Sci

Neurosurgeon looked at my xray and said it was normal however, I don’t know why but he took another look at it and said the leads of the SCS have moved. The biggest thing is that it causes severe pain. Something is compressing my nerves or spine or something. I think the battery pack or generator is either the culprit of the compression or the leads are or both. They asked me if I wanted a revision or removal. After all the hell I have been through with the SCS, it’s definitely a removal. I’m so happy to get this thing out of me! Now, this isn’t exactly normal for SCS so don’t get discouraged. This is quite rare but all my life of medical problems, it’s always been rare. Anyway, I got to make an appointment to discuss this with Neurosurgeon and I’m assuming about the surgery to remove it and make sure I really want this. I’m going to ask him if the severe pain from the leads are the same symptoms as sciatica or the cause of degenerative changes. But he has said he’s just a surgeon which made me laugh when my mom told me. I wasn’t paying attention. I was very out of it that day. If he says anything about the SCS and pain, I’m going to quote him, “that doesn’t happen”. 🤣🤣 sorry, I can’t help it. I like f-ing with people.

I have found the best nerve relief and muscle relief products. Theraworx. It’s on Amazon (I’m obsessed) and it’s of huge help. It’s kind of a pain in the ass because you put it on, let it dry and repeat but it’s completely worth it. You can do it as many times as needed but give it time to work. It won’t take long. It dries fast and then you put it on again. It’s for everyone, not just for CRPSers and possible sciatica. I sent my mom the link to a sciatica brace because the one we ordered was a scam. I felt like that was cruel. Like, how could you but this brace is on Amazon (I told you I was obsessed) so it should be good. I’m still SMH, though. I’ll update when I see Neurosurgeon.

Oh! Rep still hasn’t said anything. I told him about the leads which he would respond but he didn’t. Either he’s really swamped or he’s giving me the silent treatment.

#CRPS #ComplexRegionalPainSyndrome #scs #spinalcordstimulator #SpinalCordInjury #Sci

That’s that. I’m having to write all over again. I got a SCS ( spinal cord stimulator) which is a device with a rod in your spine and a generator in the back hip and it’s supposed to make the pain not go haywire. CRPS (complex regional pain syndrome) is the worst incurable pain (nerve) known to man and it’s called Suicide Disease. It’s incredibly painful. There’s no cure, research or treatment for CRPS. It’s definitely coming out.

it was great in the beginning! But all things must come to an end. The rep asked me if I believed that there was damage to the SCS. We were talking about that. He called the neurosurgeon because we couldn’t get an appointment and TA-DA, he got us in. After my parents bombarded the neurosurgeon with questions. I immediately started shutting down. I didn’t feel like it was my appointment anymore or if I was going to have any time to say something. Well, I wasn’t paying much attention but it seemed like my parents were done. I told him that I was feeling like the SCS was causing me more pain than usual with the rep standing off to the side nodding with support, Neurosurgeon said that doesn’t happen.Then that’s it. I don’t remember anything else. It’s possible I had an absence seizure since I do have epilepsy. I don’t remember leaving the room.

The thing that is bumming me the most is that Rep used to answer me right away.Lately, after that appointment, I hardly hear from him. He’s seen a little bit snappy in one of the messages. Maybe he’s just really swapped and kinda took it out on me for a minute. I’ll just not say anything and leave it in his hands.

Besides that, I have a caregiver who’s been nothing but of major help, my mother. Yes, I have felt like a burden but she says how can you be a burden when it’s not your fault. I try to remember that. She has her days where she’s exhausted from being a caregiver but she always gets back up and do the best damn job she can do. I love her and I don’t know what to do without her.

just A Thought,

Cat

#CRPS #RSD #Sci #SpinalCordInjury #ComplexRegionalPainSyndrome

What I learned on B and I’s outing tonight.

* Pushing him in a wheelchair is a complete body workout.

* Sidewalks in bad condition need repaired/replaced. Sidewalks with areas of broken concrete, or areas where tree roots have pushed up a section at a seam are very difficult to navigate.

* Handicap doors - the ones you push the pad to open automatically - need to remain open 15 seconds longer.

* The ‘ramps’ to cross the street need to be at less of an incline. The footboards scrape, making it impossible to go down them forward. The anti-tip bars make it hard to go down them backwards.

* You have to walk like a penguin when pushing a chair with anti-tip bars.

* Or, anti-tip bars need to have a cover on them so you don’t crack open your ankles hitting the interior and exterior screws. I busted open both ankles. One while walking, one while turning him around to go backwards down a ramp. Lovely.

* People are (in our experience tonight ) generally not respectful of one’s needs in a wheelchair. For instance, rushing ahead of us to go through a door - not to hold it for us, but because they didn’t want to wait for us to maneuver to get through it.

Hold doors, smile, say hi, and teach your children to do the same. Please.

There is healing in kindness. #Wheelchair #Etiquette #Respect #paraplegic #Sci #SpinalCordInjury #Suicide #SuicideSurvivor #ChooseKind #Kindness #MentalHealth
#youmatter
#Mamabear