December really has been insane and hard for me. I know I still owe the rest of the year update part 2 onwards but things happening I’m going to try and be good and write while it’s new in my head.
Sadly, my cat of 14 (nearly 15) years passed over the rainbow bridge after getting unwell suddenly. I won’t say too much beyond I am devastated and everything is still fresh. Then the day after he got collected for cremation I had to fly interstate by myself for medical testing. So it’s been emotionally and physically insane for me.
I flew from Brisbane to Sydney to get a digital subtraction myelogram. While this could be done locally it is an invasive test and have heard way too many stories of people needing it redone. So decided if anyone was sticking needles near my spine we will get it done by my doctors how they want it. I was lucky that I was eligible for the patient travel subsidy so the flights and part of the accommodation was taken care of financially.
I flew in the day before the test (Qantas was great with my disability needs) and caught up with a friend and picked up new crutches (save on postage and go there in person). Later I went to see Wicked in Gold Class (small cinema with recliners and food service) as it was 50% off and used that for my dinner. Wicked was good but either the food or busy day caused my GI system to retaliate poorly.
Next day was raining and my hotel was too close to catch a taxi but far enough I got soaked slowly limping to the hospital. The myelogram is done over two days where they sedate you and inject the contrast to the space around your spine (intrathecal) while you are on one side then repeat on the other the next day. I was lucky my group sedate you because I’ve heard some horror stories for the pain. I didn’t find the procedure painful and side effects were tolerable.
The first night I had increased numbness in my hands and face with my heart rate spiking multiple times. The second time interestingly my heart rate dropped for the first time in forever. I was very lucky that they fit my case in the last doctors case meeting for the year (I have friends still waiting for answers) and on the taxi ride to the airport I got a call from my doctor. I still hate when they use words like interesting etc but the test shows the csf leak we suspected definitively.
So what now? Yes I need surgery to treat it but I know they don’t reopen till Feb next year anyway. I also reminded the doctor of some other issues (narrow veins in my head and being someone with EDS and IIH) so that I’m not simple and likely a “spiky-leak” patient that needs their high pressure addressed or we will keep popping leaks. So further testing and likely additional surgery but we have a plan.
I still have other issues including checking if my fusion failed (investigation for that this Friday starting) and my SIJ needing fusion. It kinda sucks that previous doctors never checked because in their mind “you can’t be sitting there talking to me with a leak”. As I pointed out to a nicer one who was more in awe than commenting I have an intrathecal pump and meds usually reserved for end stage cancer to even be able to sit up. That I have to plan before and after cause of how much effort it costs physically. While it didn’t really want to prove them wrong having evidence that you have a very painful disorder is nice instead of doubt.
So that’s where we sit now. More to come later. 2025 sounds like a massive medical year to come.
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