Phantom "limb"

[E]

"After the Battle of Gettysburg, a neurologist named Silas Weir Mitchell noticed a strange phenomenon among wounded Union soldiers: They continued to feel pain in their recently amputated limbs.

But phantom pains aren’t limited to limbs, exactly. A Japanese medical journal has reported a rare case of phantom erectile penis. The patient underwent sexual-reassignment surgery (he became a she) and, in the days following, began to experience a bizarre sensation: His (or her) penis was still there! It was erect! And there was nothing he (or she!) could do about it! In the end, the doctors decided to pursue a second surgery, in which all the remaining genital nerve fibers were removed; after six torturous months, the phantom erection disappeared. A flaccid penis never felt so good."

Full case: scienceblogs.com/neurotopia/2008/10/you_think_your_phantom_limb_is.php

[BA]

The connection between the brain and the body is amazing isn't it?

[james13]

i don't know about anybody else but after more than two years my legs still hurt everyday all day.

[james13]

yeah i'm a complete. there is absolutely no feeling below my belly button. yet there is the pain. odd, just odd

[mrjefffurz]

neuropathic feelings below CNS disruption seems to be common,,,when i was in rehab back in the dark ages phantom pain was totally doiscounted as being "all in your head" and we where advised to stimulate an area where you could "really" feel it should make it go away,,,now in the lesser dark ages neuropathy is recognized as *gasp!* real,,,i have buzzing in my legs 24/7 that occassionally slips over into the pain thing and not being able to do anything about it is very frustrating,,,my friend w/ MS has the full bore pain in her legs all of the time,,,the treatment seems to be dosing with neuorntin,,,did zero for me and doesnt seem to help her altho she continues to take it,,,the 12 thing that does seem to work is pot,,,my friend has a medi-mari license...one of the 1st to get one after NM passed the law allowing medi-mari..my doc is afraid of federal retribution if she gives me a script for it,,,doesnt bother me since i really dont smoke very often cuz it makes me forget what im doing,,,it also makes me horny,,,a bad combination,,*laff*,,,altho the occassions of pain have been increasing both in frequency & at a more disconcerting level so i may start keeping a little greenery around for those episodes...at any rate, im just glad senor chico doesnt have it cuz that would just suck badly,,,

my dear absinthe was i correct in my analysis?....

[BA]

Oct 30, 2008 12:30:44 GMT -5 mrjefffurz said:

neuropathic feelings below CNS disruption seems to be common
my dear absinthe was i correct in my analysis?....

That would be very correct. Neuropathy ranging from annoying electrical, burning and 'boring' sensation is very common after SCI, even complete. Most of the meds have been found to be minimally effective. Neurontin is a big one that is used, but it has alot of other side effects and sometimes very high doses needed to get any relief. Anyone tried Lyrica?

[Phil]

I've tried lots of different meds over 20+ years. Nothing seems to work, or if it does you grow used to it and you have to keep upping the doseage. I suck it up and take nothing now, and that seems to be just as effective without dumping who knows what chemicals in my body or get addicted and live as a zombie. I'll hit some pot once in a great while, and that definitely helps the best with sleep or to kill the pain completely out of anything I've tried, but I don't want to be stoned 24/7.

[Claire]

I recently paid a visit to a group of behavioral neurologists to be studied and scanned. They work a lot with amputees studying phantom limbs, and in some sense BIID appears to be the opposite of the phantom limb phenomenon. They told me a trippy story about how they are learning more and more about the brain's neurocircuitry and how it processes body image. They recently studied a woman who had been born with a hand that only had two fingers on it. Later in life, she was in an accident and that hand was amputated. She then started to have phantom limb sensations; however, her new phantom hand had FIVE fingers, not two! They said that while her hand was there, the feeling that she had in the hand gave her brain feedback that there were only two fingers. But when the hand was removed, the brain's circuitry that says that there are supposed to be five fingers on a hand kicked in, and from then on, she felt all five fingers even though she had only ever had two.

[laurasweetou]

I know one board member that takes Lyrica (which is supposed to be for mine and AB's condition, fibromyalgia) and he seems to get relief from it. I've tried the wacky tabacky for my own pain and anxiety and it was superb... But, it's true, you can't be stoned all the time.

[Claire]

Back to the original topic, the neurologist who studied me gave me a copy of "Journal of Consciousness Studies" for a little light reading ( ) on my trip home. I just finally picked it up this morning. By incredible coincidence, inside was an article/study that he had himself conducted recently: "Phantom Penises In Transsexuals: Evidence of an Innate Gender-Specific Body Image in the Brain".

Abstract: How the brain constructs one’s inner sense of gender identity is poorly understood. On the other hand, the phenomenon of phantom sensations — the feeling of still having a body-part after amputation — has been much studied. Around 60% of men experience a phantom penis post-penectomy. As transsexuals report a mismatch between their inner gender identity and that of their body, we wondered what could be learnt from this regarding innate gender-specific body image. We surveyed male-to-female transsexuals regarding the incidence of phantoms post-gender reassignment surgery. Additionally, we asked female-to-male transsexuals if they had ever had the sensation of having a penis when there was not one physically there. In post-operative male-to-female transsexuals the incidence of phantom penises was significantly reduced at 30%. Remarkably, over 60% of female-to-male transsexuals also reported phantom penises. We explain the absence/presence of phantoms here by postulating a mismatch between the brain’s hardwired gender-specific body image and the external somatic gender. Further studies along these lines may provide penetrating insights into the question of how nature and nurture interact to produce our brain-based body image.

[Claire]

Interesting indeed, thanks Fubb. Did you read the comments? I had to stop reading, the cruelty took my breath away.

[Claire]

Actually, this article is creating a bit of a stir! This morning I received the actual paper written by Dr. Ryan along with several emails from various friends in the community (if anyone wants to read it, send me a PM, I'll email it to you). Two friends down under are already making plans to go see him, and he's responding to emails. They say that they've never actually seen a psychiatrist that knew anything at all about BIID. He's willing to meet them. That's cool.

I can *totally* understand people feeling very uncomfortable about the idea of surgery. That's normal, it's not something you can get your head around until you've spent a lot of time with people living with BIID. Even I have issues with this in some cases. What I can't understand is comments like "err...so lets see... Walk around as a normal able'd human, Or remove a bodypart like a leg or arm, and be a disabled retard for life? God, some people....these days i swear..." or even the ever-popular "These people should see a shrink." Doh! Like that hasn't already been tried by most of us and the idea of surgery isn't one of sheer last resort.

I've posted a couple comments pointing out that there is convincing evidence that BIID is caused by a congenital defect in the part of the brain that processes body image, but nobody seems to really care, they're just having fun bashing the weirdos. Ah well, human nature I guess. Karma for the times in my life I've carelessly made ignorant comments about stuff **I** didn't understand.

[pjdukegavin]

I've been dealing with this phenomenon on and off ever since my accident (11 years). I find myself dealing with both "pain" and "sensation."

Pain is, well, pain. Most times I experience pain its like a cramp or charliehorse. It can be in either leg or both, in the knee, ankle, calf, or arch. The pain is usually pretty acute. Sensation is more like presence, feeling like my legs are still there. I find this to be quite visual, like if I'm not looking at them, I feel like they're still there. The woman I was in my accident with is a quadriplegic, and says that even all of these years later when she has dreams at night, she is AB and walking/using her hands. As I see it we have much the same issue going on in our CNS'.

With the exception of immediately post-op (three weeks or so), it has been more of a nuisance and not incapacitating for me. I think that when my brain had a chance to sort out what was there and not, physical and psychlogical pain sorted themselves out too. I'm not a drug person, so I can't really comment on what does/does not work, but I have tried yoga, massage, accupuncture, and early on, TENS therapy. All have moderately helped manage the feelings.

-PJ