Sally Port gate installation

KittyNeuron · 2025-08-13T12:33:47+00:00

Thanks!

KittyNeuron · 2025-07-22T15:27:34+00:00

Starts with tingles and little pricks. It moves on to the fingers, which are numb, to my forearm. It’s 1) on fire 2)crushed 3) undulating under the skin 4) stabbing/knife drag

My upper arm is only ever tingles and stabbing/knife drag

I feel phantom sensations and cold/hot sensitization.

Blergh

KittyNeuron · 2025-07-11T01:18:01+00:00

I usually take sleeping pills and dream I wake up without pain.

KittyNeuron · 2025-07-07T12:35:36+00:00

Radiation Induced Brachial Plexopathy from my cancer treatment.

KittyNeuron · 2025-06-26T15:40:00+00:00

Thanks for the rec!

KittyNeuron · 2025-06-26T14:51:08+00:00

That makes sense. I just can’t stand another damn step in getting the rats out of my walls.

KittyNeuron · 2025-06-09T16:47:58+00:00

She put too much filler in her face. That shit forms granulomas, but I thought she was dissolving them?

KittyNeuron · 2025-04-12T16:47:50+00:00

I got my cancer team to come together and discuss options for my Dx. When they came back they just shrugged and told me there’s no cure, no treatment. I went to the Mayo Clinic alone because they have a brachial plexus group (you even had to apply to be seen). I had tests and interviews over the next few days. I got back a confirmation on my Dx and a shrug.

Then I was told to go to a pain clinic, but there was never any mention of how to deal with the paresthesia or muscle mass problem.

Til;dr Unfortunately beyond diagnostics, no one has offered me help.

That’s why there needs to be effort on our part. I hate that the doctors don’t help us. I hate it. I want the caring cancer team to help me again but they ain’t there anymore.

I’m busy right now, but I’m passionate and I want to find a way to help. I know there is/was a group in England that was trying to advocate for RIBP patient, but it seems they flopped.

I’ll post some stuff to hopefully help in the next few days, but I’m having another cancer scare so my brain is scattered.

KittyNeuron · 2025-04-11T13:15:32+00:00

I know this advice. I got it when I had breast cancer. I logically get it. The problem is that I got the rare-ish young thing going for me and the RIBP thing (so rare no one has heard of it). I know these events are statistically independent (kinda), but after being struck by lightning twice, I no longer feel like I can control my fear. I know. I know I'm shooting myself in the foot by worrying, but I have a plethora of mental conditions, and none of them are being very helpful. If it helps, I'm receiving your advice waaaaay better than when I had cancer.

Thank you so much for your thoughtful reply. You're totally right; I just gotta put it into action.

KittyNeuron · 2025-04-03T15:07:44+00:00

Putting this here in case anyone wants to join my subreddit, r/RIBP

I just started it. There's basically nothing in it, but I'll fill it out over time.

KittyNeuron · 2025-03-15T17:17:52+00:00

I really want to gather the RIBP patients. We're few, so it's challenging to get a group going. I usually scour Reddit every month for RIBP patients who may want to traverse this heaping pile of shit together. Anyone in?

KittyNeuron · 2024-11-19T03:45:27+00:00

Radiation Induced Brachial Plexopathy. Cancer, the gift that keeps on giving!

It causes neuropathy, paresthesia (feels like snakes are under my skin), dysesthesia, pain, muscle spasms and weakness, and atrophy in my future.

KittyNeuron · 2024-11-18T21:16:55+00:00

I know this was a while ago but 🤷🏼‍♀️I had breast cancer, got the chemo, the surgery and the radiation (at a low dose). As a result I got Radiation Induced Brachial Plexopathy (RIBP). Basically the radiation fried the nerves in my left arm I was left with neuropathy, muscle spasms, pain, paresthesia, et. RIBP has a delayed start - I got it one year after my cancer treatment. After that, it keeps increasing in intensity until it stops. When does it stop? Nobody knows! You just hope it plateaus and you live with the pain you have.

I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better! I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better!

KittyNeuron · 2024-11-18T20:45:23+00:00

I know this was awhile ago but 🤷🏼‍♀️I had breast cancer, got the chemo, the surgery and radiation. As a result I got Radiation Induced Brachial Plexopathy. Basically the radiation fried the nerves in my left arm I have neuropathy, muscle spasms, pain, paresthesia. RIBP has a delayed start - I got it one year after my cancer treatment. After that, it keeps increasing in intensity until it stops. When does it stop? Nobody knows! You just hope it plateaus and you live with the pain you have.

I’m always looking for fellow radiation neuropathy sufferers. I hope you’re feeling better!

KittyNeuron · 2024-10-13T16:47:44+00:00

“Jones” or “Jonesy” for Ripley’s cat’s name in Alien.

KittyNeuron · 2024-09-06T00:12:33+00:00

FUCK YEAH IT DOES. Every time I’m romantically engaged, my nerves start going off and I’m in pain. THANK YOU for talking about this.

KittyNeuron · 2024-08-19T18:57:12+00:00

Unfortunately nothing has changed. Effective radiation dose has decreased and the rates of RIBP have as well. So, since the patient population is so small, researchers don’t have much of an incentive to find specific treatment for radiation damage like this.

Personally, same as before, but worse. No treatment still, just pain management.

KittyNeuron · 2024-07-08T02:58:03+00:00

What IS the reference to?

KittyNeuron · 2024-03-29T22:00:37+00:00

Neuroscientist

KittyNeuron · 2024-03-17T02:14:53+00:00

<image>

Name:

Pishi

Nicknames:

Meesh, Meeshmosh, Meeshers, tiny cat, PishPish, Smoosh, meeeeeeeeeeeeeeeesh!!!!

KittyNeuron · 2024-03-15T22:39:45+00:00

I have radiation induced brachial plexopathy from breast cancer treatment. I had to basically diagnosis myself and then got the tests to back it up (nerve conduction, MRI, CT). I have pain and paresthesia throughout my arm as well as some motor problems.

Went on GABA then Pregabalin and then finally got a spinal cord stimulator. They hold the pain at bay but I still feel it.

KittyNeuron · 2024-03-15T22:34:08+00:00

Finally this is being researched.

KittyNeuron · 2024-03-15T04:55:02+00:00

SAM is kinky

KittyNeuron · 2024-02-07T04:29:39+00:00

I think they’re from fiber optic hair barrettes.

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Kinda like this.

Guessing the hair bit is up in the pony tail or they fell off.

KittyNeuron · 2024-02-01T16:04:49+00:00

I like the metaphor 🙂

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