January 2024

 Wow, it has been a very long time since I last posted. My life has changed quite a bit. I got married, bought a house with my wife, and a father to a beautiful 6-year-old. I still face challenges with my feet and the medications have since caused other problems with my body. Overall though, I'm doing the best I can.

My wife and I would like to have another child but my body is not cooperating. The doctors believe the methadone has somehow impacted my pituitary and that's why I have to get testosterone injections every two weeks. The injections help my energy and mood however they also degrade the body's ability to be fertile. I've tried going off of the injections to see if things will return to normal but nothing changed. It is extremely frustrating. 

I haven't had any additional surgeries to my feet however I had abdominal pain which led to a biopsy of a mass on my pancreas that fortunately was negative. After the biopsy, I had terrible abdominal pain that was a result of the pancreas bleeding and I ended up in the hospital for a 3 days. The following week, I started having pain again and almost didn't go into the hospital but fortunately, I did. The ER did a CT scan and detected a pseudo aneurysm of the artery by my spleen. It could have ruptured at any time. Unless in a hospital, the chances of survival are practically zero. I ended up having a procedure to clip the aneurysm but the result was killing off part of my spleen. I have to get extra inoculations now to protect against some viruses. It was a pretty miserable experience but I was very very lucky that I went to the hospital otherwise I wouldn't be here today.

Recently, I knocked my foot on the stairs. And ended up in urgent care because of swelling and my foot turning blue and purple. X-ray didn't really show anything but I'm still having problems now. It's been 2 weeks. I'm really hoping it's something that resolves on its own because I just can't go under the knife anymore. There's just no way to control my pain. This leads to another concern. The mass that I had biopsied on my pancreas could become malignant. Apparently that's a wonderful trick that your pancreas can pull off. I have an MRI scheduled for next week to get a better look at it. A friend of mine believes it is probably scar tissue. He's a doctor and does this kind of stuff for a living so I'm hoping he's correct. If it is anything else, they might have to go in and cut out part of my pancreas. It's a very serious surgery and I would probably be in the hospital for over a week. I don't know if there would be any options to help me from being in agony. I'm hoping they could give me a sedative or some type of amnesiac to get me through the first few days. Just going to think positive that it's just scar tissue and nothing else will need to be done.

March 2020 - ER, Surgery, Fiance

A year has passed since my last update. My world has changed significantly. I met an amazing woman from my home town that does not judge me and my situation. We are engaged to get married in August. She has had a taste of my terrible luck with medical and is still with me. When we were moving into our apartment, my back went out. I tried to push through but the following Tuesday, I couldn't keep going so I went to see a chiropractor who immediately sent me to the ER. I was hesitant because the hospital that used to be so wonderful is now part of Spectrum Health - a massive group of hospitals and medical care. They took one look at my chart and immediately assumed I was a junkie. Gave me a shot of Tordal and sent me on my way. God forbid they have compassion and make you comfortable so you can try to manage the pain going forward.  Anyway, I had an appointment with my pain doctor the following day to get my monthly lumbar sympathetic injections to help manage my CRPS. He uses fluoroscopy to guide the needles into my spinal area to inject the medication. Later that day, I was at my apartment moving something and I started getting a horrible pain on the left side middle of my back.  Excruciating. I was almost to tears when my fiance took me to the same hospital as the day before (as much as I hate the place, I figured it was best to be consistent). The pain was so bad tears were running down my face.  My blood pressure was through the roof.  None of that mattered to the doctor and they refused to give me meds.  I laid there for 7 hours until someone remembered me.  The doc then checked the results of my CT scan, came to my room and says "wow, I was wrong, you have a massive hematoma in your back. They admit me, I wait in the room for over an hour for the doctor to come up and she will only give me a baby dose of dilaudid.  With my tolerance to medications, this is like fighting a fire with a squirt gun. I suffered for 5 days in agony before it finally started to settle down and I could go home.  I will never go to Spectrum Health Blodgett or Butterworth hospitals again. 

In January of this year, I had the clawed toes on my right foot fixed.  Unfortunately, it is now at the point where hospitals are too scared to provide the amount of pain medication I need.  My tolerance to ketamine is too high and they will not provide more than 2 mg of dilaudid.  I had another 5 days of burning misery in the hospital followed by 2 days of withdrawals from the ketamine afterwards.  My toes got infected and the antibiotic helped but didn't completely kill off the infection.  The wounds smelled and took over a month to heal.  It was quite a journey. 

It's March and I am hoping to start taking less pain medicine if I can.  Go down 1/2 a pill every week or two.  I don't know if I'll be able to do it but I need to try.  I want to get back to having normal feelings/emotions.  My fiance deserves me being 100%. 

March 2019 - More health problems, disability update

I'm sorry to be negative but my life is so miserable. I try to be a positive person and make the best of things but I just can't catch a break. The last few months have been horrible and I finally got a date for my disability appeal and but it looks like the judge that was assigned has a record of approving fewer request then the state and national average. By nearly 10%. I'm sure he will look at me, my education, and my age and just make a decision there. I'm under 50 and used to be intelligent. Now I can't keep my thoughts straight half the time, my memory is garbage, I barely have relationships left with anyone, and spend my life miserable laying in bed. I had everything going for me before and I was on such a positive upward trajectory in my career and then the original injury happened in 2010 and you can pretty much see just from my resume that my work and career hit the toilet. Believe me, I would much rather be able to do any kind of work and add value to the world if I could. That's enough of me feeling sorry for myself as there are people out there that suffer a lot wo then I am. Unless, of course, my disability gets denied and I end up homeless laying on the ground somewhere.

As far as what's happened the last couple months, I ended up having an infection from the surgery and the wound wouldn't close but after antibiotics and such, it finally did. I started getting infusions again from a local clinic because it is less expensive but still beyond what I can really afford. On top of that, they don't use versed so they are unable to actually achieve a high enough dosage of ketamine to be helpful. The other option is to go through my pain clinic where they can do that however they refused to prescribed the nasal ketamine spray. There's just no winning.

I'm not sure if my body is shutting down or all the side effects from the medications are growing too severe but I ended up in the emergency room twice due to insanely bad stomach pain and again, compliments of people that abused opiates, the emergency room wouldn't even show the compassion to make me comfortable. They did the absolute basics with a blood test and kicked me out the door. I felt like I was going to die. We ended up doing all sorts of tests and everything came back negative so who knows. This month, my problems are more related to prostatitis or my urinary system and some sort because it feels like I have a UTI but also have terrible cold sweats and all I can do is lay in a ball in my bed. That part is nothing really new but it's just more misery in addition to my feet. This is also setting off the coccydynia which is the horrible aching pain in my tailbone.

Hopefully things get better and I can at least try to distract myself with TV or something.

With all my posts, please disregard typos or words that come across weird because I use voice to text. I do my best reviewing everything before I post but it all takes so long. I do hope the information is helpful for others as they make their decisions regarding surgery and such. Best of luck.

Here's how my feet look today. You can see how bad my toes are clawing on my right foot.

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.