January 2019 - More surgeries, disability pursuit, new stimulator

It's been a long time since I last posted so figure I'm overdue for an update.

I had a really big surgery on my right foot in September of 2017. Took about four hours in the OR. The doctor ended up doing four or five different osteotomies throughout my foot and ankle. Pins, screws, plates, etc. The surgery was quite successful as my foot no longer flops over to the side and is relatively stable. On the flip side, my mobility of the joints has become quite limited and my big toe can move even less after losing another tendon. I was in the hospital for about 10 days after the surgery for pain control. Regular opiates just don't have much benefit so they had to put me on a ketamine drip in order to hopefully control the pain. They had me on 14 milliliters or whatever the unit of measurement is but it wasn't helping and the next level would be 21 and they said I would have to go into the ICU if they went that high. I was afraid of what that cost would be so I just suffered instead. As with my other times in the hospital, since they no longer allow your own pain doctors to come in and they don't have a team available to help people in my kind of position, there were hours and hours between any changes in medications or any potential health. It is so ridiculous.

Had additional ketamine infusions but unfortunately, they are not very effective anymore. The only thing that really helps is the nasal ketamine spray but due to easy way for it to be abused, fewer doctors are prescribing it so now people like myself that really need it can't get it. Wonderful.

My disability request was denied. my attorney said it was the blanket denial that they send everybody and due to my age and such, they probably didn't even really look at everything. I have run out of money and now and pulling from my 401k trying to survive. We filed an appeal immediately in may of 2018 and are still waiting to get a trial date assigned. Even if I do win my case, it will take months for any type of payment so I don't know if I will be able to survive. Great system we have going on here.

While waiting for social security disability, I was able to secure help through the state and county bridge card system - food stamps. We also requested financial assistance and was denied because they say I am not disabled. This is very concerning as anyone that looks at my charts or meets me realizes that I am indeed disabled.

I was finally able to get the new dorsal root ganglion stimulator put in. In line with my usual luck, one of the leads migrated within the first month and when the doctor went in to fix it, he encountered too much scar tissue and was not able to get the lead in position. Now we are waiting for the FDA to approve paddle leads that provide better coverage over the nerve. Nobody has a clue of how long it will take to get approved.

Although the last big surgery on my right foot was successful, I started to get a lot of pain in the back of the heel, the bottom of the Achilles, and on the right side of the heel. This is almost identical to what happened with my other foot. Surgery was scheduled at University of Michigan metro health in Grand Rapids. This is the first time I've had surgery there and I was absolutely floored by how much better it is than the other hospitals. You could tell that the nurses actually care as opposed to just doing their job and whenever an issue arose with my pain control, they would have someone from anesthesia come up with in 20 minutes as opposed to 24 hours at the other hospitals. I will never have surgery anywhere else again. Anyway, I got the usual nerve block but it was only partial effective and it turns out they only blocked one of the two nerves which covers the outside of my foot and my heel. Had medication strength issues because they always have to start at the smallest dosage and work up. Half a milligram of Dilaudid does nothing for me. I finally was able to get them to increase it to 2 mg the second day but even this was ineffective. I need at least 3 mg it's not four but they won't go that high. They did put me on a ketamine drip and it was on level 14. I'm guessing that's milliliters or something. It was not effective at all because of all the infusions I had before I have developed a tolerance to ketamine now. They eventually increased it to 21 and that still wasn't effective so they put it up to 42 and then I finally started getting relief. The difference here verses when I was at the other hospital is they didn't require me to go to ICU at such a high dosage. I was in the hospital from Friday until Tuesday and now home and even though it's been almost two weeks, still having a lot of pain and I looked at the wound and it's still bleeding.

I've probably missed out on some problems or surgeries that I don't remember because there's been so many. I'm sure I will need to have my toes on my right foot fixed at some point because they continue to claw but I'm really not looking forward to that surgery.

One last thing, all of this crap with junkies od'ing on heroin and the news and people bundling people like myself into the same group as people doing heroin is making it incredibly difficult to get medications. I don't know why the insurance company feels like they should be able to regulate what my doctor has prescribed. I am having a constant battle with them over the level of pain medications I am on and trying to get them to pay for stuff. I have never abused my pain medicine and should not be punished because of other people doing stupid things. it is not the only tool to help control pain but it is an important piece of the puzzle.

July 2017 - disability, toes amputated, another stimulator & surgery

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.

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.

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.

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.

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.  

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.