Surgery Date Booked !!!

Possible(((Surgery date changed multiple times – final date is February 4th, 2016 in San Francisco, CA)))

Wow, I can’t believe I finally have a date! This all seems so unreal to me. I was just sitting down relaxing before bed and realized I had a missed called from an unknown number as well as a voicemail. I listened to the voicemail and it was Kelly from Dr Crane’s office. I was shocked because it was late – a few minutes before 10pm (I live on the east coast so there is a 3 hours time difference). I texted my buddy to let him know (since the two of us are having surgery the same week, we need to schedule together) then I gave her a ring back.

Kelly informed me that they were beginning to go through their lists of tentative dates that people had requested and are finally booking people for actual dates now that they know which days the microsurgery team will be working (Tuesday’s and Thursday’s). The only factor that is still up in the air is that even though Dr Crane is in-network with my insurance, they don’t know which insurances the actual surgery center is going to be in-network with just yet. They don’t anticipate it being different from the insurances they are in-network with in San Fran, but won’t know for sure until September or October. This has me feeling a bit nervous, but I’m choosing not to worry all that much about it. I’ve gotten to the point that I really do believe that things are going to work out, one way or another. Worst case scenario I will have to make a case for a coverage exception at a surgery center that is out of my network. ABSOLUTE worst case scenario, they deny it and I end up having to go to Dr Chen in San Fran. Although I feel the most comfortable with Crane (granted I haven’t met Chen), I would be fine going to Chen at this point if it came down to it. The main reasons being because I trust Crane’s judgement. It’s just that I prefer Crane as well as the Austin location.

I ended up patching my friend in on 3-way calling and we settled on February the 9th and the 11th. Kelly also started to talk a bit about pre-op appointments. So Crane isn’t around on Monday’s which means that pre-op for the surgery on Tuesday the 9th would need to happen either on the Friday before the surgery or the morning of. Personally, doing pre-op the morning of  just feels a bit rushed to me. Luckily, my buddy is totally fine with it, so instead of getting into town 5 days before surgery, we can just arrive a couple days before. He will have his phallo done on Tuesday the 9th and I will go on Thursday the 11th.

Kelly said that the surgery packet/paperwork will be mailed out to us 4-5 months before surgery. In the meantime she will be working on finding resources for folks while they are in the area – such as lodging, pharmacies, stores, transportation etc. I was able to find out that the address of the new office will be: 801 West 38th Street Austin, TX  and the hospital is going to be: Forest Park Medical Center. I am still a bit confused on the address of the surgery center though, because from everything I’ve Googled it looks like it’s in Round Rock, TX  which is about 20 minutes outside of Austin. This is confusing because Kelly told me the surgery center is less than a mile from the office. I’m going to have to confirm the address with her.

In the meantime… I HAVE A SURGERY DATE!!! Really, this just doesn’t feel real. I don’t know that any of it WILL in fact until I’m very much post-op. Because I never thought that I would get here, a small part of my deep inside feels like it’s just waiting for something to go wrong and snatch this dream away from me. I felt similarly in the time leading up to my top surgery. I was really anxious that my dreams would be dashed and something would get in the way. For anyone that’s reading this and feeling like this will never happen for you, PLEASE know… I was you. This was a distant dream that I truly didn’t believe was meant for me – money being the main factor that rooted me in that strongly held belief. But the truth is that this is a medically necessary procedure and it’s being treated as such more and more with each and every day that passes. If this is something you need, YOU HAVE TO BELIEVE, this will indeed happen. Then, go out and MAKE it happen. It’s a powerful life affirming experience when you breathe life into your dreams – no matter what the dream is. That experience has the power to INform and TRANSform the rest of your life.

“The secret to change is to focus all of your energy, not on fighting the old, but on building the new.”  ~ Socrates

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United Healthcare Insurance Update

I found out some REALLY positive news yesterday! I have an amazing HR contact person that has helped me a great deal in finding out info on policies as well as advocating for me. I hadn’t reached out to her since I last had UHC back in 2012. Although my insurance isn’t active yet (it will be another month or so) I decided to reach out to her to see if she was even still working with the company. SHE IS!!! I checked in with her because last I knew the UHC policy I had was offering trans inclusive coverage with a 75k cap. I didn’t anticipate this being an issue until I spoke with Katrina back at the beginning of the year. She informed me that even though Crane quotes patient’s paying “out of pocket” at around the 90-100k price for surgery, this price is GREATLY reduced in order to make it “affordable” to people out of the US and folks within the states that don’t have insurance. But that the full price of the surgery is actually multiple 100’s of thousands of dollars and that even a surgery like top surgery might be like 7 or 8k “out of pocket” would be like $60,000 – $70,000 directly through insurance. So I asked her what cap would be acceptable and she told me there couldn’t be one… I was worried about exactly how this was going to play out with UHC. I could have contacted my HR person months ago, but to be honest I was really afraid what answer I might get about the cap and figured since I didn’t had the insurance back yet, if I did find out they still have the cap, I wouldn’t be able to make any appeals until I had coverage anyway. So for that reason I put it off. However, I finally asked yesterday about the cap and if it still existed and she said there is NO CAP!!! and that actually she didn’t even remember one existing. I’ll have to check my notes about all that because I believe is there was a cap 3 years ago. Regardless, there isn’t one now. So no dollar amount cap, plus trans inclusive coverage, plus In-Network surgeon is really the best scenario I could ask for.

When I received her email I was actually kind of stunned. I thought to myself: “what would it be like for this to actually be an easy process of getting coverage?” For soooo long I didn’t think insurance coverage would be something I would have, and granted I’ve lived through many years of not having inclusive coverage. Then even finally having coverage a few years back with UHC, I worked tirelessly for months trying unsuccessfully to figure out issues concerning an “out of network surgeon” (Meltzer at the time). Still though, THIS process happening now feels new, separate even from prior attempts and it’s going smoothly so far. I am equally parts grateful and equally parts proud of myself for manifesting this reality. Having this coverage did not come without intention. Last year I set very specific goals for myself and have truly hit the marks that I aimed for, each and every one. I am reminded that I am reaping the rewards of my hard work, focus and dedication and achieving my goals. Although this particular part of the process is feeling easy at the moment (health insurance specific), the reason why it’s an utter shock is because it hasn’t been easy getting here… But that isn’t important – what’s important, is that I got here.

On freak outs, feeling frazzled, and finally, finding my way back…

The past 2 months have been a whirlwind of emotion, anxiety, and stress. I believe a lot of the stuff that has come up over this time, as hard as it was to go through, was needed. I feel stronger, granted I also feel emotionally drained from this process. But I’d rather go through as much of the psychological processing that I can of this decision while I’m still pre-op. I feel strongly about needing to tango with every uncomfortable feeling I have that comes up surrounding this surgery. I need to game it out in a way that, although might bring up really difficult feelings, as well as fears, will only serve as a tool in preparation for my outcome and the ensuing new dynamics that are sure to come as a logical part of such a major physical shifting.

For me at least, this process has brought me back to what it was like in the beginning years of transition. The examination of the body, standing in front of mirrors while trying to image changes, lots of introspective thoughts, and unfortunately a sense of finding it hard to just exist in the present moment (wishing surgery was sooner). This annoys me, I feel self-absorbed at times in this process, but I understand and accept that it is time that I need to take with my body to “leave no stone unturned”. This is a way of looking at things from every perspective, from the fantastical to the downright morbid.

Two questions keep popping up in my mind? What do you really want? and What are you willing to risk to have it?….

Fear and anxiety were the strongest feelings I experienced over the past weeks. In the midst of the haze those feelings brought on, I actually lost sight of the main reasons that all along have led me to this point of seeking to make adjustments to my body. In order to allow my spirt to feel “flush” in this physical form there are certain functions that I am seeking from surgery, not merely aesthetic. I’ve known very well that meta, although a perfect option for some folks, just can’t give me the form and function that phallo can. Nevertheless, I’ve spent weeks now trying to convince myself that I could possibly “live” with meta. In this twisting of views I only honed in and focused on the things that meta offered and continuously tried to ignore all that I would be “sacrificing” in choosing this option over phallo as well as focusing on the risks and challenges that come with phallo. I think I justified this process by telling myself: “I’m not burning any bridges, so pursuing phallo in the future will still be an option if need be”.

The truth is, that, well, I’m scared… Yeah, this is a scary process. Honestly, I don’t want phalloplasty. Seriously, there is absolutely nothing about this surgery that I want. Who wants surgery?… But I know that it’s a step I need to take.  This is my evolution, a reconfiguration, through affirmation, my intention born of deep realization… the transformation.

This need isn’t going away. But if I like, I can choose to mask it for a bit by initially pursuing meta. I will try to show myself compassion if that is what I feel I need to do. However, I fear even in the best scenario I will be on to pursuing phallo a year or two from now. Worst case scenario, I see myself experiencing severe depression post-op (meta) because I waited so long for surgery and still haven’t made enough of a change to feel comfortable and be functional in the ways that are deeply important to me – ie: the ability to wrap my whole hand around my cock, feeling the weight and movement of my penis, being able to pull my penis out of my pants to urinate, achieving deep penetration with a partner. These are things that I will experience only, ONLY if I have phallo. This is what I need to remember.

I just want to point out that I am listing these things and talking about this process not in an effort to convince anyone to be swayed in any specific direction for lower surgery. I’m mentioning them 1.) because this serves as a reminder to myself when I’m feeling anxious about surgery, but 2.) because I think it’s important to talk about how we can get caught up in fear, anxiety and perspective and lose sight of the real reasons we’re seeking to make changes. I just want to be honest about what I’m going through. This isn’t easy, and I haven’t even begun the actual surgery process which is going to be all sorts of difficult for MANY reasons, physical as well as emotional and psychological.

In the meantime, this is what is helping to offer me some peace of mind: 1.) reading experiences that other guys have gone through such as blogs, Facebook groups, and Yahoo groups  2.) having amazingly supportive people in my personal life that can listen and offer support while holding my emotions as valid and not pushing me in any direction or pushing their personal attachments to my body being or not being any particular way, on me  3.) reaching out to other men who are post-op and asking questions  4.) journaling  5.) checking in (and when necessary commiserating) with a friend that’s at a similar point in moving forward with surgery… You’ll notice that 4 out of 5 of these things are about community and being supported and truly seen by another human being. Something I think we all so desperately need in life. Trans or not. Seeking surgery or not.

Today I feel grateful to have found my way back to some sense of sanity – in that the fear and anxiety have been greatly soothed. I can’t say that I won’t experience this again in the next 8+ months before surgery. I keep trying to remind myself that this is uncharted territory. Although it is a bit similar to top surgery, the intensity is amplified about a thousand times. Not to mention that even 10 years ago it was much easier to find other guys who had already had top surgery. To go to an FTM support group and have 10 guys take their shirts off and be able to see results up close, in person, and have them embodied by the whole person that lives and breathes and animates that body every day is just a totally different experience than looking at lower surgery photos online – it’s a night and day difference. I feel incredibly grateful that I’ve been able to attend 2 lower surgery “show and tells” at the Philly Trans Health Conference. To say that that experience was EPIC for me is an understatement. I hope to be able to give back some day, it’s so important and desperately needed within the community. I know that I’m just one of hundreds of incredibly grateful men for this gift of knowledge and witnessing of the beautiful bodies and souls that courageously have shared and have yet to share.

Another BIG Milestone!!! (Health Insurance)

I found out last Thursday, April 16 that I am receiving the promotion that I’ve been aiming for in order to be eligible for health insurance through my employer. I knew this position was opening up about 7 months ago and I made it my TOP PRIORITY to prove to all my managers that I was the only person for the job and my efforts have paid off. My boss confided in me that even though she still has to post the position, that I will be receiving the promotion!

The company I work for only gives managers and department “leads” full-time positions and unfortunately they only offer healthcare benefits to full-time employees. This wasn’t always the case. A few years back when I found out that I was working for a company that had trans-inclusive healthcare coverage, the company announced that they were no longer going to be offering healthcare benefits to part-time employees. Before I was able to make surgery happen, I lost those benefits.

I’d rather not say where I work,  but I will say that our company has continuously received a top rating of 100% from the HRC Corporate Equality Index for many years and are listed within the Index. If you have not checked out the Corporate Equality Index, I HIGHLY suggest that you do. A few years back I stumbled onto the fact that I was working for not one, but TWO employers with a 100% rating (that rating equates to trans inclusive coverage, INCLUDING surgeries). It was finding this out that made my plans for surgery feel realistic and feasible. I think starting that conversation with an insurance company before you know you have coverage (and even when you know it already exists) can really be an anxiety inducing, nerve rattling experience. For me it just feels downright embarrassing even though the person on the other end of the phone doesn’t know me personally and will never meet me. But it’s still an awkward thing to call up and ask about coverage or start the process of getting pre-approval for coverage. So I can understand why so many folks are hesitant to do it, and might not even realize they have coverage to begin with. So many of us just assume we won’t be covered, I know I did.

Anyway, I guess I just wanted to document this. I was crazy relieved when I got this news last week. It’s been a huge weight off my shoulders, even though I’m sure there are plenty more obstacles to come. I was going to be pursuing coverage through MassHealth as a backup plan if I didn’t end up getting this promotion. Either that or I was going to look for a full-time position elsewhere with health insurance since all Massachusetts health plans now need to cover trans-related care. The only issue with MassHealth is the amounts at which they are reimbursing which is the true issue…

To be honest I feel a bit guilty for not pursuing coverage with MassHealth because I know there are a lot of people in this position that are on MassHealth and need surgery. I would have liked to have been able to make that path a little easier for others to come, but I feel it would be unwise for me to forfeit this golden opportunity (that I seriously worked my ass off for) that is going to afford me trans-inclusive insurance and has Dr Crane listed as an in-network provider.

Even though I’m not making the process of using MassHealth any easier for folks, I hope that I can at least be a bit of inspiration for people to know that if you want/need this, you can for sure obtain it. I started from the “end” and have worked my way backward. I don’t know if that makes any sense but I started from the point of (1)employers listed high on the Corporate Equality Index, then went after the (2)position that would get me the (3)insurance with that employer. I just sat down and started asking myself the questions that were truly going to get me somewhere. I KNEW guys were having these surgeries covered by insurance and thought to myself: “This isn’t a RARE thing – this isn’t unattainable. These guys with coverage aren’t just lucky, there isn’t anything all that unique about their situations that block me from also making it happen for myself”… It’s the naysaying/negative mindset that will get you trapped into mistakingly believing that your life and your future must be different than it can be! There is so much potential there, you just need to use all your focus and attention to find the path that’s going to lead to where you need to go. I truly believe that this process has a lot of power in my life. Not just the fact that I need lower surgery for a better quality of life. But the fact that this is making me realize that I am able to manifest things in my life in a really big way. Things that I never thought were meant for me… If I can do this, I know that I can really go after and achieve whatever else in my life that I desire and believe in. It might sound corny, but it’s true for me.

Dr Loren Schecter (New York Presentation & Mini-Consult)

Loren Schecter PhotoI recently attended Dr Loren Schecter’s presentation in New York that was made possible by the non profit organization: CK Life. Being that I live in MA, this was a bit of a drive for me, but it felt worth it. Dr Loren Schecter’s name has come up more and more over the past few months and he was on my radar as being a surgeon whose waiting list is around 6 weeks. That alone was a huge driving force for needing to at least hear him speak and get a feel for if he would be an option that I was comfortable with. Although his presentation covered the gamut in terms of MTF and FTM procedures, because of the nature of this blog I am only going to be mentioning anything related to phalloplasty.

Dr Schecter was available for free mini-consults prior to his presentation. I actually attended with a buddy of mine and we are planning on scheduling our surgeries a couple days apart so we just did our consult together and that really allowed us to not miss any of the questions that we had. That, as well as making a list of questions (and continuing to add to it) WELL in advance is really key to utilizing your consult time in the most efficient way – I can’t stress this enough.

So let’s get right to it. First I will document the actual consultation and then give a rundown of his “powerpoint” presentation and share my overall impression and experience of meeting him…

Just like my Crane consult, this is not word-for-word what Dr Schecter said and I am in no way quoting him. The following is a recap to the best of my ability to share with you what I remember him saying:

Me: Tell me a bit about your background. Where did you learn to do phallo and how long have you been doing them?

Dr Schecter: I worked with the Serbia and Belgium team, I started doing phalloplasty back in the 90’s.

Me: How many have you done at this point?

Dr Schecter: About 25 or so.

Me: So you’re a plastic surgeon and a micro surgeon, is that correct?

Dr Schecter: Yes

Me: So you bring in a urologist to do the UL (urethral lengthening)?

Dr Schecter: Yes, we have a great urologist that we work with, and also a reconstructive urologist that we can bring in if we need to.

Me: What are your complication rates?

Dr Schecter: They are about 40%

Me: How are those rates effected by one’s choice to either have or not have a vaginectomy? How much higher are complication rates if you don’t do a vaginectomy?

Dr Schecter: You mean with urethral lengthening? Because we only do UL with vaginectomy. If you don’t want a vaginectomy then UL is not an option.

Me: Do you perform a VY scrotoplasty?

Dr Schecter: I don’t perform that exact scrotoplasty technique. What we do is very similar in that it brings the tissue forward and creates a hanging scrotum but we don’t call it VY.

Me: What is the positioning like for the arm flap for RFF? Is the urethra formed from the skin on the underside of the forearm?

Dr Schecter: I don’t have my templates with me right now but essentially the flap is harvested starting on the underside of the forearm along the pinky finger side of the arm (ulnar). That is the tissue used for the urethra, and the flap continues almost all the way around the arm. The skin along the arm where your thumb is (radial) will end up being the “top” of the shaft (ie the skin that would be most visible when looking down at your penis). The skin on the top of the arm would be wrapping around to the underside of the penis.

Me: Have you ever had any total phalloplasty flap failures?

Dr Schecter: No we haven’t. But sooner or later it could happen. I do all sorts of flap surgeries in my work that are not phallo-related and I have seen flap losses happen, but we’ve never had a phallo flap fail.

Me: Where is the incision line on the penis for the RFF phalloplasty placed?

Dr Schecter: It used to be on the top but now we place it on the underside. ALT incisions are on the top and the bottom.

Me: Do you ever do full thickness skin grafts to cover the flap site?

Dr Schecter: We sometimes have, but we’ve seen enough promising results from using a combination of Integra and a split thickness graft that we usually don’t do full thickness grafts. Because it becomes an issue of then where we get that skin from.

Me: I noticed that the hospital stay of 2 weeks post-op is longer than other surgeons are quoting – Can you speak to this?

Dr Schecter: 10-14 days. It varies person to person. We do a scope of the urethra before you leave and we also do the secondary surgery that places the split thickness skin graft on the donor site, because using the Integra requires a separate procedure a week after the phalloplasty.

Me: Do you anchor the penile prosthesis to bone or is it stitched in place?

Dr Schecter: We do a variety of methods. Sometime we anchor it to the bone other times it’s sutured in place.

Me: I’m worried about having a really skinny penis because of how lean I am, have you done phallos on guys my size and if so how were their results in terms of girth?

Dr Schecter: It’s actually beneficial if someone is lean because it makes the surgery much easier. Sometimes with people that are on the heavier side we are looking at needing to add grafts to be able to completely close the phallus. In terms of girth the penis still ends up being a reasonable size.

Me: When you de-glove the clitoris do you leave the erectile tissues?

Dr Schecter: Yes, we are only removing a very thin layer of skin.

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That was pretty much all the questions that I can remember asking in looking back at my notes. I didn’t write down my buddy’s questions but these were the bulk of them. As for the presentation itself, much of the information that was covered was not phallo specific, understandably. He covered most ALL of the procedures that he offers to women and men as well as took time to do some trans 101 and just talk about his practice in general. This makes sense because there was a very wide variety of people attending the presentation including some healthcare professionals. He did show a few pictures of RFF and ALT and I think he might have shown an MLD but I can’t recall. He did have a graph that layed out the pros and cons of each method give them ratings/stars in terms of what donors site offers the best sensation, girth, size, rigidity and so on. This was helpful to see, so if you consult with him you might ask to see this if you are still on the fence about which donor site is right for you. Also it’s worth mentioning, that if you are HIV+ or have an STI he is still able to operate. However, folks have to be on medication or have their conditions under control. If you have any open wounds at the time of your operation this would be a contraindication to surgery.

My overall impression of Schecter is a positive one. I know that public speaking can be awkward and that is not always the realm in which all folks exceed but he seemed well spoken and compassionate.

THE PROS (for me personally): His waiting list is a TINY fraction of what Crane’s is. You’re looking at MAYBE a couple months out from the time of your consult. He also refers people out to a local electrolysis technician that is familiar with his procedure and the phallo “template” that he uses and typically the hair along where the urethra will be can be removed in one session. Just to clarify, the outside of the penis would still grow hair if you currently have hair in that area already. This is strictly a strip of skin used for the urethra where the hair would be removed. Also, another HUGE PLUS is that because he is on staff at a hospital and not in a private practice it makes using insurance with him MUCH easier. Even if you have a state funded low-income type of insurance, as long as you get the go ahead from your insurer, reimbursing the hospital at a much lower rate is not going to be an issue in the same way that it is with someone like Crane who has a personal practice with a lot of overhead. I was told today by Katrina (Dr Crane’s nurse) that Medicare has offered as little as $1,100 for phallo, it’s truly laughable what Medicare and Medicaid are willing to pay out. So if you have this type of insurance and are looking to move forward with surgery sooner rather than later, Dr Schecter might be your guy!!!

The Cons (for me personally): I’m probably 90% positive that I don’t want to have a vaginectomy. It’s a procedure that I don’t feel like I NEED at this point even as someone who practically never engages in anything penetrative. I want the option of changing my mind on this procedure up to the last minute. There is a chance that in the next 10 or 11 months leading up to surgery that I might change my mind and decide: Sure, get it out while you’re down there. But I’m fairly certain that I won’t. This wouldn’t be an option with Schecter. So really for that reason alone, I have to admit, my brain kinda shut down in terms of considering him as an option for myself… The other fairly large factor in my decision process even if not having V-nectomy was an option with him, was that a complication rate of 40% felt a bit high for me… I did however think his work looked solid, however, I would personally want a much more defined glansoplasty. This could totally be a personal choice that the good folks in the photos chose for themselves, so it’s hard to know if that’s just his technique or a personal decision. Also, his cut seems to be one that is a very clean even circle around the tip of the phallus where I would prefer a more comprehensive cut that looks different towards the frenulum than it does on the top side of the head of the penis – rather than being uniform all the way around. Again, these are my desires for glansoplasty and not everyone’s, he very well might offer this if asked. And let’s be honest, although glansoplasty has the potential to add a lot of aesthetic appeal to a phalloplasty, it’s fairly minor in terms of the “whole package” and doesn’t impact functionality at all. So even if you don’t like his glansoplasty technique it would be easy enough to have someone else do it or ask if he would be willing to perform a different technique that suits you better.

Lastly: I won’t put this in the cons list but I will add it as just general “room for growth” after having seen his presentation and spoken with him. It’s very clear to me that Dr Schecter is a compassionate man and is interested in helping folks like us mend these delicate and sensitive parts of our bodies. However, I did notice that some of the language he uses could be off-putting to some. I noticed that he referred to a completed meta and talked about it using the word “clitoris” where I feel like he really should have been saying “penis”, “phallus” or even “glans”! Although I recognize that not all people that have top surgery are male identified, and not everyone that is *trans male is “cock identified”, I’m willing to bet that far more ARE than ARE NOT if they are seeking a reconstructive PENIS surgery… I’m sure that someone mentioning this to him would be all that it would take to help shift the way he approaches speaking about these body parts. I just know that if I was post-op meta and my surgeon was calling my penis a “clitoris” I would be devastated! There were some other things he sited during his presentation like that far more men than women seek these surgeries and although I think I knew what he was trying to say (more transwomen than transmen) I think I might have either said that or: “more people assigned male at birth than females”. Again, these are REALLY subtle nuances to most people, but I think if he sees himself expanding and offering care to more trans folks, he would benefit from a little more understanding with how we speak about our bodies and just the general language that tends to me more respectful and understanding of the ways we relate to our bodies. All that being said, I freely admit to being a virgo and a bit overly critical at times. So take this as you will – He’s a great guy with good intentions.

I think Dr Schecter is certainly a great option for some folks. Choosing a surgeon is a REALLY…PERSONAL…DECISION… and you have to go on your gut instinct for who will be most able to meet those very personal needs. Sometimes this process is like shopping for jeans – they usually look great on the mannequin, but upon further inspection and a more personalized quick trip to to the changing room you immediately feel any areas of discomfort and need for other options. OR you run to the check out line eager to pay and bring home your new favorite jeans. The latter was my experience with Crane. The jeans looked great on the mannequin, the fitting room experience was shockingly wonderful, and now I’m just in that dreaded long line with 50 people ahead of me hoping that my credit card won’t be declined… So, at this point, I’m still moving forward with using Dr Crane as my surgeon. However, if for some reason my plans A, B and C with health insurance don’t allow for me to have him do my phallo, I might give Schecter another look.

Moving Forward w/ Health Insurance Coverage for Phalloplasty

think do try try again succeedThis is proving to be such an interesting (read: challenging) process in trying to get coverage with my current insurance (that will likely be changing in the coming months). I currently have CeltiCare which is through MassHealth/Medicaid. I spoke with Katrina, Dr. Crane’s nurse last month after paying $150 for them to verify my insurance. I already knew that my insurer covers 100% of the procedural codes, since I had checked. However the issue is with the rate, or amount of money that Medicaid typically reimburses providers, which is a minuscule amount. Last month Katrina told me that they would not take my current insurance because of this reason, and I didn’t really push the issue. I essentially felt defeated (not because of Katrina) because this process is so emotionally draining and I figured WELL, I guess I’m going to have to go with my Plan B. However, I am interested in pursuing this option further before I move on to using another insurance. I have a couple months to kill in the meantime and I feel like even if I’m mostly likely going to use the insurance I end up getting through my employer, that pushing this issue with Medicaid can only serve as a catalyst for awareness and change for many others that are currently or will be pursuing phallo (or any surgery that Mass has no providers for at this time).

I received a call from Katrina today. She confirmed that my hormone letter had arrived and that she would make sure it was passed on to their scheduling person. I had no idea that this kind of letter was even needed until the time of my consult when I had already provided them with my two letters for surgery and then I was asked to also get a letter stating that I’m on hormones, what my start date was, that I’ve been taking them as directed, blah blah blah. I also had them add in for good measure that they supported my decision to move forward with phalloplasty and that it was a medically necessary procedure. This wasn’t asked for but I figured it couldn’t hurt.

I called CeltiCare today and told them that I needed to have a covered surgery for which I knew there were no surgeons in Massachusetts or even in New England and that I needed to start the process of getting approved for a NETWORK DEFICIENCY. These seem to be the key words to mention. He asked what the surgery was and I told him phalloplasty. He asked what kind of surgery that was and I said that it is a transgender-related surgery. Cue awkward silence……… :o) Oh well. He said: “Um, let me check to see if that’s even covered.” I said: “It is, I’ve checked all 17 codes. I think what I’m really going to need is a case manager to help me move forward, is that something you can help me with?” He said: “Yes, let me work on that for you.”

All in all the phone call was not too bad. I know for me, just working myself up to make these calls can take a lot. Sometimes I’ll think about making a call for weeks (or longer) before I ever do. It can be tough because I know I just expect it to be awkward and uncomfortable. And I just accept the fact that unfortunately I’m going to know a lot more about what I’m talking about than the person that I speak with, and I don’t even know a lot about health insurance… I’m sure that sounds arrogant, but the truth is folks just don’t know the reality of these surgeries or the availability (or rather lack thereof) of surgeons. It can be frustrating trying to get information and help from someone who you know isn’t really clued into the facts, but there’s really no way around it that I know of. So at this point I am waiting to hear back from a case manager and I will update when I know what the next step is.

Phalloplasty Consult w/ Dr Curtis Crane

Dr Curtis CraneAt the beginning of this month (January 2015) I had a surgical consultation with Dr Curtis Crane to discuss my options for and his methods of phalloplasty. I’ve been researching lower surgery options for well over 10 years but I’ve only had one other consultation before now (Dr Toby Meltzer in 2013) and it was actually when I was considering doing meta as a stage one to see if it would be enough for me since it doesn’t “burn any bridges” in terms of moving on to later needing phalloplasty.

Just a heads up, this is going to be a VERY long post that covers EVERYTHING I spoke with Dr Crane about. I had literally pages of questions for him and I am happy to be able to share the information that I was able to ascertain because I know it was really crucial in figuring out which surgeon was the best fit for me and what procedures made the most sense given my desired outcome and personal preferences.

SETTING UP THE CONSULT: Back in late September 2014 I contacted Crane’s office seeking information about phalloplasty, consulting with him, and what his wait times looked like. His office took about 3 business days to get back to me, which felt reasonable for someone just seeking information. I was emailed new patient intake forms and was requested to fill them out and send them back. This same email listed out of pocket costs for phalloplasty ranging from $68,000 – $78,000 depending on the donor site of the flap and whether or not urethral lengthening is required. Also, if one requires a penile implant that would be a separate surgery that would cost $16,000 out of pocket.

I did inquire about both RFF (Radial Forearm Flap) as well ALT (Anterior Lateral Thigh Flap) phalloplasty and was informed that the BMI cutoff for the ALT phalloplasty is 35. If you desire urethral lengthening extended to the tip of the phallus and have a BMI higher than 25, you may require an extra stage of surgery. Hysterectomy must be performed at least 3 months prior to phalloplasty. Consultations with Dr Crane are $200 and can be done over the phone or in-person. You can make this payment by check or via PayPal. A phone or in office consultation is required before scheduling surgery.

I also asked about insurance coverage: “Dr. Crane is currently only contracted with United Healthcare, Anthem Blue Cross, and Kaiser Permanente as in network providers for bottom surgery. Our office is willing to work with other insurance companies, but first we need to verify that your insurance company offers trans benefits and that if a lifetime maximum exists, that surgery will be covered. If Dr. Crane is out of network with your insurance company, you will be required to pay the self pay surgeon’s fee up front prior to surgery and our office will submit for reimbursement with your insurance.”

The Consult: I chose to do an in-person consultation because I felt like I wouldn’t be able to get clear answers on the best graft site by just speaking with him over the phone. I am very lean so I knew I would be a great candidate (with my low BMI) for ALT if I wanted it but I needed to gather that information face-to-face. This just felt like too big of a decision to make over the phone. I needed to look into the eyes of the guy who was going to potentially do this surgery that I’ve been needing since I was 7. So I arranged for a quick trip out to San Francisco (I live on the east coast) with only two nights stay in the area at a Youth Hostel to keep the costs low ($30 per night). I booked my consult in the beginning of October 2014 and my consult was the beginning of January 2015 – It was just a hair over a 3-month wait period.

His office is located across the Golden Gate Bridge so I had to take a bus out of the city and then had under a 20 min walk to his office from the bus stop. His office has a relatively small but comfortable waiting room that had a couple other young transguys in it that were going over paperwork and waiting for appointments. I arrived about 5 minutes early and waited about 20 minutes in the waiting room and then another 40 minutes once I was called back and brought into an exam room. Oddly enough I felt good about waiting a bit longer for my appointment. It made me feel like he was giving his other patients the thorough time that they needed with him and would eventually get to everyone.

I had a very long list of questions for Crane so I’m just going to list the questions and then list what his responses to them. These are not all exact quotes from Dr. Crane, just the closest that I was able to remember in documenting our consult… Ok, let’s get to it…

Me: About how many phalloplasty have you done?

Dr. Crane: More than 100. I think I have most in the country right now, by A LOT.

Me: What are your thoughts on leaving the frontal opening verses closing it with a full vaginectomy and what are the complication risks involved with that and having full urethral lengthening?

Dr Crane: If you leave the vagina it’s fine, I think I’m the only guy in the country that will leave it and still do urethral lengthening. I’ve done it that way a lot. However, you have an increased fistula rate. Fistula is an opening from the inside of the urethra to the outside of the body. It doesn’t make you sick it doesn’t cause an infection, it just means you need another surgery to repair it if it doesn’t heal on it’s own. I’d say the risk of fistula WITH vaginectomy is around 10%, withOUT vaginectomy it’s closer to 25%.

Me: So worst case scenario you need another surgery, but in the end the fistulas are always able to be repaired, right? Have there been any cases where you haven’t been able to repair the fistula?

Dr Crane: No, I haven’t had that yet.

Me: Would keeping the frontal opening affect the positioning of the phallus? For example, would it need to be placed lower on the body if you did not do a vaginectomy?

Dr Crane: No, it wouldn’t affect position.

Me: So the only real visual difference would be in how the scrotalplasty is formed, right? Like it couldn’t be in one sac if there was no vaginectomy?

Dr. Crane: It would look the same. I make it the exact same way with or without vaginectomy. Maybe just a bit smaller so that I could close all the surrounding tissues.

Me: So you’re opening a new practice in Austin, Texas?!

Dr Crane: Yes! The end of this year. I’m bringing in a new guy, Mang Chen, he’s an amazing surgeon who did the exact same fellowship as I did. This year alone we have 150 cases booked already where I am teaching him my technique – where I will be working with him. Once I have him good and trained and believe me I’m not going to leave my baby in the hands of just anyone, he’s going to stay here (San Francisco) and I’m going to move to Austin… My goal in say 40 years when I’m on my deathbed, I want to be able to look back and say: I helped to make it possible for a transgender person to never have to leave their state for healthcare. I think that’s reasonable. The first goal was to have a successful practice. I’ve got that here so then I decided let’s go to the most conservative state and the most liberal place in the state (Austin) and make transgender care mainstream and from there it’s just going to propagate… And it doesn’t have to be all “Brownstein & Crane’s”, I just want this access for the community and this is the only way I see that happening. I could stay here in SF and just hide away in a successful practice and never promote anything. But since opening this practice now every ER doc, and family practitioner, and endocrinologist in the areas knows about what I’m doing. It happened here, it’s gonna happen in Austin. I know some people are worried about the change in the teams but really phalloplasty (and other surgeries especially lower specific) are not just a one man show. I’m the name on it but I’m only 33% of the team – the other 66% of the team I’ve been working with will still be here in SF and I will be training Chen to take over that 33%. So if you need to have me as a surgeon (starting next year) you can come to Austin and you’ll have that same 33% and the other 66% will be all people I’ve trained, or if you want to have surgery in SF, the same micro surgery team will be there and the other 33% will be Chen who is an amazing surgeon. Everyone has to start somewhere – in one year his name will be just as well known and in demand as I am.

Me: So what does your scheduling timeframe look like right now?

Dr Crane: November 2015 here in SF w/ Chen and myself, after that I will be booking the end of December 2015 or absolute latest January 2016 in Austin……. Are you thinking forearm, thigh???

Me: I’m still up in the air about that. As far as priorities go, sensation and urethral lengthening are neck and neck for me. However, I do want an implant. Being able to have penetrative sex is an absolute must for me and so I’m worried that maybe ALT is able to maybe sustain an implant a little better than forearm, would you say that’s true?

Dr Crane: I wouldn’t say that’s true. Well, the ALT is very girthy. If you are someone that wants a 6,  7,  7.5 inch phallus, then definitely ALT.

Me: I want 5 inches MAX!….. I have some burns on my forearm from when I was younger; I know they fall along where the tissue for the urethra would be harvested would that interfere with the integrity of the urethra?

Dr Crane: Those won’t be a problem.

Me: Does the forearm graft have to start right at the wrist or is it possible to go back a bit away from the wrist.

Dr Crane: You would shorten your length, if you wanted 5 inches we could come back a bit.

Me: *Touching my wrist* So this would be the base of the penis or the tip?

Dr Crane: The tip

Me: So, sensation differences between forearm and thigh?

Dr Crane: Forearm is better.

Me: As far as functionality of the donor arm, I’m wondering long-term what the functioning is like. I know initially, it’s going to be rough going but do you think that people tend to get 100% functioning of their arm back?

Dr Crane: Yes! I don’t know of someone who hasn’t. It’s like 4-6 weeks. Because we don’t take any muscle we just take skin and fat.

Me: Do you ever use Integra?

Dr Crane: We don’t because 1.) it really jacks up the price of the surgery 2.) it requires a separate surgery 3.) we take a thick enough split-thickness skin graft that it’s our opinion (mine, the microsurgery team and the Buncke clinic) that it doesn’t actually help at all and just raises costs and requires more surgery.

Me: So it seems like from what I’ve seen that maybe folks with a higher BMI have a bit more noticeable indentation on the donor arm from the graft – Would you say that it’s accurate to assume that since I have very little body fat my indentation might be less noticeable?

Dr Crane: Yes. So everywhere on your body you have skin, fat, muscle. What we take to make the phallus is skin and fat and then we take a split thickness graft (skin, no fat) and place that on the donor site. So it’s like skin right on muscle, then transitions to skin, fat, muscle. So if you have an extra centimeter of fat you’re going to have a centimeter higher divot – you won’t have to worry about that since your so lean.

Me: Ok, so then my worry becomes: Am I going to have a very thin penis?

Dr Crane: You would end up like this ***puts thumb to index finger in a cupped grasp shape with thumb and index finger a bit away from one another*** which seems reasonable for what you expressed in wanting in a 5 inch phallus.

Me: So, pre-lamination of the urethra?

Dr Crane: It’s like, the WORST idea! Monstrey, in Belgium, he’s done 600 phallos – He realized pre-lamination was horrible 10 years ago. I know Salgado is using this as a selling point but he’s a plastic surgeon, he’s never done reconstructive urology. I did 7 years of urology and any urologist will tell you pre-lamination is NOT a good idea. It hurts people and it’s not a standard of care. Unfortunately there is a lot of bad information spread among the community via blogs and there isn’t anything I can do about that.

Me: When you repair a fistula, from where are you taking those grafts?

Dr Crane: I usually do an adjacent tissue transfer of vascularized tissue and cover up the fistula.

Me: Do you ever use vaginal mucosa or buccal mucosa for repair?

Dr Crane: For phallo I don’t really ever use a graft. There’s enough vascularized tissue there that I don’t need to use graft. Vascularized tissue is always better than graft. When you take a graft from somewhere else and sew it in there is always a lot of scar tissue that builds up and really increases the risk of stricture, that’s why doing a pre-laminated graft is worse than using healthy vascularized tissue that’s attached to it’s own blood supply. You know how we take a skin graft from the leg and put it on the donor arm and it heals kind of gnarly? It’s because it’s a graft. Verses when we take all this tissue in a flap that’s attached to it’s own blood supply to make a phallus and it looks like regular skin. People look at the arm and think “burn victim”, but the phallus looks great!!! That’s the difference between a GRAFT healing WITHOUT it’s blood supply and a FLAP healing WITH the blood supply. It’s the same thing with pre-laminating a urethra. Every time you use graft you are just cutting out a piece of skin, slapping it on and crossing your fingers hoping it will reattach to a blood supply. When the blood supply is lacking there is a lot more scar tissue that builds up and it becomes thick like concrete, it’s really hard. So EVERYTIME graft is used it’s going to heal that way. Verses when you bring a blood supply with it like the RADIAL forearm, (it’s named that because of the radial artery) it heals great! So when you have people suggesting that it’s much better to use a graft, a pre-laminated graft… It’s just insane. Why are you going to build the most important functional part of this penis out of something that’s going to heal worse?

Me: Wow! That makes SO…MUCH…SENSE! Even though pre-lamination wasn’t something I was sold on, I was open to it if it truly was the best way to go and would reduce complication rates. I had been under the impression that this was a new technique, not something that had been tried long ago and tossed out because it hadn’t yielded a good outcome. I don’t see how I could pursue having a pre-lamination done after hearing that explanation – that was really informative……. As far as blood loss goes? Do people ever bank their own blood prior to surgery?

Dr Crane: I’ve transfused maybe 3 or 4 people out of 100 and those 3 or 4 were very early on in our first 15-20.

Me: As far as the insurance companies that you are contracted with currently – do you foresee those changing when you move to Austin?

Dr Crane: I’ll only add more. Because they don’t care what location I am in, they just look at the name.

Me: As far as the deepithelization/de-nuding/de-gloving of the clitoris, do people say that they still experience (although no longer a visual change in the tissues since they are inside the base of the phallus) the sensation of becoming erect? That sensation of growing and thickening is something that I would really hate to lose.

Dr Crane: That’s a good question, I haven’t asked. It would stand to reason that they would though because I leave all that erectile tissue. I only remove the thinnest layer of skin so that there is no sebaceous cyst that forms. But I specifically take the thinnest layer of skin, and leave all the erectile tissue and all the nerves just below the skin so that you have a really erogenous spot.

Me: The skene’s glands and bartholins glands, do you leave them intact?

Dr Crane: I leave them. I leave all the glands that I can so that there is some ejaculation.

Me: Do you do an Allen test to confirm if someone is a good candidate for RFF?

Dr Crane: Yeah, we can do that…. You know it’s like less than 1% of the population that has a bad one. ***Test showed positive signs for me being a good candidate***

Me: What’s the incision like for implanting the erection pump/rod?

Dr Crane: It’s real easy, I go through a previous incision that’s already healing at the base of the phallus – no new scars.

Me: What are you’re complication rates looking like for pumps?

Dr Crane: I’ve had about 2 infections, and 1 erosion. Pretty low, about 5%, maybe 10%.

Me: Do you wrap the pump in anything?

Dr Crane: Yes, it’s gets wrapped in a Gortex sheath.

Me: About how many years do you think a pump will last?

Dr Crane: At centers around the world that do free flap phalloplasty they say that a pump will last 3-5 years. The rod however, will last 10, 15, sometimes 20 years. For that reason most of my patients opt for the semi rigid rod because they don’t want more surgery.

Me: On an RFF would the main incision down the phallus be on the underside?

Dr Crane: Ventral, yes – AND for the ALT, as well. We used to do it for the top and bottom on the ALT because we had concerns about the urethra, but we made some adjustments and we were able to modify so that it’s only ventral.

Me: When you take a split-thickness graft (the one that will eventually cover the phallo donor site) typically the hair follicles don’t come with the graft, correct? Even though you said you take a substantial graft to cover the arm (for RFF) or leg (for ALT)?

Dr Crane: No, the hair stays on the leg.

Me: Can you construct a frenulum during glansoplasty?

Dr Crane: We always try, but it depends on how it scars and flattens out. We can control pretty much everything in the operating room, but the real complications come from how people heal. Sometimes we make a REALLY nice glans, and the whole thing is lost 9 months out. Fortunately that’s only about 10% of the time. Usually by 6-9 months if it’s still there then it’s gonna stay.

Me: If you want a REALLY well define glans, do you suggest waiting to do that at stage 2 with the implants?

Dr Crane: We’ve gotten really great results with doing it at stage 1. I’ll do it at stage 1 and then if someone needs a touch up, I’ll do it again. That way it gives me an opportunity to do it twice.

Me: So there’s no benefit to waiting to do it at stage 2?

Dr Crane: No

Me: What can you tell me about likelihood of shrinkage. Like losing length or girth?

Dr Crane: I’ve only had 1 patient really complain about that. When I looked at pictures though it looked the same to me.

Me: When you measure how long the phalloplasty is going to be, like I said I want 5 inches, do you measure right on the arm itself? I ask because I know depending on where you put a ruler on a penis be it along the top or underneath you get a different measurement.

Dr Crane: Yes, we measure on the arm.

…………

Well, that’s the bulk of what I can remember and in looking back at the questions I had printed out to ask him. I really wanted to go as in depth in possible for a couple reasons. First I know how important it’s been for me to get answers to these questions but sometimes when you hear other people’s questions you get answers to things you didn’t even think to ask and then those questions/answers will generate new questions for you all together. And it’s been my goal for myself to really research and look at this from every angle possible so that I am as prepared as possible and will have the least amount of surprises post-op. But also, I imagine it would be easier on Dr Crane (and any surgeon) if their consults weren’t filled with answering the same questions over and over. It seems like that precious consultation time could be spent on more personal questions that aren’t so overreaching and relate to everyone or a general technique that’s performed.

I hope this has been helpful to someone out there.