Vanessa’s Story

Site created on September 17, 2019

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Journal entry by Vanessa Link

I am so many things, it is hard to describe in one space. I am a married mother of 2 boys, one 13 year old that is typical, and one 10 year old that is atypical. My younger son has autism, sensory processing disorder (SPD) and is partially blind in the left eye, with blindness progression in both. If I did not have my hands full prior to my diagnosis, I definitely do now. I am an RN. Prior to my diagnosis, I worked in the ICU and loved education and patient care. That part of my life is over. I still mourn the loss of the work I loved, but I have grown to love my new job as well. I now love nursing education and have found a new passion in writing simulations and case studies. Adult education is a different shift, but I cannot imagine my life without it. I was continuing my education with my MSN, when I had a pseudo-stroke during PT, (I will talk more about that in a different post). So, unfortunately, I have put my education on hold, but not my entire life. Let's talk about how I got to this point...

I started off so basic, just stubbing my left 2nd and 3rd toes while vacuuming. No big deal, yeah it hurt like hell but I'm a nurse. You suck it up and keep going (I think that this motto is in the NCLEX somewhere... just kidding... sort of).  This toe stubbing incident started in January of 2018.
As the weeks progressed, my foot still hurt. The top of my left foot started swelling and I could not bend my toes. Alas, there is always work to be done, so I keep going. First I thought the issue was crappy shoes. So I kept buying new and "better" shoes. By April, I had a great tennis shoe collection and I could barely walk. My husband forced me to call the doctor about my foot. At this time, it had affected the way I walk, so yeah, I guess it was time. The stubbornness that comes with being an experienced RN, makes me think I could have been alright until I couldn't put the shoe on anymore. 

My first doctors appointment, they took immediate x-rays. Nothing was broken. Typical plan of action (and dealing with insurance acceptance) means if it may be broke or small muscular tears, I should be in a walking boot. So, walking boot it was. When people saw it, I told them it was seriously painful to walk, but they had just assumed I was talking about the boot being uncomfortable or painful. I went from independent walking/limping to the boot, then partial weight baring, then non-weight baring with crutches in the matter of 9 days. I think I spoke to my inital physician or his nurse, every day or every other day. I knew this pain was not normal, and I knew that I needed to take the boot off. I needed an MRI but insurance wanted me in this boot for 30 days. My doctor had to call and do a peer to peer evaluation of symptoms to get the MRI approved in 12 days after diagnosis.

I got the MRI, and the pain and burning was intense. I couldn't imagine how to deal with this constant throbbing and sharp shooting pain in my left foot. I was at the point where I could not bend my toes and I was ready to amputate. I have never been so pro-amputation until I developed this insane disease. The MRI showed that I had developed bone marrow edema in the top of my foot and my 2nd and 3rd toes. Bone marrow edema only develops in pregnant women (which I was not), and autoimmune diseases. This development indicated that the walking boot made me develop this edema, and made everything else so much worse. My doctor then stated that he thought I had CRPS (which I may have heard of only once in my life) and I started me on lyrica. I thought that he was partially insane.

Complex regional what...? I figured this was some kind of BS disease diagnosis that they gave me until they could figure everything else out. I was pushy, asking for blood work and titers to be drawn. I needed a better answer, let's try ruling some things out first... Everything came back slightly elevated. It took 3 days for the lyrica to start working effectively. This happened on a Sunday. I called the doctor and left a message that they medication had worked and I was giving into this diagnosis. MY next step was physical therapy (PT).

PT was tough, I had tears in my eyes but I pushed through as well as I could. I appreciated all the issues that they were helping me work through but they also had unrealistic expectations. I have been experiencing ups and downs with regard to functionality. They wanted me to consistently improve. This is not probable with this disease.

Right from the beginning I had told, (and still tell) every doctor that I need to be narcotic free. No narcotics or pain meds. Yes, I only take Tylenol. I had lost a good amount of strength in my hands, and my left foot felt like it was dead half of the time. I was scheduled with a pain management physician. We continued with the lyrica and set me up for a sympathetic nerve block in the back. My first nerve block was fantastic. It lasted for 12 days. We then tried a left ankle nerve block. This was one of the most painful things I have ever had done. I was almost crawling to the ceiling, and my poor husband's hand was crushed. That procedure gave me almost 2 months of pain relief. With every procedure that we were doing, the pain was creeping higher and higher up my left side. This eventually meant it had spread to my left hand and arm. We thought that it also spread to my right hand, as I was experiencing weakness in my right hand and foot.

This lead to getting lidocaine infusions intermittently, in an attempt to relieve the increased extremity pain I was now dealing with. These were much better at first. It lasted 3 weeks. We were doing these monthly and continued to do so through February, 2019. As I kept my physician in the loop about all the progress and regression symptoms I was experiencing, my left arm and hand were getting weaker and weaker. He decided to send me for an EMG. This was probably the second worst thing I have had done. The EMG was done in August, 2018. They said the results were WNL, showing no damage. This meant that the CRPS was spreading up my arm and into my shoulder. *Fantastic*

In the meantime of researching alternate paths for medications and therapys, I was still going to PT. My neurologist had suggested that we work on releasing the stress from my cervial discs as well. Nothing ever hurt and I felt a huge difference in neck pain at first. Then we started mechanical cervical traction. I had 4 visits where I did this until the last one ended them all.

At the end of September, I was in the mechanical traction when my left side shot pains from my foot to my face. My face went entirely numb and I could barely move my left arm. I got out of the traction, and my husband drove me to ER. They called a stroke alert on me, while everything came back negative. I went in on a Friday, and it was until Saturday evening that I had seen an actual neurologist. They said it may have been a TIA or complex migraine as all my scans and blood work was cleared, and there were no visual signs of a stroke. I just needed to follow up with my neurologist. After all was said and done by the neuro, he called it a complex migraine, possible pseudo - stroke but my symptoms should resolve. (They never did.)

I went back to PT and they suggested pool therapy. I never felt more like Shamu than being in a small pool with glass panels where the outsiders are watching you move around. I ended up continuing therapy until the end of December. Again, we were plateauing on the expectations (which is NORMAL for a CRPS patient) and I could just complete exercises at home. This was ridiculous, and made me wait on any PT for months.

I also looked into alternative medicine through Ancient Chinese Medicinal practices. Acupunctue is NOT for everyone. Dry needling was instantly ruled out. I tried basic massage and heating practices. I began trying deep breathing and meditation for pain control.  I looked into regenerative medicine, but I did not see enough evidence to support it helping my specific case. Plus I had to pay over $7K, out of pocket. Ummm no.

I had looked for alternate options. Other ways to subdue this pain. I did find in UH, a physician group that specializes in CRPS. I signed up for my first appointment in November. My second appointment would be in December but I had already signed up to have a large dose, one day ketamine infusion. I could not get into the facility to have this done, until April 1st. The physician did not  have any questions about whether or not I truly had CRPS, as I had had multiple scans and blood work done and the bone scans were consistent with a bone wasting diagnosis. Plus, I had this great party trick of my feet turning different colors and sweating. So much fun...

While we waited for the ketamine, we changed medications multiple times. At the beginning of the year, I switched from lyrica to gabapentin.  I was hoping that I would have less side effects, as I had gained almost 40lbs. That was a horrible process to go through, and I had to cancel many times from social plans and work to make it through. I also am a migraine sufferer since 12 years old, and they were getting out of control. We were using medication changes and lidocaine infusions until April, to pass the time. I had my last lidocaine infusion in the middle of February and the physician decided to wait on any further changes of any kind until after my ketamine infusion.

The ketamine was horrible to recover from, but it gave me 3 weeks of relief. I called my pain management physician to get in and try something else. This was not working and I could not deal. I am one the 15% that the ketamine does not get the proper relief from, as it was supposed to last 6 months, minimum. It did take the burning sensation down but it all was still there. I felt defeated.

When I spoke to my pain management physician, he was in shock that it did not last longer. He lost total control of his "doctor poker face" and scrambled to think of something that we could do quickly. I was set up for another lidocaine infusion the following week, in May, 2019. After this lidocaine infusion, I felt minimal changes and they lasted for 36 hours. I went back to the same physician, who spoke about trying the same methods again, because it gave some kind of relief. "We just need to keep chipping away at this pain until we have a breakthrough." He scheduled me for my 4th sympathetic nerve block in the first week of July, 2019.

This was supposed to give me some relief. The entire procedure was chaotic, my IV infiltrated, I passed out from the intense pain in my left leg/foot and now in my back. My blood pressure went low... 70's/40's. I had almost no pain relief, and I was terrified to do this again. I looked around for a second opinion on pain management. I ended up choosing a physician who was over an hours away, but looked credible enough.

2-3 weeks later, I was sitting at home, eating dinner and my entire right arm went numb. My vision was slightly blurred but I could not move my arm. I could hear but I could not speak. After a long trip in the ER for another stroke, they stated it was a complex migraine (again) or pseudo-stroke. I was left to make an appointment with my neurologist (over an hour away) and to "be on brain rest" for a week. I thought it was slightly odd that I had never seen a neurologist at this visit, but that may be protocol. My left hand and forearm was stiff and had a huge loss of function. I could barely move my last three fingers to make a fist. I was ready for a new doctor...

This new pain management physician was intense.  My initial visit was in August, 2019.
After telling him this long, detailed story, he decided that we need to start eliminating the medications that are doing nothing. I 100% agreed. Why am I taking these medications if I still have the pain? They clearly are no longer working. We maxed my gabapentin dose and started deleting medications from my list. I had been on topamax ER for 3+ years. To detox off of that medication made me feel like I was a totally different person. I felt like I was a drug addict, becoming so dizzy I could not stand, nauseous and twitching/shaking. After 3 weeks, I finally started to feel better. Holy crap, I had no idea what that mediation had done to me.

That brings us to September, and now you're pretty much all caught up. You can check out details on a few of these incidents by looking through the dates... Whew! You made it.
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