Why I'm Talking Now
In the United States:
Worldwide:
My Experience
I was having some severe headaches last summer around July 2006, to the point where I felt non-functioning, which is unusual for me. I'd never even had a migraine that I knew of. I had an MRI of my brain and they found a benign pituitary macroadenoma 2.3 X 2 X 2.2cm (or a large pituitary tumor, greater than 20mm).
My Symptoms: I went to Stanford and saw an endocrinologist (hormone specialist), Dr. Katznelson. He visibly diagnosed me as acromegalic immediately. I was totally in denial that I could have this "disease". He referred especially to how my hands were so large and spade-like in shape, I had a lot of "soft tissue" growth he said. My ring sizes had grown (I didn't know at the time, but by 3 sizes on some fingers), my shoe size had grown (by 1 1/2 sizes), and I had other visible symptoms of acromegaly like the widening nose, enlarged tongue, and skin tags, .
My tumor was behind my nose, beneath the brain in an area of dead air space. However, it was the size of a walnut, and it was squishing my normally pea-sized pituitary gland like a pancake. The pituitary gland regulates the hormones of the entire body. There was the possibility that my pituitary gland might have to be removed, in which case I'd need to be on HRT's (hormone replacement therapy) the rest of my life.
I ended up having surgery at UCSF (San Francisco, CA) with Dr. Kunwar on December 12, 2006 to remove the tumor transphenoidally (through the nose). My surgery began around 8am and only lasted about 3 hours. The surgeon cut through the sphenoid bone, pulled the tumor out and packed the hole with a fat graft from my abdomen. I also had a lumbar drain inserted into my lower spine to reduce any pressure from fluids around my brain. I was a little freaked out by blood dripping from my nose for the next few hours following surgery, especially when I walked around. I had no nasal packing, but eventually it stopped. I left the hospital by 11am the following morning. It was very similar to a sinus surgery, it seemed almost cosmetic to me. It only took me 4-6 weeks to recover. I had no headaches and basically felt like I had a bad head cold. However I am still very fatigued, which is pretty much normal I think. As far as I know at this point, the tumor was removed 99%, and my pituitary gland is intact.
Based on the statistics, if I didn't have surgery I could have gone blind because the tumor was beginning to press on my optic nerve. And my life expectancy would have been half that of a normal person because of all of the effects of the tumor and the acromegaly.
I had so many symptoms that came on gradually over the last few years, I didn't realize they were related at all. In fact, as each new symptom appeared it was easy for me to explain them away without checking into them because they didn't seem related.
Basically, in a nutshell, the tumor caused my pituitary gland to produce too much growth hormone (GH), which caused the acromegaly. The GH caused production of insulin-like growth factor (IGF-1) in my liver. The IGF-1 causes bone and tissue growth. The good news is even though my tumor will possibly recur, it can be controlled. And I can live a normal life with most likely a normal life expectancy thanks to my surgery and continuing treatment. Most likely I'll need to have shots every month to control my growth hormone and IGF-1.
http://www.acromegaly.org/about_acromegaly.aspx%2520Acromegaly.org
Endocrine & Metabolic Diseases Information Service http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm%23causes
Acromegaly - Wikipedia
http://en.wikipedia.org/wiki/Acromegaly
Pituitary Tumors
http://www.umm.edu/endocrin/pittumor.htm
A personal acromegaly blog
http://blessed-beyondmeasure.blogspot.com/
Acromegaly forum
http://acromegalysupport.com/phpBB2/index.php
I have a very rare disease called acromegaly.
What is Acromegaly?
Acromegaly is from Greek akros "extreme" or "extremities" + megas "large" = extremities enlargement. It's not considered a genetic disease. I acquired it somehow.
Statistics of Acromegaly
Small pituitary tumors are actually pretty common. Based on autopsies in the U.S., 25% of people have them. Most are benign, and they don't seem to cause significant medical issues.
- 2.3cm pituitary macroadenoma (large sellar/suprasellar mass, left carotid artery slightly displaced, slight mass effect on optic chiasm)
- severe headaches (mainly left posterior)
- enlarged spade-like hands and feet
- achy joints, enlarged knuckles
- extra abdominal fat?
- acne
- developed barrel-like chest
- some frontal bossing of the forehead, sunken eyes
- irregular heartbeats?
The Endocrinologist
My tumor was behind my nose, beneath the brain in an area of dead air space. However, it was the size of a walnut, and it was squishing my normally pea-sized pituitary gland like a pancake. The pituitary gland regulates the hormones of the entire body. There was the possibility that my pituitary gland might have to be removed, in which case I'd need to be on HRT's (hormone replacement therapy) the rest of my life.
Surgery 12/2006 @ UCSF (San Francisco, CA)
Based on the statistics, if I didn't have surgery I could have gone blind because the tumor was beginning to press on my optic nerve. And my life expectancy would have been half that of a normal person because of all of the effects of the tumor and the acromegaly.
I had so many symptoms that came on gradually over the last few years, I didn't realize they were related at all. In fact, as each new symptom appeared it was easy for me to explain them away without checking into them because they didn't seem related.
The reason I mentioned Andre the Giant (the WWF wrestler, also known as the giant in the movie 'The Princess Bride') is that he had acromegaly also. It's just that his form of acromegaly is called 'gigantism.' Gigantism is a type of acromegaly that begins in pre-pubescent children whose long bone cartilage hasn't fused together yet, leading to excessive bone growth. This in effect leads to excessive height. Acromegaly in adults causes many of the same excessive growth issues (but not excessive height). For example, my organs can grow too large which can cause me many problems like diabetes and congestive heart failure in the long run.
Links:
Acromegaly.com - satellite site of the Pituitary Network Associationhttp://www.acromegaly.org/about_acromegaly.aspx%2520Acromegaly.org
Endocrine & Metabolic Diseases Information Service http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm%23causes
Acromegaly - Wikipedia
http://en.wikipedia.org/wiki/Acromegaly
Pituitary Tumors
http://www.umm.edu/endocrin/pittumor.htm
A personal acromegaly blog
http://blessed-beyondmeasure.blogspot.com/
Acromegaly forum
http://acromegalysupport.com/phpBB2/index.php
Posts
28 comments:
Hello Jenny.
You may already know that you've just joined a very small number of people who have Acromegaly and Blog. (I think there's just four of us, well five now)
I had surgery for a Pituitary adenoma in July last year, which unfortunatley did not provide me with a cure and I now have to take Sandostatin monthly. You'll find that the others who blog each have had diffrent levels of success in treatment.
We all link to each other's sites so you should find them easy enough, and please feel free to email me if you think I can help you in anyway. (dalbyjm@hotmail.com)
I hope you're feeling well after surgery and I look forward to reading how you get on.
Kind regards
Jason
http://dalbitouk.spaces.live.com/
Hi Jenny!
This is Almudena from Spain. Thanks a lot for your comment in my blog. It's been great to find all of you.
I hope Sandostatin LAR helps you to reduce levels and everything goes well. I will be waiting for your news!
Take care
HELLO ALL MY NAME IS MARTY AND MY WIFE ROBIN HAS A 3.8 X2.2 MACRO. ON HER PTUITARY. YOUR INFO. HAS BEEN A HELP WE ARE BOTH SCARED ALSO THREE KIDS. WE HAVE SEEN A COUPLE OF SERGEONS IN NYC TOP HOSPITALS NYU,CORNELL ETC. WE HOPE TO HAVE IT DONE EARLY DEC. PLEASE GIVE ANY ADVISE.
THANK YOU
Hi Marty. Good luck with the surgery. Feel free to email me anytime. The rest of our group is usually quick to reply to email as well. They've got good advice and really helped me adjust to the news.
Hi Jenny and the others that have posted. My name is Rene, Im 24 yrs old and live in Florida. In August I found out I had a macroadenoma. In October I had transphenoidal surgery to remove my pituitary tumor. My pituitary gland also had to be removed and I was placed on HRTs and sandostatin shots 3x daily. December 27th I start radiation therapy to treat the remaining tumor. It has been very helpful to read of Jenny's experiences with acromegaly. Please email me (pleasantrene@hotmail.com) and tell me about your experiences and how you're getting along.
Thanks,
Rene
Hello Jenny,
I am grateful to find to find your blog which has so much information.
My husband has been recently diagnosed with acromegaly, and has been advised surgery. With all the research we were considering Dr. Kunwar and Dr. Blevins. We live in Hong Kong where pituitary tumours are rarely surgically removed so we need to come to the US for surgery.
I was concerned about Dr. Kunwar's method of surgery, and wanted to know if he uses the endoscope or the microscope. I also read about Dr. Shahinian who uses the edoscope only. I also read a lot about Dr. Laws, I am not sure whom i should contact. How would you compare the three doctors, their methods of surgery, endocrinologists and the facility?
Thnks in advance to your reply
Hi Sheetal. I hope you find the right surgeon, and that surgery goes well for your husband. Unfortunately I can't be of much help. I'm unfamiliar with Dr. Laws. I did consider Dr. Shahinian. But I chose Dr. Kunwar for many reasons - cost, how quickly I believed insurance would approve my choice (I wanted surgery immediately), location (less disruption to my husband and his job, and my 3 children and their schooling), etc. Dr. Kunwar seemed very qualified as he does 3-4 surgeries weekly. I also based my decision on hospital rankings in 2006 when I had surgery. I tried to choose one near the top of the list, but I didn't want to fight my insurance to send me to the Mayo clinic. Dr. Kunwar does use the endoscopic technique. Here are a few links:
http://www.ucsfhealth.org/common/pubs/neuroscience/summer2007/mis_surgery/index.html
http://www.ucsfhealth.org/adult/medical_services/neuro/pituitary/conditions/pituitary/treatments.html
http://health.usnews.com/usnews/health/best-hospitals/honorroll.htm
Dear Jenny,
Thnk you very much for your prompt reply. Wish you a Merry Chrismas and a Happy New Year!
Best,
Sheetal
dear marty
the dr that operated on my brother about 20 years ago with 100% succsse is dr Post.my brother was diagnozed when he was 19 years old he is 42 married with 3 kids. he is cured. dr post saved his life.he used to be affiliated with colombia pespaterian hospital .I think that now he is with mount sinai .He is the top in his field.
My husband has acromegaly. We used Dr. Post in NY. He was fantastic.
Hi Jenny- Thank you for your post. I also have a tumor on my pituitary and should get it removed this month. My problem is a little different though- instead of acromegaly - I have what is called cushing's disease. I have too much cortisol in my blood. It causes many of the same symptoms as your disease but a different physical manifestation- rounded face and a "buffalo hump" on the back of my neck. I really identified with what you said about being in denial and justifying every symtpom as being caused by something else. Its easy to do when there seems to be no connectionbetween the symptoms and having the disease be so rare to begin with. Also strange is how the endocrinoligist knew just by looking at you that you were sick. My endocrinologist said the same thing about me. It's weird because when the symptoms come on so slowly it's hard to realize how much you've phyiscally deteriorated over time. Best luck to you and thanks for sharing your story! You can check out my blog at somnambulistzine.blogspot.com
Hi Jenny - My name is Karen. I am 42 years old and was recently diagnosed with Acromegaly. I am pretty much textbook material! It is amazing how the symptoms that I have had over the past few years have all been related, but seemed not to be related - if you know what I mean.
I have had a gradual change over the past couple of years that have been mind boggling to me - carpul tunnel syndrome (had surgery on both hands) snoring, missed periods, increase in ring size, shoe size, gaining weight even though I work out with a trainer 2 times a week, run 3-4 times a week, play tennis, bike etc. and yet everything I did I have gained 15 pounds in the past year - argh! I can't stand any pictures that have been taken of me lately - I basically figured that this was part of being in my 40's!
Your pictures have been very instrumental for me. I am hopeful that my body will get back into order after my surgery which is scheduled for Sept 14th.
Thanks for posting them - I have been looking for more pictures, but it has been very hard to find before and after pictures - so thank you for posting them and keeping me hopeful for what is to come after Sept 14th.
I hope you are doing great!
Karen
Good luck with surgery and continuing treatment. I'm glad to have been helpful :-)
Hello!
I was diagnosed with Acromegaly last month and I'm having my surgery next week and I am so scared. I'm scared mainly because I have a 2 year old boy and I don't want him to be without a mom. Your story is so inspiring. I hope my surgery goes well.
Mbritt
Hi - Im Debs (in the UK)
Really glad to have found this blog. I had surgery 10 days ago and helps to hear other's experiences. I would certainly say dont be nervous about having it done. The technology used is incredible and living with the condition is far more daunting and risky.
My experience seems similar to Karens. Im 40 and have had various symptoms emerge over past 8-10 years (Carpel tunnel, snoring, fatigue, joint and muscle aches, miscarriages, amenorhea, galactorhea, loss of vision in one eye). Following the surgery I had a CSF leak which appears to have been stopped by the lumbar drain they put in for 5 days. Now just feel a bit rough and have a sore sinus and mild headache. My eyesight has been restored which feels like a miracle - looking forward to getting other hormone results!
Good luck all! Debs
I was diagnosed 3 years ago and have since had a TSA to remove the majority of the tumor, had gamma knife radiation to treat the remaining tumor, and have since been on a monthly injection to attempt to reduce the HGH levels. I am taking Somatuline Depot instead of Sandostatin because my body could not tolerate the Sandostatin. The Somatuline Depot has always had adverse side effects but with my latest injection, I experience a severe reaction and am concerned. I had extremely severe constant pain in the center of my abdomen just below my ribcage. After a couple of hours of pain, I began violently vomitting. This all last from about 7pm-5am. I have tried talking with the pharmacist, the endocrinologist and the drug manufacturer but have had no luck in obtaining any information. I am looking for someone who has taken this medication or a physician who is familiar with the medication who might be able to offer advice (should i seek medical attention immediately if this happens again?). I am starting a new job in June and cannot afford to call in sick each month after taking the injection. Can anyone help???
I'm so sorry you're having this horrible reaction! I would guess you're having a gallbladder attack? I know gallbladder problems are common with these medications. I'm not sure what the answer to this problem would be. I've known a few people with gallbladder problems, and I've heard gallbladder removal isn't necessarily the best treatment. Good luck, I hope you find a solution.
Hello all. I have cushing's disease and a macroadenoma too. I am sure you know the similarities that Cushing's and Agromegaly share.
I draw pictures about my life and experiences with these challenges. I would love to know what you make of my images.
Have a look at my visual blog www.erella.net and you can see a documentary about my case if it interests you.
www.tinyurl.com/erelladoc.
Interesting I stumbled upon this blog.
They must have caught your acromegaly really early because, honestly...you don't look like you have it.
What makes you think you have it if you don't really have the outward signs?
Yes, I believe my Acromegaly may have been caught early. I did have the outward signs before I had surgery. Some of my physical symptoms of Acromegaly were: I gained 30 pounds, my nose and lips enlarged, my skin darkened and thickened, my brow started lowering and my eyes became further recessed. I had acne, I grew more facial hair. I also developed the body type of the Acromegalic with a barrel-like chest, and spade-like hands and feet. Going on a diet, having surgery 5 years ago, and the fact that I'm now on 40mg of Sandostatin every 3 weeks has gone a long way towards getting me back to looking normal, although I don't feel completely normal on the inside. I still have large knuckles and spade-like hands and feet, although my tissue swelling has reduced immensely. I haven't posted one of the worst pictures of myself before surgery, but I can do that so you can see more of a difference. Truthfully I'm embarrassed at the monster I became. This is my picture timeline.
http://sbux-addict.blogspot.com/2007/07/picture-timeline.html
Hi,
I have been diagnosed with acromegaly recently. Just wanted to know the approx cost for the surgery. Your blog is very helpful
thanks
Hi,
I have acromegaly and I am 20 years old! I was wondering in everyone's opinion which center is best to have the surgery? UCSF or standford?
Wow, that seems unusually young for a diagnosis of Acromegaly. Most are diagnosed in the 30-50 year old range as far as I've heard. I'm interested to hear how you were diagnosed so early?
I believe either center would be sufficient for surgery. Personally I had surgery at UCSF, but my doctor at the time recommended Stanford. My insurance didn't cover Stanford back then. The most important thing would be to choose a larger facility like UCSF or Stanford that performs a lot of pituitary surgeries. I would hope you'd have the best chance for a successful surgery by choosing a facility that has so much experience treating your specific condition. Acromegaly is a condition where surgery is usually suggested to be performed as quickly as possible, if you're a surgery candidate.
I don't think you'll get an immediate response on my blog. It'd probably be quicker to consult forums such as Acromegaly Community forums, Daily Strength Acromegaly forums, or Facebook pituitary communities to get a better idea of personal experience with those facilities. Good luck to you!
It is Not too young and those younger are usually diagnosed with Gigantism----the same disease!
I am an Acromegaly survivor---diagnosed 23 years ago and told my body was shutting down rapidly from Associated Large Tumor on My PIT gland and High HGH Levels which were beginning to attack my internal organs. Yes My case was bad as are others--but a word of advise--DON"T GIVE INTO THIS DISEASE! DEAL WITH IT AND LIVE BUT DO NOT BECOME A MEDICAL PATIENT LIVE YOUR LIFE TO ITS FULLEST AND DEAL WITH THE APPOINTMENTS AND MEDS BUT LIVE! That is the only way to beat this disease!
Thanks for sharing Randi. I agree, a positive outlook and trying to live life to the fullest is the best way to beat the disease.
Anyone who needs surgery, I swear by Dr. Shafa at UCLA.
Hi I am Lorena from Miami FLorida I am 45 years old and I started having some of the symptoms around 2009 when I was 38. I was diagnosed with acromegaly last June 2016 and 3 weeks later had my surgery to remove my macro adenoma.My symptoms included swelling, my hands and feet turned a bit bigger , excessive sweeting, constipation, gaining 12 lbs in 1 year, snoring. My neurosurgeon Dr Komotar , my ENT was Dr Sargi and my Endocrinology is Dr Kargi. All from University of Miami Miller School of Medicina at UM Hospital. But my IGH-1 did not went down (733) and after 90 days I needed a second surgery to remove the residues, after this second chance my IGF-1 did not went down so this January 2017 I started a daily injection of SOMAVERT, which is a Grow Hormone receptor antagonist . I just had my labs after 6 weeks of treatment and I hope this is working on me because I can see less swelling of my face, fingers. I have my next Dr appointment in 2 weeks I hope my number has dropped. Thanks for this blog, this disease in uncommon, and is not easy to exchange experiences with anyone else out there.
Thanks for sharing Lorena. I hope the Somavert works for you.
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