Be an advocate, for yourself

For many of us diagnosed with hip dysplasia, there are a myriad of emotions that flood our psyche upon diagnosis: shock, fear, anger, depression, hope, anxiety, self-pity…you name it, we have probably felt it.   Being diagnosed with hip dysplasia and hearing what Doctor #1 had to say (see my former post, “Hip Dysplasia, isn’t that a dog’s disease?”) put me into a tailspin as what my PAO buddy/pen-pal, Jessica, aka Juicer6000, calls the “Dark night of the soul.”  I was forced to give up my outdoor passions and inadvertently, I gave up on a part of myself, my soul. I gave up on my health, rationalizing that I can eat and drink whatever I want. I really wasn’t interested in anything this year, except metal-smithing.  I believe my metal-smithing kept a part of me alive to want to “fix” my diagnosis and move on with my life.  Hence the journey of interviewing 6 surgeons and 1 physical therapist. Below is a summary of assessments, diagnosis’ and my reactions:

Doctor #1:  Dr. Stoll, Louisville, CO: March 30, 2013: Dx: Bilateral hip dysplasia. MRI shows extensive degeneration of labrum ligament on left, much less “diseased” on right.  Mild arthritis in left hip.  Solution: bilateral PAO with labrum repair, refer to 2 other doctors.

My reaction: “Ugh. OK.”

Doctor #2: Dr. Genuario, Steadman-Hawkins, Denver CO, May 15, 2013: Dx. same as above. Solution: double hip replacement, you are too old to have PAO, cut off is age 30 (I was 39 at the time). And then he says “By the way, you will need 3-4 more double hip replacements because they will wear out.”

My reaction: WHAT?!?!??!?! I come to a screeching halt. I thought, “There is no FUCKING way I am going to have 3-4 double hip replacements!”  Instead of just accepting Doctor #2’s solution, I decide to dig deeper, I am highly anxious, my cortisol levels must have been through the roof. I call to schedule an appointment with the second referral , Dr. White.

Doctor #3: Dr. White, Western Orthopedics, Denver CO June 14, 2013: Dx: same as  Dr. #1.  Solution: Labrum repair via hip arthroscopy, 6 weeks later PAO. Repeat on other side 4-5 months later. Refer to talk with Dr. Hugate, the PAO surgeon in Denver to confirm.

My reaction: Are you saying I need FOUR surgeries? FOUR? I am self-employed. The time off from surgery is unpaid. I have a high deductible. I cannot afford to do this.  But I cannot afford not to do this. I call Dr. Hugate. I am now in the midst of dark night of the soul.

(Note: by this time, I have found a great website by Kelly Ariagno, a physical therapist who has adult hip dysplasia and had LPAO surgery. I printed her page of “Questions to ask your PAO surgeon”)

Doctor #4: Dr. Hugate, Colorado Limb Specialists, Denver, CO, July 5, 2013. Dx. Same. Solution: same as Dr. White.  Dr. Hugate confirms being 39 is not too old, though it would have been ‘better’ if I was in my 20’s (if only I had a time machine…) Dr. Hugate elaborates, “We ‘could’ do it at the same time, but I really don’t like to. The hip arthroscopy causes so much swelling that its hard for me to see and reposition the hip socket.”

My reaction: To the last sentence: I want you to feel comfortable and confident when you are screwing my pelvis back together, so do not do them at the same time. I like Dr. Hugate. He is compassionate, professional, and he leveled with me. Though something still did not feel right about four surgeries, at least it didn’t for me. (sub-note: I now know people that have had this process done by White/Hugate and have had great results.)

I was about to accept my fate but something is nagging at me. I email Kelly, the PT in SF. I explain my situation. I inquire about scheduling a session with her, I am desperately trying to find more info about PAO and hip dysplasia. At this point, money is not a factor. This is my pelvis, my health, my life!  If I cannot walk without pain, what is the point in living? I needed more information.  She replies, “Why can’t they repair the ligament at the same time as the PAO? They did that with me without the arthroscopy.”  A light bulb went off in my head. My sister lives in the south Bay Area, so I rationalized it was an excuse for a little vacation. I needed a vacation, this doctor stuff was kicking my ass. And I can meet with Kelly for a session.

Kelly Ariagno, Physical Therapist, San Francisco, Sept. 9, 2013:  Dx: same                        Solution: Refer to Dr. Diab at UCSF and Dr. Bellino at Stanford to get their opinions on 2 vs. 4 total surgeries. In the meantime, strengthen core and hip stabilizers to prepare for PAO surgery.

My reaction: Guess I am buying another ticket to CA for October. At least the weather is nice that time of year, and I get to see my family again! I am starting to see some light at the end of the tunnel.

Doctor #5: Dr. Diab, University of California, San Francisco, October 23, 2013: Dx. same. Solution: PAO with labrum repair at same time (w/o arthroscopy), second operation minimum 6 months later, depending on healing of first operated leg. When I ask him about the separate surgeries for labrum repair via hip arthroscopy and PAO (and even brought up hip replacements) he replied, “There is no reason for that. Look, if you talk to a hip arthroscopic doctor, he will tell you that you need hip arthroscopy. If you talk to a hip replacement doctor, he will tell you that you need hip replacement. I do it all, I teach it all.  I am telling you we can do it in one surgery per side.”

My reaction: I love this doctor. He was ON TIME (shocker, right?) Came out to the waiting room to greet me personally. He was extremely compassionate (probably his nature of being a pediatric orthopedic surgeon) and sensitive.  Yet straightforward and honest. Confident but not cocky, he did not talk down to me. When I told him about how my lifestyle has been halted, he looked me straight in the eyes and said , “I am sorry, that must be very hard for you.” Wow, thank you for acknowledging that!  Anyway, while I felt like I decided on Dr. Diab, I still had an appointment with Dr. Bellino at Stanford.

Doctor #6: Dr. Bellino, Stanford University, October 25, 2013. Dx: same                               Solution: exact same response as Dr. Diab. In fact, he answered all my questions almost exactly the same as Dr. Diab.

My Reaction: Shit. I love Dr. Bellino too. Compassionate, professional, confident not cocky, did not talk down to me…they have very similar bedside manner and answered my questions almost exactly the same way. Tough decision. Very tough. I agonize over deciding. I talk to former patients of each. I meditate on this, I write it out pros and cons, I talk to my family, I do it all.  If nothing else, I am thorough.  I decide on Dr. Diab as he can get me in sooner.

In conclusion, when deciding on a PAO surgeon, do your homework, talk to former patients, and most importantly, listen to yourself and your reactions. Do what best resonates with YOU.

(NOTE: My surgery ended up being with Dr. Bellino ….read on to learn why!)

4 thoughts on “Be an advocate, for yourself

  1. Hi Jen, This is the first time I have read all this. You should get into research/consulting. You’ve done an amazing job on this. Yes, that small voice inside that keeps coming back to us is God, The Holy Spirit. He will take care of you and see you through this. I am in the business center of the LaQuinta Inn in Galveston, Texas, where Bob and I are on a week-long vacation. It has been cold and raining the past two days. It’s kind of a cool place though. I hope 2014 will be good to you and Shawn and we wish you the best. With love and prayers, Aunt Alice.

  2. Hello, I am currently doing research for bilateral dysplasia solution. I am 33 year old male in Oregon, and will be traveling to the bay area in the next few weeks. Can we connect via email? I can send you my contact.

    1. Hi Phil, Happy to connect soon. You can DM me on FB Jen Lesea-Ames or Instagram me @jenleseadesigns your email and any questions you may have and I will reply when I can (I have some travel coming up). Be well, Jen

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