[Always_Believe]

Today I killed 2 birds with one very long day.

Neuro was first. We ended up going in the wrong building. Walked through the building, across the parking lot and into the right building. Whew!

Neurologist was thorough and straight forward. I appreciate that. I had copies of my EMG/NCS from a year ago. He reviewed them for a few minutes,taking notes. Did a neuro exam and decided on this:
a) The damage detected in the 2014 EMG is severe.
b) He needs to ascertain if the damage begins at the fibular head or below. So he wants to repeat the EMG. If it's at the fibular head, he thinks surgery. If it's below, he's sorry but there is nothing he can do and the damage is permanent
c) He might want to investigate if there is a nerve in my lumbar spine that is the cause.
d) He suggested the CRPS diagnosis. As he was reviewing my med history, the "RSD" diagnosis popped out at him and we joked about the RSD/CRPS thing. Nomenclature. Sheesh! He said he could do a scan to confirm diagnosis.

We stopped at the desk to schedule the EMG, which he stated he is booked out for those...Sept 2nd. Wow.

We had 4 hours to kill between appointments and with all the time I spent in the hospital with my son, emotions were already running on the yuck side so we sought out a Culver's. Then a Ross. Then headed back for PM.

We were a little early but I have to say I was very impressed with the minimal wait times, in the lobby and in the room. I was called back right away. Here's where things get interesting. PM doc was fairly aloof (whatever, most anesthesiologists are pompous). After discussing some med history and what my goals were (increased function/decreased pain), he decides "It's not CRPS. You can put a sock and shoe on, so it's not CRPS". But he will do a lumbar block as a diagnostic test to rule it out or confirm it. "But it's not." Okay. My block is scheduled for July 17th.

Oh! I almost forgot! In between the nurse and PM, I got a phone call from neuro...there was a cancellation....my EMG is tomorrow at 9:30!

[Littlepaw]

Wow!!! What a day!

This is fantastic. I am so happy you have finally gotten seen. I know it was a terribly long wait. It is great you have a neuro who sounds interested, thorough and caring! and the EMG! Yeah! Damage at the fibular head seems the most likely. I hope they find something they can treat or think will improve.

All that and a block is coming? you're getting somewhere!

BTW, I can wear a sock and shoe and my PM and neuro still think CRPS. They say I have the hyperthesia instead of allodynia. Another PM thought no CRPS since the sock and shoe. So much splitting hairs...fair to say you got jacked up nerve syndrome.

Keep us posted! I am sending hugs for post-EMG.

[Always_Believe]

Well this EMG/NCS was definitely not as bad as the one I had a year ago. I am feeling it more now though.

The neurologist said that unfortunately my nerve damage is below the fibular head, so no surgical option for repair. He also pointed out that the damage is not limited to my peroneal nerve but also involves my tibial nerve. However, it is not as severe as it was a year ago. He didn't say that indicated it will eventually resolve. I asked if my increased pain could be from the nerve(s) healing, he said it was not. He wants to do a 3-part bone scan for diagnostic confirmation/rule out but still believes it is a combination of neuropathic pain and CRPS (I guess that just makes it CRPS Type 2, huh?). We will see if the insurance will cover the scan and then schedule it. Otherwise I have the LSB on the 17th.

Haven't taken the script for Lyrica to pharm yet but if that isn't covered, it's $250+ even with goodrx, so that won't be happening.

Overall I feel there is at least a direction even if none of them are pointing to complete resolution.

[Littlepaw]

I am glad the EMG was not as bad as anticipated. I would not give up hope because of the damage being below the fibular head. I guess I am not real clear why that is a deal breaker. peripheral nerve plastic surgeons do all kinds of crazy sounding Frankensteinish things, ie: transpositions, reanimations. surgeries in the deep mid-calf, super complex brachial plexus stuff. Unless this neuro has had recent training in microsurgical technique for nerve repair at one of maybe three programs in the U.S. He may not know for certain what can be done.

I would ask why the lesion being more distal is a problem....

[Always_Believe]

Originally Posted by Littlepaw

I am glad the EMG was not as bad as anticipated. I would not give up hope because of the damage being below the fibular head. I guess I am not real clear why that is a deal breaker. peripheral nerve plastic surgeons do all kinds of crazy sounding Frankensteinish things, ie: transpositions, reanimations. surgeries in the deep mid-calf, super complex brachial plexus stuff. Unless this neuro has had recent training in microsurgical technique for nerve repair at one of maybe three programs in the U.S. He may not know for certain what can be done.

I would ask why the lesion being more distal is a problem....

I am going to see what the scan or LSB reveals. If it's solely the nerve, I will forge ahead with trying to get some repair/revision going on.