Wow – hello everybody!
Photo taken day after transsphenoidal surgery for acromegaly. Now, when is the next beer festival?
It’s about 48 hours since I came round from surgery for ‘transspehenoidal resection of pituitary adeonoma’. That’s a way of saying that I’ve come round from surgery that involved going up my nose to remove a lump that was clinging onto the pituitary gland.
Pituitary Gland?
The pituitary gland is a baked-bean sized gland in normal people, and so when there’s a growth on it, the growth will tend to squash it a bit.
The pituitary gland (remember baked bean here) is in it’s very own little pocket of bone. In the same way that baked beans come it tins, then pitutary comes in its own special container.
Luckily enough this little pocket is accessible through the nostril, where they remove a tiny bit of bone away so they can access the lump and coax it out with surgical instruments.
Obviously it’s very highly specialised neurosurgery, like picking the lock of the back door through the letter box of the front door. It’s not in the realms of a Dremel drill, a drinking straw and a bottle of superglue.
So how am I now – 2 days later?
So after what might be considered ‘brain surgery’ (which isn’t very strictly true), and two days on I am very happy to report that I’m very much alive and kicking!
Anyhow, I’m here sat upright in a chair, fully dressed, with my little laptop fired up. I have no pain, and despite not really needing them today I’d taken a couple of paracetamol (that’s ‘acetaminophen’ to my friends across the pond!).
Red Socks
I was delighted to see my surgeon earlier (KG) when he came to visit me, with him beaming from ear to ear. He brought me the heartwarming message of “The man with the red socks passes on his good wishes” – he meant, of course, the Professor. It was a very welcome message indeed.
Am I ‘cured’?
The surgeon emphasized that we won’t know thechance of ‘remission’ (loosely, ‘cure’) until blood tests are carried out to see the levels of growth hormone in my system (that the lump [tumour] has been pumping out whilst hitching a ride on my pituitary gland).
I feel that I still have high levels of growth hormone in my system as my nose is oily, I have tingling in my hands at times and the eyes have been running. It could be early days, and it doesn’t dampen my optimism of being one day ‘biochemically controlled’ (with medication) and so continue the wonderful privilege and spectrum of life that we all share.
Thanks!
I wish to thank all the medical teams, in Fairfield Hospital (SR), Moorgate Family Practice (SDv), The Christie (MR, Prof, Fiona, Sharon & all), and of course all at Salford Royal (especially KG) where I am at the moment, to my sister for diagnosing me, my family for being there for me, my gorgeous wife for being such a fundamental support and having to put up with me!
My thanks to all that have prayed for me and that are still praying! Keep at it – get those knee-pads out if need be!
Well done you! Glad to hear all went ok and you feeling alright, fingers crossed for good blood results,
take care and take things easy,
Heather
Sounds like you did really well on your surgery!!!!!!!!….have you noticed any new things today? My BP is normal and my sortness of breath is gone…lots of other little things are showing up on the postitive side.
Great news! It sounds like you actually enjoyed the procedure! Thoughts go to you and Mrs T and fingers trebley crossed for a positive remission. All the best, Pam (aka Boongie)
Great to hear your op went well. Is there any way I can email you for advise? I was diagnosed with Acromegaly in 2007 and I had surgery to remove most of my tumor last year. It wasnt successful and my growth hormone levels (24) and IGF-1 levels (850) are still really high. Im only 26 and have never spoke to any one else with the disease and feel really alone. I think its great that you have your own blog, would love to hear from you.
Hi Yolanda,
Where in the world are you being treated?
A great way of getting in touch with other people with the condition is to join up to some forums online. If you look on the right-hand side of this blog there are a list of them. It’s probably best to make up an username that doesn’t give away who you are exactly if you’re at all concerned about your privacy. It’s good to be able to contact people like that, and also you can use ‘private messages’ on these forums generally so that you can communicate directly with the other users. I’m sure you’ve used forums before, so forgive me if I’m over emphasising it!
I’m sorry to hear that your IGF-1 is so high, are they treating you with any medication to try and control it?
Let us know how you get on!
Trys
Thankyou so much for getting back to me!! Dont be sorry, I’ve hardly had much computer experience before and I’ve just recently got internet access so its all new to me!! I live in Perth, Australia (one of the most isolated cities in the world) and there isnt the same treatment available here unfortunately. I’m not concerned about privavcy at all, I just have never spoke to anyone else with Acromegaly before. It isn’t a very common disease here and not many people know what it is or what I’m going through. I’ve just joined an Acromegaly support group yesterday through facebook which seems to be great. Im on cabergoline to keep my prolactine levels low and I have just been taken off Sandostatin (120) after two years as it hasn’t worked at all. I had the same surgery as you in March 09. They couldnt get all the tumor because some of it was in a dangerous spot. They thought that Sandostatin would lower my GH and IGF-1 levels after surgery but it has all failed to work. Apparently there is a treatment which is better than sandostatin but it’s not available in Australia yet. I would have to go to England or America and that’s just out of the question as it’s too expensive!! With my GH levels being so high I’m worried that my body will change for the worse really soon. Do you know if my levels are normal for someone with acromegaly? I’m really scared and feel a bit stuck for options. You seem very positive, it’s great to read your blog. Hope to hear from you soon.
Hiya Yolanda,
Hey, it’s no problem at all! I’m glad you’ve found an online group that can help you. It certainly can help to discuss these things with others who are going on similar journeys. We can all help each other when we slip.
My first IGF-1 reading was just shown as “greater than 999 ug/L”, and then a bit later, I got a reading of 1244 μg/L. I’d just turned 40 when diagnosed so my reading should have been less than 492 (at least, or nearer 300). That might put your value into perspective too. Not sure if it helps!
The IGF-1 readings are “age and gender” related. Different centres have slightly different ranges. From my book (Basic & Clinical Endocrinology, Greenspan), the ranges for females:
Insulin-like growth factor-1 (IGF-1):
16-24 years (female): 182-780 μg/L
25-39 years (female): 114-492 μg/L
The trouble is, in this book of mine, the IGF-1 table for men and women have the same values, which isn’t correct but that’s all I can go off at the moment! Generally, women’s IGF-1 values are lower than men’s.
So your value, of 850 (I’m assuming the units at μg/L) is just a little above the range if you were between 16-24 years of age. Bear in mind of course, that the IGF-1 goes down in the ordinary population.
I think the drug you are referring to is Pegvisamont Somavert. In the US the doctors there can prescribe it. In the UK it is not currently licensed/approved for routine prescription, but can only after some treatment options are ruled out.
I found this on the Australian tga.gov.au:
PEGVISOMANT 10mg, 15mg and 20mg
Somavert
Powder for Injection
Pfizer Australia Pty Ltd
“New chemical entity – The treatment of acromegaly in patients who have had inadequate response to surgery and/or radiation and/or other medical therapies or for whom these therapies are not appropriate. The treatment goal is to normalise IGF-1 levels.”
http://www.tga.gov.au/docs/html/adec/adec0242.htm
But there again, I found on the Australian Pituitary Foundation site:
ThePituitaryGland/Treatments/Medication.aspx
“This is not available in Australia at this point.”
(Hmm.. that’s no good is it – I wonder what they can do to hurry along the approval process?)
You may wish to contact the Endocrine Society of Australia to ask them if they can provide a list of Endocrinologists in your area. I did something similar with the UK society, and they gave me a list of around six in my area. You might be able to ask if Pegvisomant is available to you if you are part of a research study.
Have they tried combining Cabergoline with the Sandostatin LAR with you? It has been shown to be beneficial to people who have Prolactin secretion with the Growth Hormone, especially people who are not very responsive to just Sandostatin.
Don’t give up hope, there is a drug in the pipeline which acts on more of the receptors that Sandostatin, which is very promising indeed!
Keep us posted!
Trys
Wow thankyou so much for all you research you did for me!! Your advice has been very helpful! I have been on Cabergoline and Sandostatin Lar injections for the past 2 and a half years. It hasn’t lowered my GH and IGF-1 at all, but it has lowered my high levels of prolactin. My endo was hoping after the surgery last year that Cabergoline and Sandostatin would be more effective on the small part of the tumor that was left. It’s been almost 12 months and no change, so I’m not sure what’s next. I’m a little scared that being taken of Sando now will increase my GH and IGF-1 even more! The Endocrinologist’s in Australia are having a board meeting in April and my case will be brought up. I think it is Somervert that’ could help me but isn’t available here. It’s all a waiting game now! How are you feeling after the surgery? I got Diabetes Insipidus and Hypoadrenalism after my surgery so I couldn’t leave hospital for a month!!
HI,
Just had a surgery of the same case last May 20,2011. Doctor couldnt removed all my tumor bcos i am endangered of leaking fluids. NOw its been two weeks and i think there is little changes,my face features didnt change and i still have carpal tunnel syndrome. My doctor told me to come back to him after a month to checked my growth hormone levels.
This Acromegaly is not so common here in Philippines yet,so aside from surgery the meds available here is only Bromocriptine,which i took for 3 months before i had the surgery,it did make me feel ok for a while,but for some reason my tumor got bigger and i have gain more weight even if i dont eat that much. so thats why i decided to have the surgery, had it for charity,meaning the doctors are free neuro surgeoun and the anesthesiologist, i guess my neuro isnt that exprerienced yet,but i have survived the surgery,its just that it wasnt successful, he did explain to me not taking all the tumors and might come back in 5 yrs,it wont come back bcos it is still there..he told me to contact someone in the US and try to ask if they can send me Octreotide,but my cousin who is a nurse says its difficult and its all abt insurance and so expensive and if they found out shes not using it she will sued fraud and go to jail..i feel so sad and feel like losing hope..I got 3 kids and raising them alone, i so much wanted to be well so i can find a good job abroad..
Im glad i have found this site and had pour out what i feel,thinking i have some people here who can understand how i feel…I am not taking meds right now,doctor havent given me yet..i shall visit in 2 weeks..
I also have high bp and still havin headache and yeah a loose stool too..and woke up every morning looking at my disfigured face..