Life has been rough since my last post. The CRPS has been getting worse in both legs. I got a Nevro stimulator put in and thought it was working but turns out to not help much at all. I don't even have it turned on anymore.
I finally figured out why I haven't had any interest in trying to date. The meds reduced my testosterone to almost zero. I'm now getting shots and it does help a little. Considering I can barely retain a social life anymore is now the biggest problem. I have a theory that the disease and drugs are what tanked my career. The timeline lines up.
The toes on my left foot that had the knuckles removed began to twist a little and developed ulcers on the bottom that wouldn't heal. The options were to redo the surgery (cutting knuckles, etc.) or just amputate. Since it was originally just the middle toe and wouldn't affect balance, I went with the doc's recommendation and chopped it off. 30 minute surgery and weight bearing immediately. Had to have the pinkie toe removed two months later.
The CRPS has continue to progress so I decided to try Ketamine infusions. Ketamine has emerged as an incredibly effective drug for treating nerve pain, depression, and other problems. It's not covered by insurance due to it being an older medication and not technically approved to treat CRPS. Cost me $1,500 per infusion, six infusions initially with boosters in the future. I get amazing relief anywhere for a few weeks to 8 weeks. Theoretically, people can eventually get complete relief after boosters. This is pretty rare though. In Europe, they are actually putting people in ketamine induced comas for 7-10 days and they are coming out with their nervous systems completely reset. A bit risky though.
A new stimulator has been approved in the US that focuses on the dorsal root ganglion. It is the first to show continuous positive results for patients with CRPS. As high as 70%. I am scheduled for a trial in August.
Been missing the best part of summer as I'm stuck in bed with horrible pain. Epidural shots have not helped but a peripheral nerve block seems to have some effect. Got the left leg done Monday and it's helping a little. Right leg will be done Monday.
The last surgery on my right leg (osteotomy, brostrom, tendon transfer) failed and is scheduled to be redone in September. Can't imagine dealing with that and CRPS. Not sure if I can. That would mean I have an ankle that flops over and can't stand on anything other than solid ground. After about 20 minutes it gets too painful, regardless.
Lastly, I've finally decided to pursue disability. I've really tried to not do it as I see it as giving up but I need some income while I fight this disease. I hoped to be able to work but now I'm losing hope. It is really scary. The disease is going up my legs into my knees. I've never been in agony without anything helping before. I'm so tired of laying in bed all day with no relief. I can barely manage going to the kitchen for coffee or food.
Wednesday, July 19, 2017
Monday, October 24, 2016
October 2016 - Surgery, CRPS, Spinal Cord Stimulator, Steroids
A lot has happened since my last post. The surgery was pretty much as expected. The tendons were completely severed and were trashed so the Doc transferred one from the inside of my foot. He took the one that would normally cause my big toe to flex at the knuckle. He performed the calcaneal osteotomy and also the gastrocnemius recession. Our biggest fear was realized and the all the surgeries have caused CRPS in this foot. It has gotten bad enough that I now need to get a spinal cord stimulator. I'm waiting for a surgery date.
One of the big side effects I experience from the Methadone is a major drop in testosterone. It's bad enough that I'm going to start taking a steroid soon.
One of the big side effects I experience from the Methadone is a major drop in testosterone. It's bad enough that I'm going to start taking a steroid soon.
Wednesday, April 20, 2016
April 2016 - Another surgery....and it's the big one.
So, I need to look and see the last time I updated this site. We seem to have come full circle and I now need to have the nasty calcaneal osteotomy on my right foot. I'm very worried about it. If I didn't mention it before, I've had two other surgeries on that foot over the last 12 months. I'll be posting again soon with more info and then updates throughout my recovery. Surgery is scheduled for May 20th.
*I just looked back and my last post was before the surgery in October. The doctor did a 4 hour surgery, fixed all the ligaments, two tendons (including using a cadaver tendon), and lengthened my achilles. He couldn't do the osteotomy because he felt the soft tissue wouldn't hold. Now, after no weight bearing for all of November and December, three months of PT, I have retorn it all because my alignment is off. Turns out is probably congenital as both of my old siblings have torn their peroneal tendons.
*I just looked back and my last post was before the surgery in October. The doctor did a 4 hour surgery, fixed all the ligaments, two tendons (including using a cadaver tendon), and lengthened my achilles. He couldn't do the osteotomy because he felt the soft tissue wouldn't hold. Now, after no weight bearing for all of November and December, three months of PT, I have retorn it all because my alignment is off. Turns out is probably congenital as both of my old siblings have torn their peroneal tendons.
Monday, October 19, 2015
October 2015 - More Surgeries
In a cruel twist of fate, when my bad foot and ankle (left) finally healed enough for me to enjoy being mobile again, I split the peroneal tendon in my right ankle. Seriously, it happened. And, because I don't do anything normal, the surgery to fix it failed and has since turned into all of my ligaments being torn in that ankle and the doctor wanting to perform a calcaneal osteotomy. Miserable. I'm sure I'll update this blog while I'm laid up.
Saturday, September 27, 2014
September 2014
It has been a long time since I've updated. Quite a bit has happened since then.
The nerve damage caused my toes to curl (claw toes) and I had to have them straightened. That involved cutting out the middle knuckle of each toe, releasing the capsule at the bottom of the toe where it hits the foot, transferring tendons, and putting pins in so my toes heal straight. I knew going into it that the surgery would be tough but it was compounded by my pain doctor not showing up to manage my after surgery care at the hospital. I was in severe agony for about 5 hours before a different pain management group stepped in because they couldn't watch me suffer any longer. Needless to say, I changed pain management doctors immediately. Recovery was two months on crutches. Getting the pins out wasn't painful at all, I was really surprised. Barely felt it. I didn't realize that there aren't nerves in the bones so there really wasn't anything to cause it to hurt. My doctor told me to just slowly begin to walk again and everything will stretch out. Everything was going well for a few days and then my RSD went crazy. The pain was off the charts, my foot was bright red all the time and swollen. I ended up having to go on Methadone for a while. It was really effective but had some odd side effects. For me, the sex drive was completely gone. Anyway, after a few weeks, I was able to taper back down to my usual meds. Everything was going okay until I noticed a bump in the arch of my foot that was getting sore. More bad news.
The lump in my arch turns out to be a fibroma. Kind of like a tumor but it is a mass that is in the plantar fascia. For some people, they get really bad and have to be surgically removed. The risk there is an arch collapse and for me, upsetting my CRPS/RSD. The doc said we have two options. We can be conservative, redo the gastroc recession, and see if the additional mobility keeps it from getting worse. The other option is to cut it out. I chose the former which was a simple procedure followed by a few days in the hospital for pain control because of my condition. I spent two weeks recovering and then had to travel to Vegas for work. Swelling was pretty bad and so was pain but that was to be expected. The doctor said it was fine to try and walk normal. Well, a last minute trip came up and I had to go to Italy. While I was there, the pain and swelling were still bad but nothing crazy. Unfortunately, a few days after I got home, my ankle and heel became extremely painful and swollen. Completely out of control. I had to drive across the country for a new job and I thought this would allow it to calm down. I was wrong. Just having it down made it miserable. Since then, I have seen an orthopaedic surgeon, been to the ER, and scheduled a new pain doctor out here in San Francisco. If I keep my foot immobilized in a lace up brace and minimize movement when I walk, the swelling and pain stay within reason. If I don't wear the brace, all it takes is having my foot down and the pain goes crazy. So, now I'm waiting for an MRI and for all of my records to get transferred. I'm hoping that I will have better luck out here than I did in Michigan.
The nerve damage caused my toes to curl (claw toes) and I had to have them straightened. That involved cutting out the middle knuckle of each toe, releasing the capsule at the bottom of the toe where it hits the foot, transferring tendons, and putting pins in so my toes heal straight. I knew going into it that the surgery would be tough but it was compounded by my pain doctor not showing up to manage my after surgery care at the hospital. I was in severe agony for about 5 hours before a different pain management group stepped in because they couldn't watch me suffer any longer. Needless to say, I changed pain management doctors immediately. Recovery was two months on crutches. Getting the pins out wasn't painful at all, I was really surprised. Barely felt it. I didn't realize that there aren't nerves in the bones so there really wasn't anything to cause it to hurt. My doctor told me to just slowly begin to walk again and everything will stretch out. Everything was going well for a few days and then my RSD went crazy. The pain was off the charts, my foot was bright red all the time and swollen. I ended up having to go on Methadone for a while. It was really effective but had some odd side effects. For me, the sex drive was completely gone. Anyway, after a few weeks, I was able to taper back down to my usual meds. Everything was going okay until I noticed a bump in the arch of my foot that was getting sore. More bad news.
The lump in my arch turns out to be a fibroma. Kind of like a tumor but it is a mass that is in the plantar fascia. For some people, they get really bad and have to be surgically removed. The risk there is an arch collapse and for me, upsetting my CRPS/RSD. The doc said we have two options. We can be conservative, redo the gastroc recession, and see if the additional mobility keeps it from getting worse. The other option is to cut it out. I chose the former which was a simple procedure followed by a few days in the hospital for pain control because of my condition. I spent two weeks recovering and then had to travel to Vegas for work. Swelling was pretty bad and so was pain but that was to be expected. The doctor said it was fine to try and walk normal. Well, a last minute trip came up and I had to go to Italy. While I was there, the pain and swelling were still bad but nothing crazy. Unfortunately, a few days after I got home, my ankle and heel became extremely painful and swollen. Completely out of control. I had to drive across the country for a new job and I thought this would allow it to calm down. I was wrong. Just having it down made it miserable. Since then, I have seen an orthopaedic surgeon, been to the ER, and scheduled a new pain doctor out here in San Francisco. If I keep my foot immobilized in a lace up brace and minimize movement when I walk, the swelling and pain stay within reason. If I don't wear the brace, all it takes is having my foot down and the pain goes crazy. So, now I'm waiting for an MRI and for all of my records to get transferred. I'm hoping that I will have better luck out here than I did in Michigan.
Monday, August 12, 2013
29 months (August 2013)
Saga continues....
I went to China in June and three days after getting back, I started getting nauseas and having terrible abdomen and groin pain. After two trips to urgent care, two rides in ambulance, three ER visits, one CT scan, three ultrasounds, and one MRI, we still don't have answers. The doctor isn't sure if it is the spreading of the CRPS or a nerve injury from sitting crammed in a plane for 14 hours. I'm now on the fentanyl patch with norco for break through. The pain had localized to my groin and privates. Feels like they are constantly being squeezed. Miserable. Getting a nerve block next week. Hope it helps. Doc really wants me to consider having a neuro stimulator implanted but I'm not sold. Definitely mixed results to read about. There is a new treatment that has been very successful. It involves high doses of a ketamine injection for a few days. Going to research.
On a side note, I am now taking Gralise instead of Gabapentin (neurontin). It is incredibly helpful. It is extended release version and is amazing. Only down side is that most insurance won't cover it.
This whole episode is now impacting my ability to work. Haven't put in a full day since June. Scared to think about what the future may hold.
I went to China in June and three days after getting back, I started getting nauseas and having terrible abdomen and groin pain. After two trips to urgent care, two rides in ambulance, three ER visits, one CT scan, three ultrasounds, and one MRI, we still don't have answers. The doctor isn't sure if it is the spreading of the CRPS or a nerve injury from sitting crammed in a plane for 14 hours. I'm now on the fentanyl patch with norco for break through. The pain had localized to my groin and privates. Feels like they are constantly being squeezed. Miserable. Getting a nerve block next week. Hope it helps. Doc really wants me to consider having a neuro stimulator implanted but I'm not sold. Definitely mixed results to read about. There is a new treatment that has been very successful. It involves high doses of a ketamine injection for a few days. Going to research.
On a side note, I am now taking Gralise instead of Gabapentin (neurontin). It is incredibly helpful. It is extended release version and is amazing. Only down side is that most insurance won't cover it.
This whole episode is now impacting my ability to work. Haven't put in a full day since June. Scared to think about what the future may hold.
Monday, January 14, 2013
21 Months (January 14)
Had a few comments posted so I think it's time for an update.
Since my last post, I've moved half way across the country for a job. It is awesome except for my stupid foot. I've developed hammer toes and am working on stretching the tendons again. I will start pt soon. The pain comes and goes, no big change there. I do live in a mountainess area and it is pretty depressing not being able to fully enjoy. Hikes are limited and skiing is out of the question. I am still on the same meds and my norco dose is up to 5 a day. I've also been prescribed clonidine for breakthrough relief but it doesn't really do anything. My new pain doc had me try Nucynta. It's the first new opioid developed in a long time. Supposed to work as a regular opioid and have the same effect as tramadol. Some people love it. Didn't do much for me and gave me anxiety. I was on the 100 mg pills.
My doc warned me a while back that I may develop back problems due to limping for so long. Well, that has happened. I have a pinched nerve in my neck that sends electric shocks down my arm and into my face when really bad. I can barely sleep because my back hurts so bad. I'm getting an MRI of my neck soon.
The really scary news is that when the doc administered the versed to knock me out for my most recent injection, he had to give me 12 mg. the normal dose is 2 mg! That means that if I ever have an injury and need pain relief, it will be very difficult to achieve it. Not good.
Lastly, I've had flare ups since I've been in Colorado. I've gone to the ER and they completely blew me off. I guess that's the difference between a hospital in a medium size town and a major metro area. They just assume here that you're a junky. Even though I brought in all my files. Terrible and scary.
Since my last post, I've moved half way across the country for a job. It is awesome except for my stupid foot. I've developed hammer toes and am working on stretching the tendons again. I will start pt soon. The pain comes and goes, no big change there. I do live in a mountainess area and it is pretty depressing not being able to fully enjoy. Hikes are limited and skiing is out of the question. I am still on the same meds and my norco dose is up to 5 a day. I've also been prescribed clonidine for breakthrough relief but it doesn't really do anything. My new pain doc had me try Nucynta. It's the first new opioid developed in a long time. Supposed to work as a regular opioid and have the same effect as tramadol. Some people love it. Didn't do much for me and gave me anxiety. I was on the 100 mg pills.
My doc warned me a while back that I may develop back problems due to limping for so long. Well, that has happened. I have a pinched nerve in my neck that sends electric shocks down my arm and into my face when really bad. I can barely sleep because my back hurts so bad. I'm getting an MRI of my neck soon.
The really scary news is that when the doc administered the versed to knock me out for my most recent injection, he had to give me 12 mg. the normal dose is 2 mg! That means that if I ever have an injury and need pain relief, it will be very difficult to achieve it. Not good.
Lastly, I've had flare ups since I've been in Colorado. I've gone to the ER and they completely blew me off. I guess that's the difference between a hospital in a medium size town and a major metro area. They just assume here that you're a junky. Even though I brought in all my files. Terrible and scary.
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