Not pain, but weird sensations

[Bird]

I'm only a few weeks post-surgery (C6-T1 ependymoma removal) so I do expect to have weird feelings as my nerves heal/settle down/do whatever they're going to do, but i'm getting some really weird phantom feelings.  When I lie down on my right, I always feel like there's something under my right thigh (blocks, loops of rope, lego pieces, etc.).  nothing painful, just uncomfortable and distracting so it's hard to sleep.  Sleeping on the left is still painful, so isn't really an option yet.  Also, if I let my knees touch each other it feels like there's a large plastic box in between them.  Very strange.  So, tonight while sound asleep, I had the sensation of mice running up and down my left leg.  It felt so real that I didn't even realize I was dreaming until I woke up from grabbing my leg (thinking it was a mouse - I'm quite sure we do not actually have mice).  Anyone else get these weird phantom things?  I'm so thankful i don't get the horrible pain and burning sensation that some people suffer with!!!  (but I'm also hoping these weird feelings go away eventually!)

[funnywalk]

Hi bird! Sounds like you are living in a Walt Disney world where your nerves delight in playing tricks. These symptoms could change - they are certainly dramatic and I can imagine, horribly difficult to live with - there is always the possibility that nerves will heal. The sensory nerves seem to be the ones that get most confused by surgery and radiotherapy. I've just had long discussion with my palliative care doctor about what to try next. She's given me Oramorph [morphine in liquid form] for when I get desperate, and Duloxitine to try and relieve neuropathic pain. Eighteen months since surgery and a year since radiotherapy..,.can walk, although that provokes intense tightness and discomfort the next day. But I walk anyway because the rest of my body cannot be dictated to by a very confused leg. Hope you feel better soon. You are in those very early days. Good luck. FW

[Bird]

Thank you so much for the encouragement, funny walk! You were correct - I was in the early days and the nerves did settle down. I no longer have any phantom feelings at all! I still have a lot of numbness and odd sensations, but hopefully they will resolve eventually. I'm sorry that you've been experiencing neuropathic pain. I hope the oramorph gives you relief!

[cluca326]

Hi Bird I had my surgery on January 9th. That feeling you get when you lay on your side do you still get it? I know exactly what your talking about. It happens to me on both sides but eventually goes away. Thats a perfect way to describe it.

[Bird]

Thankfully, my phantom feelings have gone away! I hope your recovery is going well, cluca.

[funnywalk]

Oramorph is no good for me. I tried it a couple of times and there was no effect at all. Back to the drawing board.

[Ann]

I use a blanket made by Farabloc. It was original made for phantom pain. It helps on the bad days. Does anyone have problems with electricity/lighting storms? My sensations really fire up during storms.

[Bird]

Thanks for the tip re the blanket, I'll look into it. I didn't know that a phantom pain blanket even existed! That's interesting that electric storms make things worse for you. Have you found anything to help?

[Ann]

Mainly the blanket and staying in the lower level. My left arm and hand draw up during storms/around electrical main stations. . II'm almost 20 years post SCT and still have some nerve issue.