info@myelopathy.org

​Social Security Benefits (SSI)
As far as Social Security benefits, SSI is a set disability amount which is awarded for those who have not worked enough years or haven’t paid enough social security tax into the system. For example, the maximum amount right now is $750/monthly. SSDI benefits are disability benefits awarded based on wages over the years and paid into Social Security.  You could range anywhere from a couple hundred to a couple thousand dollars monthly. Both benefits are issued through the social security administration. 

You need to be deemed disabled for an expected period of at least 12 months. For disability, benefits, especially SSI, most applicants are denied the first time. That’s typically when one obtains a lawyer to handle the appeal. It just seems to be common practice.  It can take months to finally get approved.  Obviously depending on the level of severity, but  it can take anywhere from 6 months to a little over a year. 

Medical Coverage
As far as medical coverage, there are programs through public welfare and types or medical coverage available associated specifically with disability. One is directly related to SSI recipients, one is disability clients with no income/awaiting benefits, there is one for those who work but fall under certain income limits, one for those receiving SSDI who fall under certain income limits, and for those who receive SSDI and receive Medicare part B through social security – if they make too much to qualify for the welfare medicare, there’s another income limit to see if welfare will at least pay their Medicare B monthly premium amount, so they would at least have that premium amount back in their pockets in the SSDI check.  All of those types of medical are applied for through Dept. Of Human Services /formerly Dept. Of Public welfare. 

Cash Assistance
​ If anyone in the US is looking for cash assistance while awaiting disability, they can also apply through Dept Human Services.   For example, the guidelines to qualify for cash assistance benefits is that you have to have care/control of a minor child. So a parent/parents with custody.  The amounts are very low though, right now, if a parent of 2 applies for cash assistance, and has zero income, the maximum grant amount monthly for that 3 person household is only $403. Better than nothing but clearly doesn’t touch the bills. There are job search requirements with this program. But if you are disabled, you have a form completed by your physician and are waived from those requirements. We also have what is called a DAP- Disability Advocate Program, and they can help individuals seeking SSI throughout the process.

Each state has different programs to help the disabled offset costs. 
Some states have fuel assistance. Every year , a household gets a certain amount of money paid to their heat supplier for heating through the winter. 
Most disabled people , if qualified can get SNAP, which is the food stamp program. 

If you’ve got young children under the age of 5 , there is the WIC program which delivers food to low income mothers. 
If you are disabled, and get SSDI, your children get a small disability check also. That lasts until they are 18, or have graduated from high school. 
Most states have food banks, if you need food please use them. 
Churches also have programs for food, the elderly, and the disabled. Ask your pastor for any information or programs that could help your family. 

Helpful links: 
SSA.GOV 
Disability Benefit Centre 
Information kindly collated and presented by Margot Miller and Melissa Rodriguez 
If you have any relevant information on the benefit  system  for the USA and would like to see it featured please get in touch: info@myelopathy.org 

All this information  is now available at www.myelopathy.org/disability-benefit-advice-usa.html
​

 Tim’s  Story Pre-Op
A little about myself, I am currently 29 years old living in Milwaukee, Wisconsin, United States of America and for work am a graduate research assistant and PhD student at Marquette University. What led up to me being diagnosed with myelopathy occurred a couple years ago back in summer of 2016. My wife and I had just purchased a house and the best I can figure, I hurt my neck while we were moving.
Fast forward about 2 weeks (to early August) and I started to develop mild to moderate shoulder and neck pain along with some nasty “knots” in my heck and shoulder. Since I couldn’t think there was any immediate injury, I assumed this was due to sleeping wrong or improper ergonomics at my workstation. This was persisting for about 6 weeks to late September, and I was managing the pain with some Aleve. 

Now it’s late September and I woke up one Saturday around 4:30a.m. with the worst physical pain I have ever experience. It quite honestly felt like every muscle in my entire left shoulder, arm, and forearm was spasming and cramping simultaneously with a sharp, aching, and burning pain in my shoulder radiating down my arm. This would spike any time I tried to move it. Eventually that day, I started to also feel numbness and tingling develop in my left thumb and index finger. At this point, I SHOULD have known what was going on. I’m an athletic trainer (which in the U.S. is a profession that specializes in injuries and illnesses related to physical activity and athletics) and a PhD student in rehabilitation science. I’ve taken 8 graduate credits of neuroanatomy and neurophysiology. I should have seen it, but I was blinded by my own stubborn pride. “I am too young for something like that to happen without a serious injury” and “I have no mechanism of injury” were my thoughts. “It must just by a tight muscle pinching a nerve root from all these knots” was my conclusion.
​
I. Should. Have. Known.
I ended up going to a local walk-in clinic the next morning and, sure enough, the diagnosis was herniated disc. They prescribed me some weak pain relievers and said they didn’t expect them to work and that I may just end up in the E.D. that night asking for something more serious. So, we went over to the E.D. right away. They gave me a prescription for Percocet and got me an MRI of my cervical spine. The MRI results came back not good. *WARNING medical jargon*: I had an extruded C5-6 disc herniation with severe foraminal stenosis (narrowing of the hole for the nerve root to go out to the body), mild-moderate cervical canal stenosis (narrowing of the hole for the spinal cord), and mild spinal cord deformity. I was scheduled a follow up appointment with a neurosurgeon a couple weeks later. I, however, wanted to try and get seen a little sooner and start on some conservative treatments so I managed an appointment with a Physiatrist in the mean time. Her impression was that the injury was not that significant and, in particular, the spinal cord deformity wasn’t too serious since I had plenty of room for the spinal cord still. I got started on physical therapy. About a week after that, I had a couple physical therapy sessions in and saw the neurosurgeon. Up to that point, PT wasn’t really helping the pain that much, and the pain was too bad to be able to do any exercises. At the surgery visit, the surgeon was less optimistic. She found something that wasn’t present before, known as hyperreflexia, in my left hand. This meant that the the compression on the spinal cord was an issue after all, and she was pretty confident I would not be able to recover without surgery.
What is hyperreflexia: (*WARNING more science-y stuff*: basically the brain sends inhibitory signals down to the motor neurons in the spinal cord to prevent reflexes like the knee tap reflex from being too strong. If the nerve sending that descending signal is compressed, the signal doesn’t get through and the reflex is stronger than it should be…. i.e. because of the compression, there is less information from the brain getting through to the motor nerves in the spinal cord to tell them to be quiet.)
Surgery
The surgeon was willing to continue trying conservative therapy on the condition that if I didn’t notice improvement within 6 weeks to 3 months, I should go ahead and schedule surgery. I tried a couple more weeks of physical therapy. This ultimately didn’t help at all and may have made me feel worse in the short term. In this time, I had a medical genetics test, that I basically bombed due to pain, and tried my best to struggle through classes and work in spite of the pain. After about 2 weeks, I had a follow up with the Physiatrist I had seen. She confirmed the hyperreflexia the surgeon had observed. We had a good discussion about the implications of that, and discussed that she also now believed I needed surgery. 

By this point, I had already failed physical therapy (in the sense of it became evident that PT wouldn’t help) and started on the path to schedule surgery. At work, my boss/advisor (since that is the same thing in a lot of PhD programs) and I discussed the implication on classes and work. I ended up needing to drop out of classes for the semester and ended up having to retake the next couple semesters.
Symptom wise, I also started to develop tingling in my right hand in my thumb and pinky fingers, which would indicate greater seriousness of the compression on the cord. About a week after that, I noticed tingling in my right foot and leg. A few days after that, I noticed that my walking was being impacted. Specifically, I couldn’t lift my foot enough (dorsiflex) to clear my toe off the ground when I swung-through. This caused me to almost trip and fall a couple times. Therefore, I asked my advisor (a physical therapist as well) to check the strength of my right ankle. Sure enough it was a little weak compared to the left ankle. This was a week before my surgery was scheduled.
I ended up having surgery on Nov 15, 2016. The surgery went well though the overnight stay in the hospital was a bit rough. I was in quite a bit of pain, they wouldn’t let me have anything by mouth all night because I vomited after drinking shortly after surgery, and I needed a urinary catheter a few times. I was able to pass my inpatient physical and occupational therapy testing right away and went home the day after my surgery. 
The surgical procedure is referred to as an Anterior Cervical Discectomy and Fusion. Briefly, that involves entering through the front of the neck to access the spine from the front. This has better outcomes because they can basically slide between layers of muscles rather than cut through them, like they would have to do from the back. In my case they then took out part of the disc, put in a cadaver bone spacer between the vertebrae, and put a titanium plate over the whole deal. While before surgery, they didn’t think I really had a case of myelopathy, due to the onset of symptoms in the other hand, foot, and walking problems the operative diagnosis was a herniated cervical disc with myelopathy.

Post Op
After surgery, I continued to be in pain from the surgery for several weeks. I had some problems swallowing for about a week or two, and sleep was uncomfortable at times for awhile

I returned  to work on January 5th with restrictions. Basically, I could only do computer work for awhile until the two vertebrae fused. I was on a 10lb and then 20lb weight restriction since surgery. At my 3 month follow up appointment I had a couple of x-rays taken in maximal extension and flexion to see how the fusion was progressing. everything is going well on that part. because that was going well, I was cleared to return to work without restrictions. After this point, I spent a lot of time working on re-strengthening my arm and working on my balance. Also by this point my pain levels were much better, and I was able to return to classes for the Spring semester of 2017 which began in January.
At the 6 month follow up I was continuing to do better, having less and less pain and increased strength. Likewise, at the 12 month post op follow up in November 2017 things were going quite well and I was discharged from the care of the neurosurgeon for this surgery. I still have some pain intermittently at 1.5 years out from surgery, especially if I neglect my posture which I manage with over the counter Tylenol or Aleve. All-in-all, I am doing very well all things considered. ​

Therefore, unfortunately, we identified that the effect of postoperative physiotherapy in DCM has been poorly studied and we could not make any recommendations about whether it should be routinely provided. This does not mean that physiotherapy is harmful or should not be provided after surgery for degenerative cervical myelopathy but simply more investigation is required.  

Pleasingly there are now two registered randomised controlled trials, one in Taiwan and another in Canada, which will hopefully shed light on the effects of postoperative rehabilitation in DCM.

What did the study measure?​
The team from Japan performed ‘contrast MRI’ scans on patients with CSM due to undergo and operation, before and after their surgery.  They then compared what happened to patients who had enhancement and those that did not have enhancement. 

What were the results?
In the study they found that those with preoperative enhancement were more likely to have developed swelling at 1 month after the operation and the swelling was more likely to persist until 1 year post operation. Those who developed swelling had poorer outcomes as assed by a scoring system called the JOA that looks at movement skills as well as sensory loss (problems with feeling). 
What does this mean for those affected?
This sort of MRI imaging is not normally performed during the work up for CSM, but the potential to offer additional information into the severity of the disease and how patients are likely to respond to surgery would be helpful to doctors and sufferers alike. 
It is worth noting that the injection of dye can be harmful to some people, although this is uncommon. 
Therefore, for this technique to be adopted, healthcare providers are likely to need further information, such as:
​

1. How does this change the management of patients?  This study only looked at patients who were due to undergo an operation anyway, is spinal cord swelling present in other forms of CSM?  Can it help decide when to perform an operation?

Of course a number of additional MRI techniques are being developed, and it is possible that the information that might be provided by this method, is superseded. 

​References
Ozawa et al. Spinal Cord Swelling After Surgery in Cervical Spondylotic Myelopathy: Relationship With Intramedullary Gd-DTPA Enhancement on MRI. Clin Spine Surg. 2018 May 31. doi: 10.1097/BSD.0000000000000664
Cho et al.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229731/

​

​Frank’s Background Story 
​My whole life was driven by sport, mainly encouraged by my Granddad, and I played both football and Ice-hockey at an early age, the latter for a living. A severe knee injury forced me to hang my boots up but I continued being involved in sport only this time I took on the role of a goalkeeping coach in football, working with all age groups in both Milton Keynes and Bedford. An innocuous dive for a ball during a coaching session on the 27th September 2008 was to change my life drastically. I landed awkwardly on my arm and the elbow dug into my lower abdomen. A few hours later I was rushed into A&E and despite breaking bones and tearing ligaments during my career this was at a level I had never truly experienced before.

Roughly a year and half later I was referred to Addenbrookes hospital pain management team, and they diagnosed I had torn a stomach muscle, for the second time in my life, but had also damaged nerve endings and I was now suffering from Chronic Pain Syndrome and due to the damage done to my nerve endings, I would probably suffer from that for the rest of my life. To go from being so physically active to not being able to move without causing any pain was very hard to accept and then having to endure things such as having to be pushed around in a wheelchair where I had become so weak was tough and mentally I have constantly struggled to come to terms with it. Thankfully my partner Lucy has helped me to learn to deal with these emotions and in 2010 she encouraged me to enrol on an Access Course at Bedford College with a view to going to University and begin training as a Primary School Teacher. For someone who had left school with no qualifications to speak of, and to go to college was really scary but I enjoyed my time there, and I even wrote an article for the college paper about being a mature student struggling with a disability. I passed the course with merits and distinctions and gained a triple distinction for my final dissertation. I was speechless at how well things had gone and I was even more amazed when the University of Bedfordshire accepted me onto their Early Years Education, 3 year BA Hons degree. Whilst at Uni I knew the typical student nightlife was never going to be an option however I wanted to get involved as much as I could and so I became a Course Rep, a PAL leader during my 2nd and 3rd years, which involved helping first year students negotiate their first two terms on campus, and I also volunteered as a Student Ambassador, which involved helping out on Open Days showing prospective students around the campus and giving talks both on campus and in local colleges and schools about my experiences of being a student as well. This all helped me to gain confidence in myself and I found myself being asked to become a mentor to disabled students who were finding it difficult to adjust to university life. As I had done at college, I also found myself writing an article for the university magazine about how I’d gone from playing hockey to being a student wanting to work with children. My health continued to make things difficult but the university were superb and with an added year I eventually graduated in the July of 2015. Despite the issues I had endured, I enrolled onto the PGCE course to gain my teachers qualification. My health unfortunately took a turn for the worse, and I began to have constant tingling in my left arm and I had started to pass out with an alarming frequency.

Eventually I had to accept things were not getting better and I withdrew from the course on the 17th November which was one of the lowest points in my life. In January 2016 I applied for a job at the university working with the Dean of Student Experience and was offered the job on a 6 month contract. The role meant talking to students and finding out what issues they had experienced as well as contacting other universities to see what things they were initiating to get students involved more. During my time in this role I was instrumental in the starting of a student society called PAMMS, which was for parents and mature students, a student group I felt were regularly missed during student life and events. I was still passing out regularly and in late May 2016 that problem eventually caught up with me. I was in the garden playing with my dogs when I passed out, and upon coming round I was surrounded by broken wood and a concerned dog licking my face, it became clear I had gone through a small garden table and had badly bruised my left arm. A trip to A&E showed I hadn’t broken any bones but my arm was still extremely sore and had swollen quite alarmingly. The arm continued to swell and a few days later the whole forearm was black with bruising and was so painful I couldn’t bear anything touching my arm, leading to another trip up to A&E. A succession of specialists and nurses took it in turns to look at my arm and I was eventually taken to a ward before having surgery to repair the Compartment Syndrome which I was now suffering from. A CT and an MRI scan back in February of 2016 had already shown I had issues with 5 discs in my neck and that these were pressing on my spinal cord. In the August 2016 after seeing the neurology department at Cambridge hospital I had an ACDF to repair my C4/5 discs, however the surgeon stated I would need further surgery to repair the other levels. Another knock to my left hand caused my arm to swell again, and another trip to A&E led to me being rushed to surgery in late November 2016 to repair a second Compartment Syndrome, this time on the inner half of my left arm. I have been left with two 7* inch long scars on my left arm, and I was still continuing to pass out on a regular basis, and a further MRI scan in March of 2017 showed the discs in the neck had got worse and I needed major surgery to repair things. Lucy and I got married in late July and enjoyed a superb Honeymoon in Wales later on in September. My surgery was scheduled for 11th December and unfortunately was postponed three times, however, I reported to Addenbrookes on the 24th January 2018 for surgery the day after.

Post surgery:
I woke up and to be honest for the first 36 hours I felt pretty good, I think the copious amounts of Ketamine and morphine being pumped into my body may have had something to do with it. Lucy came to visit the day after surgery and couldn’t believe how coherent I was and in how little pain I appeared to be, this would definitely not be the case the day after, once I had been transferred to a Neuro ward and the Ketamine had worn off. I felt like I had been hit by a train and any movement sent fresh waves down my neck and back, and I couldn’t believe how uncomfortable the neck brace was either, even a morphine pump struggled to keep up with the need for pain relief as my body tried to cope with what had just happened. Over the next two weeks I gradually recovered and was allowed home, with the knowledge I had to keep the brace on for 24 hours a day and I would be seen in around 3 months time. The recovery process at home was hampered by an issue with sciatica which prevented me from laying in a reclined position in my bed forcing me to spend the first three months after the surgery sleeping on my sofa. This was really difficult to cope with but Lucy kept me going and I made sure the sympathy mode was kept up with wine gums and jelly babies being to the fore of my food intake. Lucy was able to take me out for a coffee on the odd occasion and my pain levels slowly reduced although even now 6 months down the line I am still having issues with the pain in the surgery site as the muscles begin to knit back together. My Chronic Pain has obviously not helped and has at times left me reaching for the oramorph as the pain relief I am already on had not controlled things. I have good and bad days and occasionally I have a very bad day which leaves me barely able to move. On a plus side I am no longer passing out 3-4 times a day, which when you think about it, I have been passing out for nearly 18 months, so at a best guess, I’ve zonked out over a 1,000 times.
I am now well on the road to recovery and despite still having issues with my shoulders and trying to get used to having a limited range of movement in my neck, having the surgery was worth it and indeed was necessary. My surgery was for prevention rather than cure and I know that whilst I wont ever score the winning goal in a Stanley Cup Final, I’m now looking forward to the future with confidence and this role is the perfect opportunity for me to continue with my recovery and make the most of the superb work done by my surgeon Dr Mark Kotter. It was Mark that explained myelopathy to me before I had my surgery and told me about the Facebook support group which I subsequently joined and that has been such a great support to myself and my wife. It has also helped me understand my condition more with the information available and accounts from others who suffer this tough condition.  When the group got the great news it was becoming a charity I really felt I wanted to be involved and to help spread he awareness of this condition and to raise funds. After speaking to the team I have been given the great opportunity to become the charity Ambassador for Myelopathy.org and hope that I can help to spread the word and begin to help people to understand the condition and thus give support to both sufferers and their loved ones. 
​

​Humans require many different repair and renewal strategies. At the earliest point in life, we need these pathways to grow and develop but in later life, we use these pathways to recover from disease and injury. For this, our bodies activate a unique type of cell known as a stem cell. Stem cells are a special form of cell, as they can make any cell type in the body, and so can provide building blocks for our organs and tissues.  

Strategies to repair the spinal cord are sorely needed, and whilst these findings must be treated with significant caution (as there was no group of patients to compare to and the improvements did not reach statistical significance), they are promising as typically for this group of patients, so far down the line after injury, no improvement would be expected. 

1. Curtis, E et al. 2018 A First-in-Human, Phase I Study of Neural Stem Cell Transplantation for Chronic Spinal Cord Injury Cell Stem Cell  Jun 1;22(6):941-950.e6. doi: 10.1016/j.stem.2018.05.014

​Words can be powerful when spoken or in thought. Words are used on so many different levels from the expression of your thoughts to the decision you will make within the moment.Peace is delivered with words but also wars are started by the spoken or written word.

With the technological development of the internet and mobile phones, words are used more now than ever. The average person uses their mobile phone for approximately four hours per day and around 18.7 billion text messages are sent around the world on a daily basis. And we can’t forget the amount of words we use on our social media platforms. I think you’ll agree that’s a great quantity of words.

This just shows how important words are for our social integration and how powerful words can be. They say that concurring thoughts will eventually become your actions so should we be careful at what we think? Many people think that words, once spoken, cannot be taken back and the action of those words, even if they were delivered within seconds, will last and echo for a lot longer. 
So should we be more careful with what we choose to say? Do words really cut deeper than a knife and leave longer lasting invisible scars? Could our words to a situation decide the overall reactive decision to a situation? Can our words totally change a decision within a scenario? The answer is “Yes!” Our action will always lead to a reaction and the outcome will always depend on our words.

Positive thinking doesn’t mean that you keep your head in the sand and ignore life’s less pleasant situations. Positive thinking just means that you approach unpleasantness in a more positive and productive way. You think the best is going to happen, not the worst.

The Health Benefits of Positive Thinking
Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include:

• Increased life span
• Lower rates of depression
• Lower levels of distress
• Greater resistance to the common cold
• Better psychological and physical well-being
• Better cardiovascular health and reduced risk of death from cardiovascular disease
• Better coping skills during hardships and times of stress

You can learn to turn negative thinking into positive thinking. The process is simple, but it does take time and practice – you’re creating a new habit, after all.

If you are looking for another way to relieve discomfort that doesn’t involve drugs, some age-old techniques – including meditation and yoga as well as newer variations, may help reduce your need for pain medication.
Research suggests that because pain involves both the mind and the body, mind-body therapies may have the capacity to alleviate pain by changing the way you perceive it. How you feel pain is influenced by your genetic makeup, emotions, personality, and lifestyle. It’s also influenced by past experience. If you’ve been in pain for a while, your brain may have rewired itself to perceive pain signals even after the signals aren’t being sent any more. Stress and pain are tightly connected and can have a strong influence on each other. Therefore, if positive thinking is able to counter some of the effects of chronic stress, it could also help lower pain levels.

When your state of mind is generally optimistic, you’re better able to handle everyday stress in a more constructive way. That ability may contribute to the widely observed health benefits of positive thinking.

The tongue is the strongest muscle in the human body so be careful on how you use it may it be online by txt or word of mouth because “words can only be forgiven not forgotten”.

​   JOIN OUR INSIGHT TIMER CERVICAL MYELOPATHY
   MEDITATION GROUP

Neck Muscles and CSM– An Update Part 1 of 2

Why was this study conducted?
As outlined previously, the amount of fat found within muscles has been linked to the type of symptoms experienced by patients; including the amount of neck pain and walking ability. This new study was done on a separate cohort of patients than the previous study and included measures of neck strength and other quality of life scales not assessed previously which addresses some weaknesses of the previous study.

How was the study conducted?
This study used MRI imaging to measure the size and the amount of fat in muscles in the neck. Neck strength was measured by clinicians using a hand held force sensor. Several questionnaires were performed to assess function, pain, and quality of life. Importantly, this study used what is called a “cross-sectional’ design meaning it only looks at 1 time point. 

What was discovered?
Larger muscles and larger amounts of lean muscle (i.e. muscle without fat) in the neck were associated with increased strength. (We already knew this in general, but it is good to ensure there isn’t something different about patients with cervical myelopathy). More fat in muscles of the neck was associated with more disability measured by the mJOA. Importantly, neither strength, muscle size, or muscle fat were associated with pain, duration of symptoms, neck disability index, or quality of life in this study.

Why is this important?
Between the previous study linked above and this study, it appears that muscle fat may be a biomarker of disability and function in patients with myelopathy.  Currently there are no biomarkers for myelopathy, which makes it difficult to assess how severe it is or give an idea of how things will develop.  More research will be needed to investigate the usefulness of muscle fat as a biomarker, but given that it can be quantified based on existing widely avaliable imaging techniques, it could enter routine clinical practice quickly.
 
Why could muscle fat relate to the severity of myelopathy?
One reason this is being investigated is that fat infiltrates muscle as a response to nerve injury and disuse. For example, if a nerve is injured the nerve doesn’t tell the muscle to contract as much and it allows more fat to become deposited within the muscle itself. 
    
References

1. Fortin M et al. Relationship Between Cervical Muscle Morphology Evaluated By MRI, Cervical Muscle Strength And Functional Outcomes In Patients With

Degenerative Cervical Myelopathy. Musculoskeletal Science and Practice. 38; epub 2018: 1-7 

1. Fortin M, et al. Association Between Paraspinal Muscle Morphology, Clinical Symptoms and Functional Status in Patients With Degenerative Cervical Myelopathy. Spine (PhilaPa 1976). 2016 May 23