HBOT for Amy
Donation protected
My name is Amy Miller and I am really hoping to receive help to defray medical treatment costs. My medical history is a complicated one. I am a 36-year-old high school teacher and have been dealing with a nervous system disorder since the summer of 1998. I was junior in high school and was diagnosed with RSD (Reflex Sympathetic Dystrophy) in my right foot and my life changed forever. I thought I would go to college on a volleyball scholarship, but that was taken away. At 17 I was told if I ever walked again it would be with a distinguishable limp.
RSD is a parasympathetic nervous system disorder that can occur spontaneously but usually follows a minor injury. It affects the nerves that are responsible for sensation and pain. As a result, the affected area is extremely hypersensitive. In addition, the area will change color and temperature as a result of the stimuli the affected nerves are sending to the brain. The area will also frequently swell and sweat. The worst part of RSD is the hypersensitivity.
Hypersensitivity is the intensified nerve reaction to various sensation. For instance, taking a shower was incredibly painful as the water droplets felt like bricks falling on my foot. I know this sounds hard to believe, but it is harder to explain while experiencing it. Another part of the condition includes the quick degeneration of muscle. So even though it is incredibly painful to move, if you do not move it, the ability to move it will diminish. I decided since this was the case, it was better that I have the condition in the foot as all I had to do was keep walking. It was easier to move my foot that it would have been to move my arms.
Even though I knew I would never be pain-free, after several spinal blocks, physical therapy, surgery on my foot, and the implantation of a spinal cord stimulator, I had reached a tolerable pain level and was leading a semi-normal life without the active part I had envisioned for myself. I had earned a college degree, was teaching elementary students with multiple disabilities, and had a place of my own. I was finally happy again and thought I had taken my life back from the effects of RSD.
Then in the spring of 2010, I suffered a twisting injury to my left arm and I am left-handed. After delayed treatment, RSD settled into my arm. I thought experiencing RSD in my foot was bad, but my arm was worse. I was correct in that it was much more difficult and required more discipline to keep my arm moving to prevent muscle degeneration. When I returned to my pain doctor for my arm, it was back through the same routine of spinal blocks and occupational therapy this time. Also, I learned the condition was now being referred to as RSD or CRPS (Complex Regional Pain Syndrome).
During the beginning stages Dr. Choi, my doctor of 12 years, left for California. Dr. Atallah at the University of Toledo Medical Center agreed to treat me even with a stimulator already implanted. He changed the spinal blocks to axillary blocks which are in the armpit and replaced my stimulator with one that had the capability of controlling leads implanted in both my lower back and neck to control pain in both my right foot and now my left arm as well. I thought it would be a similar experience to the implantation in 2005. However, the device was not that adept at controlling the pain in my arm as it was in my foot. As a result, I was unable to work and had to move back home as I could not do many things for myself.
Prior to accepting the fact that I could not do much for myself, I gained around 80 lbs as a result of eating fast food because I could not cook and could not exercise because any jarring of my arm resulted in intense pain. It got to the point where I carried my arm around on a pillow to try to avoid movement from hitting bumps in the car and incidental contact in doctors’ offices, hallways, and stores. I also, even though I lacked the funds, purchased a hot tub on credit as sitting in the hot water was therapeutic and my only escape from the pain. I got in the hot tub every day. While the pain was hard to deal with I was not ready to go on disability so I changed jobs and started a new routine of blocks. The blocks were helpful for a while, but I developed a tolerance to where a block would only help for less than three days. My doctor was supportive of my desire to keep working so he kept seeking new solutions to pain control. I went through a wrist surgery to free the thumb tendon to help me keep my hand and wrist moving. This was successful in allowing more movement but did little for pain reduction.
The next attempt was a brand new model of a stimulator. I went back into surgery to change the type of stimulator in my spine. It was during this surgery that the doctor realized my spinal cord rolled to the left in my lower neck which led to a less-than-ideal placement of the leads. This meant the stimulation degree to my left arm would need to be increased to attempt pain reduction. This was successful at pain reduction but not relief and led to another complication; I could not run the stimulator and work as it caused muscle spasms. Again, I wanted to continue to work so I went back to blocks, this time we tried stellate ganglion blocks which resulted in zero relief. I continued running the stimulator at night and on weekends, but the pain control was slipping away. My life at this time consisted of work, hot tub, and rest. I struggled to sleep as running the stimulator kept me out of deep sleep and not running the stimulator resulted in very broken sleep as any time my arm slipped off the feather pillow, I jolted awake. Before I got out of bed I would have to use my right hand to physically extend all of my fingers and bend my wrist in order to keep the movement. My wardrobe went through a drastic overhaul as I struggled with being able to handle different types of material on my arm. I found I was able to stand Cuddl Duds softwear, so I wore those under everything; I still do as I am still seeking pain reduction.
The next suggested treatment was a controversial first rib resection. So I decided to do it and in June 2015 I underwent one more surgery to remove the first rib on my left side to allow more room for the brachial nerve and artery to pass through. I experienced a significant pain reduction and I thought I was going to make it through. Then in the middle of November, with no indication, the pain came back even more intense than before the surgery. Not only was the pain more intense, but the restricted blood flow was extensive as my hand was now turning black. It was to the point that the students were noticing the color change and swelling. Once again, my life was reduced to work, hot tub, and bed. The sleep was still a problem and my hand was getting harder and harder to get and keep moving. Still, I was not ready to give in and quit work.
Next up was a new and radical treatment; prialt. This included another surgery and implant. A pump was placed in my side and prialt was run through it straight to my spinal canal so it would work in my spinal fluid. Again, this resulted in minimal pain relief and some scary side effects, so this was stopped and I started narcotics for the first time. The narcotic was pumped into my spinal fluid through the implanted pump, they are not consumed orally. I was beginning to think I would have to stop working when I started researching a treatment they are using in Great Britain. So, the next time I went to see my doctor I asked about it. HBOT (Hyperbaric oxygen treatment) has been used in Great Britain on RSD, they have not adopted the parallel name of CRPS, with great success. Although it is in trial phase, it has presented patients with hope. Before my doctor would suggest it as treatment he sent me back to the vascular thoracic surgeon, Dr. Nazzal. This trip consisted of testing to verify the entire rib was removed as a small bit of rib could have been left and would have to be removed before HBOT could be sought.
So, this is where I am today still dealing with intense pain and a life reduced to work and rest. The doctor has exhausted his options as HBOT is not FDA approved for my condition. I am willing to take this risk in hopes of attaining a meaningful life and, for now, this is the last known treatment. This treatment consists of 60 consecutive visits. During these visits, I will enter a chamber and be dropped to a level equivalent to the pressure of 40 feet below sea level. Once down, I will wear a special hood that will allow me to breathe pure oxygen that equates to 220% of the oxygen in a normal breath. These visits to the chamber are referred to as “dives” and last for two hours a day. The thinking behind this is new nerves will generate faster than they will degenerate and I will be able to get ahead of this disorder. If it is successful at reducing my pain level, it is not a one-time treatment. Maintenance dives will be needed approximately every 6 months to keep in front of my nerves, but it would only be 5 visits in a row, never 60 again. I am hopeful my experience may help others struggling with the same condition and even help this treatment gain the attention of the FDA.
I am beginning the treatment in April to help limit the time off of work because this time I have to take unpaid leave. Prior to this round of treatment, I have amassed a lot of medical bills. Unable to pay these bills, I put them on credit cards. Now I am completely upside down in debt and with this unpaid leave affecting even my summer pay, I will not be able to afford my typical bills. In addition to the past bills, this treatment is $150/hour and has a total estimated cost of $18,000. On top of this, I have to endure the cost of travel to the treatment facility. This includes gas, turnpike tolls ($8/trip), and overnight cost. The medical rate at the hospital contracted hotel, Radisson is $90/night. As a result, I feel as though I have no option but to ask and hope for the generosity of others. Although insurance is covering part of the treatment I am left with the remaining balance. I am so sorry I have been reduced to this, but I am hanging my hopes on this treatment. I sincerely appreciate you taking the time to read this and for your consideration.
RSD is a parasympathetic nervous system disorder that can occur spontaneously but usually follows a minor injury. It affects the nerves that are responsible for sensation and pain. As a result, the affected area is extremely hypersensitive. In addition, the area will change color and temperature as a result of the stimuli the affected nerves are sending to the brain. The area will also frequently swell and sweat. The worst part of RSD is the hypersensitivity.
Hypersensitivity is the intensified nerve reaction to various sensation. For instance, taking a shower was incredibly painful as the water droplets felt like bricks falling on my foot. I know this sounds hard to believe, but it is harder to explain while experiencing it. Another part of the condition includes the quick degeneration of muscle. So even though it is incredibly painful to move, if you do not move it, the ability to move it will diminish. I decided since this was the case, it was better that I have the condition in the foot as all I had to do was keep walking. It was easier to move my foot that it would have been to move my arms.
Even though I knew I would never be pain-free, after several spinal blocks, physical therapy, surgery on my foot, and the implantation of a spinal cord stimulator, I had reached a tolerable pain level and was leading a semi-normal life without the active part I had envisioned for myself. I had earned a college degree, was teaching elementary students with multiple disabilities, and had a place of my own. I was finally happy again and thought I had taken my life back from the effects of RSD.
Then in the spring of 2010, I suffered a twisting injury to my left arm and I am left-handed. After delayed treatment, RSD settled into my arm. I thought experiencing RSD in my foot was bad, but my arm was worse. I was correct in that it was much more difficult and required more discipline to keep my arm moving to prevent muscle degeneration. When I returned to my pain doctor for my arm, it was back through the same routine of spinal blocks and occupational therapy this time. Also, I learned the condition was now being referred to as RSD or CRPS (Complex Regional Pain Syndrome).
During the beginning stages Dr. Choi, my doctor of 12 years, left for California. Dr. Atallah at the University of Toledo Medical Center agreed to treat me even with a stimulator already implanted. He changed the spinal blocks to axillary blocks which are in the armpit and replaced my stimulator with one that had the capability of controlling leads implanted in both my lower back and neck to control pain in both my right foot and now my left arm as well. I thought it would be a similar experience to the implantation in 2005. However, the device was not that adept at controlling the pain in my arm as it was in my foot. As a result, I was unable to work and had to move back home as I could not do many things for myself.
Prior to accepting the fact that I could not do much for myself, I gained around 80 lbs as a result of eating fast food because I could not cook and could not exercise because any jarring of my arm resulted in intense pain. It got to the point where I carried my arm around on a pillow to try to avoid movement from hitting bumps in the car and incidental contact in doctors’ offices, hallways, and stores. I also, even though I lacked the funds, purchased a hot tub on credit as sitting in the hot water was therapeutic and my only escape from the pain. I got in the hot tub every day. While the pain was hard to deal with I was not ready to go on disability so I changed jobs and started a new routine of blocks. The blocks were helpful for a while, but I developed a tolerance to where a block would only help for less than three days. My doctor was supportive of my desire to keep working so he kept seeking new solutions to pain control. I went through a wrist surgery to free the thumb tendon to help me keep my hand and wrist moving. This was successful in allowing more movement but did little for pain reduction.
The next attempt was a brand new model of a stimulator. I went back into surgery to change the type of stimulator in my spine. It was during this surgery that the doctor realized my spinal cord rolled to the left in my lower neck which led to a less-than-ideal placement of the leads. This meant the stimulation degree to my left arm would need to be increased to attempt pain reduction. This was successful at pain reduction but not relief and led to another complication; I could not run the stimulator and work as it caused muscle spasms. Again, I wanted to continue to work so I went back to blocks, this time we tried stellate ganglion blocks which resulted in zero relief. I continued running the stimulator at night and on weekends, but the pain control was slipping away. My life at this time consisted of work, hot tub, and rest. I struggled to sleep as running the stimulator kept me out of deep sleep and not running the stimulator resulted in very broken sleep as any time my arm slipped off the feather pillow, I jolted awake. Before I got out of bed I would have to use my right hand to physically extend all of my fingers and bend my wrist in order to keep the movement. My wardrobe went through a drastic overhaul as I struggled with being able to handle different types of material on my arm. I found I was able to stand Cuddl Duds softwear, so I wore those under everything; I still do as I am still seeking pain reduction.
The next suggested treatment was a controversial first rib resection. So I decided to do it and in June 2015 I underwent one more surgery to remove the first rib on my left side to allow more room for the brachial nerve and artery to pass through. I experienced a significant pain reduction and I thought I was going to make it through. Then in the middle of November, with no indication, the pain came back even more intense than before the surgery. Not only was the pain more intense, but the restricted blood flow was extensive as my hand was now turning black. It was to the point that the students were noticing the color change and swelling. Once again, my life was reduced to work, hot tub, and bed. The sleep was still a problem and my hand was getting harder and harder to get and keep moving. Still, I was not ready to give in and quit work.
Next up was a new and radical treatment; prialt. This included another surgery and implant. A pump was placed in my side and prialt was run through it straight to my spinal canal so it would work in my spinal fluid. Again, this resulted in minimal pain relief and some scary side effects, so this was stopped and I started narcotics for the first time. The narcotic was pumped into my spinal fluid through the implanted pump, they are not consumed orally. I was beginning to think I would have to stop working when I started researching a treatment they are using in Great Britain. So, the next time I went to see my doctor I asked about it. HBOT (Hyperbaric oxygen treatment) has been used in Great Britain on RSD, they have not adopted the parallel name of CRPS, with great success. Although it is in trial phase, it has presented patients with hope. Before my doctor would suggest it as treatment he sent me back to the vascular thoracic surgeon, Dr. Nazzal. This trip consisted of testing to verify the entire rib was removed as a small bit of rib could have been left and would have to be removed before HBOT could be sought.
So, this is where I am today still dealing with intense pain and a life reduced to work and rest. The doctor has exhausted his options as HBOT is not FDA approved for my condition. I am willing to take this risk in hopes of attaining a meaningful life and, for now, this is the last known treatment. This treatment consists of 60 consecutive visits. During these visits, I will enter a chamber and be dropped to a level equivalent to the pressure of 40 feet below sea level. Once down, I will wear a special hood that will allow me to breathe pure oxygen that equates to 220% of the oxygen in a normal breath. These visits to the chamber are referred to as “dives” and last for two hours a day. The thinking behind this is new nerves will generate faster than they will degenerate and I will be able to get ahead of this disorder. If it is successful at reducing my pain level, it is not a one-time treatment. Maintenance dives will be needed approximately every 6 months to keep in front of my nerves, but it would only be 5 visits in a row, never 60 again. I am hopeful my experience may help others struggling with the same condition and even help this treatment gain the attention of the FDA.
I am beginning the treatment in April to help limit the time off of work because this time I have to take unpaid leave. Prior to this round of treatment, I have amassed a lot of medical bills. Unable to pay these bills, I put them on credit cards. Now I am completely upside down in debt and with this unpaid leave affecting even my summer pay, I will not be able to afford my typical bills. In addition to the past bills, this treatment is $150/hour and has a total estimated cost of $18,000. On top of this, I have to endure the cost of travel to the treatment facility. This includes gas, turnpike tolls ($8/trip), and overnight cost. The medical rate at the hospital contracted hotel, Radisson is $90/night. As a result, I feel as though I have no option but to ask and hope for the generosity of others. Although insurance is covering part of the treatment I am left with the remaining balance. I am so sorry I have been reduced to this, but I am hanging my hopes on this treatment. I sincerely appreciate you taking the time to read this and for your consideration.
Organizer
Amy Miller
Organizer
Monroeville, OH
