Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hello
I am new to the group so I'll start telling something about me.
I am a 40 years old man, diagnosed with acromegaly due to a pituitary adenoma about a year ago. I live in Chile (South America).
I had a first transsphenoidal surgery in November 2011 that had to stop because of bleeding. The surgeon was only able to remove a couple of mm. of tumor. My IGF-1 decreased a little bit from 1444 to 1279.
In April 2012 I had a second transsphenoidal surgery (same surgeon, same ORL, same hospital).
Even though the doctor thought the surgery this time was successful and MRI done 2 months after the surgery shows that there still an important rest of tumor. My IGF-1 decreased another bit from 1279 to 1175. The surgeon said that the activity of the tumor is not directly related to the size of it. Even a couple of mm. of tumor left, are enough to make your IGF-1 levels increase wildly.
The surgeon suggested radiotherapy, classic or gamma knife.
Seeing that my IGF-1 levels didn't drop, my endocrinologist put me on Somatuline LAR 90mg on July. Unfortunately my IGF-1 tested in August was still high: 1254. The endo. explained that Somatuline doesn't work in all cases, but she still wanted to try 2 more times with a higher dose (120mg). I had the second shot two weeks ago but I don't feel any changes, so I guess Somatuline just doesn't work on me. Somavert is not available in my country.
My endo. also suggested a third surgery, with a different surgeon.
I am not sure about having another surgery here, because the local experience seems to be very restricted.
If I am going to have a third surgery I want it to be abroad in a centre that is a world reference for this kind of problems, even though this is going to cost me the savings of my life.
I would like to know your experience with doctors and hospitals in your countries. I have relatives in the UK and in the US, so those countries are my first priority.
Specifically I have good recommendations of Dr. Michael Powell in the National Institute of Neurology and Neurosurgery in London, and of Dr. John A. Jane Jr. in the University of Virginia Health System.
Does anyone have first person experience with these doctors or hospitals?
Another important thing for me is pricing. What is the average aprox. "private" price for a transsphenoidal surgery in your country?
For example, here the "private" price for my surgery was around USD 12.000 in a normal university hospital. Of course I only paid a 10% of that because of insurance, but if I have surgery abroad my insurance will not cover.
Thanks for reading and for your advice.
I am new to the group so I'll start telling something about me.
I am a 40 years old man, diagnosed with acromegaly due to a pituitary adenoma about a year ago. I live in Chile (South America).
I had a first transsphenoidal surgery in November 2011 that had to stop because of bleeding. The surgeon was only able to remove a couple of mm. of tumor. My IGF-1 decreased a little bit from 1444 to 1279.
In April 2012 I had a second transsphenoidal surgery (same surgeon, same ORL, same hospital).
Even though the doctor thought the surgery this time was successful and MRI done 2 months after the surgery shows that there still an important rest of tumor. My IGF-1 decreased another bit from 1279 to 1175. The surgeon said that the activity of the tumor is not directly related to the size of it. Even a couple of mm. of tumor left, are enough to make your IGF-1 levels increase wildly.
The surgeon suggested radiotherapy, classic or gamma knife.
Seeing that my IGF-1 levels didn't drop, my endocrinologist put me on Somatuline LAR 90mg on July. Unfortunately my IGF-1 tested in August was still high: 1254. The endo. explained that Somatuline doesn't work in all cases, but she still wanted to try 2 more times with a higher dose (120mg). I had the second shot two weeks ago but I don't feel any changes, so I guess Somatuline just doesn't work on me. Somavert is not available in my country.
My endo. also suggested a third surgery, with a different surgeon.
I am not sure about having another surgery here, because the local experience seems to be very restricted.
If I am going to have a third surgery I want it to be abroad in a centre that is a world reference for this kind of problems, even though this is going to cost me the savings of my life.
I would like to know your experience with doctors and hospitals in your countries. I have relatives in the UK and in the US, so those countries are my first priority.
Specifically I have good recommendations of Dr. Michael Powell in the National Institute of Neurology and Neurosurgery in London, and of Dr. John A. Jane Jr. in the University of Virginia Health System.
Does anyone have first person experience with these doctors or hospitals?
Another important thing for me is pricing. What is the average aprox. "private" price for a transsphenoidal surgery in your country?
For example, here the "private" price for my surgery was around USD 12.000 in a normal university hospital. Of course I only paid a 10% of that because of insurance, but if I have surgery abroad my insurance will not cover.
Thanks for reading and for your advice.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Thanks for your answer. A price of 95.000 is clearly out of my reach, so I hope there are hospitals that can treat international patients with network doctors.
It'll be great if anyone can share their experience about hospitals with pituitary tumor centers that receive international patients.
Greetings!
I am sure that the hospital will be able to quote you a price for the operation.
John
I just saw your message and i want to say Hola y Bienvenido! (I was an exchange student in Saintiago, Chile many years ago, and I have very fond memories of your country and all of the wonderful people I met...)
I want you to know that I had transsphenoidal surgery at the University of Michigan in Ann Arbor, Michigan last year and I felt that they did a wonderful job. I believe the total charge for my surgery, including hospitalization, was about $28,000.00
If you want me to ask them to review your case, I can connect you with them. I am seeing the endocrinologist and surgeon on September 20, 2012.
Ledgy
Thanks for your reply. It's good to know that I'll be in good hands in case I can have the surgery in the UK. I'll contact the hospital to get a quote.
Thanks.
Sebastin
It is good to know that you have good memories from your stay in Chile. If you can give a contact from the hospital you mentioned that would be great. The price you mentioned seems more reasonable.
Thanks for your help
You can reach their clinic at (734) 936-5020. Ask for Peggy.
Ledgy
I had surgery with Dr Jane in 2007. I believe that he is a good surgeon who uses a less invasive technique. My only concern with him were the post-op sinus rinsing. I do not know if that is currently done but it caused a lot of problems with infection for me.
I would also recommend that you contact any center that you are considering. If you are not using insurance there can be huge reductions in cost. Just be sure to get it in writing.
Pat
If you go the Mayo route, they have a great endocrinology department. I saw Dr. Paul Carpenter and he was very honest, straight forward, highly intelligent, and answered all my questions.
Mayo is a non-profit organization and do give grants, etc. if finances are an issue.
Lauren
Good luck!