Transsphenoidal Surgery booked
Excellent news!
Lots of things have been happening lately, and I’ve only just got around to writing about it.
The big thing is that I’ve got a date of my transsphenoidal surgery that will hopefully improve my acromegaly, and possibly even “cure” me.
(I use the word “cure” in quotes, as the real term is remission.)
The surgery date I have is Tuesday 9th February 2009.
My wife and I met the surgeon. We were quite nervous to meet him, but he very soon put us at ease. He explained the procedure to us in detail and answered all our questions. He took an interest in how I was originally diagnosed and the symptoms I had at that time, and also took time to discuss the treatment that I’d been receiving up to this point. He’s a very nice chap, and I’m happy to put my life in his (steady) hands. Oh, and yes, they are very steady (my wife made a special point of looking!).
Hi Trystan,
What fantastic news. I’m so hopefull for you and your family. Like anything in life, it will require adjustment after the surgery but things will only improve.
I’m sending you all good thoughts and wishes your way and will be thinking of you on this very special day.
Take a picture of you right before surgery and a couple of days later you will NOT believe the difference. Even put a ball cap on and try it on a month or so after the surgery and you will have to adjust it as it will be too big.
Best of luck,
Julie (Canada)
Julie,
Thanks for your comment. It’s hard for me to imagine what adjustments I’ll need to do after surgery. I know I won’t be able to bend down and strain myself too much, so over this next week I’m going to do a few jobs around the house which hopefully will help.
Hey – now that’s a great idea – yes, I’ll take a before/after shot to see the difference!
Thanks!
Trys
Hi Trys,
Glad to see you are back as I had been missing your blogs.
Delighted you have a date for surgery and wishing you all the best. You will be up and around again before you know it.
Petal
Petal,
Thanks for your comment! I’ve been missing writing my blog but I didn’t want to bore any readers with the drivel of month-after-month injections. I did have a few difficulties now and again (getting syringes, and needles and things at times) and had a few funny times too with it too (particularly with the nurse, with me pretending I hadn’t felt the injection…).
Trys
Hi Trys
Good luck Trys, wishing you every luck with your surgery and a successful outcome.
From comparing messages on other sites, I wonder if you won’t feel the complete exhaustion as others have experienced, maybe this is due to having Sandostatin injections prior to surgery. I was relieved not to experience that after surgery, as I’d felt completely wiped out for a short time when I first started my injections.
Hopefully you’ll recover from the surgery really quickly, so incredible that you’d never know to look at someone that they’d had such an invasive procedure. Does have it down side though!!
After 5 months, my only disappointment is that there hasn’t been an extra reduction in the soft tissue swelling in my hands and feet. I did have some slight reduction after my injections but nothing much since. Slight disappointment but apparently to be expected and they say the reduction could still happen several months after surgery. Maybe I just expected too much and thought the old ‘me’ would reappear!
Lots of luck Trys
Shelley
x
Take it easy and lots of luck Trys – when are you going in?
Shelley,
Thanks for your comment! You’re doing really well, and I’m so glad you went for the surgery in the end. I’m sure you found it a relief to get the surgery date yourself too.
I think the difficulty that we face with this condition is that it does show itself physically so we can end up being a bit too concious of how we end up looking with it (but of course, it’s impossible not to!). It’s absolutely brilliant that with surgery and medical therapy they can halt the progression of this illness, and that it gives us the wonderful opportunity to regain a largely normal life expectancy. You’re doing great by the sound of things.
Trys
(The op is on Tuesday 9th February, I don’t have the time of the actual op though)
Trys!
This is very exciting- you will feel so much better after the surgery, I’m sure of it!
I remember having a lot of anxiety before the surgery, but afterward I was shocked at how easy it was and how quickly my body recovered. We are so lucky to have such advanced medical techniques available to us.
I’ll be thinking of you and sending you extra good wishes on your surgery day!
-Ellen
Hiya Ellen,
Good to hear from you again! Yes, it’s brilliant isn’t it. It’s funny, but at this stage I’m not nervous about it at all, but really looking forward to it.
It’s great to hear how well you got through your operation, it’s really encouraging.
I agree with you about your comment about the advances in medical techniques, I find it quite outstanding. Over the months I’ve read a lot of articles on acromegaly, GH, IGF-1 and I have every respect for the researchers, and indeed the volunteers that have given all this to us.
Thanks Ellen,
Trys
Trys,
It’s great your moving forward with the surgery, you will notice changes immediately following the surgery. For example, I had real bad carpal tunnel that vanished–among other things. Within two weeks the puffyness in my face subsided and has continued to subside while in therapy. My feet shrank two sizes and a hat that did not fit now fits again.
Recovery will be uncomfortable for a few weeks, mostly because you won’t be able to breathe–but the doc’s can give you things to lift your spirits and make you not care. Be sure to come home with some happy pills.
I was anxious several days before the surgery, but the team prepared me and I was calm and positive going into it. I was up walking around the hospital 8 hours after the operation and was home in 4 days. I did not have packing in my nostril.
I’ve put the date in my calendar and will be thinking about you–I wish you well, you’ll be great!
Robert,
Thanks for your comment! It’s interesting your comment about carpal tunnel syndrome, because the occasional slight tingling in my hands was one of the first things I noticed coming back again after stopping the sandostatin injections. It might be useful for us to know what comes and goes first (as symptoms) as early indicators of GH/IGF-1 levels increasing again.
I just bought some new boots two weeks ago, so they probably won’t fit after the operation then!! Oh well. I quite look forward to that!
I’m not sure about happy pills generally, but there again I don’t know how I’ll be after the op. I’ve got a great wife who is highly entertaining even at times when she doesn’t mean to be, so hopefully she can be my happy pill and keep my spirits up. My main concern about happy pills is that in some way I could get addicted to them, or otherwise rely on them too much perhaps. Having written all that, I might be trying to convince the doctors for a packet of them in just over a week’s time!!!
It’s interesting that you didn’t have packing up your nose – it must have made things a lot more comfortable for you. I’ve read the accounts of nasal packing after such an operation, and it does indeed seem to be preferable to not have packing (also hopefully I won’t look quite as silly either).
Trys
Trys,
I had a macro tumor and after the surgery the carpal was gone the day after the surgery. Sweating at night–gone. Face puffyness improved greatly in 2 weeks and has improved steadily with drug therapy (6 months). Really remarkable.
I’m sorry about the happy pill comment and making light of an important issue. Let me say that the only anxiety I had about surgery was claustrophobia. When ever I can’t breath through my nose I get it (I had major ear infections with acromegaly that caused the inability to breathe). I communicated that to my doctors and they prescribed a regimen for me that included relief for that issue.
One in four do not need packing, according to the program I am involved with. I was fortunate and while in the hospital monitored on a consistent basis if I was leaking. Keep in mind you will not be able to blow your nose for about a month even though you will want to.
My suggestion is immediately after surgery, be active. Get up, and move–walk. It helped me with breathing. Laying around is not good–and they want you to move other wise you have to worry about blood clots. Walk with your wife the next day–force yourself. You’ll be renewed.
By the way, your going to need new boots…
You’ll be great!
My understanding is that 1 in 4 do not need to be packed. I did not bleed that much and the surgeon felt that it was not necessary in my case. I was monitored almost hourly
Robert,
Thanks for that! Your comment about carpal tunnel syndrome – ironically enough I woke up this morning with a pair of numb/tingling hands (it could be worse – I could have woken up with fifty pairs of hands if I was a centipede… ho ho ho). Interesting about the 1 in 4 not requiring packing, I didn’t know that, so it’s useful to know.
🙂
Wow – I didn’t realise that I could walk about straight after the op – I somehow thought that I’d have to take it very easy for quite a while to prevent a CSF leak (by bending down etc). I suppose though, in walking your head would be quite upright!
I suppose I should get some use out of those new boots before they get too big for me!!
Happy days!
Trys
Trys,
Also, my peripheral vision immediately improved. My tumor was pressing up on the optic nerve, my vision test before surgery and after was major.
The surgery was magnificent for me.
All the best Trys!!!
-Robert
Trys
All the best for the surgery this week.
If it is anything like mine, the surgery will be like a walk in the park. Take it easy for a few weeks when you get out.
It’s less than a year since I went through the same, so please feel free to email if you get curious. I didn’t get packing up my nose either,which I was quite glad about.
BTW one of the first things that happened to me was my bum shrank!
I’m off for my second post-op lanreotide tomorrow. The other way round from you – but hopefully we’ll both get the same end result!
John D
Hi Trys,
May sound late, youve probably out of theatre now but good luck and take care.
Im due to be told of my surgery date next week so know exactly what youve been through.
Be sure to post the results, ive enjoyed reading your posts over the last 6 months. Desperate to know the outcome, Although i do apperciate that this is just the start of the journey.
Good luck
Matt.
Hi Trys!
I’m thinking of you and your family today (and I was yesterday too, I figured I’d start early with the time zone change)!
Best wishes for your surgery!
-Ellen
Hi, Just reading your blog entry and I hope the surgery went well. I had Transsphenoidal Surgery in 2007 and my journey continues. You can have a read of my journey if it helps at: http://www.tollarttherapy.com
All the best for a speedy recovery 🙂
This is all so helpful to read. So glad so many of you have positive experiences and are doing so well. My dad has his operation on 12.10.15, all being well. He has hypertension though so they have to check that his heart is strong enough. Caroline x
Hi Caroline,
I saw your other comment that your Dad is having is op in Sheffield. I found this brilliant article on the pioneering work they are doing there http://www.thestar.co.uk/features/brain-surgery-amazing-new-technique-revealed-in-sheffield-watch-video-1-4635034 Hope you’re not sqeemish, but the amazing thing is how the tumour in that operation just comes out little bursting a little spot.
Trys