Round two was not as good as round 1.  On the first day, we started the dose between the second and third day last time I went under (about 3 cc's) and they pushed the ketamine quit aggressively.  In my hallucination I started to feel nauseous and and almost threw up.  They doctor came in and gave me some medicine to help with the nausea, which helped, but it sure made waking up hard.  I don't remember any of the hallucinations during this round.

Day two was a little better.  I went to 3.5 cc's.  As I went under, I had a bad feeling that what I was going to see was not going to be as interesting as last time.  This time, it was dark, very dark.  I remember trying to run from this darkness that was everywhere. It boiled and seethed and was restless.  It was thick like oil, but as fluid as a billowing fog.  It was trying to overtake me.  I could not get my bearings, up was down, down was up.  The only think I could possibly compare it to would be outer darkness.  It was horrible.  I forced my eyes open to try to get some grip on sanity and when I closed them again, I saw a light I started to run to.  As I ran, the blackness chased me, surrounded me and tried to swallow me. Just as I got to the light, it shrank back enough for me to escape.  I don't know how long I was there, but it seemed like forever.  If this is anything like outer darkness, I feel deep sorrow for those who go there.  I came out okay, but at the car I threw up and had a massive headache.  I sleep little that night.

Day three they bumped me up to 4 cc's.  This was the highest dose I have had.  I was extremely scared to go under after yesterday.  My blood pressure was up and I was fighting the anxiety.  I went under fearing the worst.  This time, I could not remember anything.  I did force my eyes open for a while and talked to Dana, but it was more confusing to see Dana and hallucinations at the same time. At one point I asked her if I was a machine, and I asked her if she could see the ribbons of gold and silver dancing around.  I made it through and was able to recover from this round better. Dana told me to go down and fix my knee, but I told her I had already pushed the pain down my leg and out my foot.  I remember pushing from my head to my toes and watching the pain shoot from my left leg in a blinding ribbon of light.  I kicked my left foot to get free of it, and it shot across the room and through the wall and was gone.

So far, the swelling is down and the pain is gone.  The affect of day two still haunts me and I am having problems sleeping.  I don't ever want to see that again!

Our doctor told us this was his last week at the clinic and he was going back to practice at the hospital. This is good since we found a new doctor.  I was given a blessing a couple of weeks before and one of the blessings was to find a good doctor.  We did.  The new doctor has access to U of U pain clinic and has already suggested some other routes to battle the CRPS.  For now, I am physically okay, but I am still shaken by what I saw on day two.  I hope with time it fades away.

My Battle With CRPS

All,
Due to our lack of getting information to everyone, and to help clear up the situation, we are sending this update with more detail. We appreciate all the calls we have received, and thank all those who have contacted us. As Dana and I got to talking we thought it would be best to let everyone know exactly what is happening with me as well as the family.
Last year I was visiting the graves of Mike (father-in-law) and Howard (his brother) at the local cemetery. On the way back from visiting Howard’s grave, I scooped up Gillian in my arm and started to walk back. Half way back I stepped into a hole hidden in the grass and went down. Since I was holding Gillian, I did not want her to get hurt, so in order to prevent the injury I landed with the full weight of my body and Gillian’s body slamming my left knee on a headstone.
During the next month my knee began to buckle and started to hurt. I complained of “ants” crawling under my skin and there was tenderness to my knee. We scheduled an appointment with an Orthopedic Surgeon who decided to go in a look around.
After surgery on my knee, the pain continued to get worse, it got so bad that even the lightest touch on my knee would shoot pain up my spine. We visited other doctors and they all gave different answers to the problem and continued to prescribe a variety of NSAIDS (ibuprofen type drugs) trying to ease the pain. In late November and early December I visited the ER three times for pain in my chest and stomach, and eventually wound up at the U of U where they found my stomach riddled with ulcers. I spent a week at U of U and the whole month of December at home recovering. During this time, I continued to complain of acute knee pain and the “ants” were marching so much that I kept brushing my knee trying to wipe them away. At this point any touch whatsoever on my knee sent pain rocketing up my back and I started to lose sleep, often getting only 3-4 hours a night.
In January I was sent to a pain clinic where I went through a series of 4 sympathetic lumbar blocks in my spine (a six inch needle was put next to my spine and medicine was injected to block my sympathetic nerves). It was during this procedure where they diagnosed me with CRPS (http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome and http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm). There is no cure for CRPS, and the diagnosis devastated us. During this time while we were trying to put this into submission, I slipped deeper and deeper into a vicious pain cycle where I got more and more depressed and hurt so bad I could not function. I was on at a variety of anti-seizure, anti-depressants, and pain pills. As the doctors tried to treat me with a variety of medicines I got sick, my appetite dropped and became more and more withdrawn. My leg hurt so bad I shuffled to work and I developed a facial tick every time the pain shot through my body. My speech was impaired due to the pain and I developed a server stutter. My co-workers and kids referred to me as “zombie John” because I looked like a zombie. I was only getting 3 hours of sleep a night which didn’t help the depression and my mood. Often I would come home from work (I have two jobs, my regular job and I teach at Weber State two nights a week), eat a piece of bread, take all my pills and lay in a dark room until I passed out from exhaustion then wake up multiple times through the night due to pain.

As the pain progressed, I was given Dilaudid (Hydromorphone http://en.wikipedia.org/wiki/Hydromorphone) which is a very powerful narcotic drug to try and ease the pain. I started out on a low dose and quickly went higher and higher trying to get on top of the pain. We had to fight our insurance company for the drugs that were prescribed often force on another type of medication that wasn’t “exactly the same” only to have my condition worsen and the switching of drugs made me throw up.
The only option the insurance company would allow was a spinal cord stimulator which would be implanted in my back to block the pain signals. This is an invasive surgery where a permanent device (similar to a pacemaker) would be implanted in my hip with leads going to the spine. It was considered radical and both Dana and I prayed about this solution and we both received strong confirmation that the stimulator was not the right course of action to take. We asked if there were any other options.
Our doctor gave us another option to try and control the pain called a Ketamine Infusion (http://en.wikipedia.org/wiki/Ketamine). It involved me getting an IV and be given high doses of the Ketamine through a three day process increasing the dose each day to try and “reboot” my brain. It was not covered by the insurance, so we took the last of our money and I underwent the procedure. It was a hard three days of my life. I was mentally, physically battered and felt like I was stomped by elephants each day. A blessing was I was able to withstand the higher doses so I was given high doses. The infusion worked for 5 weeks suppressing the pain.
CRPS involves the sympathetic nervous system (http://en.wikipedia.org/wiki/Sympathetic_nervous_system) which controls the fight or flight response as well as other functions. It is always on monitoring for changes and notifying the body of changes quickly. It is not used normally to transmit pain. In CRPS, this system takes over pain signaling to the brain. Because this system never shuts down, it sends pain signals to the brain all the time. The most common complaint with CRPS is the “burning” sensation. I liken it to putting a heating pad on the highest setting and putting it behind my knee or a bad sunburn that never cools down. However, unlike a heating pad, you can’t shut this off or remove it to get any relief. The fear is that this will hardwire a pain signal to the brain that will not shut off. Think of it as a highway to the brain, non-stop. The Ketamine acts like road work that can disrupt the pain signals to the brain and the hope is to destroy or shut down the “highway” for good. The spinal cord stimulator only blocks the signals, but the highway is there getting bigger and bigger only I would not know it, it does not tackle the problem itself. However, if you look at the time and effort to destroy a highway, the same effort is needed for the Ketamine to destroy it so to speak, so it takes a toll on me and my body. The body, however, will try to rebuild the paths back, so any time I feel the pain coming back, we need to act fast to stop it, so I will be stuck with these infusion my whole life. Over time, I may build up a tolerance which would make the infusion worthless and we would have to look at other options.

On May 6th (right after the infusion) I suddenly started to shake in my hands that spread to my arms and quickly to my body. I could not control the shaking. Soon I was shaking all over the left side of my body and could not stop. Dana threw me into the car and drove me to some people in the ward with medical training. They saw me in the car having a grand mal type seizure and called the ambulance. I was taken to the hospital again where I shook on my left side for 2 ½ hours before they could control it with Valium. This episode exhausted me. The next day, I suffered another “seizure” where I shook for 30 minutes before we could get another Valium into my system to stop the shaking.
I went back to the doctor and we found that I was having an extreme reaction to the medicine I was given and we lowered the dose and it appears to work. I must confess, as I watched the video Dana took of me seizing, I broke down into tears, and I could not watch it. Just to write about it makes me upset it was that scarry.
After we adjusted the medicine, I was almost back to normal, having gone through what I did, I am no longer the same person and I don’t think I will ever be. During my infusion I “saw” a lot of things and it was more of a spiritual journey bringing me closer to Christ and his scriptures. People have commented that I am not the “old John” they remember, I smile more, but I have change. I cried when my youngest two daughters climbed in my lap gave me a kiss and said they were glad I was back.

The beginning of June the pain began to come back and I am now suffering again as the pain returns. We are scheduled again for another Ketamine infusion hoping we get it early enough to give me a longer time without pain. However, since we have to pay for them ourselves, this is the last money we have for this procedure.
CRPS is a neurological disorder that is not well understood and at this time has no cure. The best we can hope for is a remission, the worst is eventual paralysis as the limb becomes weaker and weaker, the bones soften and the skin turns purple. CRPS will often “spread” to other parts of the body often mirroring the pain in the original location to another. For example, the pain was located in my knee, but it is now spreading down my leg and up my hamstring. It can start to manifest in my other leg as it progresses. CRPS not only affects the physical it also affects the mental as well. Not only does the pain cause depression, CRPS has been found to affect the part of the brain that affects mood and appetite.
Dana and I are trying to come to terms with my condition; she continues to “fight” this monster to not take me back to the darkness I was in. I must confess, I feel like I walked through hell, and do not want to go back. We have shed many tears together emotionally exhausted trying to come to grips with our future. During the last 8 months, I watched my wife become a single mom while I lingered in the dark under the influence of heavy medications.
During this time, we had another baby boy which we scheduled close to my last lumbar block hoping it would help enough for me to be there for Dana. It didn’t work and I didn’t even bond nor care about Nathaniel for two months. My kids became scarred of me, which put me further into a depression. I became dependant on the Dilaudid and the first two weeks of my recovery after my infusion I was going through with drawls becoming moody, mean and I would shake constantly before I got over it. So I may not have hurt, but I could not enjoy my family for another two weeks due to the withdrawls.
This has turned our world upside down, not only for me but for Dana and the kids. She had to make choices where to put her time and as a result, the house is chaos and my boys have had to take on extra chores to help. Simple maintenance on the house has been overlooked. Austin has been sleeping with a broken window for a year now; weeds are taking over on the side of the house. We are at the end of our rope and don’t know how much more we can take.
I want to help so badly, but cannot risk further injury or acceleration of the CRPS, so I sit on the sidelines depressed and crying while I watch my family working twice as hard to make up for me and to see the look of panic on their faces if I complain of pain. I see the feeling of hopelessness on their faces as I struggle with the pain and there is nothing they can do to help. I see the hurt in their eyes when I can no longer interact with them due to pain. It was a tease for me to “be back” for 5 weeks only to be taken away again.
There is some hope to put my CRPS into remission for longer. UCLA has a pain clinic which specializes in CRPS and has a month long program to help people cope and overcome CRPS. The Doctors there are on the cutting edge of finding a cure and methods to control CRPS. It is not cheap and, of course, the insurance will not pay. Dana and I are trying to organize fundraisers and other methods to save enough money for me to go. It is believed if you catch it early enough, you have a better change of remission. My family has agreed to go without to help save (which makes me feel guilty I am taking away my kids childhood). However, we both believe that if I do not go, I will continue to get worse and eventually wind up in a wheelchair and in the end be bedridden and invalid. I don’t want to miss my life, my wife or my kids. I want to be as healthy as I can to participate in the lives of my children and grandchildren but if we don’t act soon we fear that the CRPS will eventually swallow me and I will be gone.
We have been fighting this for so long and putting so many resources to this fight we haven’t kept everyone in the loop, and we are now going to give more updates as this continues. Now as we go to the next round, we are asking for prayers and to join us in a fast on June 24th for my family and me.
We don’t know what the future holds and that scares Dana and me. The emotional rollercoaster we are on tests our emotional endurance and we find ourselves on our knees praying for some relief. The help we have received from ward members and friends has been invaluable and there is not we can thank you enough for what you have done. May God bless you for what you have done, and we will continue to update you as the situation changes.
Feel free to pass this on to family members I may have missed. They were not omitted on purpose, and I would like everyone know what our situation is and what the future may hold.

John and Dana