A Success Story - Start to Finish

Submitted: June 2004

  • A Parent’s Journey
  • Selecting the Surgeon 
  • Sample Letters to Secure Insurance Coverage 
  • Preparation Prior to Surgery 
  • The Surgery 
  • Post Surgery Recovery 
  • Before and After Pictures 
  • Parting Comments 

A Parent’s Journey

By way of introduction, I am an Executive Recruiter and my husband is an Art Director living in the Pacific Northwest with 14 and 15 year old sons. One of our two precious children (who is now 15, referred to here as Patrick) is the subject of this story. This young man is one of the most courageous individuals we know and his story is one he wants to share, so that others (especially teenagers) can gain from his experience.

Since the age of 10, Patrick began to manifest signs of developing gynecomastia, leading to an unusually severe condition. We were advised by Patrick’s lifetime pediatrician, to monitor this condition to see if between age 10 and puberty this issue would resolve itself. We monitored the situation until age 14, at which point we assessed that the condition was not corrected, but in fact worsened. Consequently, Patrick began therapy to manage the manifesting psychological issues gynecomastia presented to an adolescent male. Simultaneous to this, we consulted an endocrinologist, for an endocrinology work-up and diagnosis. Her recommendation supported a surgical solution to the problem. Following this, we gained second opinions from a doctor from Children’s Hospital, a notable Pacific Northwest plastic surgeon specializing in reconstructive surgery and the therapist our son was seeing. The professional consensus was that reconstructive surgery was the only long term solution available for our son.

Selecting the Surgeon

Patrick participated fully in researching and interviewing doctors. We concentrated first on surfing the Net for every conceivable piece of data regarding gynecomastia. The gynecomastia.org site was one of the most helpful sites and we were grateful for the pictures and stories (especially from other parents). We read Dr. Delgado’s FAQ’s on this site and applied his advice to help us find a surgeon through the American Society of Plastic and Reconstructive Surgeons (800-635-0635) www.plasticsurgery.org. In addition, we searched the site of the American Board of Plastic Surgery www.abms.org (866-275-2267). We also checked surgeon credentials through the medical board for each state (i.e.: California’s medical board site is: www.medbd.ca.gov.)

We set up six interviews/exams for Patrick in the Pacific Northwest. It took an enormous amount of courage for Patrick to endure the probing, touching and astonished reaction on the part of many who examined him. It was evident that Patrick’s case was unusual in its severity and nearly every doctor wanted to take the case as a way to expand his/her practice for the notoriety it provided or to share his/her experience with colleagues and at conferences. We were asked to share pictures and allow teams to work on the case. In the end, we determined that regardless of their zeal, none of the surgeons we met had experience managing gynecomastia surgery for adolescent males. We heard about a variety of approaches, from liposuction, ultra sound assisted liposuction to cold laser. One surgeon who had never worked with a male patient, recommended liposuction combined with wholesale removal and re-arrangement of both nipples. It was evident that none of the surgeons we interviewed had the training in glandular excision and reconstruction, nor the surgical equipment to handle this case.

As reluctant as we were to leave the state of Washington for this surgery, we knew it was the only way we could be confident about the outcome. Finally, a national search yielded three doctors we felt had the potential to handle our case. They were located in Virginia, Texas and Dr. Delgado in California. After phone screens with all three, it was evident that Dr. Delgado, from the San Francisco Bay area was both qualified and compelling in his style and ability to show historic proof of his work. He had formidable experience performing male subcutaneous bilateral mastectomies.

Patrick and I flew to San Francisco, where Dr. Delgado did a preliminary exam and allowed us to interview him and evaluate his recommendations. During the interview, Dr. Delgado addressed Patrick directly and listened carefully to both the physiological and psychological issues presented in this young man. He was able to show before and after pictures of many cases. He described a conservative and aggressive approach, both of which were logical and supported with real cases.

We were pleased with our meetings and we checked Dr. Delgado’s credentials, which were impeccable. His team was professional, kind and efficient. We set a summer surgery date so that Patrick would have the recovery time away from high school and then we began to prepare for the surgery ahead.

A Template for Obtaining Insurance Coverage

Because surgery for gynecomastia is considered a cosmetic procedure and not medically necessary, no one we met along our journey was optimistic about getting insurance coverage. We have been told since, that the insurance coverage we did receive was an exception, not necessarily the rule. Despite this, we owe our success to becoming “students” to gynecomastia. In our research then, we accessed a major insurance company’s Web site intended for practitioners, not patients. It described in detail the medical policy used by the Medical Director in reviewing mastectomy for gynecomastia surgery. It described the surgery, policy/criteria for coverage, rationale for benefit administration and scientific background. After reviewing the site, we were able to formulate a template that would address the objections to coverage head-on and build the best case for the claim. Here’s what we learned:

  1. For gynecomastia to be covered, it must be the result of glandular breast tissue, not the result of obesity, pre-adolescent puberty, or use of drugs. 
  2. The procedure must describe glandular excision
  3. In an adolescent male, a bone age test must indicate that the conditional effects of puberty are not relevant and that the gynecomastia is not expected to resolve itself spontaneously or post-puberty 
  4. The long-term psychological and physiological impact must show risk toward eventual manifestation of any or all of the following: depression and isolation, weight issues, potential adolescent diabetes and cardio vascular issues. 

We were successful in proving our case (and getting coverage) by submitting a portfolio to the insurance company which included the following:

  1. Letter from us (as parents) to the insurance company summarizing the situation, why it concerned us, the solutions we sought, plus coverage we were seeking. (Letter A) 
  2. Letter from the endocrinologist stating that no change to the gynecomastia is likely post-puberty (Letter B) Letter from the therapist documenting the manifestation of psychological and physiological issues (Letter C) 
  3. Letter to the insurance Medical Director from Dr. Delgado describing his exam and surgical recommendations (Letter D) 
  4. Pictures (below) 

Preparation Prior to the Surgery

We knew that managing the logistics of a long distance surgery would be difficult, but with pre-planning could be a positive experience. My husband stayed back home with our other son and I prepared to make the trip, surgery and recuperation as seamless as possible. Following is an outline of the time, destination and cost:

Trip Duration: 11 days

Airport: Oakland Airport (airfares are less expensive, rental car access is on premise and distance to Corte Madera was a reasonable drive).

Rental Car: Dollar Rental from Oakland Airport for 11 days - $303.05

Motel: Marin Suites Motel 45 Tamal Vista Boulevard Corte Madera, CA 94925 415-924-3608

Room Description: 2 bedroom suite with 1 queen and 2 doubles Living room with fully equipped kitchen and dining area Cost: $119.00 per night Click for details Note: Ask for a room that has been refurbished and insist that the carpets be cleaned prior to your arrival. This motel is clean, neat and safe. But the carpet in our suite was well camouflaged…except on the bottoms of our feet and white socks!

While we had our computers with us, we didn’t want to carry a printer, so before the trip, we printed out every possible commute, this way we had directions to the clinics, motel, airport, and places to visit for diversion.

We mailed a large box to the motel ahead of time. It contained our pillows, books, hobby items, office materials and files and favorite kitchen utensils. There was a grocery store ¾ mile away as well as a drug store. The Corte Madre mall is in the same area and ended up being an important getaway.

We arrived a day and a half prior to the surgery. The first evening we went directly from the airport to an Oakland A’s game. It was a good way to start, taking the edge off the tension. We wanted Patrick to remember San Francisco and Oakland for more than “the surgery”. The next day, we headed into San Francisco and met Dr. Delgado. He examined Patrick one more time and described the surgery once again. He was extremely patient and gave us as much time as we wanted to review the plan, talk about any apprehensions and prepare ourselves. We were given a portfolio describing the surgery and preparation ahead of time. This included mediations to avoid, a review of the operating facility, surgical risks, consent for surgery, medications, postoperative care, and helpful information for healing.

We headed from there back to Corte Madre where we shopped for our favorite groceries and prepared to be “motel bound” for the next week or so. I bought ginger ale, crackers, teas and comfort foods in case Patrick was nauseated when he returned from surgery. We found a 13 inch T.V. for the bedroom with a VCR and made a deal with the local video store to rent 10 videos for the duration of our stay.

We were set and ready to go…

The Surgery

Patrick’s surgery was at the top of the morning. It took place in Dr. Delgado’s Novato clinic and surgery suite. The medical team included a board certified anesthesiologist, a trained operating room technician and a registered nurse in charge of the operating room. Patrick was greeted by the staff and medical team who genuinely cared about his well-being paying particular attention to how he was feeling. Because his gynecomastia was so severe, many were straightforward with him, and congratulated him on his courage to move forward at his age with this kind of surgery. It reaffirmed his decision and he managed his emotions well.

The surgery lasted nearly three hours. There was a nurse who continued to give progress reports along the way which eased my mind as I waited in anticipation. After his surgery, Patrick was connected to monitoring equipment and moved to the recovery room. The nurse in this room was a fully trained recovery room nurse and certified in advanced cardiac life support.

After several hours in the recovery room, Patrick was able to leave in a wheelchair. He was able to walk under his own power from the car to the motel and into the room.

Post Surgery Recovery

The most important thing post surgery, was to monitor for excessive bleeding or swelling, which in Patrick’s case was not an issue. There was a “bulb” that collected the drainage from tubes inserted into Patrick’s breasts. This bulb had to be emptied every few hours. In addition, Patrick needed assistance to get in and out of the bathroom. To keep the swelling down, we placed bags of frozen peas on his chest - though the compression bandages were insulating, so we weren’t sure how much the cold was able to penetrate. We set an alarm every three hours for the first few nights to keep the cold packs going and to empty the bulb. After the first 72 hours, he was out of the woods, and feeling perky.

Meanwhile, I was getting exhausted. I hadn’t really taken into account the energy sapped by the emotion, travel, tension of the actual day the surgery and the sole responsibility for managing Patrick’s care through the night, several nights on end. While he slept during the day, I continued to manage my work from the living room of our suite. I communicated with candidates and clients and kept searches alive as it was difficult to get a full two weeks away when my involvement in many of these projects was critical. I thought a legion of angels had arrived, the day my sister and her husband came to the motel to visit. My sister is a Nurse Practitioner and helped on the hardest day when we had to remove the bandages (the adhesive was sticking to the wounds and the hair on Patrick’s chest, so they were very painful to remove). She remained with Patrick while I headed out for a walk and a much needed break.

On the fourth day, Patrick relapsed and became lethargic. He had no appetite, complained of a headache and wasn’t able to remain up and about. We weren’t sure if he was getting sick from the pain medication, or if he was beginning to suffer from complications. Dr. Delgado visited us immediately at the motel and examined Patrick. He removed the dressing and the tubes. There was no abnormal swelling or bleeding. He was pleased with the result and suggested we stay the course and be patient. Slowly, Patrick bounced back and felt much better after he could get weaned from the pain medication.

Finally, on the 10th day, we visited Dr. Delgado once more in the clinic. During this visit, he did another thorough exam and removed the stitches. We headed gingerly to the airport, returned the car and boarded a flight home.

Patrick was given a compression garment to wear post surgery. This turned out to be the best garment because it had Velcro strips which allowed him to adjust the tightness of both the chest and loosen the stomach area. I later ordered a permanent garment from: Wear-With-All - www.wear-with-all.com (888) 808-4888. Note: We bought a size large and then had it tailored for Patrick so that the chest was far tighter than the stomach. He actually became quite dependent on these garments as they provided him with a sense of protection. These garments were prescribed for 6 weeks, but Patrick wore them for nearly 6 months.

Patrick was able to resume most physical activities within 6 weeks. He began to play tennis 8 weeks after the surgery. The only postoperative issues were a hardening of tissue under and around the nipple, with some tenderness to the touch. Within 6 months, all of this dissipated. His breasts are now flatter and firmer with no tenderness. There is a slight droop on one side just under the nipple which makes a slight fold. Prior to the surgery, this breast was conical in shape and larger than the other side. The drooping has gotten better as the skin has re-draped. Patrick is growing hair on his chest now and this is helping to blend things visually. When he is hugged or patted, he does not back away or react adversely. He seems completely at ease with himself. He feels an enormous debt of gratitude for the chance to have this difficult malady reversed and a chance to get on with a normal life.

Before and After Pictures

A Parting Comment…

There is something blessed about the way a child grows and develops his self esteem and how this is all core to his future success and happiness. The maternal instinct to protect and nurture is as strong and compelling. Today, Patrick is entering his sophomore year in high school. He is on the tennis team, frequently wears just a single layer of clothes and stands taller. He has increased his circle of friends to include girls and is becoming more social. The nightmare is over and he has grown stronger in character. We feel blessed.

Letters

Letter A - Letter from the parents to the insurance company

July 27, 2003

(Insurance Company)
Attention: Medical Director

Re: Patient
Birthdate:
Group Number:
Subscriber ID Number: Suffix: Plan:
Coverage: Subcutaneous bilateral mastectomy (CPT code 19182)

Since the age of 10, our son, Patrick began to manifest signs of developing gynecomastia, leading to an unusually severe condition. We were advised by Patrick’s lifetime pediatrician, to monitor this condition to see if between age 10 and puberty this issue would resolve itself. We monitored the situation until age 14 (his present age is 14 years, 8 months) at which point we assessed that the condition was not corrected, but in fact worsened. Consequently, Patrick began therapy (name) to manage the manifesting psychological issues this condition presented to an adolescent male. Simultaneous to this, we consulted an endocrinologist, (name) for an endocrinology work-up and diagnosis. Her recommendation (attached) supported a surgical solution to the problem. Following this, we gained second opinions from (Name, Children’s Hospital), Reconstructive Surgeon (name) and therapist (name). The professional consensus was that:

  1. The gynecomastia was the result of glandular breast tissue, not the result of obesity or pre-adolescent puberty (later supported by the post surgical pathology report from Marin Medical Laboratories 7/10/03) 
  2. Patrick’s gynecomastia was not expected to resolve spontaneously or with hormone manipulation (supported by the enclosed letter from the endocrinologist)
  3. A bone age test indicated that the conditional effects of puberty were not relevant and that this case of gynecomastia was not expected to resolve itself post-puberty 
  4. The long-term psychological and physiological impact would eventually manifest in the form of depression and isolation (conditions we were already observing), weight issues, potential adolescent diabetes and cardio vascular issues (supported by the enclosed letter from therapist). 

With this in mind, we conducted a national search to locate a surgeon capable of managing Patrick’s case. Dr. Delgado (San Francisco, California) was chosen because of his extensive experience performing subcutaneous bilateral mastectomies. It is notable that the Pacific Northwest surgeons we interviewed (6 total), did not have the training in glandular excision and reconstruction nor the surgical equipment to handle this case.

The surgery for a subcutaneous mastectomy was successfully completed on July 10, 2003 by Dr. Delgado. The enclosed letters support the necessity for the surgery and provide documentation for insurance coverage.

Please feel free to contact me if you need any additional information regarding this claim.

Sincerely,

(Name, Address, Office...)

Letter B - Letter from the endocrinologist to the insurance company

July 27, 2003

(Insurance Company)
Attention: Medical Director
Address

Re: Patient Name
Birthdate:
Group Number:
Subscriber ID Number: Suffix: Plan:
Coverage: Subcutaneous bilateral mastectomy (CPT code 19182)

This letter is provided to support your decision to provide coverage to Patrick for subcutaneous bilateral mastectomy (CPT code 19182). I first examined Patrick in 2002 and have been following his progress relative to severe gynecomastia. He was found to have no endocrine etiology for his gynecomastia, nor were any of the following contributing factors to his gynecomastia:

  • Cirrhosis
  • Primary hypogonadism (i.e., Klinefelter's syndrome)
  • Testicular tumors
  • Adrenal Tumors
  • Secondary hypogonadism (i.e., due to viral orchitis)
  • Hyperthyroidism
  • Chronic renal failure
  • Prolactinomas
  • Ectopic hCG production
  • Use of drugs

On June 25, 2003, I ordered a bone age test. I read it as 17 years with a chronological age of 14 years 8 months. This indicates that his growth and development is 99% complete, and he can be considered physiologically a true adult. This indicates that there will be no further substantive hormonal change or transitory breast change. There is no physiological indication to wait any longer for this surgery. This finding is particularly important in light of the negative physical and psychological implications that this disorder creates for this young man.

Sincerely,

(Endocrinologist)

Letter C - Letter from the therapist to the insurance company)

July 27, 2003

(Insurance Company)
Attention: Medical Director
Address

Re: Patient Name
Birthdate:
Group Number:
Subscriber ID Number: Suffix: Plan:
Coverage: Subcutaneous bilateral mastectomy (CPT code 19182)

I first examined Patrick in 2002 and began providing therapeutic counseling relative to both the physiological and psychological manifestations stemming from his unusually severe gynecomastia.

The psychological impact of living with gynecomastia has been very significant for Patrick. For the past 4 years, he has actively avoided any physical activity that would reveal his atypical breast enlargement. He has avoided PE classes, sports programs, summer camps, and swimming. As a young adult, now in high school, Patrick cannot undress amongst his peers, and thus will have difficulty fully participating in PE classes. Taking part in overnight and other selected social events will continue to be an issue. His fear of taunting, teasing and humiliation associated with this physical disorder is palpable. Patrick wears double and sometimes triple layers of clothes and has adapted a hunched posture to hide signs of this unusual glandular hypertrophy. Socially, this condition will lead to further manifestations of inadequacy, signs I am already observing to include isolation, an eating disorder, low self-esteem and lack of worthiness. This is manifesting itself at a time when developing healthy social awareness and acceptance is critical to long term self-esteem. If these avoidance behaviors and inactivity persist, then healthy wellness patterns will not develop. Patrick will be predisposed to weight gain, which will have implications for future cardiovascular disease and diabetes risk.

Physiologically, I understand from (Endocrinologist) that Patrick has undergone a bone age test indicating that his growth and development is 99% complete - physiologically a true adult. I also understand that a full endocrine work-up was unrevealing. There is no physiological reason to delay surgery, and I have endorsed this procedure in conversations with Patrick and his parents. I urge you to consider this a medical necessity based upon the current and future mental health implications.

Best regards,

(Therapist)

Letter D - Letter from the surgeon to the insurance company July 27, 2003

(Insurance Company)
Attention: Medical Director
Address

Re: Patient Name
Birthdate:
Group Number:
Subscriber ID Number: Suffix: Plan:
Coverage: Subcutaneous bilateral mastectomy (CPT code 19182)

This request is in support of insurance coverage for (Name) for a subcutaneous mastectomy due to severe gynecomastia.

This is a very pleasant 14 year-old young man who exhibits severe gynecomastia (photographs attached). He presents to my office from Washington for evaluation and treatment of his gynecomastia. He has undergone endocrine work-ups from (Endocrinologist). He was found to have no endocrine etiology for his gynecomastia. Medical therapy is not indicated at this point because this condition is not related to hormonal abnormalities and there is no pain or tenderness.

The endocrine evaluation with supporting bone age films indicated that (Name) is post- pubertal. Any contribution that puberty may have had to the glandular hypereplasia is not relevant.

PMH: No history of high blood pressure or diabetes. This patient does have a history of asthma, but is not on any medications. No history of hepatitis, thyroid problems, lung disease, heart attacks, strokes or cancers.

OPERATIONS: None in the past

MEDICATIONS: None

ALLERGIES: None

FH: Non-contributory

HABITS: He does not smoke, drink or take steroids

SH: He is a high school student

PE: On physical exam, he is a well-developed, well-nourished male, having extreme difficulty dealing with the extent of his glandular hypertrophy. His chest shows pedunculated breasts on both sides, right is larger than his left. There is no tenderness or suspicious nodularity. There is no nipple discharge. There is no lymphadenophy. Abdomen has positive bowel sounds, soft, and non-tender.

IMPRESSION: Severe gynecomastia

In terms of the physical examination, his gynecomastia was thought to be glandularly oriented vs. atipost tissue related, thus, the surgical correction selected was subtotal subcutaneous mastectomy performed through a circumareolar incision. During the surgical procedure, the glandular tissue was substantial and a significant portion of the gynecomastia. The pathology report further supports this finding of a large amount of dense fibrous tissue, please refer to pathology report.

Request coverage for sub-glandular mastectomy through a periareolar incision. Please let us know if we can help you with any other supporting documentation.

Thank you.

Sincerely,

Miguel A. Delgado, Jr., M.D., FACS