info@myelopathy.org

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​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
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 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.
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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. ​

However, we know from other studies that some people with ASCC go onto develop DCM over time and this has led to the suggestion that ASCC actually represents the earliest stages of DCM.  In order to further evaluate this, researchers from North America have been using new MRI imaging techniques to better understand asymptomatic cord compression and to see whether the compression is affecting the spinal cord. 

What was the aim of the study?
The study, undertaken at the University of Toronto had two primary aims:

1)Can ASCC be automatically diagnosed by using computer analysis of MRI images?
2)Can damage to the spinal cord be visualised using new MRI techniques in ASCC? 

How did they measure subclinical damage and cord compression?
The group recruited 40 individuals to the study, 20 of which has ASCC and 20 had no evidence of cord compression.

Aim Number 1
The performance of a computer programme to diagnose cord compression was compared to a group of experts and found to be just as good.  

What to make of this?
This study is informative to clinicians, as it reflects a way to diagnose ASCC early on before significant damage has been done to induce symptoms.  The success of the computer diagnosis also means ‘expertise’ can be transferred into any hospital setting.  This is exciting, as we know that if we could detect DCM earlier, and offer treatment sooner, patients would make a better recovery.  
The finding that ASCC causes tissue damage also may make us question our definition of myelopathy. Currently, symptoms are the definitive characteristic of myelopathy, but as advances in technology allow us to detect spinal cord damage in the absence of symptoms, this may change. The symptoms of myelopathy may reflect a later stage of damage that occurs after what we can now see using MRI. 
Furthermore, the findings of similar tissue injury in ASCC to DCM indicated a possible definitive link between the two disease states. The researchers compare the two as being similar to “pre-diabetes” and “diabetes” (a scenario where people who are struggling to handle their blood sugars are identified even earlier, with some able to make changes to prevent the onset of diabetes). Perhaps what we are seeing here is a “pre-DCM” state.  This still requires more work to be confirmed.  We look forward to following the research story further! 

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.

On completion of my first ACDF, the surgeon immediately informed my anxious husband that I would never ride a bike again.
That was in 2007 and, to be fair, I have not taken to the saddle since.  After initial improvements, unfortunately many Degenerative Cervical Myelopathy (DCM) symptoms returned. Fusion had not taken place and the discs had slipped slightly.
On discharge from my second ACDF in 2008, with discs caged and this time a soft collar for six weeks, I was told not to put any strain on my neck at all. I still had balance/walking problems and numbness alongside other symptoms.
Neither my GP nor my neurologist ever contradicted the “no strain on the neck” message. Although I did learn that if I had MS I would have been immediately offered physiotherapy and hydrotherapy.
So, I dutifully did not put strain on my neck for more than eight years – my symptoms worsened as I gained weight, and felt rubbish, in an exercise desert.

​After all, logically, the gym was out of the question – I would have fallen over if I had gone on the treadmill thanks to the balance problems. Even in the shopping centre my legs seized up after a three-minute slow and painful walk. Furthermore, my favourites in a previous life, rowing machines and swimming certainly put strain on the neck, as did all weight-training equipment. 
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Giving up work and becoming more housebound, in total frustration, I found a private physiotherapist and explained the problems. She was knowledgeable and caring. I worked hard to strengthen my core muscles, improve my balance and more. However, progress was slow and, to be honest, the exercises boring in the longer term. However, she had opened a window of possibility.

My initial six sessions gave me the confidence, and the ability, to tackle so much more out of the water too. 
Additional sessions have built up my strength and confidence even further. 
I can now tackle many tasks in the garden, go for a short walk on uneven ground in the countryside, and walk up and down stairs without too much discomfort or fear of falling. I can even bend enough to put on boots, socks and tights again! 

Of course, there are still not-so-good days when I need to think harder about where all my limbs are and how to move them. However, the confidence I have regained through hydrotherapy keeps me going and keen to take on more physical challenges at every possible opportunity. 
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Unsurprisingly, my mood too has greatly improved – I see a much brighter future ahead rather than the gloom and frustration of a continuing decline in physical abilities and increasingly limited lifestyle.
The transformation hydrotherapy has brought to my exercise desert is clearly anecdotal evidence. Proper research is needed into the benefits of hydrotherapy for people with DCM. 
If hydrotherapy can be shown to improve outcomes, and relieve low mood associated with limited lifestyles, then we must push for the option of hydrotherapy to be incorporated into all DCM post-operative treatment programmes. It also possibly has the potential to help relieve pre-operative problems too.

Spoon Theory is another approach to managing energy: 
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Pain
Managing pain levels, like fatigue, links to the ideas of pacing and spoon theory. There are also specific resources about pain such as:
http://www.moodjuice.scot.nhs.uk/ChronicPain.asp

The British Pain Society also has helpful information: https://www.britishpainsociety.org/

Mindfulness
It feels like you can’t go anywhere nowadays without hearing someone talking about mindfulness. This is an approach developed from eastern Buddhist meditation techniques and applied to pain management. It was found to be so helpful it has spread throughout healthcare as a way of managing stress.
At its core is a very simple idea, which is surprisingly difficult to put into practice: “Be in the present moment.”

Most of the time we are caught up in thoughts or regrets about the past, or worries about the future, and rarely notice the present. 

​Have you ever driven somewhere, arriving without remembering the journey? Have you ever been reading a book without taking it in? Looking at your watch without actually seeing the time? These are all examples of being “mindless” which is the opposite of being mindful. 

We now have our very own INSIGHT TIMER group  for Cervical Myelopathy you can join by entering your details in the form belowCervical Myelopathy you can join by entering your details in the form below

As humans we are generally pretty rubbish at being kind to ourselves. An approach called compassion focused therapy is based on how the human brain evolved and explains why we are so tough on ourselves. 

Paul Gilbert, who developed this approach, believes in sharing all the resources and information:
https://compassionatemind.co.uk/

Here is a list here of mindfulness apps:
 https://www.healthline.com/health/mental-health/top-meditation-iphone-android-apps

In crisis 
If you feel you are in crisis with your mental health and you are
having – suicidal thoughts and feelings; or thoughts about harming yourself or someone else; or you have seriously hurt yourself…
You can go to any hospital A&E department and ask for help (if you need to, call  999  and ask for an ambulance). There are specialist mental health liaison teams in hospitals who will see you quickly and be able to offer the most appropriate support

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:
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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/

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