Healthcare

Something Only Dreamed Of

Such a vague title, I know. Vague on purpose because it begs for explanation and digging deeper.

When I was eighteen I never imagined that a single condition was going to impact my life from that moment forward. One evening, a very noticeable pressure and sharp, aching sensation developed behind my left eye. Any noise or light made it hurt worse. At first, I thought it was just a tension headache, but as the first hour wore on, it quickly turned into something that I hadn’t ever experienced before. Nausea gripped my body with its jagged claws and quickly I became a prisoner of whatever this was.

We ended up in the Emergency Room; the first of many trips. Diagnosis: migraine. Now fast forward fifteen years to 2018. After failing every single preventative for chronic migraine and finally ending up on Botox in 2008, I had reached a point this year that I opted for more drastic measures. I was trying to figure out how many emergency room visits and hospital admissions I have had since 2003. Generally, at least one hospital admission a year, and on the low side, thirty ER trips in fifteen years. Each time was because I was I had exhausted all of my options available at home.

If you’ve been following my blog through the winter and spring, then you know that I had two surgeries. The first in February for the migraines, in which nerves were decompressed, muscles resected, and fat grafts placed around the nerves to prevent scar tissue build up. The second was in April for occipital neuralgia and involved nerve decompression, fat grafting and muscle resection. Even though I had done as much research as possible, I still took a gigantic leap of faith.

The question for months has been did it work? Was it worth the horrific black eyes that lasted for weeks? Was it worth the pain? Was it worth the breathing complications after each that resulted in re-admissions? One word: ABSOLUTELY. As of today, June 17, 2018, I have been migraine free for 110 days.

Was I expecting these results? Heck no! I went into the surgeries hoping for a reduction in severity and frequency. If that would have been the outcome, I would have considered it a win.

But 110 days without anything is a homerun! It’s the first time in more than fifteen years that I haven’t experienced numerous headaches per month. It still seems too good to be true. I keep waiting for a headache; keep waiting for everything to fall apart.

Superstition has a big part in my life, especially with being a nurse, it’s probably two-fold. I refuse to adjust my medication list and remove the migraine meds and I refuse to go anywhere without at least two doses of medication with me. Maybe in ten years I’ll be brave enough to overcome the superstition, but not yet.

Since June is Migraine and Headache Awareness month, I really wanted to get a blog written for it. My experience isn’t like others. Nobody’s is the same as another. Our stories are as unique as we are people. There may be similarities, but we are each so different. I know my journey with migraines is not over and honestly am not sure that it ever will be. But for now, things are controlled and I’m perfectly content with that.

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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

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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