The jury is still out. I’ve been back to Nottingham to receive the verdict on my head. The day went pretty much as expected and depending on how you look at it, the news overall was good.
Monday was a long and tiring day, not helped by the biting wind and frequent showers of sleet in Nottingham. I’d an early start to catch the morning flight and arrived into the city centre in time for a late breakfast. Once revived, I headed to the local library to avail of the internet facilities and the warmth. Shopping is not an attractive option when your mind is otherwise focussed. I made my way to the hospital with plenty of time to spare and the surgeon saw me exactly on time for my appointment. We were off to a good start.
Having looked at my recent CT scan on computer, the doc was pleased to find that there hasn’t been any significant deterioration since the last scan. He examined my head endoscopically and using local anaesthetic, did some ‘house’ work on the previous operation site near the base of my brain. Using an endoscopic camera, he was able to give me a guided tour of the inside of my head by projecting the images onto a screen. It was amazing to finally get to see the small area of bone that has caused so much trouble in recent months.
In layman’s terms, the surface of this inflamed bone looked like white paint which has blistered in the sunshine while the rest of my internal anatomy, was pink and glistening. At this point, the surgeon informed me that the exposed bone will require further intricate surgery. He proposes to line the bone with a mucosal ‘flap’ graft which will provide the blood supply needed to promote healing. My airway will be internally splinted for about 10 days to prevent adhesions. Last summer’s radical surgery in fact included a similar graft repair to another area of exposed bone and the surgeon showed me how well this area has now healed. This was exactly the sort of the reassurance I needed. I left the hospital armed with a bevy of syringes and plastic tubes together with strict instructions to flush out my head daily using a sterile solution. Having navigated through airport security without being arrested for the strange contents of my bag, I arrived home totally exhausted. I’m still exhausted two days later.
I now know exactly what needs to be done and how it will be done. While this is good news, I’m still struggling with the reality of having to face going back to Nottingham for further surgery. The operation will be a minor one compared to previous surgeries but even so, I still find myself deliberating over it. I’ve been instructed to ring the surgeon within the next few days to discuss a date for surgery.
Biopsy Report 
I bet you are shattered Steph. It’s a lot to think about as well.
Wishing you all the best and I hope you get a date soon and get it all over with. xx
Magnumlady – Wow! You’re quick off the mark. I’d barely posted the piece when your comment appeared.
I think the tiredness is partially due to a change in my medication since Monday. I kept yesterday (Tues) free to recover from the long day in Notts and managed to sleep until midday!
I’ve no problem with the surgery that’s been proposed but the idea of returning to Nottingham for it, is turning me cold. I know it’s the best place to be but still part of me doesn’t want to go back. I’m sure I’ll gradually come to terms with the idea but right now, I don’t wanna know! 🙂
I know how you feel – we’re having the same struggles with Rory’s bladder surgery happening in Crumlin. It’s the kind of news you need to live with for a while, it’s very hard to adjust when you are exhausted. Sounds like you don’t have much choice though, which makes it easier and harder all at once.
It’s like those mountains in Connemara -you get to what you think is the top only to find another couple of hundred feet stretching up before you into the great blue yonder. That last climb is usually very steep and always accompanied by diagonal rain (even on the sunniest of days!) but the view from the top is breathtaking. So picture yourself tucking into your sandwiches and a steaming flask of tea on that peak, up there, as you survey the wonders of the world below – that should help you up your next hill! (well that and a sensible pair of shoes of course!)
Sending you strength
xxxannb
It’s good to hear that the area that was dealt with last time is doing so well. I know it must be difficult to face it all again but you know that Nottingham is the best place for the surgery and hopefully it will deal with the problem and I am sure that you will be much better after it. The problem is do you have the surgery sooner or later. My choice would be sooner, then you can enjoy the better weather knowing that it has been done.
I just can’t believe you can type the words ‘flushing out my head’ as if we all do it. The composure you manage when describing all this is amazing. I know you have no choice but to continue and co-operate I think I would be stamping my feet a little by now with sheer frustration. I don’t know why but I can never understand why its ok to fly with all this going on in your head. I think they should fly to you! It would be so much nicer if the only place they could perform the next procedure would be sunny Spain! Jokes aside I know the news is good but truly the idea of facing it all again must be daunting. I continue to wish you well and hope that at some point in the not too distant future you will be ‘fixed’. Best Wishes.
Maybe they’ll schedule surgery in New Zealand one day, then we can give you lots of TLC over here.
Thanks for keeping us posted. Snuggle up and rest well after that grueling trip. Lots of love x
Delighted to hear that the consultant in Notts has a solution. Understand how exhausting all the travelling is but to get to endgame would be great. Continuing to wish you all the best.
Nottingham works! Putting it off prolongs the pain and discomfort that you have now. Go Girl! Go! Then you will be able to really enjoy the summer.
Glad to hear you’ve got some answers and what sounds like a really positive plan. It’d be lovely to meet you if you come back via L’pool. Hope you’re feeling rested and recovered soon, love and hugs BG Xx
Okay, folks!
Thanks for all your supportive messages. They’ve really helped me to face up to reality.
I’ve been busy today putting all the arrangements in place to have the surgery done in 2 week’s time. I’m booked to travel over to Notts on Thurs 25th, surgery the following day and all being well, home again on the Saturday evening. I await final confirmation of this by the surgeon tomorrow.
Unfortunately, the insurance company is again insisting on putting me through the ‘prior approval’ process for treatment outside Ireland. This ridiculous system may yet delay my surgery and if it does, I shall be extremely annoyed. It’s so wrong to put patients through unnecessary stress over ticking the right boxes. I now have an arrangement to see my Dublin surgeon next Tuesday, purely to fast-track the paperwork in the hope of getting ‘approval’ before the op. There is no guarantee of cover if you choose to proceed without prior approval for funding.
I did get one nice surprise today. The surgeon has offered to do the op in a small, private hospital and not in the large NHS one. Part of my hang-up about returning to Notts, was having to face going back to a hospital that does not hold good memories. As the surgery is fairly minor, I do not need to be in a specialist unit for it. It’ll make a very nice change.
Annb – I like that concept! I’m not much good at climbing hills these days so I’m hoping it’ll be okay to visualise eating my sandwiches on one of those beautiful white beaches in Connemara? 😉
MSG – Lovely to hear from you. You’re right, it was very reassuring to see how well-healed (or maybe even ‘well-heeled’) the rest of my head is. The choice of surgeon is the most important decision for me and I’ll go anywhere I have to, to avail of his surgical skills. I have chosen the soonest date available because the longer I wait, the more difficult it gets.
achelois – Flushing out my head has been part of my daily routine since last summer so it’s quite normal to me. Post-op, I had to do it 3 times a day for many months! The only difference since Monday, is that I now use syringes and tubing to reach the inner depths of my head, instead of the more usual method of a squeezy bottle.
As regards flying, I agree, cabin pressure used to be a big problem for me but now that the anatomy of my head is ‘open-plan’, I no longer suffer pressure problems.
Jeanie – As it happens, the world leader in this sort of surgery is based in Adelaide (Oz) so if I ever need to visit him, I’ll schedule a stop-over in NZ to recuperate 😉 But all going well, I hope I’ll not have need for any more visits to world experts and then I’ll be able to come and visit you (for a change) instead!
Lily – I know, I feel very lucky to have been offered a solution. Long-term medication is also involved but who cares, as long as the need for surgery ceases.
Grannymar – I found out today that the next date on offer, is 5 weeks away which would only prolong the agony so I’ve opted for 2 weeks time to get it over and done with. It still has to be confirmed though.
In light of our discussion yesterday, I bit the bullet and booked a wheelchair for the journey home because of the long distance walking at Dublin airport. Well, actually, for obvious reasons, the wheelchair had to be booked for both directions of travel. I may have to be tied into it for the outward journey 😉
BG – I’d love to meet you too but I’m afraid on this occasion I won’t be travelling through Liverpool. I’ve had a much better day today, thanks.
Hi Steph ~ I can imagine that it is ‘good’ (i.e., reassuring) to have a picture inside your head, of the inside of your head..(?) er, well, you know what I mean! It takes the ‘mystery'(which can be scary) away – and your description of the infected area was fascinating!
Shame about the tussle with the insurance people, but it will all come right in the end, and the smaller more private clinic sounds an excellent idea. Your st..(oops! nearly typed sturgeon) – surgeon(!) clearly understands the psychological impact the ‘bug’ tests and preliminary isolation etc.. associated with the larger hospitals has upon you, so good for him and good for you Steph and it will all be over before the snow melts!
You’ll be a new woman this summer Steph – just wait and see!
Good luck. Hugs. xxx
Geri – Thanks! You’re right, I’ve found it very reassuring to be able to ‘see’ what needs to be done.
I never got round to discussing with the surgeon where the op would take place so it was a nice lift to hear that he’s happy to do the surgery in a small hospital. The NHS has already been handsomely paid by my insurance company for previous stays so this time round, I’m happy to avail of more comfortable surroundings for which I’m fully insured. That is… if my application for ‘prior approval’ is processed in time! Grrr!
New woman? It’s not a face lift I’m having, you know though I could sure use one! 😉
Glad you took my advice about the wheelchair. If you don’t want to use it on the way out… put hubby in it! 😆
About the face lift – NO WAY! After all this work you don’t want to be looking through your belly button! 🙄
Grannymar – Good one!
Dear Steph,
Sorry I am so late in telling you that I am proud of the way you are handling this.
You are so brave and deserve to get completely well. It’s my hope and prayer that the next time you go to Notts you come home to good health and a bright and happy future..
Love from Cousin Nancy
Another white rabbit signing in a little late but I’m very glad that you’ve got the stamina for one more op. If it worked on the other problem, here’s hoping it’s the final solution to this damn thing. I agree with the ‘flushing’ business. Sounds awful you poor thing. Then I guess you need to do what has to be done. Good luck Steph, I think of you often.
Nancy – You can be as late as you like as long as you keep telling me such nice things 😉
Baino – A woman’s gotta do what a woman’s gotta do! 😀
I’m due a break, that’s for sure.