The EMG experience

The equipment used on Ashton was much more high tech than this old medical device.

Sometimes cancer patients experience problems such as peripheral neuropathy as a result of treatment; or even as a result of the cancer itself. Such patients may need to have an EMG performed to diagnose the nephropathy. Earlier this week I had to take my son Ashton to the hospital in Sioux Falls in order to have an EMG performed. Fortunately Ashton does not have cancer and instead is being diagnosed for some sort of hypermobility. But since the EMG test performed on him is the same thing that would be done for cancer patients I thought it would be worthy to do a post about his EMG experience.

What is an EMG test and peripheral neuropathy?

Before going on it might be helpful to find out what these terms actually mean. Here is part of the definition of peripheral neuropathy from the Mayo website:

Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

I was warned by the oncology nursing staff that chemo could actually cause peripheral neuropathy. When looking at the Mayo page about peripheral neuropathy I noticed one interesting possible cause which specifically mentions lymphoma:

Bone marrow disorders. These include abnormal protein in the blood (monoclonal gammopathies), a form of bone cancer (osteosclerotic myeloma), lymphoma and amyloidosis.

To diagnose peripheral neuropathy an EMG may be ordered. EMG stands for
Electromyography. Here is part of what Mayo has to say about an EMG:

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

In the next two sections I will share Ashton’s experience with two different parts of an EMG test.

Getting shocked – the nerve conduction study

The first part of the EMG test Ashton went through was the nerve conduction study. Ashton had both arms and legs tested in this part of the study. It began with one of his arms. The tech hooked up electrode stickers to his hand, and then various places on his arm. An electric shock was sent through his arm.

Ashton was very nervous about this part of the test. The tech reassured him it was very little electricity, and it would start low and only increase in amplitude as necessary. To show Ashton it was OK, the tech used the probe on himself. I’m not really sure that made Ashton feel better.

I’m not sure how many pathways the tech tested on each limb, but it seemed to be quite a few. Ashton didn’t seem to mind most of the shocks. The only ones on his arm he said hurt occurred when the tech did the funny bone and the wrist. On his legs Ashton only complained about the shock right at his ankles. Other than those few areas, Ashton admitted the test wasn’t so bad.

Getting poked – the needle EMG

Ashton was even more noticeably nervous about the second EMG test. In the needle EMG the doctor used a needle to poke into Ashton’s muscle. The doctor would then measure the electrical activity of that muscle. Ashton was shown a needle to ensure him that it was not big and won’t leave a big hole. The needle itself looks similar to one used in acupuncture. This test apparently records how active a muscle is.

Luckily only one arm and one leg needed to be tested. I’m not sure how many pokes the doctor did, but I bet if I asked Ashton he could tell me. Ashton said he definitely felt the needle go into his muscle. When the doctor had to move the needle around in the muscle Ashton complained it was very sharp. During this part of the test Ashton had to either relax muscles or move joints according to what the doctor wanted. While this test was shorter than the first, Ashton said it seemed to take much longer.

There was only one point where I think the pain was more than Ashton was ready for. That was in Ashton’s calf and he asked if the doctor could hurry. There was also a little bit of blood coming out of the hole in the calf. None of the other punctures left any sign of a needle being used. At the end Ashton said he would prefer not to do that test ever again.

Ashton’s results

I don’t have his official results in front of me. But I do know what the doctor said. In the first EMG test Ashton had electricity ran through his nerves. According to the doctor this part of the test went very well and there is no sign of problems with the nerve pathways tested. This was really good news, since the tingling and numbness Ashton often feels in his hands and feet are not a result of these nerves having issues.

Ashton also did well in the second part of the test. Since the doctor couldn’t find any muscle issues in the arm or leg tested, he decided it was not necessary to test the other arm or leg. This was not surprising. When being treated by doctors it has always been noted that his muscles seem to be strong, and that something else such as ligaments were likely his problem.

On one hand it is good that no problems were found in either EMG test. The results further confirm his hypermobility and pain issues are likely caused in the joints. But at the same time we still don’t have any real answers as to why he has such extreme pain and numbness. His latest round of genetic testing should be done soon. Hopefully those results will give some answers.

Conclusion

Even though Ashton does not have cancer I thought his experience would be worth sharing on this blog. Many cancer patients experience peripheral neuropathy and may have to go through an EMG test. Despite Ashton experiencing some very short-term pain, it was well worth getting the test done. In his case the EMG was done to rule out certain conditions. With cancer patients it is more likely the EMG would be done to confirm and come up with a treatment plan for conditions such as peripheral neuropathy.

Today’s Song – Hurt

After seeing Ashton go through pain I couldn’t help but think of the classic Nine Inch Nails song Hurt. Technically the song is more about regret. But I thought the Johnny Cash cover of the song was well worth sharing in this post.

Bonus song – I won’t back down

Johnny Cash did some great covers in his American Recording series. One of my personal favorites happens to be Cash’s cover of Tom Petty’s song I Won’t Back Down. Ashton also happens to know and like this song because it was featured in the movie Barnyard.

The financial burden of cancer

Last week I mentioned in a post that I would start blogging about topics requested by others. I have received a lot of good blog ideas and have them placed in the queue. By far the most requested topic has been about the financial cost of being diagnosed and treated for cancer. In this post I will briefly write about how cancer and other medical conditions within my family have become a financial burden. In a future post I will blog about places people can turn to that have become financially by financing cancer treatment.

First I should note that I have pretty good insurance. My family has an individual plan that we spend a lot of money on every month to ensure we have good coverage. Since my wife and I are self-employed we wanted to make sure we had a plan that would keep our family covered for anything unforeseeable, such as cancer. There have been a few times where the insurance company has denied chemo or scans. But I think that is unfortunately normal for all insurance companies; and after being resubmitted by the hospital staff each procedure has been pre-approved. Yet even with good insurance the costs are adding up.

Part of the financial burden comes from the out of pocket due from all of these procedures. While its true there is a cap on the out of pocket costs. This cap is much higher than I understood and the bills have been piling up. With three family members going through major medical issues in 2018 my family reached that out of pocket quite easily. Now that we are in a new year we are once again starting to reach that out of pocket fairly quickly. I really don’t see how anyone without good insurance is getting through major medical conditions without feeling overwhelmed by the financial burden. Each round of chemo costs over $30,000 for the drugs alone.

A larger part of the financial burden comes from working. Or rather from having to change work habits. My wife runs a fairly successful business focused on tax preparation, payroll, and bookkeeping. For the last decade I have worked with her at helping to grow this business. Last year she had her heart attack and had to slow down on how much she was able to work. At the same time I was having my health issues and was unable to put very much work in at the office. This meant having to hire an additional full-time staff member at the office to pick up some of the slack. Having this new staff member has helped tremendously and we are very glad to have her. But the addition of this staff member also meant a large increase in payroll; and towards the end of the year it meant the payroll that went to my wife and myself had to be reduced. That is one of the dangers of having a business which relies upon a large amount of its revenue during one season. Any unexpected changes toward the end of the year means the business owners may have to suffer financially.

And then of course there is the cost of traveling and hotels. Luckily so far all of my diagnosis and treatments have been done locally. But my youngest son has been traveling to St. Paul, MN, and Sioux Falls, SD, fairly regularly to diagnose his hypermobility issues. These trips costs us thousands of dollars in 2018. Each trip we tried to get a cheap hotel and eat fairly conservatively, but it is amazing how quickly money flies out when traveling. Plus, since Ashton is technically still undiagnosed there are costs which insurance simply won’t cover yet. One of those costs was getting him a new wheelchair during the fall of 2018. His new wheelchair has helped him tremendously on the days he is unable to walk, but it was a definite unexpected expense. Like most of these expenses we had to use a credit card. I don’t even look at my credit card statements anymore. There are simply too many cards which have become maxed out. We are hoping with some adjustments to our finances in 2019 that we should get some of these cards paid down.

Over the last few months I have spoken with a lot of cancer patients talking about their financial situations. Many of them are in worse situations than I am. One theme I have noticed though is that many cancer patients are going through multiple health issues just as my family is. Some cancer patients have other family members going through major health issues, such as is happening with my wife and youngest son. Or even more common is that cancer patients have other major health issues that may or may not be related to the cancer itself. These additional conditions put even more financial stress upon cancer patients. As I said above, I plan to write a post in the future about different ways cancer patients can get some financial relief.

Talking about the financial burden of cancer is not easy for me. Even harder has been accepting financial offers of help from others. This weekend there is a spaghetti benefit set up for my family. I am so nervous about this event. I am used to being the person helping other people while they are in need. It is uncomfortable having to rely upon the goodness of others. But at the same time I’ve had to learn to accept this help because of the disconnect notices from utilities, car loan companies, and other places we owe money. First and foremost we have to make sure our family is taken care of, and that would be very difficult to do if we don’t have power or a vehicle to get places.

As I said earlier in this post, in the future I will blog some resources cancer patients can utilize to help them with financial burdens. In this post I shared some of the financial burdens being placed upon my family. I am definitely not looking for anyone’s pity. Rather I am sharing this in the hopes that other cancer patients know they are not alone in feeling overwhelmed by the financial burdens being placed upon them.

Today’s song: I’m Busted

The first song that came to mind when doing this post was I’m Busted from Ray Charles. On YouTube I found an appearance of Ray Charles on the Johnny Cash show featuring this song. This is a great musical artifact and well worth sharing.

Bonus Song – Seven Spanish Angels

After playing the song with Ray Charles and Johnny Cash I couldn’t help but remember Ray Charles and Willie Nelson singing Seven Spanish Angels. This is such a beautiful song and I often think of it when a fellow cancer fighter loses their battle.

Ashton’s medical problems

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Ashton getting some pain relief from heated up rice bags. He generally stays in good spirits even when in a bit of pain. 

This particular post won’t be about cancer. I’ve mentioned a few times on this site that my youngest son Ashton has medical issues. In the past I’ve used Facebook to keep family and friends updated as to his status. Going forward I am going to share the updates here. To get everyone up to date I’ll do a not so brief summary of what has happened with Ashton over the last year.

Ashton’s story began a little over a year ago when the wife and I were moving our family to a new house on the lake. All three boys were helping me clean out the basement in our old house. Somehow he fell into a plastic bin while carrying a picture. Ashton then began to cry and said something was wrong with his shoulder. I took a look at him and it appeared his left shoulder had kinda come out of its joint. I say ‘kinda’ because I’ve seen dislocated shoulders before, and this didn’t quite look like that. His arm was just hanging as if there was no shoulder. This is a condition we called “dropped” in our household now…

I gave my wife, Mindy, a call on the way to the Emergency Room and she met us there. The doctor at the ER seemed as confused as I was about the appearance of his shoulder. After an examination and x-ray the doctor said she couldn’t find a reason for the way Ashton’s shoulder was hanging. After conferring with another doctor on the phone, the ER doctor prescribed Ashton some muscle relaxant. It seems too long ago this, happened I can’t exactly recall the reason for the muscle relaxant. Ashton was in gymnastics during the summer, and we thought maybe he did something to his shoulder there.

For a couple of weeks things went fine. The muscle relaxer seemed to fix his shoulder issue. Then I received a call from Ashton’s school. He was in pain and his shoulder was “dropped” again. I still had some muscle relaxer and brought that to him. That seemed to fix the problem again, although it took a few hours. In the mean time we set up an appointment with an orthopedic doctor for Ashton. The referral for this doctor actually came from the ER doctor, although I had yet to set up the appointment because he seemed to be fixed. During the weekend prior to the orthopedic appointment his shoulder dropped more often. We realized by this time the muscle relaxer was doing nothing. Whether he had muscle relaxer or not, his shoulder would drop for a few hours and go back to normal as long as he didn’t overuse it.

When we finally had the orthopedic appointment Ashton’s should was dropping more often, at least once a day. He had a full exam. The orthopedic doctor put Ashton through a series of motions and tested his muscles and bones. The doctor noted Ashton had very strong muscles and there didn’t actually appear to be anything wrong with his bones. However (and isn’t there always a however), he said the problem is more widespread than just one shoulder dropping. With Ashton’s shirt off the doctor had us look at his back. To me his back looked normal. But the doctor noted his shoulder blades sticking out of his back. This is a condition called scapular winging. After the doctor pointed it out I was able to see just how bad it was. His shoulder blades stuck way out. Since Ashton had always been this way, we really never noticed the winging. The orthopedic doctor believed Ashton may be suffering from some sort of nerve or muscle disorder; both of which are out of his area of specialty. He said he would try to find a pediatric neurologist to refer Ashton to.

After a couple of weeks we finally got a call letting us know Ashton would have an appointment with a pediatric neurologist in Fargo. The only problem was the appointment wouldn’t be for about four months. Because of that the orthopedic specialist needed to fill out some sort of paperwork on their end and get Ashton’s case prioritized. After a couple weeks we had to meet the orthopedic doctor again. He informed us the pediatric neurologist he had originally referred us to was the wrong type of specialist and Ashton would not have an appointment in Fargo.

Once again the orthopedic specialist went about finding the right type of pediatric neurologist for Ashton. The doctor also noted this should be done by Ashton’s primary doctor. Since moving back to South Dakota some years ago our family has not had a primary physician. It never occurred to us this would be important. While the orthopedic doctor was working on getting a new referral I setup an appointment with a pediatrician I hoped would become the primary doctor for the two little boys. The doctor I met with ended up being a great doctor and as time went on became a great central point to make sure the medical records from various specialists all made it into Ashton’s file. He also helped us to understand what some specialists have said over the the last year. Oops. I’m getting off track… Back to Ashton’s story.

Finally in about November of 2017 Ashton had an appointment with a pediatric neurologist. We would have to bring Ashton to Gillette Children’s Hospital in St. Paul, MN. From November of 2017 to spring of 2018 we made many visits to St Paul for Ashton to be tested and meet with doctors. The neurologist believed Ashton may have some form of Muscular dystrophy or a neurological disorder. Ashton went through a series of genetic tests to rule out various neurological and muscular dystrophy related conditions. He also went through x-rays, CT scans, MRI’s and a host of other tests.

As time went on Ashton’s condition continued to deteriorate. By the end of the 2017 Ashton would miss a day of school every week or two. As we got into January and February of 2018 it became even worse. Ashton would be home from school one or two days a week. On these days Ashton would have extreme pain throughout his body. The worse of it would focus on his shoulders, knees, and sometimes his lower back. This would last for a day or two, and then suddenly he would be back to normal. It was during the middle of this time-period that Ashton first had to use a wheelchair, and it was for about a week. The poor kids knees hurt so bad he simply couldn’t walk. The doctors showed some exercises to help, and eventually he was walking again. Mentally Ashton was getting in rough condition at this time. He was tired of hurting for no apparent reason. And doctors appointments were weeks between each other to give time for various genetic tests to come back. The long periods of waiting for news from doctors really took its toll on Asthon.

When spring arrived we had our final appointment in St Paul. We actually met a different pediatric neurologist this time; our previous neurologist had unfortunately passed away earlier in the year. The current pediatric neurologist let us know all test results had come back and he said with full confidence that Ashton does not have muscular dystrophy. He believes Ashton is suffering from a type of hypermobility and that a referral to a closer hospital such as one in Sioux Falls would be possible. This was both great news and horrible news. On the one hand it was good to know Ashton doesn’t have MD or any of the other neurological conditions they tested for. But then we realized Ashton would be seemingly starting over with new doctors. The poor kid was not happy about starting over.

Time to pause this story for a short blurb about hypermobility. Here is part of what the Hypermobility Syndromes Association (HMSA) has to say abotu hypermobility:

What is hypermobility?

Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population. It may be present in just a few joints or it may be widespread. It is most common in childhood and adolescence, in females, and Asian and Afro-Caribbean races. It tends to lessen with age. In many people joint hypermobility is of no medical consequence and commonly does not give rise to symptoms. Hypermobility can even be considered an advantage, for example athletes, gymnasts, dancers and musicians might specifically be selected because of their extra range of movement.

For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT).

Ashton had always been flexible. That was part of why he enjoyed gymnastics so much. Actually during his diagnostic phase in St Paul his hypermobility had been noted. But at that time it was thought the hypermobility was a side-effect of muscular dystrophy.

At this point Ashton’s pediatrician was handling the referral. It took a while to find the right type of specialist for Ashton. Finally at the beginning of summer he had an appointment setup for September. We weren’t happy about waiting a few months. But we were told the Sanford Children’s Hospital in Sioux Falls was hiring a new genetic doctor specializing in cases such as Ashton. So we decided to wait it out and see how Ashton handled the summer.

The summer went pretty well for Ashton. He didn’t have to use the wheelchair at all. He still had one or two days each week he couldn’t move. But since we were home he would just hang out in his room. Ashton played midgets baseball. On the days he was having problems the coach would work with him and let him sit on the bench if he was too sore or his shoulder was dropped. There were a couple of game Ashton wasn’t happy with me or Mindy. When Ashton hurts really badly he doesn’t want to be around people at all, even if he can walk. One of the previous doctors said it was important to keep him social and make him go to school or sporting events, even if he couldn’t participate fully. So we did make him go to some games despite his protests. Overall though the summer went pretty well and we were almost thinking he was getting better. Then school began again.

Once school started again he was back to having one or two days a week where he had problems with his knees. Looking back, we don’t really think he was getting worse. It’s just that he didn’t have to move during the summer if he didn’t want to. School involves a lot of walking throughout the day. Instead of keeping him home every time, we were now sending him to school with a wheelchair on the really bad days. Since the beginning of this school year I would say he has had about five or six weeks where he went to school a day or two in a wheelchair.

Ashton’s appointment finally came in September. The only problem was it was set for the second day I would have my first round of chemo. At that time my breathing was so bad it was not possible for me to reschedule chemo; and we had waited so long for Ashton’s appointment we didn’t dare reschedule him. So Mindy took Ashton to Sioux Falls for his appointment while my brother-in-law sat through chemo with me. I really wish I could have gone to Ashton’s appointment. That is another thing cancer has taken from me…

The appointment with Ashton went well. Most of the time was spent by Mindy answering questions for the geneticist and going through his history. The doctors at the Sanford Children’s Castle believe they have a good idea of what type of hypermobility Ashton has. But just as the doctors at Gillette Children’s Hospital had noted, Ashton has some other symptoms that just don’t align with anything else. So he is also being tested for some other neurological condition which may or may not be related to hypermobility. His appointment with a neurologist at the Castle is actually coming up at the end of October.

Ashton also has an appointment with an occupational and physical therapist coming up. The doctors at the castle are covering multiple methods of diagnosing and helping Ashton with his pain. I really appreciate that.

I think two thousand words is enough for one post. In this post I shared a cliff note version of what has happened with Ashton over the last year (I could write a full book about everything that kid has gone through in such a short amount of time). Hopefully this post will help some family and friends of Ashton understand what he has been going through for the last year. I will post any major updates on this site to help keep people informed about his status.