I’ve been trying to do this blog post for a few days but my health has been making it hard. The last post took me even longer, even though I was mostly copying 🙂
Since March I have been having ongoing health issues. It started with needing many teeth fillings, and then a root canal. I had cheek swelling near that tooth. At the end of April I started feeling a pressure behind my eyes/cheeks, along with swelling around my eyes, which the doctors thought was sinusitis related to the tooth infection. I had various oral antibiotics, and then steroids, and then IVs, everything helped a little but nothing fixed the problem.
From June I noticed that this swelling and pressure was worse with exercise like tennis or skiing or movements like bending over. I would have good days and then without realising it would do something that meant the swelling and pressure became worse. From late August I started getting headaches as well and there were less good days.
By the end of September I had seen 7 medical professionals – CF doctors, ENT doctors, an endodontist and a dentist. Both the dentist and endodontist did not think my teeth were contributing to the current situation. At clinic they still thought it was related to my teeth and sinuses though, despite what the dentists thought & my emphasis on the severe impact this was having on my ability to do anything and how it was getting worse.
By October I had swelling (worse in AM), head pressure and headaches daily, with codeine needed on most days. I was not able to attend university or really do that much at all. I often felt like I had a concussion – hard to think/focus, headache, head pressure and tired.
I spoke to another CF doctor who suggested it may not be sinuses and it was worth doing tests to see if there was a blockage at the end of my infusaport. I googled this – Superior Vena Cava Syndrome – and found that I had pretty much every symptom listed there, and no symptoms that weren’t listed. I was booked in for an angiogram, to see if there was any narrowing of my SVC.
The angiogram was very conclusive – my SVC is completely blocked. This is how blood from the upper half of the body, including the arms and head, drains into the heart. This blood is instead travelling by a different vein (azygos) down to my abdomen, and then back up through the inferior vena cava to the heart. Basically doing a loop via my stomach bypassing the blockage. It is why I have a back up of fluid in my face (swelling around eyes, neck, face), head pressure/headaches/difficulty thinking (cerebral edema) and fatigue. It is also why lying flat, bending over and any exercise has a sudden increase in head pressure often leading to an increase in headache.
The fatigue is different to what I have experienced with CF & lung infections. I often feel suddenly tired, and I can’t push through it, the only option is to lie down and rest. It makes sense to me now, I am used to being able to push through being tired, but it just hasn’t been possible. There is only so much the cardiovascular system can do if there is back up of fluid in the top half of the body.
I am shocked and amazed to see that such a major vein is completely blocked, and yet the body has found a way around this. The doctors think that my infusaport tubing became tethered to the side of the vein, potentially due to it moving up and down slightly, leading to my SVC becoming narrow / collapsing, possibly with a clot. The infusaport still flushes normally, but has always been temperamental in terms of taking blood.
It seems likely that the dental issues did cause some swelling in March/April, and then around the same time swelling from my narrow SVC also started. Having two issues at the same time meant that the second one wasn’t picked up for a while, and means I have had this issue since at least April. I have had the infusaport since June 2012, so it is possible it has been developing for a while.
I am having the infusaport out today, and will be on blood thinners for 3 months. If there is a clot it is hoped this will allow the vein to return to normal, otherwise surgical options may be needed. I am hopeful that removing the infusaport as well as the blood thinners will help my symptoms soon, but aware it may take a while.
I will post again soon, hopefully with good news 🙂
The picture on the right is what I have:
More information, if anyone wants to read about SVC syndrome: http://www.nlm.nih.gov/medlineplus/ency/article/001097.htm