Hi everyone, this is Breehan!

For this neuro-related blog, I wanted to focus on an usual neurological disorder known as Thoracic Outlet Syndrome (TOS), explained well in a 2015 article from the journal Vascular Medicine by well-known TOS surgeon Dr. Ying Wei Lum.

TOS is when the brachial plexus and/or the subclavian veins and arteries that are proximal to the plexus, near the collarbone, are compressed by one or more structures that make up the thoracic outlet.

The compression is usually caused by a “cervical rib,” an elongated transverse process that generally comes from C7. The extra rib can fuse with the first rib, which then causes compression. The scalenes and subclavius muscle can become spastic hypertrophied, and fibrous, further contributing to the compression. In addition, the pec minor, levator scapulae, and rhomboid can develop spasms and fibrotic tissue.

TOS can be caused by a past history of acute trauma or chronic repetitive movement.

The reason I am interested in this particular disorder is because I am afflicted with TOS. I have the “extra rib” coming off of C7 on my right side. I present with the classic symptoms of TOS—Constant severe pain in my neck, clavicle, cervicogenic migraines from the tight scalenes, and cervical dystonia from the spasms. The vascular symptoms in my right arm due to the compression of the subclavian artery cause my right radial pulse to completely disappear when I use my right arm and it often feels cold, fatigued and achy, like any patient with intermittent claudication in their legs. Mine just happens to be in my arm.

According to Lum, I am at risk for clots and aneurysms in my arm, which requires me to avoid using my right arm too extensively and watch for symptoms of one. If I were to get a clot, I would need emergency treatment, thrombolysis and need anticoagulants until I am able to have surgery, which I am going to have next month at UCLA with a vascular surgeon.

I followed Lum’s recommendations for my treatment, starting with physical therapy to correct my hunched over posture, which worsened my TOS pain and Botox injections to help relax the spastic muscles. When these conservative therapies failed and the TOS pain and dysfunction worsened, the neurologist I was seeing recommended surgery.

The decompression surgery I will have next month at UCLA is the same one Dr. Lum performs at Johns Hopkins. The surgeon resects the “extra” rib plus the first rib, both of which are causing the compression. He then partially removes some of the hypertrophied spastic scalene muscles. This should enlarge the thoracic outlet and eliminate most of my symptoms.

Lum notes that there is no real cure for TOS, only treatments to put it into a remission of sorts. While my vascular symptoms will be gone, the neurogenic ones causing the severe pain may or may not return.

There are two reasons I wanted to discuss TOS today. First of all, it is rare but not entirely unheard of and it is important that nurses be aware that it is possible to have intermittent claudication as well as clots and aneurysms in an upper extremity. The patients with vascular emergencies will be seen in critical care for these reasons but there is another reason TOS patients seek out the emergency room: Severe, unremitting pain.

TOS is by its nature very hard to treat. It affects me every single hour of every day as I await my surgery. The pain is deep, achy and severe. It is similar to having one of those horrible “charley horse” muscle spasms you may experience in your legs that goes away. Except my pain sticks with me and almost any activity triggers it. Even lying in bed on my affected side causes severe neck and head pain.

Some TOS patients present to the ED looking for help with their pain. Because they “don’t look sick,” TOS tends to affect young, healthy people, these patients are often not taken seriously or worse, treated as drug seeking.

But these are people experiencing very hard to treat neuropathy and must be treated as such and as patient advocates we must believe them when they say their pain is a 10/10. TOS is hard enough to live with as it is, and we nurses can either choose to make their day worse when they come seeking help, or we can be a bright spot while they deal with this very difficult diagnosis.

Lum, Y. (2015). Thoracic Outlet Syndrome. Vascular Medicine, 20(5), 493-495. doi: 10.1177/1358863X15598391

HCAHP. How patients are changing Health Care

HCAHPS stands for Hospital Consumer Assessment of Healthcare Providers and Systems. HCAHPS provides a standardized survey instrument and data collection methodology for measuring patients’ perspectives on hospital care. Before HCAHPS there was no standardized way to collect data, and the problem was you could not effectively compare hospitals and care. So care and services could not be effectively judged. So the impact of this Survey is Financial. This influences the amount of money hospitals get from the State and Government.

I agree wholeheartedly with this. People should know beforehand the type and quality of care they will receive. And the health care team should know how they are performing and how they could improve. This will drive up the quality of care and improve the hospital setting for the patients and staff. The down side is not all patients take part in the surveys and the patients who take part were either very happy or very unhappy with the service. Thus the data is not comprehensive and all inclusive. I don’t think with holding funding from hospitals is the answer because this is a very sharp double edged sword. Normally it is the poorer hospitals or communities that suffer the most. In poorer communities the hospitals depend on the Government money in order to remain solvent and keep the hospital doors open. But whether the solution is HCAHPS have definitely improved the quality of care patients receive. I have personally seen the effects of this. Health care staff are more attentive to patients. Patients rounding has improved and so has pain control and specifically the sharing of information has increased. Patients are now more aware of what is happening during their stay and what they could expect. This awareness gives patients better control over the environment. Another positive effect that I have seen is patient education has increased and by this I mean health care staff are spending more time educating their patients on medication, conditions and procedures. Health care is part of the service industry whether we want to believe it or not and the clients have a right to choose and expect a certain level of quality in their care

Thinking about end of life care is not easy…this topic has been coming up a lot in critical care clinical, as I have been taking care of patients that have been given dire prognosis, more so than in any clinical so far. When I was assigned a day with the case worker, I was surprised how often this topic came up, which was every time. Cottage case workers review each patient’s advanced directives and encourage the patient to have written instructions included in their file in case of an end of life event. I found that there is a booklet called “the Five Rights” which is a legal document that outlines an individual’s wishes for several scenarios regarding end of life care. I witnessed several patients refuse to speak to the case manager about these wishes, and others be completely open, even if their condition was fine. In these cases, these patients were simply well prepared.

I asked the case worker if I could have a copy of the Five Wishes booklet and took it home. I read through it and found questions that I felt comfortable answering, and some others, not so much. Maybe actually thinking of details made me uncomfortable, I’m not sure. That night I also approached my mother about the booklet. To my surprise she knew all about it and said that she thought she had filled it out, but wasn’t quite sure where it was. My mother is Chinese, and in our culture we do not speak of death or arrangements, but do have a strong cultural tie to confucianism, which honors the dead as part of the current living family. I knew then that she was a bit more open-minded than some of my Chinese family and asked her if we could chat more about the Five Wishes booklet. After several minutes, we agreed to arrange a meeting between my sister, her and myself to fill out booklets. I felt morbidly relieved!

I recently was doing research for a paper that included aspects of ritual and culture at time of death. Although the authors of these articles could give many examples of end of life cultural norms, they also specified that it could vary. I believe that the last ingredient is always each individual’s emotions, experience and expectations regarding death and the dying. Any combination can influence the actions that occur at the end of life, whether an individual openly/willingly participates in their own or another’s.

This is definitely the case in regards to the meeting with my sister and mother that I tried to arrange. Here we are, weeks later and my sister has been delaying our meeting. On my mother’s and my side, we have been trying to make arrangements to get the booklets filled out as soon as possible. In a sad coincidence, a friend of the family is in hospice care at the moment; my mother and I have been paying regular visits and it has been difficult. Even more difficult is that he has no advance directives and can barely speak. He would consider himself a traditional Chinese man and has been avoiding any topic regarding end of life care, even with his doctors. There are many details, including the fact that he owns a dog, that are left hanging. Until recently he was refusing to agree to a DNR as well. As my mother and I have been seeing what happens without clear instructions, it has fueled our desire to fill out the Five Wishes booklet.

I understand that every individual is unique and has a right to the end of life care that they desire. What makes this hard to face is that end of life involves family, friends and a healthcare team, so it is important to make sure that all those involve know what the patient wants. It can be a difficult conversation, or as in my mother and my case, one that is relieving.

When my grandmother was dying, she was brought back to her home from the hospital. My father and his siblings all stayed in the house and cared for her, with the help of visiting hospice nurses. One day towards the end, my father heard my grandmother tell one of the nurses how embarrassed and sorry she was that the nurse had to deal with her incontinence. The nurse turned to my grandmother and said simply, “I love doing this.” To this day, my father will tear up when telling that story, and hearing it from him had a strong residual effect on my brother and me. Now when I think about death, I still remember the story he told us when we were kids, which I’ve turned into a kind of romanticized death fantasy. I imagine myself in the place of my grandmother, dying in bed at home, surrounded by my kids and cared for by angelic-looking hospice nurses. It’s the same image since I was 7, I haven’t updated it at all, despite my much more current interactions with illness and aging. I think I’m really unable to think about it more seriously than that, I just kinda turn off.

My father is the same way. Whenever I broach the topic he either says he wants me to drop him off in the woods and drive away when he gets too old, or that I don’t need to worry about dealing with him at all, cause he’s going to “ride the big wave” when he’s ready to check out. However, by treading carefully with him and talking about the deaths of his parents, rather than specifically his death or mine, we were able to both have a (slightly indirect) conversation about our wishes related to end of life care. I was unable to ask about funeral stuff, but the healthcare questions are almost more about values and beliefs and much easier to talk about.

Thinking about death has always been something that makes me uncomfortable. I used to think that these uneasy feelings surrounding death were “normal”. However, the more I think about it, and talk about it, the more I think my feelings are influenced by the culture and society I live in. Death is not something that has been openly discussed in my life and is not something I have had much experience with. When deciding to embark on a career in healthcare I was nervous and curious to see how my thoughts surrounding death would develop. I knew I would be more readily putting myself in situations where I would be exposed to dying and death and I felt this might be really good for my personal development. Death is something everyone will have to go through at some point. I feel gaining comfort with death and dying most likely makes you more able to help not only others through the process but to help yourself when the time comes.

I’ve had limited conversations with family members and friends surrounding death. I feel confident in my parents and significant other that they know me well enough to make a decision I would be happy with if something were to happen. However, I think it is important we have more conversations to better understand each other and what we would want. Hopefully clarifying our thoughts would make things easier for those having to make the decisions if something were to happen. I love that there are organizations such as Death Over Dinner encouraging individuals to talk more openly about death.

If I am ever put in the position to influence some of the events surrounding my death there are a few things I would focus on. I would want to ensure the “important things” are incorporated into the end of my life. To me this is spending my final moments with loved ones. I would want to surround myself with family, friends, and animals that I love. It would also be important to me to be in a place that I am comfortable with. For me this would most likely be being at home and being outside as much as possible. I would love to be able to make a final visit to the mountains and the ocean not only for myself but also to bring my loved ones on a final adventure together to remind them of the things that matter most.