Interstitial Laser Treatment – Round One 1/29/14

Atticus had his first round of interstitial laser treatment on his tongue on January 29, 2014.  We arrived in Winston-Salem the night before and got settled in at the Ronald McDonald House across the street from Wake Forest Baptist Medical Center.  Our drive from Charlotte to Winston-Salem was not typical for North Carolina – we actually had snow and now I understand why everyone in NC freaks out at even the mention of snow – because they don’t really treat the roads.  They just don’t have the capacity to treat all the roads because snow is such a rare occurrence.  The highways were pretty bad, but we were careful, and made it safe and sound.

The following day we arrived at the hospital at 10 am.  The surgery was supposed to take place at 11 am, but they didn’t end up taking Atticus back to surgery until around 1 pm.  Atticus was a trooper though.  He hadn’t had anything to eat or drink for well over 12 hours, but we kept him busy enough in the waiting room and I don’t think he even noticed the hunger or thirst.  Because Atticus is an only child, and doesn’t go to day care, we don’t get to see him interact with other kids a lot.  There was a little girl (maybe 3 or 4) in the waiting room playing with these cool little hamster things that go when you press a button on their back.  Conveniently, she had two and when Atticus expressed interest, she let him play with one.  At one point, she looked at Atticus’ mouth confusedly and asked, “what happened to that baby’s mouth?”.  I answered, “he was born that way.”  She said, “Oh”, and went on playing. Every time Atticus would walk away, the little girl would say, “come back, baby.”  It was really cute.

After a couple hours in the waiting room, Atticus was finally called and things moved quickly after that.  Usually we wait for a while in the surgical holding area, but this time it was like bing, bang, boom and he was whisked away.  This time, they gave him a little something to make him relaxed before taking him back so that he wouldn’t have separation anxiety.

As he gets older and we get more used to these treatments, it’s not so much the worry about him having surgery – it’s seeing him sad, scared, or in pain that really gets to me.  I was glad to be spared having to see him scared and screaming for me and Brian as they took him back to surgery.

This procedure seemed to take a bit longer than previous laser treatments, mostly because of the addition of the interstitial lasering of his tongue.  After an hour or so, Atticus’ ENT came out to the waiting room and told us that the interstitial treatment had gone well – nothing unexpected.  He explained it to us as inserting a large and very wide catheter deep into Atticus’ tongue and then feeding the fiber through the catheter.  Then as he pulls the fiber out, he pulses it every 5mm or so.  So, even though there are only two incisions into the tongue where the catheter was placed, there are multiple spots inside the tongue that were lasered.  As the doctor described the procedure, I said how fascinating the whole thing is from a medical standpoint.  The doctor answered “Yes, it is fascinating…when it’s not your kid.”  He is right about that.  As I learn more about LM, it is fascinating what doctors can do and how far the treatment has come, but no one would wish any of this on their own kid.  And, I am always reminded of how far we still have to go and how some kids and adults are still really struggling, despite advances in treatment.

Pain and swelling so far have been the biggest obstacles.  Atticus was able to eat a few hours after surgery, so they felt comfortable sending him home the next day.  We were told that swelling would peak at 72 hours and then decrease from there.  We are currently almost at 48 hours out and the poor little guy’s tongue and lip are very swollen.  It is amazing that he can eat and drink through all the swelling and the pain.

Everyone is curious to see what the results of this treatment are going to be.  Right now, it’s a waiting game.  It could take a month or so before we really see what effect this treatment might have on the size of his tongue.  Luckily, I learned early on, even while pregnant to be OK with not having immediate answers.  I’ve grown patient and hopeful.  I take things one step at a time and am grateful for the positive things that are happening today, right now.  Like, the fact that Atticus is eating and drinking and that his pain can be controlled through medicine.  I’m grateful that there are treatment options out there for him.  I’m grateful that he is healthy and strong and able to withstand all of the surgeries that he is going to have to have in his life.  But, as I’ve said before, this is part of his journey in life.  A journey that may come with its obstacles, but one that will teach him the strength, pride, and resilience that will take him far in life.

Interstitial Laser Treatment

Atticus had an appointment with ENT today to discuss his upcoming interstitial laser treatment.  We had a lot of questions going into the appointment, and some were answered, but because of the nature of lymphatic malformations, no doctor can ever answer every question.  There will always be unknowns, and that is just something that me and Brian have learned to accept and be OK with.

I had done some research on interstitial lasering of venous malformations, so I went into the appointment knowing a little bit.  First, I have to explain that I’ve been calling Atticus’ malformation a lymphatic malformation, which is sort of the general term, but his actually has a large venous component and probably only a small lymphatic component.  I guess technically, it is a mixed venous lymphatic malformation.  There’s a whole classification system that was developed by Mulliken and Glowacki in 1982, if you’re interested.

Table 1.: ISSVA Classification of Vascular Anomalies

Vascular Tumors	Vascular Malformations
	Simple	Complex	Flow
Hemangioma Pyogenic granuloma Hemangiopericytoma	Capillary (CM) Venous (VM) Lymphatic (LM)	Lymphatico-Venous (LVM) Capillary-Lymphatico-Venous …	S L O W
Hemangioendothelioma Tufted angioma	Arterial Arteriovenous (AVM)	Capillary-Arterio-Venous …	F A S T

I’ll try to simplify the classification.  Vascular anomalies are a heterogeneous group of congenital blood vessel disorders.  These can be broken down into vascular tumors (the most common vascular tumor being hemangioma) and vascular malformations.  Vascular malformations can be lymphatic, capillary, venous, arteriovenous, or some combination of these.

Because Atticus’ malformation is venous lymphatic and goes deep into the tissue of his tongue, he is a candidate for interstitial laser surgery, which penetrates deeper into the tissue than a surface laser does.  Atticus is scheduled for his first treatment of this type on January 29th.  They will use an Nd: YAG laser and will enter the tongue with a catheter, which the laser will pass through.  They will probably laser two spots on each side of the tongue for a total of four spots.  Atticus’ team of doctors has not performed this specific type of laser treatment before, so they will be conservative on the first treatment and be more aggressive in future treatments, after they see how he responds.

No doctor has done a ton of these treatments because it is just not very common.  However, Dr. Gresham Richter in Arkansas has probably done more than any other doctor.  We are lucky that Atticus’ doctors have a direct connection to Dr. Richter and are consulting with him on the specifics of the procedure.  Atticus’ team of doctors feels comfortable and confident in their abilities to perform the procedure.

We asked about risks of the treatment.  The major ones seem to be internal bleeding in the tongue after the procedure, or the possibility of hitting a nerve in the tongue.  There are really no new risks to this procedure over any other procedure Atticus has already had.  We are expecting swelling, which will affect eating, so we will see how to deal with that after the procedure.  Because Atticus has a trach, swelling affecting the airway will not be an issue.

The most we can hope for is some shrinkage to the tongue.  We are not sure how much shrinkage to expect.  They are going to be conservative in their first treatment, so really, only time will tell.  We have to be patient and positive – two qualities that we quickly learned to embrace after Atticus was born.  There are no quick fixes or easy answers when dealing with vascular malformations.  At this point we are all too familiar with the answer of “I don’t know” from doctors.  While this can be unsettling, we appreciate the honesty of Atticus’ doctors.  For now, we just take it one day at a time, stay positive, and hope that this treatment will make a difference.