Hi all,
I thought I drop everyone a line to let you all know what has happened since my op on 27th March...so sorry about the lengthy post but you'll understand why when you read it! It's not all doom and gloom and I have learned a lot which I'd like to share with you...
When I woke up after the op I had a headache but didn't think much of it, after all the surgery involved drilling a hole into my skull and putting an implant in place so my theory was that a headache was to be expected!
I had been told by the surgeon that one week off work should be ample for recovery time, but knowing me with my Lupus I aired on the side of caution and got a 2 week sick note. I wasn't given any pain relief but told to take over the counter analgesia if required - I had to have oromorph after the surgery and was given some codeine to get me home on. On the way home I picked up some cocodamol, I took some later in the day, they weren't doing anything for the level of pain my head was in.
The next day I called my surgery and asked for some stronger pain relief so they prescribed Zapain, initially this took the edge off the pain, but I was light sensitive and confined to lying still in my darkened bedroom day and night. The beginning of the following week, 5 days post op, I was still in pain, in bed. Mum was worried so we tried to get hold of the surgeon for advice to no avail. Then Tuesday night came - I was trying to sleep, but the Zapain was doing nothing, I was getting visual disturbances and double vision, the pressure in my head was immense and so painful I felt like I needed to stick a knife into my head to release the pressure, I was crawling around and around in circles on my bed, tying blankets around my neck, hanging my head out of the window, cradling my head and moaning out loud - nothing relieved the pain. I also had this horrid nightmare that felt so real I was actually acting it out on the bed - I guess it was a bit like hallucinations, the only thing was that I was fully aware that my body was reacting to something ad that what I was experiencing wasn't real - it was like the 'sensible', 'together' me was looking down on the 'crazy' me.
Anyway, unfortunately, my husband was in France, away with work. I put the light on, it was 3:30am - I debated what to do and decided to call my mum and dad. Dad at with the kids while mum took me to A & E. I'm not going to go into the awful, drawn-out experience of A & E as I know the NHS are under awful pressure as I work for them myself, but lets just say that we arrived at about 4am but I didn't get any pain relief until 8am, by which time was in a shaky mess. CT scan was completed, which showed nothing, so the staff stabilised me on anti-sickness medication and pain relief, then sent me home the next day (even though I was being actively sick at the time of discharge) saying that it was just post-op pain, despite me trying to say that the pain and pressure I was feeling was far more than that. I should know, I'm no stranger to post-op surgery pain!
Anyway, I continued to be sick all that day - consequently, I couldn't keep any pain relief down so I was also in extreme pain with my head again! We also realised that although I'd been written up for anti-sickness medication they hadn't sent me home with any, so back to A & E we went, for them to stabilise me on pain relief and send me back home this time with anti-sickness medication.
Over the weekend I stayed in bed, fairly comfortable now but like a zombie, unable to move or have a conversation - deteriorating. My family had given up on the idea of returning to our local A & E as they just didn't believe there was a problem.
Early the following week we finally managed to get hold of the surgeon (after much leaving of messages) - he told my husband to bring me in to see him. He took one look at me and sent me straight to A & E (not my local A & E thankfully - a different one), with suspected blood clots or meningitis.
I was admitted and CT scanned again - this time with contrast dye - which showed up 2 clots, one in my brain and the other in my neck (jugular), which was preventing blood from draining from my head back into my body, hence the pressure/headaches. The posh name for it is Dural Venous Sinus Thrombosis (DVST) - its rare, which is part of the reason why so many people overlooked it, but its annoying because I was telling people I had Lupus, and having Lupus increases the possibility of having clots.
I was started on warfarin to thin my blood and heparin injections, I was also given two different types of IV antibiotics over the course of my weeks stay in hospital.
It's now been 5 weeks since my op and 3 since I started treatment to get rid of the clots. I have made some improvement - my headaches have improved a lot, though I am still on regular pain relief. I still have double vision (I can't drive - grim) which I am seeing eye specialists for and am on a special type of medication to further reduce pressure in my head/eyes in the hope this will remedy my double vision and visual disturbances. I still have a numb/pins and needles right arm and a general slowness in my level of cognition compared to how it used to be, but I am hopeful things will improve.
Three weeks feels like a long time when you've been unwell, but really when it comes to something like this, it's early days. We are still waiting to figure out if it's the implant or my Lupus that has caused the clots, or maybe even a bit of both??
I have been referred to see a neurologist who might be able to help, and I am still on warfarin. I am due to see my rheumatologist this week to discuss if he thinks I should remain on blood thinners long term - I don't want another clot in the future!!
I didn't want anyone who is scheduled to have an operation to read my experience and for it to put them off having surgery as it can be just as dangerous not having surgery in some cases as having it.
Although scary, I have learned some things from my experience. I wasted time going to my local hospital (not the hospital where I'd had the implant inserted), this was mistake number 1 as the Ear Nose and Throat (ENT) staff didn't know me from Adam, they were also not familiar with the procedure I'd had done - that being said they did miss some vital things that could have helped get me the help I needed 7 days sooner, which I will go on to now....
Mistake number 2, the hospital staff should have had the knowledge that not all types of clots show up on standard CT scans (as in my case), what I now know I should have pushed for (and will do in the future should I end up in a similar situation), is a contrast CT scan, where they pop a cannula in your arm and put dye in, this shows up all the blood vessels and in my case clots - had this been done at the first hospital I think I would have had less neurological damage to contend with now.
Mistake number 3, staff at the first A & E department I went to could have got me checked over by an ophthalmologist as I was complaining of double vision (a symptom of DVST) - had they done this the eye specialist would have been able to see swelling at the back of my eye which was causing the double vision and would have recommended to staff to investigate the possibility that I may have a clot. I spoke with the ophthalmologist at the second hospital where I was treated and she confirmed the above - that if she'd taken one look at my eye she could have had a strong suspicion of clot even without a CT scan.
Mistake number 4, people assuming that your pain in operation related when you know in your heart of hearts that it's more than that - as in my case - I'm not an overly dramatic person but maybe I should have done more kicking and screaming (I didn't feel well enough to though, every movement and even emotion made my pain worse) - this was all taken advantage of I feel, and I don't think I was properly listened to - ending in negative consequences for me.
Mistake number 5, being discharged whilst actively being sick - being sick is a symptom of (DVST) - the staff put the reason I was being sick down to postoperative pain, nothing more.
Mistake number 6, relying heavily on neurological testing - despite the state I was in, I was stall managing to complete the assessing Doctors neurological testing (scary I know) - but in DVST his is quite common - but again because I was passing these tests I was again overlooked.
Mistake number 6, DVST is rare but by its nature can happen to people with Lupus. I told every health professional I met that I had SLE and no one linked the possibility of a clot with my Lupus, which drives me mad because although I didn't know the formal name DVST, I did mention that people with Lupus can have clotting problems - this was somehow just not acknowledged.
I have got in touch with the hospital to update them about what happened after they'd discharged me and am awaiting their response.
I guess all of this is great to know in hindsight - gosh I wish I'd known this just 4 weeks ago, this is why I'm sharing it with you. Always go with your gut instinct, it was right in my case. try to find someone who will listen and communicate well with you (which can be hard in A & E). Always go straight back to your source e.g. the surgeon who did the op (as we did but he was hard to get hold of), make sure you have a good contact number/email for the surgeon, ask plenty of questions, and just because you are passing their tests still insist that your gut is telling you that something isn't right and needs closer attention, so ask if there are any further tests that can be done to rule out the more obscure conditions - I am proof that you don't have to be anyone special to be a more obscure case!! It does happen! Always know what the emergency plan is - what do you do if you feel your recovery isn't going to plan?
I hope this helps and doesn't put anyone off!
I have since had my hearing aid switched on (last week), unfortunately such a happy event was a little overcast with my present condition, but I'm happy to report that it has helped improve my hearing greatly. The only thing is that it increases my headaches if I wear it too long at the moment, so limited use only. There is also a bit of a downside in the possibility that if my symptoms don't improve (double vision, numb arm) after he believes the clots should have gone, it might be the position of the implant that's causing the vision problems, in which case he may have to reposition (clot risk again) or take it out completely - which would be awful as all of this would feel as if it had been for nothing - but I'm not thinking too much about that at the moment!!
Positive thoughts and vibes 
Love and hugs to you all! Look after yourselves!
Good luck with and upcoming surgeries and remember to question everything, because health professionals don't know or consider everything about everything despite their education!! You are 'professional' in you - no one knows you better, so go with your gut instinct!
Syrinx on the spinal cord 
Blood clots and SLE 
Shingles again , so over this! Thinking of getting the vaccine- do the shingles vaccines work ? 
I was diagnosed with mild lupus in 2014
lupus "like" syndrome - and many other auto immune diseases. New symptoms what is this?
