Hi friends, I'm 7 weeks post-op now and I've been keeping a diary I thought I'd share for any of you facing surgery in the future. I know that for the months leading up to mine there were so many questions I had about how the recovery would go that I found other peoples' diaries very useful. So I hope you get some use out of this.
Pre-Op Info: I have suffered from chronic right-side GPN pain for 4 years. I take 800mg Tegretol (carbamazepeine) and 10mg amitriptyline daily. After 3.5 years of being bounced from hospital to hospital and ENT to ENT, I finally found a neurosurgeon in London and asked my GP to refer me to him. Within 8 months of meeting this surgeon, he had located an offending artery in the right side despite a previous 15 MRIs in different hospitals coming back as “clear”.
Day 1; February 24th 2015
Awake from recovery to a world of pain and nausea, to be expected though. Given oramorph to relieve the pain but this makes the nausea worse and so I ride it out until I fall asleep again. The first day is a mist of in-and-out-of consciousness until the GA mostly wears off. No catheter put in, pain relief taken is ibuprofen (400mg) three times daily and 2 x paracetemol every 4 hours. Left side of my throat feels like there’s a lump in it and I can’t swallow much – I’m reassured that this is from the intubation tube.
Wound site extremely uncomfortable, but the pain relief works for it. Difficult to sleep while staying off the right side of my head but plenty of pillows helps this. “Lump” feeling still in left side of my throat, but I also cannot swallow much even on the right side of throat, only sips of water. My voice is a whisper at this stage; again I’m told this is temporary. Being put on 400mg dexamethasone (steroids) in order to reduce vocal chord & brain swelling. Ibuprofen 400mg x 3, paracetemol x2 every 4 hours.
Swallowing is still a big issue. I’m managing water and thin soups but that’s about it (can’t even manage puree food!). My voice is still a whisper and I’m seen by a specialist from speech and language therapy to help me be able to swallow liquids better. Small sips, swallowing 2-3 times with every swallow. Coughing lots too and again I’m told this is an intubation problem. Tablets are being crushed so I can get them down as I’ve asked for the cannula to be taken out already as they were hurting my hands. Wound is definitely easier to bear; sleeping on one side is ok too. 400mg dexamethasone, Ibuprofen 400mg x 3, paracetemol x2 every 4 hours.
I’m now managing puree foods so there is a definite improvement in my swallowing thankfully as I was spending my “alone” moments worrying it might be permanent. With all the drugs I’m feeling very sick, as there is nothing really in my stomach. Along with the pain relief I’m given anti-sickness tablets. Voice is still not great but more than a mere whisper but still very hoarse. Cough is driving me nuts as it hurts the wound when I cough! 400mg dexamethasone, Ibuprofen 400mg x 3, paracetemol x2 every 4 hours.
My voice is sounding much better! Although still hoarse, there’s a definite strength to it that I haven’t had since surgery. It’s given me a real hope that they were right – it will be temporary. Eating is going better too; along with puree food I managed Cottage pie, porridge and custard. Took myself off to the hospital restaurant today to experiment with what foods I’m able to eat. I’m being kept in due to the swallowing issues so as soon as I can prove it is all improving then they’ll let me out. Still coughing but none of the medical staff seem overly concerned. 200mg dexamethasone, Ibuprofen 400mg x 3, paracetemol x2 every 4 hours.
Home time! Still a bit hoarse but the swallowing is 90% back now which is a huge improvement very quickly and I’m grateful. Dying to be back home where I can get a full night’s sleep and eat whenever I want. Family are staying to look after me and the household. 200mg dexamethasone, Ibuprofen 400mg x 3, paracetemol x2 every 4 hours.
First morning in my own bed and I’ve never been so grateful, I really didn’t expect to be in hospital so long. Went to my local nurse to have the staples removed – took 30 mins and some were more painful to come out than others. I made sure to take 400mg ibuprofen before I went in!!!! Wound very tender for the rest of the day and although re-bandaged up, sleeping was hard. Swallowing all but back to normal now as well as the talking. Really bad coughing fits today, so much so that the right side of my throat is sore (the gpn side; about 4 out of 10 on pain scale) & I spend my day wondering if the cough has set off the GPN again? 200mg dexamethasone, Ibuprofen 400mg x 3, paracetemol x2 every 4 hours, non-prescription cough syrup. Last 200mg dexamethasone today.
Days 8 - 14
Wound has settled down since the removal of the staples and I was able to give my hair a “surface wash” with a non-PH shampoo (e.g. Simple) – surprised to find all sorts of orange gunk coming out with the water! Can’t wait to have a proper hair wash. Cough isn’t so bad but I continue taking the cough syrup anyway. GPN pain (right side) is still there but not as bad as it was pre-op; about 2 out of 10 on pain scale. Had the wound checked by the nurse who said it’s healing really well. Cough still annoying but not painful at least. Have been able to wash my hair & get the wound wet in the bath. Been able to get out of bed and make myself tea & toast J Very, very tired and sleeping at least 18 hours a day! Swallowing back to normal and my voice is 90% there….just can’t shout! Ibuprofen 200mg x 3, paracetemol x2 as-and-when, non-prescription cough syrup.
The wound is healing very well, I’m able to lie on the wound site although a part of the skin has raised into a little lump that you’d normally get with stitches but would imagine that will go down after a few months. I’m able to get up and do light things like put on washing etc. despite my husband’s protests! Still have family staying to look after things, especially my 6-year old. Still sleeping lots, but not as much as before. Not taking as much ibuprofen or paracetemol and gradually trying to take less and less. Cough is practically gone now & GPN pain is not really present; probably a 1 out of 10 on pain scale. Home from hospital 2 weeks now but haven’t had the energy to leave the house as yet. Awaiting confirmation from neurosurgeon that I can begin to wean off Tegretol at the 6-week mark to see if the surgery worked or not. Ibuprofen 200mg x 2, paracetemol as-and-when, Tegretol 800mg.
Much more able to get around the house now, even making dinners. Still very tired and on the whole I’m asleep 14 hours of the day. GPN pain on the otherhand, is back with a vengeance – around 5/6 out of 10. Hoping it’s just a blip and will go away again!! Not allowed to wean off Tegretol until I see my neurosurgeon at the end of May but with the pain the way it is right now, I can’t even consider weaning off it! Very weird headache this week too, a sharp pounding pain that comes and goes on the right side of my head….presume it’s MVD-related since it’s on the right side. Tegretol 800mg and pain relief as-and-when.
Family are gone and I’m well enough to look after things myself now, though still know I need to take it easy. Headache is coming and going, but at least pain relief looks after it. UNLIKE the GPN pain which is at a constant 6/10 and no pain relief ever helps it (never did though!). Still praying it’s a blip…. Sleeping returning to “normal” now, I’m up at 10am and can make it through the day without a nap :) The wound site is not painful anymore but still very itchy, presume that's a healing thing. Tegretol 800mg.
Easter holidays so my husband booked a hotel for a couple of nights for us as well as our 6-year old who I’ve barely seen in 6 weeks! Lovely to finally be out of the house acting like a normal person! GPN is still there but has receded back to a 3/4 out of 10. Much more energy, can’t remember the last time I took pain relief and can see myself back in work soon :) Tegretol 800mg.
So, the jury is still out on whether my MVD worked or not as I currently (week 7) still have some GPN & am also still on Tegretol so it's possible that is still masking the real extend of the pain. As to whether I am glad I did it, YES I AM. For one, I haven't ended up WORSE off than I was to start with and that was a major concern in deciding whether to go through with it or not. Ok, I might still have to live with the GPN pain but as least for my young son's sake I can say hand-on-heart that I tried my best to get rid of it. For now the next step for me is to see my neurosurgeon at the end of May (2015) & decide whether it's worth attempting to come down the Tegretol and see what the pain's like. To be honest, if I could even half my medication then that will be a success. But a success is also regaining my voice and not ending up with any long term problems that are so often talking about in relation to MVD. If you are offered the surgery, DO IT is my advice and try to avoid the horror stories along the way - mine might not have cured the GPN but I am definitely proof that not all bad things happen with this surgery!