Hello all,
I was on a Teal Tea yesterday and one of our Teal Sisters mentioned the term "phantom feelings" as it related to post surgery pain. I had not heard this term before so I did a 'google' search to learn more. I found it very interesting and I'm curious if others know of this term AND have experienced this. I know I have.
By google definition (which seemed to align with other links I explored) it is defined as:
"Phantom pain after organ removal (or amputation) is a real, strong sensation/pain felt in the missing part, caused by the brain's sensory map getting rewired, where nerves and the neuromatrix in the brain still send signals, leading to feelings like cramping, burning, or itching from the absent body part, and can be managed with therapies like mirror therapy, TENS, meds, or CBT, though it's less common than after limb loss but can occur after breast, tongue, or even organ removal.
Causes & Mechanisms
- Nerve Reorganization: After removal, nerves try to regrow, and the brain's sensory map (homunculus) reorganizes, with areas from other body parts taking over the missing part's space, causing misdirected signals.
- Neuromatrix Theory: The brain retains a "neurosignature" or matrix for the missing body part, which can trigger pain signals even without the physical organ.
- Pre-existing Pain: Chronic pain before surgery can leave a lasting imprint, making phantom pain more likely or intense."
While I knew I would experience healing pain following my surgery, I will admit that I have had a lot of "phantom feelings" of pain in my abdomen even 1.5 years post my surgery. Sometimes it can be crippling, like I'm having the worst period cramps ever (which admittedly is just cruel when you consider there are no reproductive organs left in me 😡). I've discussed it numerous times with my gyn oncology team and have had multiple CTs to explore the possible cause. As of my last CT in August and my bloodwork/CA-125 from November, everything has to date come back NED. I am also on Lynparza (Olaparib), which can cause abdominal pain so I cannot rule that out however they are not 'specific' in the side effects listed of how that abdominal pain presents.
I was actually glad to learn of this phenomenon as I was beginning to think I was going crazy. Has anyone else heard of this and/or experienced this? How have you managed?
#Treatmentandsideeffects
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