Author Topic: does doctor make much difference?  (Read 3806 times)

Offline badperson

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I have been in a lot of pain from my condition.  It is on one side only and is not very large.  It started a year and a half ago when I was 25.  I am not very heavy.  However it hurts so much and I have back pain because I bend my back forward so much.

I never heard of anything like this happening to a man before and the endocrinologist I saw suggested surgery or radiation.  The surgeon I saw said that it is an option for me but that there is a significant chance that I will be in as much or more pain from nerve damage from surgery, and got me very nervous about trying.  So I saw the radiation doctor and got 5 treatments which he said should reduce the pain.  This was about 2 months ago and I thought it helped a little but the last 2 days have been the worst I ever had.  The radiation cost $2,000 after insurance paid their part and I don't see anyone else here even mentioning it as an option, maybe it was a bad idea.

I really want pain relief more than appearance though I would be happy if appearance can be made more like my normal side.  Is the doctor that was recomended (right here in town) by the endocrinologist a good choice or do I need to find someone who is a specialist on this type of operation?

btw this is the first time I have been here and have been reading the board for the last 4 hours.  I am glad to find this place and feel less angry.  I have been having some anger problems the last few days, maybe because I am very ashamed and tell nobody.

I appreciate any thoughts people will share.

Offline badperson

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My endocrinologist and the radiation therapist said that the radiation can reduce pain in the area for about 80% of patients who go though it, and reduce size in about 20%.  However, in addition to warning of an increased risk of cancer (2%) and being costly, it also has made a noticable dark patch all around that side of my chest.  The doctors all made it sound like a common treatment for this condition so I was suprised not to see anything about it in these forums.

The doctor I was recomended to for surgery lists "general and onologic surgery" on his business card.  I can ask how many male reduction mamoplasty operations he has performed before.  It seems like it may not be so rare of a procedure now that I found so many other people who have had this done.  Thanks for the welcome.

Offline Mr_Nip

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I've never heard of radiation being used to treat gyne. 

If you have documented pain associated with your gyne, then the insurance companies are far more likely to cover the surgery.  I second maywest in saying you need to get a gyne-experienced plastic surgeon.
MR. NIP

I come from nowhere
And you should go there.
Just try it for a while.
The people from nowhere always smile.  -  Frank Zappa

Offline Time_to_fix_it

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This is the first time I have ever heard of radiation treatment to reduce pain associated with gyne and frankly I would be concerned by anyone offering it.  I have seen several doctors, endocrinologists (including a professor) and finally an andrologist to get my hormones sorted out before I had surgery and NONE of them ever mentioned radiation therapy.

If your gyne first appeared when you were 25 then I would suggest you need to see a good Endo to find out what is happening with your hormones that would have produced the gyne.  Pain/discomfort in the breast area with growing glandular gyne is not uncommon.  Increased oestradiol levels acting on the receptors in the breast often make it very sensitive.  Because your gyne appeared quite late I would suggest you make absolutely sure that there are no underlying hormonal issues before you have surgery.

Good luck and keep in touch and let us know how you get on.


Surgery performed by Mr Levick at The Priory Hospital Bimingham (UK) 20th October 2006

Offline badperson

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sorry about the oncology typo, you figgured what I meant anyway!

I have been to two different endocrinologists, a gynecologist and a surgeon.  The endo  said I was below the 95% "normal" window for testosterone and suggested I take a medicine which I cannot remember the name of.  It is normally used as a type of birth control I think.  Anyway my insurance wouldn't cover it though they would cover Androgel even though it was 3 times more expensive.  So I took that for a while.  I was concerned though because the doctor said that it may prevent me from being able to have children ever.  After a few months he gave me Novarel (human chorionic gonadotropin).  When I went to see the surgeon about having an operation he said that Novarel might cause the condition to be worse even though it would increase testosterone because it would also increase other chemicals.  So I stopped taking any medicine because it seems like they are all being blamed for causing my problem.  Also, a more recient blood test showed that I was above the bottom 95%.

What is most confusing is that I get so many different stories.  Each doctor blames it on the medicines that the others perscribe me, tell me that an operation has 50% chance of leaving me in life-long post-surgery pain, and radiation is a well proven treatment for this.  Yet everything I read here from this community is different still.

I am going to see a internist and see what they have to say.  My pain is getting to the point that often I have trouble walking because of the jiggling causing it to hurt.

Offline badperson

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It is always sore like a bruse if there is any pressure on that side of my chest.  And it is larger but not enough that you would really notice unless you felt it.  Also, it hurts from any shaking (eg walking, riding in a car).  And for several days it will hurt for no reason quite bad (like it has been for the last 4 days now) and at least in the past it would get better for a few weeks, though the other pains would continue.  I had all the tests done that would be needed to be sure that it isn't something else, what it sounds like I need to do is ask some questions to the doctors.

Radiologist:  Is the radiation therapy you performed a recognized procedure to treat this condition, and if so, where is the literature about it?  I couldn't find anything on the internet that mentioned ratiation and gynecomastia except regarding men who get the condition after prostate cancer.

Endocrinologist:  Get a copy of my blood results so I can see how they compare to "normal."  Also ask about the radiation since he suggested it.

Surgeon:  Have you performed this procedure before and why are you saying it has such a high risk of causing nerve damage that will cause perminent pain?  It seems like from this forum there are many people who have been though the surgery without perminent problems (though recovery has been long for some).  I'm not sure what to ask the surgeon though other than if he has done this before.  I don't think I can ask for references.

Offline Paa_Paw

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With a Testosterone level below 95%, I would hope that your Endocrinologist specializes in reproductive issues rather than liver disease and/or diabetes. Often a Dr. will specialize within a specialty.

You would probably be spending your time well if you do a web search on the subject of "Hypogonadism". You may find a source of great help there.

Your description of your situation certainly gives the impression that it is time to find a new team of Dr.s even if you would need to travel some distance to do it.

Stay in touch,

Good Luck!
Grandpa Dan

Offline ovuca

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This whole situation seems weird and maybe a little creepy to me. Do you live in some crazy isolated community or something? I REALLY hope that doctor wasn't truly giving you birth control pills (estrogens) or similar for hypogonadism, and that you were somehow misinformed. I have never heard of anyone receiving radiation treatment for gynecomastia either.

The most important thing to look for when finding a doctor i experience. Don't be shy, ask them to show you pictures of previous results. It's not really a complicated procedure, but there are a lot of ways to mess it up and a lot of doctors who are inclined to do just that.

Offline badperson

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95% does not mean that I have only 5% as much as normal, but that 19 out of 20 men in some age group have higher level that I did.  The endo thoguht that if I am not in the bottom 5% then I am not low enough to casue him alarm.  I think all the doctors I have seen are legitimate, the radiation doctor works for the hospital in town and the endo is part of the largest doctor associates group in town.  I have a follow-up with the radiation doctor in 2 weeks and I will ask him how many patients he has performed this on and for publications/journals that describe this treatment method.

I have continued to be in a great deal of pain the last several days with a bit of improvement yesterday but back again today.  Are any of the following symptoms common?

Pain like a bruise that makes it hurt if any pressure hits around my nipple (all the time)
itching (occasionally)
pain like a muscle cramp (several hours a day).  It tends to be worse after walking or driving in a car
burning sensation on my nipple from shirt rubbing (about 1/2 the time when I am awake).

Obviously some people are more sensitive to pain than others so maybe I am ranking severity different than antoher but it is to the point that it is interfering with everything in my life like walking around the work place and makes me dread the drive to/from work.

Offline badperson

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I saw the radiation doctor today he says he has performed this surgery on about 15 patients in 10 years, 13 of which had prostate cancer and 2 which did not.  I just scheduled an appointment with a plastic surgeon in a nearby town.  Also, I went to a doctor who gave me perscription for Lidoderm patches which help very much with the pain though I am only supposed to wear 12 hours a day.


 

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