4 November Update

Posted on Updated on

Sorry to those who have sent messages that I haven’t answered, I’ve been on strong pain relief over the last week.

The infusaport removal went well, following this the angiogram showed nothing had changed and that the vein (superior vena cava or SVC) is still completely blocked.

I have had problems with severe dizziness, headaches, difficulty focussing/thinking and difficulty with my short term memory over the last week, which I believe is related to an increase in intracranial pressure (from the vein blockage). I have mentioned these symptoms to my doctor and they are hopeful that the warfarin will soon help if there is a clot in the narrow SVC. Overall my symptoms have not improved since before I had the infusaport removed.

I have been very reliant on pain relief and frustratingly have now run out of the stronger meds (confusion since last week with faxing scripts to my pharmacy that appear to have gone missing). Wasn’t able to get an appointment with my GP and tried to organise seeing another GP but the wait was over an hour and I didn’t have the ability to wait in a chair that long.

Whilst I am expressing my frustration I’ll also add that it is frustrating that I’ve had this blockage since April but it was missed, with doctors not thinking about other options, and I believe not taking what I was saying seriously (in terms of the significant effect on daily activities/worsening symptoms and me questioning whether it was dental/sinuses). I am very grateful that it was finally picked up.

My parents were quite concerned so am now in emergency waiting to see someone, to try to get stronger pain relief and also to get a head CT and neurological consult.

Will update soon.


Below is the angiogram from last week, the blockage is just below the black area. It should flow straight down and into my heart, and instead is going around via the vein behind.



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