Uhhhh excuse my disgusting spelling, where is the edit button.sorry

I totally agree that Acromegaly shouldn't be sugar coated, I do recognise that there are people who suffer badly with the condition as we see on here. The people that we don't often see on here are people that are doing very well after diagnosis of acromegaly. Not being sugar coated is one thing, being factually incorrect is another.

As for the success of treatment "Greenspan's Basic & Clinical Endocrinology" 2007 ISBN 13:978-007-144011-0 - "In those with small or moderate sized tumors (< 2cm), success is achieved in more than 80%".

Here are some other "cure" (remission) rates from other studies, for transsphenoidal surgery microadenomas:

72% (Fahlbusch et al 1992)
81% (Fahlbusch et al 1992)
61% (Sheaves et al 1996)
75% (Abosch et al 1998)
90% (Ahmed at al 1999)
87% (Laws et al 2000)

This is encouraging news!

There are positive stories and its good but again I will say it You need to open your eyes to whats really going on Trys dont you think.You are acting as if you are an expert sorry but this is a support group of hope of sharing whats right for one may not work for anotherThis condition does not work on FACTS.Flouncy was not doing a medical thing of facts which also some of what you say I could so disagree with.You are not looking at the overall Picture.It was a Vid of her of what was from her heart of how she feels.A question to ask yourself if you are lucky what you joined a support group for Why do people join support groups and also are some of the cases in your facts really Ok.

What is it your trying to achieve here Trys, we are all Acro people on this support group,some have more symptoms than others, we don't need facts rammed at us, we are all trying in our own way to deal with this illness the best way we know how, we have all read various material relating to Acro,so we are aware of the statistics.
Flouncy's video is a way to increase peoples awareness of this condition and I personally don't see any problem there.
I think maybe a chill pill could be the go.

http://uk.youtube.com/watch?v=IRfq8pRhfW4
just a quick sneak peek at the vid the website has asked to see with thier info on it. if any one gets offended then i say sorry now, video not for medical students!

AussieFay - You said "83% of people that seems really high Trys", so I thought I'd encourage you with the stats that I have, and the sources of the stats. Hey, I'm not ramming facts down your throat, just answering your question about "83%". I you are aware of the statistics, then heh. I need no chill pill at all - I don't need em.

J0KEYJ - sorry if you think that I am acting as some sort of expert, I'm not, but hopefully the research that I'm quoting is based on sound fact. I've just bought a lot of books and endocrine journals, read a lot, talked to lots of doctors, met people with acromegaly. It's me taking control of the illness, not the other way round. As for why have I joined an acromegaly support group? Simple really, I have acromegaly with a pituitary macroadenoma. I'm hoping not only to get support from others, but to support others. Do I have any symptoms - yes, of course I do.

Things are not that bad folks!

Do you know what Trys I am ROFLMAO youre funny.:)

Glad I'm not a Joke! :)

No not at all I think you are trying to have a positive attitude.We cant always agree on things everyone should say what they think how they feel but the important thing in all of this is beating our condition.Anything anyone can bring into doing this is brilliant and living the best way with this condition you agree

J0KEYJ - yes I completely agree, and it's brilliant that Lisa took the time to do it. :)

Considering how uncommon (rare?) our condition is, I guess it is not surprising our sources don't all agree. We just have to try to appreciate where each other is coming from. Trys, I read some of the same figures you did. I have also wondered what proportion of the acros with "cures" bother to come to a support group. I assume that most don't, but wouldn't it be good if they would? We need their input, too. I'd like to know how many residual symptoms they still notice, etc. Maybe it would reassure those of us who are still wondering if we are "cured". I know the success rates are not as high for macroadenomas. However, I don't think I've ever read what proportion of adenomas tend to be macros. Since it takes so long to diagnose, I would think a high percentage would be. Just curious.

Hello, I'm a completely new member of this group and wanted to congratulate Flouncy on her excellent efforts at promoting awareness of acromegaly. I hope she will be encouraged to produce more films. As patients, knowledge is our only defence. We need both doctors and patients to be more fully aware of pituitary diseases if we are to have any impact on the horrendous and unnecessary delays in diagnosis.

I am sure Trys was trying to be helpful with his comments and statistics, but they do need challenging. Unfortunately, most patients with acromegaly continue to suffer debilitating symptoms despite so-called biochemical cure. Also, most patients with acromegaly are not discovered when their pituitary tumours are small, but when they are large, making treatment more difficult.

"Biochemical cure" is now known not to be a reliable marker for quality of life in acromegaly patients. A research study published by The Journal of Clinical Endocrinology and Metabolism concluded that, "Patients cured after treatment for acromegaly have a persistently decreased quality of life despite long-term biochemical cure of GH excess." The link for this study can be found at:

http://jcem.endojournals.org/cgi/content/abstract/89/11/5369

Another study published by the journal Hormone also concluded that, "Clinical features of acromegaly correlate poorly with indices of biochemical activity." The link for that research is at:

http://content.karger.com/ProdukteDB/produkte.asp?Doi=82032

Yet another study, again published by the Journal of Clinical Endocrinology & Metabolism, confirmed that even after long-term remission from acromegaly, many patients still suffered. The study concluded, "Acromegalic patients had a high prevalence of joint-related comorbidity and hypertension despite long-term control of GH excess. Especially, joint complaints contributed to a reduced perceived quality of life in these patients."

The link for that research is at:

http://jcem.endojournals.org/cgi/content/full/90/5/2731

In addition, the medical literature has many studies of the continuing problems suffered by acromegaly patients, such as headaches, sleep apnoea, sexual problems, psychological issues, that combined, cause many daily problems for the average patient.

I think that Trys is very lucky to be free of these problems and we should celebrate that. But on the other hand, I'd like to encourage Trys also to recognise and acknowledge that many patients - quite likely most acromegaly patients - have not fared as well as him. It's hard enough when doctors don't recognise our severe symptoms, but when a fellow patient also doesn't, it can be heart breaking and so discouraging.

As for my story, I was a journalist and film maker before a long list of symptoms caused by acromegaly prevented me from continuing my work. I wrote the story of my difficult road to diagnosis in The British Medical Journal and The Independent newspaper. Here's a link to that:

http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/acromegaly-my-diy-diagnosis-397646.html

I think this is a great site and I'm pleased to have found it - daily strength to you all!

Best wishes

Jon

wow jon i wasnt expecting that! lol well i guess people get thier knowledge form different places and it seems you have certainly done your research. thannk you very much for watching my video :OP
it's nice to have comments that are appreciating it.

Jon,
I am so gla dyo found our site. I actually read your story in two different places when I was first diagnosed. I was so pleased to have connected to your story. I am so gla dyou found us. This site has been very helpful to me. I am not a "techie" and I have never been part of a support group.....but this site has allowed me to learn about all the diffferent routes to acro management...thanks for the research sites...

Just in response to JonDanzig - I am totally familiar with quality of life studies of Acromegaly, and have printed copies of at least two of those studies too.

The key is however:

1) What symptoms do people have *before* treatment.
2) What symptoms do people have *after* treatment or as a *result* of treatment.

The symptom list for *after* treatment or as a *result* of treatment is very useful to put across the debilitating effect on some acromegaly sufferers. This gives a great insight into the seriousness of the condition and why it needs to be treated accordingly. Lisa has door a stirling job of doing just that in her mini video, which I've already commended her for.

The symptom list *before* treatment is the key though to get people through the doctors door to get diagnosed and so get treated.

Here's a recap:

100% Acral enlargement (enlarged hands and/or feet)
100% Soft tissue overgrowth
90% Enlarged sella (bone around the pituitary gland)
88% Hyperhidrosis (excessive sweating)
87% Lethargy Fatigue
73% Weight Gain
70% Pareshesias (tingling/numbness of hands/fingers)
70% Hyperinsulinemia (Diabetes Type 2)
69% Joint Pain
65% Headache
60% Irregualr or missed menses (missed periods)
50% Glucose Intolerance
46% Photophobia (eyes over-sensitivity to light)
46% Impotence or Decreased libido
45% Papillomas (such as skin tags, skin growths)
33% Hypertrichosis (increased hairiness)
32% Goiter (swelling around the thyroid gland - on neck)
29% Acanthosis nigricans (dark often localised skin pigmentation)
24% Hypertension (high blood pressure)
20% Visual field effects (loss or reduction of field of vision, tunnel vision)
16% Cardiomegaly (enlarged heart, such as left ventricular hypertrophy)
13% Hypothyroidism (underactive thyroid)
13% Galactorrhea (discharge of breast milk)
11% Renal calcuii (kidney stones)
8% Gyneomastia (development of enlarged male breasts)
4% Hypoadrenalism (underactivity of adrenalin glands)