Barnclown

Good question! Glad you asked! Am preparing for neurosurgery and would’ve posted asking this if you hadn’t. I have heard we should up our pred a few days before surgery...am on 10mg maintenance pred (+ 1000mg myco + hydroxy + other meds for other aspects) and have the ok to increase to 20mg for several weeks before tapering back down again when i need analgesic help re L4 nerve root stenosis. So am wondering whether this protocol applies to surgery...

Looking forward to following your discussion ❤️🍀 Coco

DJK99

Hey Serser, good question... wish Id asked that recently - twice! I had rather nasty bilateral foot surgery in November and took a lot of time to get better.. I had infections in both feet too. I discussed the risk of this being higher in the pre op and it was agreed they would put in an antibiotic into the mix whilst under. Didn;t stop the infections mind.. but further strong antibiotics sorted them out in a week. I was quite unwell after the foot surgery - being sick for 3 days whilst in the hospital and also had something called Shock which is when you blood pressure goes very low I think. Lots of nurses flapping round and oxygen and drip etc occurred. I was allergic to morphine... hence the puking and not being able to eat or get up out of bed. Have you had much surgery ever? Have you had morphine before? I realised it was that that was making me really unwell (sadly the hospital nurses didnt) so I asked to be given something else. Ta-da.. I started eating again the next day... and coudl stand up long enough to get myself tested for the stairs (as they do with feet stuff) and outta there! I realised a week or so later after having been given it again at A&E (as had hematoma and was in a right state!) that I was allergic. Once home I was brushing my teeth and realised I was going to pass out if I didnt lie down. I then got heavy breather, hallucinating and heart banging... so ambulance came round and sorted me out with antihistamines. So........ really really important to think about whether you might be allergic - or have trouble with morphine ie sickness... they now give me Fentanyl into the hand/mix and anti sickness drugs (which they do anyway with general) - which I had recently for breast surgery (no, not implants and i was MUCH better....! No sickness! I did have a flare after the feet surgery - my lesions on hands came up, had mouth ulcers and frankly was in so much pain feet wise I was on heavy codeine all the time. It was major. I would say drink as much water as you can ALL THE TIME after surgery.... flushing out all the nasty meds/toxins and keeping your body hydrated as much as possible is ESSENTIAL. Also eat as healthy as you can - lots of green veg, fruit, and roughage. I had terrible constipation (as ever!) afterwards due to the drugs - and if you have codeine I sure you know how awful that is in blocking you up - but great for pain relief! So - make sure your bowels are clear pre up and take some laxatives before the op... with tons of water.. and then take some more after the op.. and keep taking them. It was 4 days til I had a eureka moment... not good for the bod and Im sure youve been told how important for Lupees to keep their bod free as poss of toxins as really ads to Lupus symptoms. REST as much as possible (not that you have a choice after surgery!) and make sure you have peeps around doing everything for you, and as soon as you can start movin around do.... What else? I took Arnica post op - homeopathic... and also 1000mg of vit C morning and afternoon, plus magnesium/calcium/zinc (holland & barrett combo) - 3 tabs a day (got rid of my previous cramp!) and just helps bones/nervous system etc, and also glucosamine and chrondoitin which helps connective tissue and joints etc.

Now then - I had to come off my methotrexate 2 weeks pre op and for 6 weeks until healed.. my bod didnt like that and lupus symptoms came back with a vengeance ie all bones/muscles/tendons etc were in agony - my hands in particluar flared terribly and joints swelled around the lesions. So even though Id only been able to go back on it again for a month, I had to come off it again due to the urgent need for breast/lymph node surgery. So my Rheumy gave me a prednislone shot in the backside... I did not react well to this - dreadful insomnia for two weeks... and the jitters. I have had prednislone a year or so ago pre methotrexate but only tablet form.. I felt quite odd then but i could sleep (well, my usual not great sleep - but not needing heavy sleep drugs and even then waking up every 2 hrs to have to take more... I cannot have the injection again and am going to discuss what now next Monday with rheumy as facing radiotherapy soon so cant go back on metho yet. Anyway - so I would be very wary of more prednislone as you need your sleep so much to heal - have you been affected with insomnia due to the pred yet? If not, you might be fine... and you can take sleep meds if you are, but its more toxins into the system eh? If its a major shot of pred in the mix in your arm it might be different to how you react to lower dose tabs..

So - think about whether you are sick after surgery and might be allergic to Morphine and ask the team to give you Fentanyl instead.

Think about whether your system reacts badly to steroids and whether, if you really must have it, you need some Zolpidem sleep tabs on stand by at home

Get some codeine in place and Paracetamol to take for pain killers

Have a good clear bowel on the day of surgery and take laxatives pre op.. and then post op. Keep your body moving down there!

Take tons of vit C a day (not near bed time) slow release 1000mg twice a day.

Take Arnica as directed post op (but discuss with your rheumy and physicians obviously in case they say dont, all vits to - sorry should have said - although I didnt)

Drink tons of water until you cant drink any more pre the cut off time pre op.. and drink tons of water post op and forever - had refill bottles near me all the time and got my friends to keep them topped up on each daily visit. Glug glug glug.

Get tons of high roughage food ready in the house ie prunes, apricots, pears, kiwis bran, wholemeal foods, tons of fruit and veg, chia seeds etc for your cereal.

And sleep and rest as much as you can...

No alcohol for as long as you can.

All this sounds simple but it is really essential.

And the very best of luck to you - and anyone having surgery etc. Any further questions, just ask as Im very happy to help.

D x

Serser in reply to DJK99

Wow DJK99 thank you so much!! So much really useful information that I'm going to jot down in a minute!!

Me and morphine/codiene don't get on too well either so I usually end up with lactulose!! I think I'm having Fentanyl - but i'll check.

Good advice re: plenty of water and good healthy foods as I do tend to get lazy with food prep especially after having surgery when I can't be bothered making things!! Hubby is going to have to step up there methinks!!

Good idea to have some sleep tabs nearby too, as I'm awful if I don't sleep well - it definitely puts me at higher risk of flaring if my sleep is poor.

I think I have vitamin C in my cupboard but as you said I'll check this is ok to use first. I also have some glucosamine in there too.

Resting enough is always a challenge with 3 kids and a house that equates to a small zoo with animals, but I will try!!

I have had a lot of operations on my ears/head in the past so I am used to being put to sleep. The staff at a previous op I had actually gave me a photocopy of the mix they use to put me to sleep that I know works well and leaves me without sickness when I wake up, so i have given the hospital this information.

Thank you so much for taking the time to write such a comprehensive, and useful answer that I'm sure others will benefit immensely from too!

xxx

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DJK99 in reply to Serser

You’re v v welcome Serser! I live alone so it was pretty damn hard with the feet stuff. She wees and a room downstairs prepared like a bedsit! Wanted to say, i ordered a ton of fresh excellent soups.. Superfoods or something - and got the ones with wasabi peas, spinach, broccoli etc.. and added a bit of cheese and had with wholemeal bread. I froze a ton if them and mates kept decanting them so I cld use the microwave I’d moved into front room where was sleeping/living! Oh wot fun I had..! Anyway - if yr hubs isn’t going to do ultra healthy stuff I’d recommend that for yr daily dose of greens.. so important. Maybe google foods that u should eat to help u heal etc. I did.. and did a huge order pre op. Having dried apricots etc near u (to be eaten with tons of water drunk at same time obvs as they’ll dehydrate u if not) is a great thing to have.. oh and ready gutted pineapple was a life saver when I felt v knackered. Made my day! (I’m easily pleased ;). All the best to you.. x

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Krazykat26

There's nothing for me to say as DJK has covered it..very informative..with loads of advice!! 🌟🌟

All that remains is for me to wish u good luck on your coming surgery serser..n I hope u make a speedyish recovery..work can wait!!! 💐🍀xx

Serser in reply to Krazykat26

Thank you Krazykat26!!

Work can indeed wait!!

Xxx

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Krazykat26 in reply to Serser

😽😽this afternoon I have read your article in Lupus UK magazine...oh my!! I was really moved to hear your story n to see your artwork in photo form...n your poem!!! 🌟🌟🌟🌟🌟Xx

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Serser in reply to Krazykat26

Thank you Krazykat!! I got my copy today too, mum and I had a look at it together. I am glad you enjoyed reading it!! If you look on pg 31 the group photo of the delegates, mum and I are in there I'm the one in the grey sweatshirt in glasses on the first row (because I have height issues!!), and my mum is right behind me in the glasses. It was such a fabulous experience and everyone was so lovely, I was very lucky to be chosen as there were so many other lovely clouds. xxx

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Krazykat26 in reply to Serser

I see we have a lot in common!! I trained as a mental health nurse in my youth..I qualified in 1986 n worked in the NHS until 2000..I preferred community so I became a CPN and I specialised in addictions..I have always been intrigued by the mind body spirit link n the thing that drew me to psychiatry was the fact that we dream..when we're asleep n all our body rests, the mind is always busy!! As a consequence of working in mental health I do have quite a warped sense of humour but now with lupus it helps me to get through the challenging times!! When I left the NHS I developed my artistic side..art, music, poetry..I lived off grid in a horsebox n we travelled around making n selling chainsaw carvings for a few years..I earnt quite a few pennies painting horseshoes n selling them as well as painted pieces of wood..door plaques etc!! I loved it but unfortunately lupus struck me down n I had to get somewhere more permanent to live.

I've had a look at your profile n I totally get the wolf-vamp thing..I have been writing a poem about 'embracing the wolf..n I do tell people I'm a vampire allbeit a very lazy one!! Funnily enough I've got two moles on my neck that I've always said remind me of a vampire bite!! 🐺🧛Xx

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Serser in reply to Krazykat26

We do sound so similar!!

Gosh I would just love to live off grid! We are looking into moving to Canada to live in the wilderness, I just hope the Lupus doesn't hold me back with that one!!

I work in the community too, I'm a memory nurse assessing for dementia then diagnosing. I'm struggling with the pace of working full time though hence the idea to sell up and ship off to Canada, as we've worked out that I probably wouldn't need to work if we lived over there.

I used to do art therapy with people living with dementia - I loved doing that!

I just love creating art, but even that's a struggle at the moment as I am so tired after work and at weekends - I sleep all weekend!!

I am intrigued by all things spiritual and otherworldly. I like trying to find an alternative perspective if I can by opening my mind to all possibilities

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Serser in reply to Krazykat26

Before getting into older persons services I too used to be a primary care nurse in the community working with addiction - this is almost spooky! We could be twins!!

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Krazykat26 in reply to Serser

The universe works in mysterious ways!!! Happy to meet u sister!!! 💖Xx

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Horsewhisper

Hi Serser, I’m sorry to hear that you have to undergo surgery, doubly not nice with the thought of a possible flare post op. Some fantastic advice from our fellow wolfies - the only thing I can add that may help to make a difference is a touch of mindfulness before you go down to theatre. Maybe also focus on some deep breathing to help oxygenate the blood and smelling some calming stuff like “Clary Calm” essential oil. I hope it goes well for you - sending positive, healing thoughts to you for a flare-free recovery! Xx

Serser

Thank you Horsewhisper. I tried Mindfulness a few weeks ago in a class and found it to be useful and I'll have a look for that 'clary calm' oil - I do like a nice scent to relax with!!

Fingers crossed I'll avoid a flare with all this fab advice

Thank you xxx

panda2

This has been a dynamite set of conversations/posts for me to read (don't know how I missed it at the time). Turns out I'm suddenly now due for surgery too. SO SO helpful! Thank you for posting Serser and thank you for that exquisite, detailed response DJK99!

I really hope you are healing well Serser.

Panda x

DJK99 in reply to panda2

Oh gawsh! Just seen your reply Panda.... thanks for thanking me - youre very welcome - so pleased to read we all helped. Sorry to hear youre having surgery soon - hope its nothing too awful. Im back under the knife again in June too apparently just found out yesterday... so will use my own/everyones advice yet again ;). All the best to you and hope it goes really well. x

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panda2 in reply to DJK99

Well thank you very much for the kind wishes. Sending the very same your way. So sorry to hear you're having another and only just found out. : (

May we both *sleep* well and wake new and healthier people!

P x

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Serser

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!