Jonathan Haag, Ketmamine User
Understanding our patients from first hand experience.
In Nov of 1994 while serving on active duty in the US Air Force as a crew chief, I had to have surgery on my left foot. This surgery was to repair the alignment of my bones in my foot that had been injured from coming off a ladder while working on an airplane and from the boots being made incorrectly. The procedure was supposed to be a very simple surgery that should have taken about 45 mins. I woke up after a 3 ½ hour surgery from the pain in my left foot. I was screaming in pain. My left foot felt like it was on fire and the pain was way out of the ordinary for the surgery I had just had. The doctor and the nurse thought that maybe it was the heat from the soft cast setting causing the pain. They immediately took off the soft cast and my foot was still in horrible pain. After a few hours in recovery the foot calmed down some and they sent me home. I was to follow up in a couple of weeks and get the hard cast put on. I had the hard cast put on and thought in six more weeks all would be good, yet I was still having the strange burning and now crushing type pain in my foot. After my foot wasn’t healing right and being in the hard cast for a total of 13 weeks, my foot finally healed up so the cast could be removed. My foot continued to hurt very bad and would turn a bright, shiny red and burn like I had a very bad steam burn. The doctor at the time was starting to get concerned and did some tests. Nothing showed up on the bone scans she did. I was then finally sent to a pain doctor at Lackland Air Force Base. He told me that I had Reflex Sympathetic Dystrophy. He explained to me a little what it was and that I needed to come back for immediate treatment. He sent the note to the surgeon, who should have set up the appointment for follow-up intensive treatment, unfortunately the surgeon never sent me back. At the time I was only 20 years old, about to turn 21. I did recover somewhat after a few more months. I was still having the bone crushing, throbbing type pain and the burning pain wasn’t as bad. I had to get out of the Air Force however due to this injury.
After being out for a few months I started developing worse pain and now the redness and burning pain was back and spreading up my leg, getting closer to my knee area. This was in 1995 right after I got out. Now the leg was starting to swell. The pain continued to get worse. I was now going to the Audie L. Murphy VA hospital in San Antonio, Texas for treatment. I had a total of three more surgeries on the left foot. The last was a partial amputation of the big toe. Then all hell broke loose on my foot and leg with severe pain and constant swelling. I was finally properly diagnosed in 1998 with Reflex Sympathetic Dystrophy (RSD) also know known as Complex Regional Pain syndrome (CRPS). I had started having a series of sympathetic and Bier blocks done to help try to control the pain. I was using crouches the whole time, in addition to dealing with the pain. This was all done with no relief in the pain. In January of 2000 I woke up with the right leg burning and swelling and I knew right away this horrible disease had spread. I immediately went to my doctor who confirmed this and within one week of this appointment both legs had started swelling and hurting so bad I could no longer walk. This is when I had to become wheelchair bound. The seriousness of this really hit me after a few months, my legs had 160lbs. of fluid in them. This led to the first spinal cord stimulator that was removed after five surgeries to try and help the problems I was having with it. Now the burning pain had progressed into my lower back. I was on very strong narcotics and a very high dose at that. I had my second spinal cord stimulator placed in 2005 and this helped some. I also in 2006 had a pain pump placed with a new drug that would be delivered into my spine for pain control. The new drug was Prialt and it helped some at first, yet the year I was on this medication I have no memory of and my hormones were wiped out as a result. Now I have to take hormone replacement therapy weekly. In 2010 my condition greatly worsened and I started experiencing severe cellulitis infections in my legs. I had 13 that year and each time I was in the hospital for 5 days at a time. In the meantime, the doctors said that I had the worst case ever of RSD and that one of these infections would kill me. I asked my doctors about doing an experimental procedure called a Ketamine Coma. They said no at first, but after the infections kept getting worse and worse they finally decided they had to do something. So in September 2010, I checked into the SICU at the Audie L. Murphy VA hospital to undergo a 7-day ketamine infusion. This is when I first met Dr. Ricardo Alvarado. He helped care for me during this time. I woke up after the coma and had a very bad three days of horrible hallucinations, yet the fluid started coming off immediately and the pain was so much better. This continued to get better over the next few months and the swelling lessened so much in March of 2011 they removed 20lbs of excess skin from my legs. This surgery took over six hours and during this surgery they used ketamine so nothing would restart. They also kept me in another ketamine coma for a day after the surgery. I had no problems except for a small infection. I recovered fully after a few months and was getting ready to have a really big surgery. In December of 2011 I had bilateral total knee replacements. I received more ketamine during this surgery and had also been receiving ketamine boosters prior to every 6 weeks. The surgery was a success and then I started therapy. After a few months of intensive therapy, I stepped out of my wheelchair never to look back. That was April of 2012. That fall I enrolled back to college and graduated in February of 2015 with a Bachelor’s of Science in Nursing. I still continue to get ketamine infusions every six weeks and will for life. Right after nursing school I went into the ICU as a nurse where I went through 16 week of intensive training on both the Surgical and Medical ICUs. I stayed there for ten months and left to work at Advanced Pain Relief Institute full time and the Ketamine Infusion Nurse, where I help others with this horrible disease. I started working with Dr. Alvarado in January of 2016 trying to see if we could make the infusion clinic happen. In Feb of 2016 we did the first infusion there and its grown greatly ever since.
KSAT 12 Story
Jonathan Haag, RN.
SAN ANTONIO – An Air Force veteran who has suffered with Reflex Sympathetic Dystrophy (RSD) for years, is successfully on his road to recovery, after a risky procedure and subsequent treatments.
Jonathan Haag, who was diagnosed with RSD after a foot surgery, was confined to a wheelchair for years, due to the condition.
Military vet overcomes rare disorder
“I could describe it as severe burning pain, and crushing pain. It felt like my legs were on fire,” Haag said. “The bones were being crushed and ripped out of my body, all at the same time. It’s pretty severe.”
In 2010, doctors placed Haag in a coma for six days and injected him with the drug ketamine, giving him the kick-start he needed to begin his recovery. Because the procedure is so risky and not approved by the Federal Drug Administration, it is rarely performed in the United States.
However, Jonathan’s doctors made an exception for him, due to the severity of his case.
“I was lucky with my hospital here, that they did it, but a lot of other hospitals won’t do it,” Haag said. “And there’s a lot of veterans out there that suffer, there’s a lot of kids that suffer from it, and that’s the main thing.”
Currently out of his wheelchair, Haag says he still gets ketamine treatments every six weeks for his pain, though it’s not as severe as before.
“I’m no longer in a wheelchair, I’ve been out of a wheelchair for about a year and six months now,” Haag said. “Being able to play with my kids more, being able to go more places. I was very limited where I could go with them.”
Haag said he went to school for nursing, and is active in the RSD community, hoping to raise awareness for the condition, and fighting to get insurance companies to cover ketamine treatments, most of which do not.
“Keep pressing on,” Haag said. “I know the pain is horrible, there’s days when you feel like you can’t go on. Just keep going on. There’s always a brighter side.”