As Parents, We Did Everything We Could
Written by Isabel and reposted with permission on the RSDSA blog.
My 17-year-old son broke his leg at football practice the summer before his senior year of high school. The X-ray showed a broken fibula in two places and one of the pieces of bone was pinching the peroneal nerve. The orthopedic surgeon was concerned about foot drop because of possible damage caused to the nerve. He warned us that foot drop might still be present even after surgery to repair the fibula. Foot drop would require our son to wear a brace on his ankle for the rest of his life. Little did we know then that “foot drop” would have been way better than the CRPS he ended up with.
Immediately after the surgery, pain spiked even more than he had in the four days waiting for surgery. Our son, Austin, was in excruciating pain. The hospital discharged him with a cryo ice machine to help with the swelling and a prescription for pain killers that is normal for a fibula repair like the one that he had done. Four days after surgery, the surgeon reached out to us to check in on Austin and how he was doing. We told him that he had been in constant pain and could not get off the couch without assistance and that the foot was discolored (pink). The surgeon instructed us to bring him in to his office. He diagnosed the color change from the calf down to his toes and touched his foot lightly and then applied a little pressure on the foot’s affected area. In both instances that the foot was touched the response was the same. The pain was excruciating for our son. The surgeon informed us that Austin most likely had RSD (Reflex Sympathetic Dystrophy – another term for Complex Regional Pain Syndrome aka CRPS). Austin could not put any weight on his leg. He was bedridden, but more like couch ridden. He required help for everything including getting to the restroom and bathing. The surgeon made a referral for Austin to see a pain specialist.
Twenty days after surgery, we visited the pain specialist. We were so excited to learn this doctor studied CRPS at Harvard. We could not believe in our small town we were able to find someone with knowledge about this disorder. The doctor explained how painful CRPS is and compared it to the pain an amputee feels. He planned out six sympathetic lumbar nerve blocks over the next several weeks. Each block provided a few hours of relief and at this point we were grateful for every minute of relief. We had him doing physical therapy three times a week and we scheduled those close to the nerve blocks so he would have less pain and more mobility. The doctor also started Austin on Gabapentin. The dosages were increased to the max of 1800 mg a day. The pills helped with some of the electric shocks he would get however the side effects were less desirable. Austin was “foggy,” and unable to answer questions or remember simple things. He was still unable to put weight on his leg and so he was confined to the couch. He could not even have the ceiling fan on because he could feel the pulse of the fan blades blowing air on his foot. The air waves hitting his foot would cause throbbing pain. We made a box so he could put his foot inside to keep the air waves from causing him any additional discomfort. His leg was purple and swollen. The hair on his leg would hurt him. A sheet touching his skin was too painful. We made a box over his leg so he could have a sheet on his body at night. He could only move around with help or crutches. His skin temperature was hot and he would be sweating even if the temperature was cold. Sometimes it was just his leg, other times it was his whole body.
After the six lumbar blocks were completed, the pain doctor (the “Harvard CRPS specialist”) wanted to take a “wait and see” approach to our son’s care. We tried to follow his advice, but our son was in so much pain. We began to research alternative treatments for CRPS. We asked the doctor about ketamine infusions. He was completely against it. We felt we now had to put our son’s care in our own hands as we could not see him in this pain.
Against the pain doctor’s advice, we scheduled our son for two weeks of ketamine infusions. The infusions were all day outpatient. Our son slept through most of the infusions and we were grateful he could sleep. The dosages were increased and his pain diminished from a 10 to a 7-6 on the first day of treatment. That was the first time in months that he was able to sleep in his bed. As the ketamine infusions continued and the dosage increased, the pain kept dropping. We able to get it down to a 5-4 on the pain scale. The ketamine infusions were not covered by insurance and were very expensive. As parents we did everything we could, using our savings and taking out a hardship withdrawal from our retirement account to pay for all of the treatments that we did to keep our son from being in the pain that he was in. Eventually after many appeals, our medical insurance reimbursed us for part of the ketamine infusions.
Austin continued to do physical therapy and aqua therapy. The aquatic therapy pool was an hour away. We would drive there three times a week. It was the only time we could see our son “walk” again without assistance while in the water. I broke down in tears every time. These therapies were giving him some more movement but he was in a lot of pain. I did a lot of research and tried acupuncture for two months as well. Austin did not feel much of a difference. I continued to search for more treatment options. My husband and I felt we were racing against a clock because the best chance of remission from CRPS is within the first six months to a year. At this point we were almost five months in and he was still unable to walk without crutches. Our search led us to stem cell. We found facilities that were in Florida and very expensive. Luckily I came across a physician locally who had just opened up a functional and regenerative practice. I contacted this doctor and he had been a pain doctor and was tired of masking people‘s pain. He was familiar with CRPS, but asked us to wait until he could learn more before treating our son. It just so happens he was set to attend a seminar for physicians treating CRPS with stem cell. I could not believe the luck and so we waited.
I will mention this doctor’s name because I believe he was Godsend to our family. His name is Dr. Jonathan Tait and his practice is in Oro Valley, AZ. He ended up doing two procedures on Austin a few months apart. Both procedures were stem cell transplants (from Austin’s hip) and PRP (Platelet Rich Plasma). Since Austin’s CRPS was a result of a major nerve injury, we felt targeting the site of his nerve injury with stem cells could repair some of the damage. The doctor injected the stem cells into the myelin sheath near the injury site. Prior to these treatments, Austin’s entire foot was where he felt the majority of his pain. He had numbness and shocks in his calf near the injury site. After the procedures, Austin’s pain decreased and the numbness and shocks were less. It was a turning point. The pain doctor was against this procedure as well and probably many people with CRPS would be afraid to have needles injecting into their area of pain, however it was a risk Austin was willing to take due to the pain he was feeling and frustration with his inability to walk and live his life.
Austin reported feeling a difference and his rehab was moving in the right direction. Dr. Tait recommended Hyperbaric Oxygen Treatment (HBOT) to help with the stem cell growth. I had read this had been helpful for people with CRPS. There was a clinic offering HBOT treatment about an hour away. This was also an expensive treatment not covered by insurance. Within three HBOT treatments, Austin’s pink/purple leg began to look normal. After seven treatments, both his legs were the same color and size (not swollen). He completed many treatments (45) at the clinic, however to cut down on costs, we purchased a home HBOT. He uses the home HBOT daily and it finds it very helpful.
Dr. Tait also wanted Austin to not be reliant on pain pills or Gabapentin. It was this physician who helped us come up with a plan to wean him off of these drugs. Dr. Tait also wanted Austin to change the way he ate. We had read before how certain foods (sugar, pork, etc.) can cause more nerve pain and so we figured let’s do this plan! The doctor had him tested for food allergies and sensitivities and put him on a strict plan. Again, pain was reduced and other symptoms he had been having were also reduced. Austin had a lot of digestive issues after starting the Gabapentin. The diet helped with this as well.
After all of this, our son was still mostly homebound and only able to go to school for a few hours a day. This was his senior year. He had been a popular kid with lots of friends. He was on the football team and his hopes for an athletic scholarship were out the door. He was unsure if he would even be able to complete the 12th grade and graduate. Socially, it was very difficult. Many friends came by when he had initially broken his leg. When he was diagnosed with CRPS, friends seemed to dwindle down. People just do not understand the disorder and level of pain. Eventually only a few friends checked in and visited. It broke our hearts to see how a happy 18-year-old boy with his whole life ahead of him was now depressed, in pain, and alone with the exception of his family. There were many nights he cried and shouted, “why?!” As parents, we felt the same “why?!” We feared for him. We were afraid he was going to commit suicide. We put him in counseling even though he did not want to go.
So now he is seven months into CRPS and we kept searching for a cure. Now, I know there is no cure but I prayed every day for one, I still do.
I saw on the internet some had success with Calmare. We showed the testimonials on Dr. Michael Cooney’s website to my son. It gave him hope. He was still weaning off the Gabapentin, but this gave him motivation to wean off since you cannot be on nerve medications for Calmare treatment. We set up flights and hotels for a few months away to go to New Jersey for Dr. Cooney’s Calmare. We prayed this would be the cure or at least the path to remission. Our son graduated high school. We had dreamed of him walking across the stage to get his diploma, walking without a thought of pain, but that was not the case. He walked with a cane and he had pain but we were so proud of everything he had overcome.
June could not come sooner. The flight was so difficult as the air pressure causes someone with CRPS a lot of pain. He was still using the walker or crutches to get around. He was unable to wear shoes! The only shoes he could wear on his CRPS foot was a diabetic slipper. It has Velcro straps allowing it to have more room, but he still had to apply a ketamine cream or a lidocaine patch to numb the top of his foot. Socks were hard as well but he could tolerate a fuzzy sock. We arrived and met Dr. Cooney the next day. This man was another angel in our son’s life.
Dr. Cooney explained the scrambler therapy to us. I would have never thought something like this could help anyone but when you are desperate you are willing to try it all. As a family, we were desperate and we deeply wanted our son to live without this pain and be able to walk! The treatment was painless. Other than the doctor touching his foot, which any touch was uncomfortable, the electrodes do not hurt. They emit a painless signal. The first few days, there was not much decrease in pain, however Austin slept a lot which was unusual. The doctor was determined to help Austin and would change up the placement of the electrodes each day. Finally a few days later, Austin reported feeling less pain and being able to touch his foot. We located a HBOT clinic in the New Jersey area and he continued with this as well.
After a week with continued improvement, we asked the doctor if we could double up on treatments. He agreed as Austin was showing improvement. When Austin completed the Calmare treatment, he could wear shoes and did not need a walker or the ketamine cream or lidocaine patches on his foot. He could even touch his foot. It was for us, a miracle! For the next month, per Dr. Cooney’s instructions, he had no physical therapy and had to simply REST. This was scary advice to follow as we were afraid he would regress, however we had Austin follow the advice. He was in almost no pain. He was at a level 2 to 4. He could walk unassisted! He was slow but he was walking. After a month of rest he started walking on a treadmill on a daily basis and increased his level of activity. He also started going to collage two days a week so that also helped to get him walking and back to a normal routine.
After a few months some pain started to come back. As per Dr. Cooney sometimes a calmare booster is needed to settle the effected nerves back to their normal state. Luckily for us we found Dr. Wade in Glendale Arizona only 2 hour away. We took him in for a Calmare booster, three treatments. Austin’s pain was now down to a 1 to 3. The last Calmare booster was over a year ago. I am happy to report that Austin is in remission, not cured but not in pain. He worked up to wearing various shoes and he was able to do this by using a tub of rice and immersing his feet in the tub for 10 to 30 minutes a day for desensitization. He continued on the treadmill and was in such great shape he went snowboarding various times last winter. Snowboarding was his goal and it was tough to get there. The boots are painful and he knew he had to get used to shoes and improve his stamina and balance. He worked hard every day using snowboarding as a goal and his hard work paid off. Austin’s rehab was almost four hours a day. It included two hours HBOT (home chamber) and two hours of treadmill, exercise bike and weights. He also did the rice desensitization daily until he felt he did not need it.
CRPS remission is not like a cancer remission. There are still occasional shocks and a lot of stiffness, especially in the morning. Austin gets up an hour earlier and sometimes uses a cane until he does not feel stiff. He can finally sleep in his bed with sheets but he wears a fuzzy sock on his CRPS foot because though he does not feel pain, the sensation of sheets feels awkward. Weather also impacts him. Cold can cause more joint stiffness.
Every CRPS case is different and what works for one person may not work for another. This story is what helped my son.
There are things I wish we would have known from the beginning and so I hope my son’s story helps someone out there. Here are some tips I wish I would have known:
ICE and cryo are detrimental to nerves and bad for CRPS
MOVE – It hurts, but keep moving as being immobile makes you more immobile
Go to physical therapy (PT) as early as you can. Every little bit will help you get further. Water PT is even better!
Try to not rely of walkers or wheel chairs. Do your best PT to stay mobile.
Counseling – If you are in chronic pain and depressed get help, talk to someone
Pain pills and Gabapentin – In our case, we wish we could not have used these at all or as long as he did. If you can, try treatments like Calmare and HBOT that are painless before medications. This is a personal choice but it is one of the biggest regrets I have.
Consider diet changes and research supplements. Austin takes fish oil, R-lipoic acid and B-Complex (for nerve health), tumeric (anti-inflammatory), vitamin C (for no CRPS spread or recurrence) and Neuro-Mag (magnesium- calcium channel blocker).
If a new surgery is needed for an unrelated condition, take vitamin C before and after surgery (50 days total – we use 1000 mg time released). Also read up on anesthetic protocols to help prevent CRPS spread. A ketamine infusion during surgery and an epidural could help as well. Consult with your doctor and the anesthesiologist prior to any procedure.
If you are a caregiver or loved one, be understanding of the pain your loved one is feeling. Be supportive and be present. Our son was a teen and when we should try to let him be more independent we were babying him. We learned to stop asking all the time about his pain. Asking about pain reminds people they are in pain. As he got better, we tried to give him chores he could do and allow him to be more independent even though we wanted to coddle him.
Other therapies that Austin thought were helpful were mirror therapy, Epsom salt foot baths, rice tub for desensitization, and red light therapy.
Occasionally Austin feels shocks in other parts of his body, but it has not spread. He gets up and moves around and it goes away. Do not stress about it, just move!
As difficult as this CRPS situation was for our son and our family, we were fortunate to find some great doctors. We thank:
His surgeon Dr. Ty Endean. We are grateful for his quick diagnosis as a delay in a proper diagnosis can be even more detrimental to treatment or possible remission.
Dr. Jonathon Tait for his dedication to treating our son and his compassion and genuine care for Austin’s best health. This doctor is one of a kind and a blessing to anyone in his care. He believes in looking at alternative treatments for rare conditions and overall health.
Dr. Michael Cooney for his knowledge of CRPS and expertise in Calmare and helping patients worldwide.
Dr. Ryan Wade for his knowledge of CRPS and Calmare treatments.
Dr. Carol Henricks for her Hyperbaric Oxygen Therapy Treatments and understanding of CRPS.
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