I know it's been forever since I've added anything new. Honestly I've been waiting it out. I feel like every time I update, something pops up directly after.
So I'm finally at a point where I feel comfortable enough to inform everyone on what's happening. Since the fiasco with my port & complications with home health, everything has been relatively smooth, at least for me.
My port is there to supply iv lactated ringers (electrolytes) 3 times a week & push benadryl twice a day. Because of my condition, mast cell activation syndrome, I can develop a reaction to anything at any point. That being said, if I've used it forever, I generally only use that specific thing. But if it's something new in contact with my body for extended periods of time, I have to alternate to make sure I dont react. That was the battle with home health, getting special dressings & needles.
Some time at the end of November 2019, I started developing some strange symptoms. I was having terrible issues processing information and remembering information. I also had developed musical tinnitus (yes it's real). My NS (neurosurgeon) who had been so patient with me didn't feel like this needed to be looked into further.
As more & more symptoms were popping up, I contacted a csf leak team (very important & seen by people worldwide) who was @ the same hospital as my NS, just for advice. I recieved a response the next day to have a ct myleogram scheduled. (I do believe my NS was hesitant about this bc of how much I struggled to recover from everything else).
During that waiting period, my mast cell began to get increasingly worse (again). The iv benadryl just didn't seem to help much anymore. I was getting the debilitating cramps. I was reacting to practically everything. That is when I learned about dermagraphic skin (also known as skin writing). I had always had that to some degree but this became severe fast. Basically any pressure, rubbing, or friction applied to any area of my body can develop flushing, rash, hives, swelling. It looks kinda like a sun burn at times. & because of my mast cell, it felt (still does) like a severe burn. I don't think people believed me; but when my nurse prepped skin as lightly as possible & a rash still appeared, she was shocked. I was also going back on my milkshakes & gummies diet because of the severe nausea. I also had an er trip for my first recognizable (to me) ana rebound. It was the heparin. So now I have epipens 👐
After tons of rejections, we finally found someone to treat me, but she is booked out 6months. My cardio stressed the urgency & it's now in April.
Tuesday 18th was my appt with the csf doc. She seemed to really care about my situation. She could tell I was scared of the lumbar puncture (a myleogram is a ct where the radiologist inserts a very small needle into your spine to get the contrast in that precise location). But as I looked back every past year, I realized that's nothing compared to the super tight sutures, chest tube, etc. All done while awake (given pain meds but I was guessing the needle was smaller than my port needle).
So I went through with it.
She found high pressure & nothing wrong with the shunt. The high pressure has probably been around for a very long time and she theorizes it was causing all the major issues i was having not tethered cord. 🤦♀️ i am taking a med to support her theory & then if it works, I will be having my shunt adjusted.
I will definitely explain more later. I've gotta do some research on my shunt brand & all of these other things. My pain is starting to kick in as well.
I also have a dexa scan in march to check for osteoporosis.
❤ love you all & appreciate your kindess! Please continue to pray
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