry

 So if there is anyone who can help me to cope with this constant pain I suffer on a daily basis, I take a mixer of medication, so I am about to get out of bed in the morning, there really has to be a better way to live my life, Well at the moment I am not living I am just a being, within my eyes I don't have a purpose in life anymore since I was forced to give up work a year ago due to this pain.    

chantellecole
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Stevie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/27/2017 at 6:13pm
Can you give us a bit more information? This disease generally strikes in young people and can be self limiting. What prognosis have you been given?

I'm terribly sorry that you are enduring this. I'm hoping that you are getting the best treatment options possible and please let us know more about yourself. Welcome to our site:)

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tkay Quote  Post ReplyReply Direct Link To This Post Posted: Jun/27/2017 at 6:18pm
Hi chantellecole.
I had not heard of the condition you mentioned above.
The description sure gives light to what you are having problems in the thoracic and lumbar areas of your spine. To have your back and neck broken along with this I am sure you are in quite a bit of pain.

It sounds like you are going through acceptance that you have a life long condition of pain. This is a step in the grieving process.
While you are looking for ways to live your life, keep in mind that all of us go through this process.

I suggest looking at what you can go instead of looking at what you can't do.
You may be surprised that your list of can do's is still a lot of things.


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chantellecole1989 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chantellecole1989 Quote  Post ReplyReply Direct Link To This Post Posted: Jun/28/2017 at 5:12am
UnhappyCry Scheuermann's disease is more commonly found in children and then the treatment is for them to wear a brace to straighten their spin. However it can be found within adults but it is harder to treat! The only treatment for an adult is pain management and physiotherapy, however physiotherapy doesn't always work for everyone and within some people it cause them more pain. Scheuermann's disease is more commonly found within the top of someone's spin however mine has been found in the bottom which made it harder to find.

I have had a broken back in two places one since 2013 and the other since 2014 however was only made aware of it on 12/7/2016 after having x-rays done on the 5/7/2016. Really bad I know the doctors I was with then refused to look into the pain I was suffering. Even when I had my car accident and struggled to move, walk, stand 17/5/2016, they never looked into it I had to push and push and finally got my MRI scan on the 4/3/2017 almost a year after my accident, to then be told all of this information I am still feeling numb to this day, I just don't know how to cope with the pain all the time............I really can'tCryCryCryCryCryCryCry
chantellecole
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sara1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun/28/2017 at 11:01pm
Hi Chantellecole, I hope you get a referral from your family Dr. for a Pain management Dr. at a Hospital Pain Center where they can help manage your pain. Never give up looking for relief. I know the waiting lists are long but tell them to put you on the cancellation list and may get in sooner. I went to several Pain Management Drs before I found my Pain Dr. he does the procedures for pain control and advises my Family Dr. on the pain meds. Take care. Sara
DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing Neck-reverse Lordosis of c-spine C6-C7 with impingement, numb hand and sore outer elbow. Bursitis to both knees. RN
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jun/29/2017 at 9:54am
Have you spoken to any Dr about a Spinal Cord Stimulator?

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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chantellecole1989 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote chantellecole1989 Quote  Post ReplyReply Direct Link To This Post Posted: Jul/01/2017 at 5:17am
I have and in the end I had to change doctor's due to lack of incompetence on their behalf. Nothing I seemed to say would make a difference I was getting nowhere! Since being at my new doctor's they are trying to find out about my appointment got my another one with a set of specialises I have seen before but they want to seem how I am now. Plus the are also looking at changing one of my medications to a stronger on as they had to increase another one of my medication.  
chantellecole
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stevie Quote  Post ReplyReply Direct Link To This Post Posted: Jul/01/2017 at 2:00pm
I know how terribly frustrating this entire process is. It's exhausting and especially so when having to deal with this when the pain is excruciating.

All I can say is take it a day at a time and NEVER give up. Those of us who have found at least partial pain relief have searched, tried every med and available treatment options offered and refuse to take no for an answer. You are doing just that. Please know that we truly understand and wish you the very best.

Please donate to help Chronicpainsite.com continue to help others.

My journey with chronic pain began over 30 years ago, while as a young nurse working spinal rehab, I injured my back lifting a patient. I am now fused from L2-S1. I have multiple thoracic and cervical issues. I'm a retired RN/PA and I know and understand the frustrations on both ends of the treatment spectrum of dealing with CP. It's been my goal since 2008, when we started this site, to reach out and help as many people in pain as possible. We will continue the fight as long as we can. Please, if you can help us continue to help you and others, donate. Thank you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Quaver Quote  Post ReplyReply Direct Link To This Post Posted: Jul/02/2017 at 9:12am
Hi chantellecole1989,

I am so very sorry to read the story of your pain and suffering. You clearly urgently need help and support. There is a new type of spinal cord stimulator which I know is available on the NHS and moreover that it really, really helps. A friend of mine has one. She is a member of this site. I shall ask her to post in this thread. She may be able to suggest a way to help you. Meanwhile keep in touch and we will all try to help and advise you. I too am British and know about the difficulties and lack of funding for our NHS.

Gentle Hugs,

Quaver
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Severe chronic pain in lower back. Lumbar Spinal Stenosis, Scoliosis, DDD. Hypermobility in ankles caused most problems. Bilateral trochanteric bursitis Osteoarthritis in spine, wrists and hands. Golfer's Elbow. L4-L5 L5-S1 spinal fusion plus cage support and titanium spacers April 2008. Nov 2010, accident in shower caused compression fracture of L2. Missed by A&E. Functional lumbar spine stenosis from herniated disc at L3/L4 July 2015 XLIF discectomy plus XL-TDR very successful! Miraculous improvement in mobility! Hashimoto's syndrome, Depression, High Blood pressure, Fibromyalgia, Raynaud's Syndrome.
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Spicey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Spicey Quote  Post ReplyReply Direct Link To This Post Posted: Jul/04/2017 at 10:42am
Hi Chantellecole,

I'm so sorry to hear of your suffering. I haven't heard of your condition either so I don't have any specific advice on that, but I do have experience of spinal cord stimulators. They work in a similar way to a tens machine in that they use electrical stimulation to interrupt pain signals from reaching the brain. They work best on pain caused by nerves, but they aren't effective on numbness and are less effective on "mechanical" back pain.

SO my story briefly. I had a stabilisation surgery in 2004 which failed and was followed up with a revision surgery and fusion at L4/L5 in 2008. I was still left with lots of horrible neuropathic pain so I was referred to the neurology team at Preston Hospital in Lancashire and they put me forward for a Medtronic spinal cord stimulator. This particular model works at a frequency where you feel the tingling in your limbs. Personally I found that this model didn't work very well for me. I had great coverage throughout my lower body but the pain levels were not improved and in fact much of the time the stimulator seemed to feed the nerve pain down my legs. Then I when I moved to Oxfordshire, I was being seen by the Neurosciences department at the John Radcliffe Hospital. They put me forward for a trial of the Nevro spinal cord stimulator which works at a MUCH higher frequency, which means there is no feeling of tingling in the limbs at all.

When I went into hospital for the trial, I couldn't walk more than 30 metres even with 2 crutches, my back pain was around 7 or 8/10 and my nerve pain in my legs was 8/10 most of the time. My pain levels were so bad that I was having seizures almost every day. So I was in a bad way. Within 2 days of the trial unit being installed my pain levels had started to drop and by the end of 5 days I was walking the length of the ward and corridor to the ward without my crutches. So they gave me the surgery to have the new one installed. It takes a while to optimise the system, but in general now my pain levels have been dramatically reduced.  On a good week now my leg pain is 3/10 and back pain is 5/10. On a good week I can walk almost a mile with no walking aids. The number of seizures I have has also reduced drastically. I do still have bad days and sometimes bad weeks. At the moment I'm having a severe flare up on account of overdoing it for several weeks plus starting a new physio regime, so this is not a good week for me. I've been hobbling around on sticks again and am in agony. But I now know that when I have these flare ups that if I rest, things will settle down again.

Both of these surgeries were done on the NHS and were done via neurology or neurosciences departments. Sometimes you need to be referred via a pain management department. They are expensive devices so they may want you to try some other things to make sure that it is the right solution for you, but if you do get offered a trial then it's well worth trying it out. It won't be a miracle cure but it may give you some pain relief.

I wish you all the very best of luck,

Spicey xxx
42 yrs old, chronic pain for 21 years.
Decompression/stabilisation surgery with Dynesys Apr'04, revision with PLIF fusion Oct'08, SCS installed Apr'10. Injured neck in a stair fall in July '09.
Failed Back Surgery Sydrome & Fibromyalgia diagnosed 2011.
2014 diagnosed with Adenomyosis and Endometriosis. Surgery to thermalize the endometriosis in May '15
Also suffer from non-epileptic seizures brought on by pain.
Nevro high frequency SCS unit fitted in Feb 2016
Also suffer from anxiety & depression.
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