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Healthcare

High centered by life

I was planning to write a blog about how successful my surgery was last week. I was planning to write it a few days ago. Instead my body and life took a detour.

The news that you have been waiting for…”yes Virginia, there is a Santa Claus.” At least that’s what I have wanted to put for so long. I’ve been planning for the day that it would be appropriate to gingerly place this one-liner into a post. Today seems appropriate to do that.

Life has not gone as planned. Surgery was successful; at least I think it was. My sutures are still in place until next Tuesday. At this point there is very limited mobility of my head due to the restrictions of the stitches. My incision is much larger than I had anticipated. It extends across the entire back of my skull.

My husband had already seen the incision and had maintained a straight face while not telling me that I was pretty much split ear to ear. Later that evening, I had one of the Respiratory Therapists take a picture so that I had a baseline to refer to once we came home. One glance and the phone almost fell to the floor.

It was quickly after that point, that I realized the paperwork that I had at home only referred to the greater occipital nerves and not the lesser occipital nerves. Thus, the confusion. Don’t get me wrong, I would have proceeded with surgery regardless of how large an incision there was. The shock value was a little more than anticipated.

We also had some post-operative issues that needed monitoring. Things like not being able to touch the left side of my neck the next day and a “squishy” spot above my incision raised the concern for hematoma formation.

All surgeries carry inherent risks. Even elective procedures face hiccups, especially when combined with numerous chronic illnesses. There is much more to come; probably two or more blogs. I’m going to leave you on a cliff for the moment, because I don’t have the energy to continue typing and this seems like an appropriate point to step away.

Today’s blog is brought to you by the letter, N–nap.

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Healthcare

Phase 2 Migraine Surgery

At the end of February, I wrote about my upcoming nerve decompression surgery. Within that post, there was a promise that I would keep everyone updated. Here it is.

Yesterday was exactly five weeks post-op! The time has gone by so fast, and at the same time has crept by while dealing with pain and the recovery period. After the initial shock had faded away about having two stunning black eyes, I had to keep pinching myself. There was no way that this could be reality. When I went in for surgery, I had a whopping migraine and when I came out; nothing! Of course, the surgical pain was not an enjoyable experience but none of it was migraines.

I have been 100% migraine free for five entire weeks. My hope for the surgery was that the migraines would be less frequent and severe. That would have been a win in my book. This is like a slam dunk! I’m still superstitious that it’s too good to be true but maybe it isn’t. Maybe my leap of faith worked. In the meantime, I am keeping my fingers and toes crossed as well as knocking on wood.

The reason that I sought a surgical consult in the first place was for my occipital neuralgia. If you aren’t familiar with this condition, then you are in luck. I have a little “101 lesson” for you!

Symptoms include continuous aching, burning and throbbing, with intermittent shocking or shooting pain. The pain often is described as migraine-like and some patients experience other symptoms common to migraines and cluster headaches. The pain usually originates at the base of the skull and radiates near the back or along the side of the scalp. Some patients experience pain behind the eye on the affected side. The pain is felt most often on one side of the head but may also affect both sides of the head. Neck movements may trigger pain in some patients. The scalp may be tender to the touch, and an activity like brushing the hair may increase a person’s pain.

American Association of Neurological Surgeons: Occipital Neuralgia

While there have been no migraines, the occipital neuralgia has continued to be a nuisance. Until you have experienced laying your head on a pillow and having extreme pain or have combed your hair and cried because it hurt so bad, there is simply no way to describe the intensity.

Thus, phase two of my lovely surgeries. On Monday, I will be having nerve decompression done on my occipital nerves. The incision will be on the back of my head and four nerves will be worked on in total. Fat will pad each nerve so that scar tissue doesn’t cause problems in the future. There will also be some muscles that are resected in my neck. It will be another big surgery to recover from.

The results of the last surgery leave me feeling hopeful that this will also be a success. Quality of life is so important, and pain has such a massive effect on every aspect of our life. So, on a wing and a prayer, here I go again with a leap of faith. On Monday, if you think of it, say a little prayer.

…and yes, I’ll keep updating everyone!

OR

holiday

Easter Whimsy

When was the last time that you received an Easter Basket or went hunting for eggs? For me it was probably in fourth or fifth grade, at least when the whimsy was still there. So, it’s been quite a few years for me and most likely you too.

Yesterday we had friends that came to spend the night. As supper was finishing up, my husband and I were told that there was an Easter basket hidden for each of us in our yard, along with 48 eggs. The challenge: find your basket and then go after the eggs. If you found the other person’s basket and said something, then you were done.

I must admit that after everything that has gone on the past few months, this was a really nice surprise. Off we went, and that whimsical feeling returned. Suddenly I remembered how exciting it was to try to get the most eggs and see what was in my basket. Admittedly, the baskets were filled with much different items than when we were kids. My husbands–a flashlight, beer, a bottle holder and a lot of candy. Mine contained a spatula, candy, large chocolate rabbit and the best thing of all, was a small, wooden sign. It read, “Swearing because sometimes gosh darn and meanie head just don’t cover it.” That is appropriate here.

We did find all 48 eggs and probably could have a sugar high for at least a week. It wasn’t the material items that made the magic. It was getting to feel like a kid again. Imagining racing for the eggs before anyone else could get them. The memories and getting to reminisce on the age of innocence; that was precious. We needed a dose of childhood again.

Being an adult has its perks but so does being a child. For thirty minutes yesterday, we got to be children again and it was delightful. We also happen to have quite a few rabbits running around here. Last week I was mentioning that ‘Peter Cottontail’ and four of his friends were running laps around a bush in our yard.

For a child, it is moments like these that we remember; also, for adults. We all need to take time to enjoy the view from the youngest generation. There is plenty of time to be an adult…

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advocacy, Healthcare

The Air Up There

This may be a deceiving title for this post but I think you’ll forgive me as you read on. In the midst of the hustle and bustle of life, we forget that things can always be seen from a different perspective. Sometimes it is good to breath in a bit of the air up there.

Today I was having a conversation with a friend who always gives sage advice. Her wisdom never ceases to amaze me. She tilted her head back and looked up. Then she said, “I know this isn’t how you saw yourself in nursing, but truly you are reaching more people now then you were before you got sick.”

After letting the words soak in for a moment it suddenly clicked. Prior to becoming ill and was working in the hospital, I would encounter on a busy day, twenty patients. Everyone was treated with kindness, compassion and empathy. They were treated as individuals and had my undivided attention. However, when I went home at the end of the day or they were discharged, the interaction was over. I always hoped that I made a positive impact on their lives and there are always patients whose circumstances stick with us forever.

Now in this new role, I really do have a broader impact. It definitely is not in the same methods as previously. Each time my words are published, initially they reach hundreds of people. As they are shared through social media, the reach goes even farther.

Being a nurse means so many things. It isn’t just giving medications and monitoring vital signs. It is truly a passion that lives within us. Providing care doesn’t have to be in person. To each of you reading these words, know they are soaked with caring, compassion and desire to truly make a difference.

Consider this:

A caring nurse is a nurse who takes the responsibility for the protection, promotion, and optimization of health and abilities, prevention of illness and injury, alleviation of suffering through the diagnosis and treatment of human response, and advocacy in the caring of individuals, families, communities, and populations

http://associationofnursesworkingforourpatients.org/whatisacaringnurse.html

Advocacy is such a major issue within the medical field. Patients are often left without a voice. Through multiple avenues, I am giving patients a voice, including my own. Living on both sides of the paradigm is something that is intriguing. Insights may be different depending on if I look at things from a nursing perspective or the patient perspective. No matter how many conditions I have, at heart the nurse will always live on.

If you have a spare moment, take a breath of the air up there…

 

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Healthcare

Migraines vs Pain in the Pagers

Twenty-four hours post-op from a nerve decompression surgery for migraines and the patient was miserable with intense pain. The nurse had been paging the residents all day without any response. Giving the maximum amount of medications every three hours along with breakthrough pain dosing had proven to be inadequate. Aside from one precious hour of sleep during the night, the patient hadn’t even rested since coming out of the operating room.

By the way, I’m that patient. This was my big step into the unknown, because I felt like there was something there that was going to be positive. This surgery could be life altering. But, I had to get past the immediate post-op recovery before we could determine if this had been worth it. Botox wasn’t doing its job sufficiently anymore. Occipital neuralgia had added into the nightmare of pain as well. I had taken a leap of faith.

There is something about hurting so badly or feeling so miserable, that it seems like any capability of rational thought process is turned off. We go into survival mode, it’s a protective mechanism that our bodies have preserved through thousands of years of evolution. The only thoughts were pain, hurt, tired and an intense desire to rest.

I have endured numerous hospitalizations for migraines over the course of fourteen years. I know what pain is. Before even figuring out which way was up, I had to figure out how we were going to control my pain, which wasn’t migraines! I already had won on that front. This was pure surgical pain and something that I couldn’t make anyone else feel.

Throughout the twelve-hour shift with my nurse, we had brainstormed numerous strategies for how to get my pain controlled. All of them had gone unanswered with pages. A baby-faced resident came into my room late in the afternoon to see how things were going.

I forgot to mention that in the morning, the group of residents, with an attending MD, casually came into my room and had said that they would get me up and moving and I would be going home in the afternoon. This was all without ever asking how I was feeling about things.

In the afternoon, the resident had no idea what he was up against as he strode into my room. Aside from being exhausted, cranky and at my wit’s end with pain. He had no idea that I was a Registered Nurse also.

When asked how I was feeling, the words just gushed from my mouth. I told him about how much pain I was in and about the pages being unanswered throughout the day. Going a step further I told him about the plan that my nurse and I had come up with for trying to get the pain controlled. When he said that he wanted to lower the dose of one of the medications, I stopped him before he even got the entire sentence out. I said a range would be appropriate so that we could adjust and not need to page them each hour. It would save time for them and the nursing staff, whose hands would be tied if there was a single dose that was inadequate.

Trying to describe the pain and talking about that it isn’t a “one size fits all” kind of sensation, nor is the medication required to control it. Each person is different and that needs to be considered. I also told him that my blood pressure medication had been ordered incorrectly and that needed to be fixed. After going over ALL the dosages, medications and issues for the day, I shooed him out of the room so that he could enter orders before he forgot them.

While this encounter may sound harsh, it was the only time that day that I was finally empowered. Patients shouldn’t have to accept inadequate care. My nursing background did give me another leg to stand on as well. My surgeon came in later that evening and said that we definitely needed the modified treatment plan and to take whatever was needed to get comfortable.

This situation did have an adequate resolve. My pain got controlled, blood pressure medication was ordered, I got to rest and amid everything, also taught somebody about the art of medicine.

The next morning a case manager was sitting in my room chatting and the resident came in to check on me. I apologized to him for perhaps coming off a bit harsh the prior day. However, I also reminded him that when a patient is in a bed, we are already in a vulnerable state. It is up to the health care team to advocate for us.

As he walked out, I mentioned that he and his fellow residents should take these events as a learning moment for how they will each practice medicine moving forward. Even as they are treating patients, they should be learning something from every single person and that should continually mold them.

This blog was written for HealthSparq and What’s The Fix 2018 #WTFix.
Originally published https://whatsthefix.info/migraines-vs-pain-pagers/

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Healthcare

Quilting Medicine

Each day as I gaze across the room, I smile at a picture of a quilt. That may be seemingly simple, but to me it is beauty in every meaning of the word. The following quote is next to the picture.

“Families are like quilts,

lives pieced together,

stitched with smiles and tears,

colored with memories,

and bound with love”

That quote may seem simple to some but is so meaningful on a lot of levels for me. A family isn’t just born. Everyone has a different relationship, interacts with others slightly different and naturally finds that perfect mix of people. Events in our lives change the shape of families but love always takes precedence.

As someone who quilts, truer words have never been written. There is something about how precise each cut of fabric must be. The precision of sewing each seam and having a work of art come together right in front of your eyes.

The other day as I was working on a quilt, I was pondering the quote. It struck me how easily this could also be applied to healthcare and medicine. The precise cuts for each square or border can be compared to a surgeon making opening incisions for an operation.

Healthcare truly is a work of art. It may not seem like it many days, but a very large majority of the caregiver population, truly love the profession that they have chosen. I know that choosing nursing was something that I always wanted to do. There was never a doubt in my mind.

The process that takes place when a provider is assessing us, providing a treatment plan and follow-up recommendations can be compared to sewing a quilt together. All the pieces must be in place before it can be completed.

Many times, there are issues with our healthcare or health status and we are forced to take a step backwards or several. The same is done with a missed stitch or crooked seam on a quilt. Until the other day, I never had thought of healthcare this way. It is true though. Look at a quilt or blanket on your bed. The intricacies and character.

This takes us right back to “lives pieced together.” Every member of our family will eventually have an encounter with the healthcare community. Losing a portion of that quilt can be earth shattering. Then we are forced to pick up the pieces and move on, figuring out life once again.

quilt flowers

Healthcare

Take a hike migraine!

Twelve days and counting. That’s how long I’ve had my current migraine. Yes, twelve days and no, that isn’t a personal record either. I just realized this morning that the only time I’ve seen the light in the last couple weeks has been if I have had an appointment. Otherwise the blinds have all been closed as a constant pain has its grips on me.

For millions of Americans and even more on an international level, chronic migraines represent a very disabling medical condition. If you haven’t ever had one, then consider yourself among the lucky. Take the worst possible headache that you have ever had and amplify it by at least twenty times. Then add in light, noise, taste, and smelling sensitivities along with the intense desire to throw up. Mull it into a lovely mixture and that is just a tiny glimpse of what many of us face multiple times a month, sometimes daily.

My migraine journey began when I was eighteen. It made me so sick and I didn’t have the slightest clue what it was. If only that ignorance could have continued a little longer. Before I knew it, we were trying prophylactic medications like they were candy. One wouldn’t work so we would move onto the next class of drugs. Nope, cross off another one, yes that one too. In less than three years we had exhausted the prophylactic realm as well as abortive medications.

Going through college with migraines was an absolute nightmare. If nursing school wasn’t enough stress, this added another element. Numerous trips to the Emergency Room for rescue medications and never being able to get them to just go away FOREVER.

Fourteen years have passed since I received the dreaded migraine diagnosis and I can’t even count how many times I have been hospitalized, many of which were for a week at a time. Ten years have included receiving Botox injections, which is becoming much more common. However, my dose and frequency has maxed out, leaving me with nowhere to turn if things ever quit working. Every ten weeks I have been getting 25 injections for one round of Botox. Don’t get me wrong, that was like night and day. It took me from three to four migraines a week, down to three or four bigger migraines in three months, in addition to a few smaller ones.

For me the Botox was nothing short of miraculous once I received approval. However, enter in autonomic dysfunction and the whole picture changed again. Three years ago, I started developing occipital neuralgia and the only treatment that really helped that was nerve blocks. So, my schedule became Botox every ten weeks and nerve blocks every twelve weeks. My addition skills haven’t diminished through everything. Let me tell you, that is a LOT of poking and prodding on your head. My multiple pulmonary emboli last spring made it so that nobody would do nerve blocks anymore.

I already had been doing research for several years about migraine surgery and had kept pushing it to the back of my mind, thinking that if things ever got extreme that it was something that I was informed about. Last summer after my neurologist had quit looking for other options of treating my occipital neuralgia, I went back to work trying to figure out what could be done. My migraines were being directly impacted by this.

The first thing that came to mind was the surgery that I had put into my file a few years before. After a consult with one of the plastic surgeons who performs the procedure, the planning started. He said that I was a good candidate. The BIGGEST part was that I couldn’t have any Botox or nerve blocks for five months! I almost choked when he said it, but I knew that we were at a point that we needed to try something. I had initially just gone in for a consult for the occipital pain and we determined that we needed to do more. Everything has risks, and this does too, but I feel like there is a glimmer of hope to get at least some quality of life back. If we accomplish that, then this surgery is a win.

I saw my autonomic specialist last week and was updating him regarding having the procedure. His eyes lit up immediately. He said he was very excited to see if any of my autonomic issues will settle down some. I also was thinking the same thing. Everything is so hypersensitive, so if we can perhaps dial back the migraines, maybe other symptoms will mellow a little.

The possibility exists that there could be a complete stop to the migraine. However, that isn’t something that I’m expecting. If we can decrease the severity and frequency, then we have made a difference. Perhaps being able to stop the Botox at some point would be conceivable, but even decreasing dosing and frequency would be nice things. We don’t know how this will turn out.

Now that I’ve told you my story, I’ll start filling you in on the procedure(s). My case will be a two-phase surgery. The first one is on Wednesday, Feb 21! This week!!! The second one will be April 9. Don’t worry, I will do updated blogs as the healing and recovery process go on, so that you can all stay in the loop and see how this works.

Even though everyone has been calling this “migraine surgery” technically it is nerve decompression surgery. There are many websites with information, but Cleveland Clinic is where the procedure was investigated and developed. This was after they were having patients come back after cosmetic procedures saying that their migraines were gone.

There is a great blog that describes the process. I’m going to link to that so that we aren’t reinventing the wheel with blogs :). Without further ado…Migraine: Choosing Surgical Nerve Decompression Candidates. I will make mention, that my procedures will include doing fat grafting around the nerves that are decompressed so that scar tissue doesn’t build up and compress them again. Much of the research that I’ve done hasn’t mentioned that element. Also of note is that there are a limited number of plastic surgeons who do the procedure nationwide.

Other nerve decompression resources:

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