Hi Jilsy,

I was diagnosed in 2014 and to be honest I'm still learning new things about acromegaly. The first thing I did when I was diagnosed was to search the Internet for information but it was reading this forum where I learned the most - from people who had first hand experience.

Do you know how big your tumor is? That can be an indication on the success of surgery. I had surgery in June 2014, some side effects of acromegaly stopped immediately, some took longer. So far I have not needed further treatment or medication but I'm aware I'm very lucky to be in this position.

Hi Chili, thanks for your reply, it's really helpful. The stuff on the internet is helpful, but I think it's good to talk to people who have experience with it.
My tumour was 2.5 cm when I had MRI beginning of March. We're you on any meds before your surgery? Obviously I get that everyone's different and I might still need meds and further treatment after. Thanks

Hello Jilsy -

After my first visit to my endocrinologist in late 2013 and the subsequent tests to confirm that I had acromegaly I was referred to the local pituitary center team to review my suitability for transsphenoidal surgery. They determined the tumor was a GH and prolactin hormone-secreting tumor (9.5 mm x 3mm in size) and based on old photographs I had it for over 15 years. I had surgery in 2014 and it went very well (approximately 5 hours in surgery and in hospital for 3 days). I had a bit of a headache for the first few days, my nose was sore for about 10 days and I lost my sense of taste for a couple weeks. Over the next 6 weeks I followed up with visits with my ENT surgeon, Neurosurgeon and Eye Clinic. With a bit of rest, everything went great and I returned to work. My Endo requested regular blood work and my IGF1 levels dropped regularly over the next six months. I was on no medication. I noticed a change in my ring and shoe sizes, and I lost a bit of weight.

In 2015, I noticed a major drop in my energy levels - I wanted to sleep all the time and for the first time in my life I was depressed. At the same time, my Endo advised that my blood work indicated my IGF1 levels were rising.

The neurosurgeon explained that because of the location of the tumor, not all of the tumor could be safely removed during surgery. He said that some of these residual tumor cells could continue to produce GH -- even a few cells that would fit on the head of a pin could cause a rise in GH !! As a result, they recommended that I start medication (Somaluline injections, and cabergoline). A few months later I underwent SRT (radiotherapy). The intention is to continue these medications for a period of time until the effect of radiotherapy destroys the remaining tumor cells.

Acro is not the same for everyone - you are unique and I trust your medical team (GP, Endo, Neuro, Cardio) can tailor your care to your needs. It will touch all aspects of your life - medically and emotionally. Sometimes it can be quite a rollercoaster ride.

The folks in this forum a GREAT !! I have learned so much from their wonderful advice and insights. Please be assured that you are not alone in your journey - just reach out.

Jilsy....Zippy is spot on. I was 44 in 2000 when I was diagnosed with a 2.5 cm x 2.5 cm tumor on the Pituitary. Like you, they figured I had had the tumor for at least a decade, maybe two, before the Beast took over. I was always in good health, athletic, rebounded quickly, etc., etc. About the time I reached 40, I noticed I didn't rebound as quickly from over doing it. Injuries started occurring that took longer to heal. Broke an elbow throwing a softball to second base that ended my competitive softball playing. A knee injury put an end to my senior pole vaulting. Then the chest pains started and the high BP.....I thought it was just age. Fatigue, depression, memory issues......in 4 years they started becoming problems.

In 2000 I was finally diagnosed. Like you, I had never heard of it. A year later I had my first surgery. They burned out the bone drill trying to reach the pit area.. A week later I had the second attempt. The tumor was pressing on the carotid artery and had wrapped around the optic nerve....they got as much as they safely could. A year later we tried the Gamma Knife surgery. I have been on injections since being diagnosed. The first 9 years it was 6 shots daily. In 2009 they switched me over to the monthly injection. Pre surgery my IGF-1 levels were approximately 1400. Post surgery my IGF-1 levels were in 700 -800 level. The lowest my levels got on the daily shots was in the 500 - 600 range. Once I started the monthly injections my levels came down. Now they're holding steady in the 120-130 range which is normal for my age. I will be on the monthly injection the rest of my life. Along with all the other supplements and replacement meds....

In 2009 I had to retire from a 30+ career in Architecture. Fatigue and pain have been constants issues. Coordination, short term memory, cognitive skills.........all have become issues. Since my retirement, I have both hips replaced, I've had an Occipital Lobe Craniotomy to remove a brain tumor......I've had 2 TIAs (mini strokes) all of which my team of doctors feel are a direct result of the Acro.

Zippy is right, you need a complete team of medical specialist to keep the Beast under control. There is no area of your being that this condition can not effect. My original Endo told me the night my test results came back that this was a "life altering condition"....she didn't understate it.

The key word is "altering"....it's not life ending. Life goes on. We learn to adapt, we learn to be proactive and to listen to what our body's are telling us. We adjust to what we are able to do. When we get tired or fatigued we rest. We keep in mind our limitations. We keep on battling.

I'm on full disability now as of 2014. But like Zippy said....each case is different and we take each day as it comes.

Hi Zippy and lifespallette. Thank you for your replies, they're both really helpful. I'm still getting used to it all, but am starting to realise like you said that it pretty much affects everything.
I also took old photos going back 10 years and the endo was pretty sure I had it then but I didn't take any older so she couldn't say about before then. The meds I'm on are helping but I do struggle with being tired most of the time, specially since I have a physical job!
I'm going to see the neurosurgeon beginning of May so hopefully will know more then. But it has helped massively since I found this site and others who are going through similar experiences

Hi Jilsy,

I understand that every story is different. Maybe you can pick some thoughts from mine to help you.

I got diagnosed in October 2015, apparently after 10 years. By end of August 2015 I was not able to function anymore (joint pains, difficulty walking, numb arms, exhausted, sleep apnoea). The tumour was surgically removed end of November. With the pain killers post ops, it was the first time in years I was pain free - a wonderful feeling. I noticed quite fast brain fluid was leaking. Despite the tests during the first surgery and an experienced surgeon team. I think it is because I had put pressure as I needed to vomit within the 12 hours following surgery. Within 48 hours I went back into surgery for a packing of the gland. A drain was put in my spine to remove the brain fluid. Due to the underpressure in the brain I had was in a migraine like state for more than a week. I reacted quite heavily apparently. It was the most awful week of my life, couldn't stand sound, light, smell, was unable to eat-drink-go to big toilet... Eventually got better after colon rinsing, bottled water and tapa like food (fat and full of energy - NO bread which I typically got in the hospital). Once home, it took 2-3 weeks before I gained my full strength. 6 weeks after surgery the IGF-1 values dropped back to normal 216, coming from 643. By the end of January I was full of energy and ready to go back to work. Since March - and guess accelerated by the nature of my work (stress and travel) - new and past symptoms pop up: exhaustion and sleep deprivation, emotional and lots of crying for nothing, short term memory loss, disorientation even in places I know from my childhood, difficulties in connecting the dots and identifying solutions to complex business problems at work (a strength in the past), series of blatter infections probably due to exhaustion, capillary syndrome in hands, increased joint pains. I got my blood levels tested as per schedule last week and the IGF-1 levels are back up to 311, above normal levels.
I am getting scared now. Life will never be as it was before... how will this impact my ability to work at the level required for my role... how can I change my life to better cope with the disease...

I try to look at the positive side: I do not have a heart disease, I did not develop diabetics, I did NOT have a cancerous tumour, I am not disfigured to a point it is noticeable for people who don't know me from the past. I also am much closer to my body and mind. I start to recognize better when things are wrong or going the wrong way.

In order to cope with the bad news of having acromegaly I did some soul searching: did I live my life to the fullest? What do I enjoy in life and did I do enough of that? The answer was yes. And I will have to continue to focus on this.

I now need to work on "managing my own life actively". Yes, I am mentally strong enough to diet and get slimmer again (lose the acromegaly kilo's). Yes, I will work smarter and bring down the hours in my workweek (with the coaching of my supervisors). And yes, I need to talk about it and connect with people in the same situation.

An interesting article I found: http://www.news-medical.net/news/20110831/New-guidelines-for-the-treatment-of-acromegaly-a-serious-growth-hormone-disorder.aspx

Next week I meet with the neurosurgeons and endocrinology team to discuss the results and treatment.

Hi Jilsy

I've also just joined. Going through formal diagnosis but meds on order and surgery hopefully in the autumn.
Never realised I has it at all. Presented with what I thought was a persistent chest infection at doctors in late April. Keeping it short, turned out I was actually slowly drowning myself due to fluid leakage from what was becoming a very damaged heart, was going downhill quickly. 4 days and 6 KG later I was mostly dried out. Appears very high blood pressure, 180 over 140 and GH had been slowly damaging my heart and it fell of a functional cliff in late April. Left ventricle badly enlarged and doesn't pump properly.
the consultant on call on the acute ward the night I was in hospital happened to be a an endocrinologist, who said he knew as soon as he saw me, facial changes. Syndrome face is the main phycology bit I have struggled with.
So going through the normal battery of tests, OGTT yesterday MRI and IGF and others bit done already. Still need formal MRI report but appears there is something lurking.
Feel much better for the heart issues, but can't really tackle gym or major exercise yet, should slowly repair once we get the GH and blood pressure down.
Due to start the GH related injections in next few weeks, assuming diagnosis is entirely as expected.
Being referred to neurosurgery and expect surgery probably in autumn, winter. May need heart in better condition for general anaesthesia.
The interesting bit, while talking to the endocrinologist that night, I realised that the pituitary surgery my mum had 8 years ago was also likely to be acromegaly. She had been quite guarded about background of the surgery at the time. So looks like we have a familial inheritance going on.
Typically acromegaly is sporadic but looks like we have it genetically inherited. My original degree is as a geneticist!
Having seen how well she has managed, on no continuing medication 8 years down the line, it has made this appears largely unscary!

While this condition is a pain in the arse and the heart issue is quite significant, I am encouraged that by and large many of the other options are not the cause. Having an otherwise clear chest X-ray as a 48 year old is rather encouraging, as an ex smoker.

So, good news is no heart attacks and very unlikely to be a scary malignant tumour. Hopefully nearly all of this will be manageable via surgery and meds. The alternatives are worse!

keeping positive!

John

Hi John, thanks for your reply. Really interesting reading about your journey to diagnoses. Do you know anymore yet? I had my surgery just over 6 weeks ago now, recovery is going pretty slowly but think I'm getting there gradually! Helpful to know your mum hasn't had to have any more treatment since her surgery, got my fingers crossed for that but will have to wait and see! Going back in September...

I am trying to learn as much as I can about acromegaly. I know that others commenting are talking about humans, but I have had two of my cats diagnosed, and started a group for so many others with the same diagnosis, and often treatments are the same. I had hoped to learn about some of the medications that many humans are given in the care for their tumor / treatment.

Hi Jilsy a bit more as requested. The IGF was a 707, now also know as suspected that the glucose challenge showed lack of modulation of GH and my pet tumour is 12mm in size. Started Octreotide 11 days ago, once a month injection of slow release depo format. Injection could not have been easier or unnoticeable at time or since. First couple of days, all good, next 4 days minor GI issues, looseness etc , that has now cleared and feel entirely normal. The octreotide and a final small increase in B -blocker appear to have completely corrected my BP, now daily normal occasionally low. Likely be on this now until late autumn when hopefully my heart will be considered good enough to operate on. I though feel absolutely fine and better than I have felt in ages. So all good, just need to get rid of my pet tumour! Hopefully see my neurosurgeon soon and scope out experience etc and get that chapter progressed. Only thing I actually find challenging is the concept of syndrome face, that I don't like!

cheers

John