Raising Awareness

Hello! I hope you all had a Merry Christmas, are still enjoying your Happy Hanukkah, and are looking forward to a Happy New Year!

I have been visiting my parents in the Midwest, where we just hang out, eat too much food, and watch a ton of TV. So far we are gravitating towards medical dramas (House M.D. and Scrubs) and reality TV (Discovery Health). We've been watching all these shows where there are mysterious diseases and it reminds me so much of before I was diagnosed (and being misdiagnosed). Idea! We should write to all these TV shows and tell them about Acromegaly. Wouldn't acromegaly make a good episode of a medical mystery? There are so many potential wrong turns, misleading symptoms, etc, etc. I can see how doctors could easily rule it out because someone didn't immediately show the classic symptoms (hands, feet, face) which take a few years to develop. Having acromegaly discussed on TV will raise awareness of he disease, and hopefully help people get an earlier diagnosis. Early diagnosis is so important!

There are a couple of shows on Discovery Health about gigantism, which is close to acromegaly, but not as obvious. Is there a way to petition a network about what kinds of shows should be aired?

Goals for 2009

I haven't had the chance to update this blog as much as I would like, and I'm already thinking of New Year's resolutions for this blog! If you haven't been added as an author yet, please email me and I can add you easily.

Here are the improvements I would like to see in the upcoming year:

• More posts: at least 2 a month. Not just from me, but from anyone!
• Design makeover: fancier looking banner, more interesting color scheme.
• More multimedia: Embed acromegaly related videos, pictures, and audio.
• Make some kind of profile page for each contributor to this blog so that people can see a timeline, what kind of treatment each contributor has had, and any other personal info they feel like sharing.
• Some kind of outreach program to raise awareness of acromegaly and therefore help people get earlier diagnosis (and more successful treatment). There are so many other professionals besides endocrinologists that can be on the lookout for symptoms: ophthalmologists, optometrists, dermatologists, dentists, orthodontists, podiatrists, hand doctors, jewelers (adjusting ring sizes), make up artists, etc etc. Can you think of more? Of course the general public should know about acromegaly too. When I think about how long I had symptoms and how long I went undiagnosed and I really want to make so no one else has to go through the same frustration.
• In-person meet up somewhere?
• Get acromegaly to show up in spell check! So frustrating that most software doesn't recognize it as a word!!
  

Please leave your own ideas in the comments!

Updates!

Hello Dearest Acromegaly Friends!

Thank you for your comments on the last post- I have updated the url for Miss Magpie and I would like to introduce the newest member of the community:

Trys!

I hope that everyone is doing well. I am sad that I missed announcing Cedars Sinai's Pituitary Patient day last month in Los Angeles- did anyone happen to go? I'm curious what they talked about and what kind of acromegaly turnout they had. They told me that there is a new acromegaly study starting soon and they need subjects- I don't have all the details yet but I will try to be better about sharing the info I get.

Welcome, Omar!

New acromegaly blogger on the radar!

http://odelrio.blogspot.com/

He just had his surgery and so far it seems like his recovery is going great! Looking forward to reading more from Omar!

Any other acromegaly bloggers out there make sure to leave a comment with a link to your blog!

Pink Elephant in the Corner

OK, I really, really don't want to come across as a hater, or rain on anyone's parade, but I've been thinking about this lately because of the large amount of news coverage.

Doesn't Michael Phelps look like he has acromegaly? I mean, people talk about how he's tall and he has big flipper-like feet all the time. His jaw looks a little enlarged too, and his teeth look like mine- too narrow on the top.


I know I'm not the only one who thinks so, because I did a search and there are a couple of other people who made comments about it.

Let me make it clear, I'm really not trying to tarnish his reputation or anything. Acromegaly or not he's a hot piece, but IF he does indeed have acromegaly he could be a really great spokesperson for the disease! He could really raise awareness of our rare condition, which would hopefully help others get an earlier diagnosis (and therefore more effective treatment), and also spur more acromegaly research.

Maybe we can start an acromegaly swim team!

Sandy Allen, RIP

Sandy Allen, acromegaly (and gigantism) patient, died today. I've seen her on a few TV documentaries and I always admired her upbeat attitude. She lived her life with the utmost grace, and she is a personal inspiration for living a full and exciting life despite her diagnosis.

Some links:

http://news.yahoo.com/s/ap/20080813/ap_on_re_us/obit_tallest_woman

http://www.dlisted.com/node/27725

http://www.indystar.com/apps/pbcs.dll/article?AID=/20080813/NEWS/80813001

slideshow from indystar

Wikipedia Entry

I know the extreme nature of her condition might alarm those who have been recently diagnosed, but remember that she is the World's Tallest Woman and therefore on the far end of the acromegaly spectrum. I want to recognize her because she was such an advocate for "being different" and we all have the opportunity to have the same influence in our own ways.

Acromegaly Patient Education Day

The Neuroendocrine Clinical Center at Massachusetts General Hospital presents:

Acromegaly Patient Education Day
(Program was held Friday, May 30, 2008 at MGH)

"The Neuroendocrine Unit at Massachusetts General Hospital is pleased to offer an opportunity for patients as well as their families to learn more about acromegaly and advances in surgery, radiation, and medical therapy. Speakers will include specialists in acromegaly and other patients diagnosed with acromegaly."

Here is the link: http://pituitary.mgh.harvard.edu/APED2008.htm

There are some informative videos posted on this site (from the conference) that you can watch - including patient stories. This is a great resource for anyone looking for more information on diagnosis and treatment of acromegaly.

Is breastfeeding safe?

Guys, I'm getting worried. I'll have my one-month postpartum check-up with my endo tomorrow. My OB-GYNE advised that I should nurse my baby. I have been doing so for a month now, but I've read some internet materials saying that breastfeeding might increase a pituitary tumor. My last MRI (post-surgery) was indicative of a 3mm residual tumor... I feel that I'd rather shift my baby to bottle feeding much as I want to continue nursing her, than take the risk of a tumor regrowth---that is SCARY!!!

Blog Away

Blogging...I think it's great therapy to get your thoughts out and it helps others, too! There is a new blog that has been posted by Miss Magpie who lives in Germany: http://miss-magpie.blogspot.com/. She recently had surgery and is sharing her story on Blogger. I would encourage y'all to check it out when you get the chance.

Also - anyone else who passes through this site, let us know if you've created a blog to share your story. There are many people looking for information on acromegaly, and most are wanting to read a personal experience from someone who has had surgery for a pituitary tumor. So, blog away (if you get the urge to) and tell others about you. Thanks to everyone who has shared their story with us!

Pregnant Princess :)

Hi, guys! Sorry for my long silence... After my surgery in Feb last year, everything seems okay although my post-surgery MRI revealed a 3mm residual tumor. Few months after, I noticed that my physical appearance was improving and my fatigue has let up. My neurosurgeon and endocrinologist's recommendation, in case my blood work still persists on coming back with elevated GH and IGF levels, was for me to undergo radiation therapy. However, I was told that other functions of the pituitary gland might be affected if I undergo radiation. Worst effect could be that I might have very low LH production which could drastically reduce my chances of having another baby. Since my husband and I wanted to at least have one more child (we have one already), we decided to give it a try...

Luckily, I conceived last September. I was quite apprehensive since GH levels go rampant during pregnancy--add to that the possible GH secretion of the residual tumor, and I'd be in for another health scare... But, so far, I've sailed through this pregnancy very well. I'm now 38 weeks pregnant. I was not advised to have periodic blood work since my OB said that it'll just be academic to do so...as nothing can be done while I'm pregnant. A repeat MRI has to be put off until after I deliver. I was just tested for glucose levels during my 24th week. The 2nd hour OGTT value came out slightly elevated. But that was it! Surprisingly, I haven't had any swelling... In fact, I look far better than I did just before the surgery. My rings still still fit. I did not have edema (swelling of feet, face and hands), although as is normal during pregnancy, my nose looks a bit swollen.

My baby's now full-term. I could deliver any time now. We are all excited of Gabee's arrival in our family. My endo is co-managing my condition along with my OB-Gyne. I'm praying that all will be well, and wishing that that tiny tumor would just fade away... Life's good. God is good! :)

Somatuline Autogel

Hi!

I am having these shots, 120mg every three weeks, since March. I think it is equivalent to Sandostatin LAR? Next week I am having blood tests and my endo will give me the results at the end of June.

I also had the same shots before the first operation, but now the leaflet of Somatuline has been updated, and it says it can be administered by oneself: personally I feel quite scared of THE NEEDLE so, since I have the nurse at 5 minutes from home, by now, I am not thinking about that possibility.

you can find it here: http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/iscsatgi/$File/iscsatgi.pdf

Maybe if it is a long journey to have it injected, it would be much easier to do it by oneself. Anyone who tries, please let us all know.

How is Everybody??

Just wondering how everybody's doing? I'm sorry I haven't been on lately. I'm finishing up my B.S. degree, finally graduate the 31st. And truthfully I'm just so fatigued lately I'm not usually online. Pretty sad for a computer major. I'm feeling depressed over here :-( My GH is still elevated, going to the 30mg and I just know it's not going to work.

Sore Muscles & Headaches?

Hey everybody. I was just wondering if these two things might have a cause-effect relationship. I've still had headaches and neck aches in the year since surgery. I've wondered why I still have headaches even though the Sandostatin seems to control other symptoms so well. I had an especially tense semester at school and ended up with a really bad migraine. So I went to see a nuerologist. She would've suggested meds but I didn't want them, so she sent me to physical therapy. The stretching exercises seem helpful. The one thing that's really seemed to help is the suggestion of sleeping with a different pillow, one that's cylindrical in shape, or even rolling a towel up underneath my neck. I wonder if each night I'm extending my neck in a way that stretches my neck muscles too much, or in the wrong position, and that may be contributing to my headaches and neck aches. I do notice that when I tuck my knee under me while I'm sitting in a chair, my knee will become very sore and tender for days afterward as well. Anyone else with similar experience?

BBC- diagnosis by handshake

http://news.bbc.co.uk/2/hi/health/7246419.stm

Handshake diagnosed brain tumour

Dr Chris Britt (left) realised Mark Gurrieri's condition straight away Handshake recreated

A GP diagnosed a rare brain tumour just by shaking a man's hand.

Mark Gurrieri, 36, from Loughton, Essex, was working in a restaurant when a friend introduced him to his dining partner, Dr Chris Britt.

The GP said he knew something was wrong when he shook Mr Gurrieri's large, spongy feeling hand.

Mr Gurrieri underwent tests and was found to have acromegaly - caused by a tumour in the pituitary gland which leads to excess growth hormone.

The condition is seen in just three people per million, and can have serious effects if left undiagnosed.

It's so rare most GPs wouldn't have seen patients with it Dr Chris Britt

It causes problems with vision and can lead to diabetes and blood pressure problems.

If untreated acromegaly can also cause premature death.

Mr Gurrieri thought his hands were getting bigger because of too much DIY and working in his restaurant kitchen.

Surgery

He told the Ilford Recorder newspaper: "I felt good in myself up until that point, and didn't think I had a problem - just thought my conditions were down to getting older."

He immediately booked an appointment with his GP, and tests confirmed he had the condition.

In January surgeons removed most of the 2cm benign tumour growing at the base of his brain.

Mr Gurrieri, who has a seven-year-old son, must now take medication to keep the condition under control.

"My mum thinks Chris is my guardian angel," he said.

"I could have lost my sight, or I could have had a number of other ailments, so I think I owe my life to Chris - and a few meals at the restaurant."

Dr Britt, who works as a GP in Woodford Green, said he had not seen a case of acromegaly since he was a medical student working in a specialist hospital.

"It's the sort of diagnosis you might make once in a career if you're lucky. It's so rare most GPs wouldn't have seen patients with it."

Surgery

Ran into a situation where my job tanked. That means my insurance will run out in 60 days and this creates an unbearable situation because my new job has a one year wait time for "pre-existing" conditions. Both me and my doctor agree that one year without any treatment or medicine at all could very well be a death trap so we have been working this week to schedule emergency brain surgery with Dr. Kenneth Ott, the neurosurgeon. Was thinking surgery was today but it was only a pre-op meeting and they did bloodwork. They were still awaiting an authorization from my primary care physician so I went over there and had the nurse fax it over. Since being diagnosed I have NOT had surgery using only diet and dopamine agonists as treatment. I would have loved to have continued this approach but job and insurance company details have ruled out that luxury. Still... in two years we managed to STOP the growth of the tumor! Had the experiment gone on longer I believe I would have gotten better and better and better as I was just beginning to really respond to treatment. So next week sometime I go under the knife and up the nose. Ott is old school. He uses the microscope method and I remember him saying something about a shot of sando. SWEET! Wish me luck!

Also, highlight from Chantal's blog:

http://chantalshersenpan.web-log.nl/chantalshersenpan/2007/06/acropsychology.html

Totally rings true for me.

late with the Sando shot

I deviated from my Sando schedule this month because I was traveling for the holidays, so I took my Sando shot late (this morning) when it should have been a week ago. I could totally, totally feel all my old symptoms acting up again, so I'm taking it as a sign that the medication was working (unless it was the acupuncture, which I also tried).

Symptoms specifically were/are:

-ankles throbbing on the inside along achilies tendon
-Joints aching: hips, neck, and back
-Talking a teeny bit "floppy" (from enlarged tounge)
-Face appears swollen
-Skin oily
-Get too hot or too cold easily
-Heart pounds
-Headache (scalp/brain feels like it isn't getting enough blood)
-Fatigue, as in, going up a flight of stairs makes me want to take a nap

The ankles throbbing reminded me that I went to a reflexologist in Hong Kong in 2004 and he said that my hormones were totally out of whack (although, I thought he said reproductive hormones) and he could tell because my ankles were tender in the spot that is tender now. I'm pretty sure my tumor was active during that time.

Also, I was watching TV on the flight back from NY last night, and on the National Geographic channel they had a special on gigantism (Also airs: Monday, January 7, 12A; Sunday, January 13, 2P). They profiled two acromegalic giants, which held my rapt attention. I learned some interesting things during the show, like how all the symptoms people get happen. Did you know that excess growth hormone makes the brain less responsive to carbon dioxide? And that it makes the muscle cells hold water, causing weakness? Funny, my acupuncturist said I have "too much water," except she explained that it means I think about things too much. Do you think we acromegaly patients think about things too much?

Sorry, I know that was a bit of free associate. Since I'm at it- Growth Hormone and Major League Baseball.

Anyway, I got my shot today so I fully expect to feel better in a few days.

Dearest Acromegaly Bloggers,

Happy New Year!

I hope 2008 is a great year for health.  Love to you all.