One of the most common questions I get is “How do you explain…”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; however, the response of “an insulin pump for diabetes” tends to end the discussion, as diabetes is a fairly universally known entity. Answering that you have CMTC often leads to more questions rather than resolving the discussion. So, to multi-task and additionally make some content for our upcoming project, my next few blogs are going to be a series on “How do you explain…” where I talk about how I address some of my visible differences and how I have grown in doing so.
How to explain… Laser surgery
I always feel like laser surgery is a bit of a loaded topic in vascular malformation spaces, first it’s a big choice for a patient and family to start the journey, next is weighing the pros and cons that come with any major medical treatment, and then there is the social pressure that exists both to not look different, but also a real emerging social media pressure that you are supposed to “love yourself” and if you change yourself, obviously you didn’t “love yourself enough” whatever that all means. Because of this, I am going to discuss the topic in two different ways: first, my experience deciding to go through with laser surgery and how that’s shaped the last 20 years and then how I actually deal with the everyday comments about it.
Laser surgery is always an interesting topic, because for me, after 20 years of treatments, the reality is, with the marks on my face, I have transitioned from the marks always being commented on, to a point where now, the comments only come after I receive the treatment that is removing them. So, it’s an interesting change in situation over the last few years. The first thing I always want to address when discussing laser surgery is that I have been using green light laser surgery, as there are a few different options. I can only speak from experience with green light laser therapy.
Before we dive too deep into my journey with laser surgery, it’s worth talking about the decisions and thought processes that went on when I was deciding to start this treatment. This is my story and my journey, and that is obviously going to have different mileage for everyone, and everyone is going to weigh decisions differently, but here is a look into my thinking process as I dealt with fairly heavy decisions as a young child. The other piece is that in Canada, only treatment on the face is covered, so I have never had a conversation about using laser surgery on my limbs or trunk, as the financial burden of trying to use this treatment made it a nonstarter. Additionally, though I have limb length discrepancy and other complications, my team and I were only aware of the true benefits coming from facial treatment.
I was about four/five when we started having serious conversations with my medical team about laser treatment as an option. At this appointment, I had my first conversation with the dermatologist who was trained in this specialty. I proceeded to spend the majority of the appointment hidden under the desk. I had no interest in having a couple of laser shots as a test; I didn’t want to talk about it at all. I did find some courage to complete the appointment, but quickly returned to my hiding spot. My dermatologist got down onto the floor in front of me and made it clear that only I could make this decision, and that if I didn’t want to do this yet, we were not going to start. So, we left that appointment knowing a future decision needed to be made. At the time, I was scared and felt like taking my marks was taking a piece of me. However, the reality of the situation was, and still is, that the marks nearest my eyes were causing ocular problems, glaucoma was becoming a real risk, and I had lost some vision. As such, at 12, with ocular pressures rising and coming upon the deadline of only having coverage in Canada, so long as it was started before my 16th birthday, I decided to start my treatments.
This was my journey of coming to accept the use of green light laser therapy. Others will have different experiences, however, I always feel it is important to emphasise in my journey, I made the decisions about my body; doctors and my parents gave me guidance and advice, but from a pre-school age the choice was mine and there is nothing more empowering than that; and as such, after my experience, I warn about taking that power away from a patient, whether they are a child or not, this is not an easy journey and to start unwillingly or unknowing of the challenges may only make it harder. When I faced challenges in my journey, knowing I had made this choice, and I still had that power, made those hurdles easier for me to face.
A critical topic to address is the length of time I have been receiving green light laser therapy. In Canada, there were very few previous case studies on treating vascular malformations with green light therapy, so there was a lot of experimentation in the early years of my treatment. This does mean that my experience and length of treatments are abnormally long. Many people who are just starting their journeys often are worried or concerned when they learn how long I have been having treatments for, as they are not sure they are ready for a 20-year journey; I totally understand that hesitation. I had no idea the treatments would take this long for me. However, as less experimentation and testing are needed these days, many patients are taking much less time than I have.
One of the main factors that has impacted the length of time it has taken me to complete my treatments is the evolution and improvements of the laser technology over the last 20 years. I personally have had five distinctly different machines used in my care. The latest two machines are exponentially more successful in removing marks than earlier machines, this drastically improves the length of time you need to be in treatments. Additionally, I have found the last couple of machines are far more accurate in treatments and leave much less scarring and impacts; all of this together does lead to much more efficient treatments, limiting the length of time I am continuing this journey.
Another critical factor is that when I moved provinces, it took about a year and a half to connect with another clinic to continue my treatments. This delay did impact how long this process has lasted, obviously just the additional length of time; but a factor that was discussed with the older lasers was that if treatments were not maintained while marks were still present, the marks could regain some colour. This set back the treatments a little more than 18 months because of this weird quirk of older machines. Having not stopped treatments on the newer machines, I don’t know if this is still a risk in stopping, but as most specialists I have talked with no longer discuss this, it seems it may be an older concern.
The last key topic I do want to address about starting treatments may not be something that is an issue everywhere, but it is definitely a problem that I have noticed creeping up in Canada, and that’s the rise of medical spas. These are not true medical clinics with dermatologists, but as the name describes, are much more spa-like, with facials and massages, etc. However, they now do cosmetic treatments like green light laser therapy. It is important to address that specialists or doctors may not be doing these treatments, but they are often quite a bit cheaper than treatments not covered by insurance in the medical system. The reason I want to mention these is because when I was getting my treatments in my teen years the clinic I was going to shifted from a medical clinic to one of these less regulated, and more profitable, styles of cosmetic medical care clinics, now more commonly called medspas here, the difference in care and treatments was immediately noticeable. No longer was a dermatologist doing my treatments, but a laser technician, who had a six-month training course and six weeks of job training. Appointments were no longer about the entire procedure, but were now rushed, often asking me to complete steps at home before coming in. Many of the technicians turned over in two months, so I rarely had any consistency in treatment providers. I definitely have much more confidence in my team and have received better care at the dermatology office I go to now.
These are a few of the considerations and calculations I made when starting my laser surgery. For everyone, there will be different challenges and decisions that impact this journey, but I hope seeing a few of mine might help. Next month, I will dive into some more practical everyday tips I use when addressing people who feel the need to comment on the impact of laser surgery.