[swimtime]

I'm trying to find a doctor closer to our home. Having his foot down for the 40 minute (one way) car trip, plus time spent at the appointment, causes more problems than it solves.

I literally spent hours today searching for a doctor closer to our area. Either they don't treat CRPS, or they only treat adults with CRPS. Even the pain management doctors who do treat teens, are very limited in what they have been willing to offer. Nerve blocks haven't been very effective, they won't consider ketamine at all, yet he's lost most of his mobility. I need a brick to beat my head against. I'm very reluctant to take him back to the local pt place he went to before, because they kept saying things like, he's lazy, he pretends to be in more pain than he actually is, etc. The reality is that they were ignorant of CRPS. I just don't know what else to do at this point.

It is unbearable to watch your once active, healthy teen, be in so much pain that he is unable to walk anymore. I worry so much for his future. He has had a few minor gains over the last month or so, and he keeps trying, but I would feel more hopeful if he could at least walk. He does walk in the pool, but on land he can't do it.

Sorry for the rant, just feeling lost lately.

[Littlepaw]

Hey Swimtime,

I can't respond properly till tomorrow but just wanted to reach out and ask some questions. It's been what 3 months since surgery? What is he taking at this point for pain? What is he capable of - any partial weightbearing, bike, etc? Is he out of the boot and all that? Most importantly - what is the limiting factor....burning pain? swelling? That might give a clue for direction.

I wouldn't go near any PT who's going to say he's lazy...

Hang in there, this rodeo ain't over yet.

[catra121]

Sorry that you two are going through such a rough time. I agree that you shouldn't go back to any PT that says your son is lazy...there is no reason a physical therapist should ever make a patient feel that way when they are dealing with an incredible amount of pain like this. He needs support from the people trying to help him...it's the only way he will make progress. You have been doing as much as possible for him and no doubt the only progress he has made has been because of you.

I hope you can find a dr and physical therapist who will be able to help. Even if options are limited...they won't do any good if he doesn't have the right support from the medical side. He CAN and WILL get better...don't give up hope. I understand the frustration both you and he have got to be feeling and it's okay to feel that way. I found some of the best things happened to me treatment wise when I felt like I was at the end of the line with one dr and ended up with another. The right dr for one person is not necessarily right for another and treatment plans cannot be one size fits all. You'll find the right fit for your son...keep him doing what is helping and though progress may seem painfully slow it's just important that he keep moving forward (don't get discouraged by small setbacks) and don't rush to force progress on someone else's timeline.

You will both get through this.

[swimtime]

Yes, it's been about 3 months. He's taking Lyrica, 100 mg at night and 200 mg in the morning. He does partial weightbearing, using the crutches to assist and take some of the weight off. There are many days he can't even handle that. He really only can do it once or twice a day on a good day. He does stretching exercises with the therapy band, and we do frequent stretching and massage to help the circulation and ease the pain. No allodynia, thankfully. I'm hoping as the weather warms, he will see more improvement. His foot never really looks swollen. It looks red or purple on top, it stays pretty cold so he uses a heating pad. He uses the pool every other day, sometimes he needs two days in between to let the pain subside further. His activities vary there, depending who's in the pool with him. He walks some, swims some, gives his little brothers dolphin rides, or wrestles with his older brother. lol

[Littlepaw]

Beautifully put Catra.

I agree that he WILL make progress. I also agree that it will be slow. There will be good days and bad days but eventually the good days will outweigh the bad ones. It would be great to have care closer but the most important thing is that the care is a good fit.

When I look back at where I was 3 months post-op after my last foot surgery there are a lot of similarities. My dorsal foot was much more discolored. I could only be up for limited periods and the car just killed me. I even thought about trading my car in for a more cushy one because the vibration was horrible and really made me flare. But I kept it and can now drive it without issue. I thought at the time that I didn't have much swelling but looking back I see that even the small amount I had was causing a lot of discomfort. It wasn't even that apparent but it was there and it really ticked off those anterior nerves. And I didn't even have an incision there....

Your son has had multiple traumas to the area and I think it takes a lot longer than they say to get better from this. They had to cut through skin and possibly previously cut ligament to get that hardware out. The little nerves running through there can have sensory changes for 1-2 years post-op as they sprout extra axons, reconnect and have extra axons die off. They can be really sensitive during this time. I would hold on to the long view here. My PM just told me about a study of 10,000 people followed for 10 years after trauma. They had the most improvement in the first TWO YEARS. I know it stinks to think that far out but I there is hope in those numbers. I wouldn't worry too much about his future yet. Worry about making him comfortable now and consistently making the small gains that will accumulate in time to recovery.

On rehabbing - my first 6 months were really hard and I was dumbly doing some things that set me off. I didn't realize this until I quit doing everything for 2 weeks and started up again. It allowed me to identify aggravating factors. It is okay to pull back and adjust the plan every now and then. Walking in the pool is great and I feel land is just a matter of time.

Remember the little things. He responded before to changes like extra cushioning and those little things are important. I still wear a large bandaid over my scar when I exercise. I have no cushion of fat there and the padding makes me more comfortable. I recently bought a new pair of shoes, unlike any I've tried before and they are WAY more comfortable. I THOUGHT I had great shoes already but no. Simple changes like a more flexible or padded shoe tongue can make a difference. Where I lace my shoe makes a difference. I would've thought it didn't matter so much as I'm 18 months out but these things still help. I reduced my pain quite a bit just changing shoes two weeks ago. I went and tried on about 12 different pair and settled on the Nike Free Connect. It's kind of minimal which is the opposite of what I thought I needed. Whodda thunk it?

If you want to explore ketamine I'm afraid it may take travel to do so. Pediatric pain management is hard to come by. It is already a challenge for adults to get it. I know they give it pediatrically at Mayo. U Of M might consider it or maybe Ford?

I'd ask about topical maybe. Something different from lidocaine patches. I used one with gabapentin, ketoprofen and ketamine in it. They can also add clonidine which would open up the circulation a bit. You might also try DMSO still at this point. These things might reduce inflammation. I also recommend PeaPure (palmitoylethanolamide) It is a fatty acid supplement used in Europe for neuropathic pain. I've taken it off and on from the beginning. I have to order from the Netherlands at RS4 Supplements but it arrives super fast.

Has he had a round of steroids? I can't remember. I took 10mg 3x a day for two rounds of ten days at about three months out and it helped a lot.

Get a follow up x-ray if he hasn't had one...

Sorry for all the random thoughts! I know he is going to make improvements. It DOES feel like forever but he really is not that far out. Keep doing what you're doing and hold onto those small gains. They do add up over time.

Sending loads of hugs and healing love,

[mama mac]

Swimtime,
It really sounds like the pool therapy is going to be key and thanks to your ability to put the pool in he has great access. My pool PT included a lot more than walking. I have a full sheet of pool PT exercises. Maybe a consult and a couple of sessions with a pool PT specialist might help. Sometimes the exercises can be found on line too. They can be very gentle.
Is the Lyrica helping? There are other meds to try if not.
I wish I could add suggestions on doctors, but Little Paw had some ideas.
For a recent car trip, I took two soft blankets and wrapped my leg in them, put them on a pillow and stretched it out over the console of our car from the back to the front seat to minimize vibrations. A foam pillow in the floor board helps on shorter trips.
You may already know all of this, but sometimes an idea will pop that you haven't tried. You have been very creative already in trying to help with his comfort level and recovery.
I wish you both the best. I hope you are finding some time to care for yourself too. ~mac

[Always_Believe]

I hate how familiar this all sounds, in more ways than one.

I just left the chronic pain program at RIC for a similar PT reason. I agree with Catra - no one should be made to feel inadequate when rehabbing...for any reason, not just CRPS, but CRPS tends to be more difficult and slower to rehab than say your standard knee surgery.

On the mom front...I will never forget when my son had one of his many surgeries when he was about 10 years old. He was non-verbal and had spastic quadriplegic cerebral palsy. He got out of surgery late and I was breast feeding my youngest, so I asked to see his orders before heading to the hotel for the night. He was ordered tylenol and morphine. I told the nurse, when he wakes up from the anesthesia, give him the morphine. She agreed and I headed to the hotel. When I came in in the morning, my son was screaming. I hunted down a nurse to find out when he last had morphine. He hadn't. He was given tylenol about an hour before we got there but otherwise had nothing. I asked why he was not given morphine considering how he was screaming. The nurse looked and me and said "I thought that was his normal". Someone could have (and probably should have) died that day.

Learning what I have through my most recent trial, having a team that is knowledgeable and compassionate regarding CRPS is extremely important. Barring that, you need someone who will simply do what you ask. I wonder if a rollator or standard walker would be better for your son. Obviously more emotionally difficult to accept, but maybe for use at home. One of the things that has been holding me back is using furniture & walls instead of my walker at home. The other thing that has become clear through this is the pacing consistency. If he can only stand 5 minutes on a bad day, he should only do 5 minutes on a good day. Otherwise we crash & burn. A wise LP often has said "low & slow". OT suggested today to not increase any activity until I was able to tolerate the minimum every day for a week & then only increase it by a few minutes.

Remind me your location...maybe we can get something figured out closer to home. I know the foot down position is very difficult for me as well.