So we saw a physical medicine rehab doctor (Children's Hospital). He was very thorough, asked lots of questions, but had no new suggestions for treatment. They don't do ultrasound of the nerves there. He did notice weakness of the toes with dorsiflexing against resistance, and the weakness with eversion, and the fact that the extensor digitorum brevis muscle of the foot is pretty much non-existent due to the nerve damage. Also, he said the more recent changes in skin appearance is due to skin atrophy. I didn't even know that was a thing with CRPS. I don't know if that means the CRPS is becoming more entrenched and chronic. It's so black and white to say that in writing. But it scares the living crap out of me.

We have an appointment next month with U of M's PMR doctor, since this one wasn't much help, and I'm still trying to get an appointment for U of M's neurosurgery department. I'm calling tomorrow to make sure they really do the nerve ultrasounds there. If not, then I think Cleveland Clinic may be the next step. Good grief. A four hour car trip for one little ultrasound. But it looks like they have an excellent peripheral nerve program too, so I'm sure it would be worth the trip.

Please consider using pure liquid lanolin. I found that it helped the most, but it is sticky.

What does it help with? The skin atrophy? And where do you get it in liquid form? It's natural form is pretty thick, I think. Thanks for the tip.

I buy mine from Amazon, a Now product.

It is wonderful. It helped me with skin thinning, dryness, sores and sensitivity.

Awesome. There's a health food store near me that sells it. Come to think of it, he didn't develop skin issues until recently, when we ran out of the Omega 3 supplement two weeks ago, and I haven't gotten around to replacing it. Now that I've looked it up, it apparently helps with skin health (I was giving it to him for anti-inflammation.) I'll definitely be picking up both items. Thanks again!

Hi Swimtime,

It takes a lot of persistence to find the super-specialists! U of M should be able to help and academic places love interesting cases. But if not...I found my PMR ultrasound whiz by googling "hydrodissection nerve" and Houston since that's where my team is. When I briefly searched hydrodissection and Detroit two practitioners came up at Detroit Medical Center, Henry Ford Hospital. One is Dr. Antonio Bouffard and the other Dr. Marniv Holsbeeck who is Director of radiology. Both came up as teachers for advanced ultrasound training for other doctors. If they don't do these for patients, ie: they are mostly academic now, then someone there should be able to recommend someone who can do the ultrasound.

Dr. Patricia Delzell came up at CC as person who does training for nerve ultrasound.

good luck!

Wow, thanks so much! I will check those out.

Couldn't get anywhere trying to contact the two HF doctors, they may not be in their system anymore. U of M has spent the last 10 days bouncing his referral around between pediatric and adult neurosurgeons, trying to decide who he should see. The neurosurgeon at Children's called me today to say they can do the ultrasound, but he's not convinced it will show enough information to make a surgical decision. But he did say that he works closely with a peripheral nerve surgeon on cases like this, and gets the plastics people involved, too, in certain situations. So it's a start at least, and they can see him next week. I can always move on to U of M later if needed. I was impressed that he took time to call me and get information ahead of time, and answer any questions he could, before the appointment even. Yay for a doctor who takes time to get to know the situation thoroughly!!

Sorry for the dead end! It may be they just do teaching. The Holsbeeck doctor showed up on a recent training seminar.

I am so glad to hear someone can do the ultrasound! And people bring in the peripheral nerve specialists! That is great news. The doc is right it may not be possible to make a surgical call but it is non invasive and inexpensive to do US so why not check? I hope it brings some more answers. I would say even without clear indication on US it is worth consulting the nerve, plastics people to see what they think.

So glad you are in with doctors who are listening! It is amazing how validating it feels to have someone on board who is concerned with real healing.

Let us know what happens!
sending hugs for you and some to pass around,