Chiropractic Pain Relief

A month ago, a good friend of mine who has vertebrae problems in her neck told me how she was going to a chiropractor and that not only has it improved her functioning, the chiropractor also addressed other issues she was having such as food intolerances and vitamin deficiencies. The more she told me about her experiences about going to the chiropractor, it made me wonder if chiropractic care would help my pain in my FAVA leg. At first I was very skeptical about going since I've never had any back pain and the FAVA was in my left buttock and thigh and not near my spine. I thought about how I've had FAVA for about 8 years now with 6 surgeries and no one has ever looked at my back. By removing the gluteus maximus muscle in 2012, I lost a major stabilizer. I've had my fair share of using canes, crutches, wheelchairs and walkers and have limped a great deal. Wouldn't that be enough to throw off my back? When I really thought about it, it made me realize how messed up my spine probably was and I got so angry that no one ever looked at my spine or back before so I chose to make an appointment with the chiropractor.

I told children's hospital that I was going to the chiropractor and I was told to be careful. They weren't very keen on me going but they knew that I take my health into my own hands and that I decided I was going. I told the chiropractor about FAVA and that I recently had some random sciatic pain (that I previously posted about) but for the most part I have a general throbbing pain the majority of the day accompanied with random, localized nerve pain around the FAVA masses. He was surprised to hear that no one ever looked at my back before. I got an x-ray done immediately and found out that my back was curved out to one side and that my L4 and L5 were crooked, most likely contributing to my pain. Fortunately since I'm young and my back has probably been like this for less than 10 years, he felt as if it could be adjusted back to normal within about a month. Yes, I said a month and my insurance covered it!

The solid red line is where my spine should be
and the dotted red lines is where it was.

  

I decided that I would follow his recommendations and see what happened. Even if it didn't help my pain in my FAVA leg, I knew it was probably the best to bring my spine back to where it should be now, so I won't have more severe problems later in life. I thought of it more as preventative care for the future. I've been going to the chiropractor 3 times a week for 4 weeks, for a total of 12 visits where I would use a TENS unit on my lower back for a few minutes and then got a spinal adjustment. A month after my first appointment I got a follow up x-ray. This x-ray isn't as clear as the previous one but they fixed my lower spine (lumbar spine) to go more straight along with straightening out my L4 and L5 vertebrae. Now my upper back has compensated for the lower adjustments but that could possibly straighten out on it's own after a while along with some back-strengthening exercises.

The bottom part is straighter including the L4!

I am so happy to say that within a MONTH of going to the chiropractor, he has cut my pain in HALF since I first started going. There were days I went into the office limping due to a bad pain day and would leave with half the pain and without a limp. He would give me immediate pain relief by simply adjusting my spine and working along the crest of my hips. And what's even better is that the whole experience was PAINLESS! It was all gentle spinal adjusting and I wasn't getting thrown around and jolted.

Unfortunately, the masses in my thigh and buttock are still painful with pressure - if touched/pushed on, if I sit for a long period of time, and occasionally random despite my position.  The FAVA pain didn't completely disappear (like I always wish it would) however, the 24/7  throbbing pain throughout my buttock and thigh isn't as severe as it was before the chiropractor and the nerve pain doesn't occur as often as well. There are some parts of the day, such as the morning, that I have NO PAIN at all! Although I still don't understand the anatomy and their techniques all that well, I can't stress enough how this has helped my FAVA pain in my thigh and buttock and I'm so incredibly grateful that I decided to give it a chance. Of course I made sure my chiropractor, Dr. Eric Goans told me everything he was doing and why because I'm a very skeptical patient with anything anybody does regarding my health.  He mainly used what is called an activator which is a small handheld tool that feels like mild pressure along the vertebrae he is working along (http://www.spine-health.com/treatment/chiropractic/activator-method-chiropractic-technique). I'm not a doctor or an anatomy expert by any means, but there are many nerves that run through and connect to the spinal cord and by releasing abnormal pressure off of these nerves (which can be done through a chiropractor) it can ultimately relieve pain (http://www.spine-health.com/conditions/spine-anatomy/spinal-cord-and-spinal-nerve-roots). Everything that he did was not painful and actually felt really good. We also addressed my diet and vitamin levels which I will post about in another post when I get the results!

I've notified my FAVA team at Children's Hospital Boston about how the chiropractor has helped my pain and am waiting for a response! Hopefully it will become a recommended alternative medicine choice for other FAVA patients. Have you thought about going to a chiropractor or sending your kids to one to help with FAVA pain?

Sciatic Pain - What Gain?

Within the last week I've had two episodes of what I believe is sciatic pain.  Since I no longer have the gluteus maximus muscle, my doctors assumed that I'd experience sciatic pain due to the lack of padding protecting the sciatic nerve. Because of this reason I've had an amazing plastic surgeon at Children's, Dr. Greene, put in a lot of cadaver skin twice to not only "fill the void" from where the muscle was, but to protect the sciatic nerve from getting damaged. Before I had the muscle removed, I experienced sciatic pain often. I believe that since the muscle was dead and hard like a rock, that it would occasionally push against the nerve causing pain. Since I had the muscle removed for almost 4 years now, I've rarely had sciatic pain which has been a blessing. The reason why I believe this pain is stemming from the sciatic nerve is because the pain can be shooting down the top of my hip through the buttock and occasionally right behind the knee. If it isn't a shooting pain, it can be a throbbing, stabbing pain different from the pain I usually have daily from the FAVA lesions. The pain also isn't running through the FAVA lesions. I noticed that I usually get the pain while sitting for a decently long period of time so I've made an effort to avoid doing so but it hasn't helped all that much.

Yesterday I woke up in a great deal of pain and each step I took was more painful than the last. As much as my mind was telling me not to, my body was telling me that I needed to use the cane all day. The small amount of weight bearing that was replaced by the cane really helped me. However, like I mentioned in my Walking Without Shame post, the emotional toll of using the cane can be worse than the physical benefits at times. I felt like I was taking a step backwards in my health.  So whenever I'm in extreme pain or feel like the world is crashing down on me, I tend to write down how I'm feeling in hopes that maybe it will turn into a good blog post. What I've noticed when my mind is back to "normal" is that these thoughts during the pain episodes can be very detrimental to my over-all well being. "What if's" and blame flood my mind.

Sunday night I wrote this:

"Now I'm in pain and it seems like it completely consumes me, who I am and what I am able to do. I automatically think that I've failed because there are very few things that I can do to help my pain and I've missed out on one for over a week now - yoga.

The pain consumes my body and my thoughts. I get stabbing pains that dig into me like knives and intense throbbing pains that seem to pulse throughout my butt and thigh. I automatically go to the one thing that instantly relieves my pain right now and numbs the area - bengay cream. For some reason it works and before my anxiety gets out of control and I start to panic, I instantly grab the bengay. It numbs the area so it feels like dull pins and needles instead of deep, pulsing pain that radiates through my butt and thigh while consuming my mind. My heart races because I start to panic, "not now" I plead. "Why me?" I always ask. Once I start to get pain relief, my mind begins to calm and settle and my heart stops racing. It is the light at the end of the tunnel. But what if the bengay stops working? What if one day it doesn't help anymore? What will I do and how will I cope? "

Compared to how I used to think when I was in pain, I know I have come a long way in the right direction. However, I still feel as if my thoughts are still at times detrimental to my over-all health. I start to blame myself for the reasons why I'm in pain as if I'm responsible and tell myself that it is "my fault" that I'm in pain. I search for reasons how I can blame myself instead of accepting the good things that I've done for my pain instead. I hope to change the way I think so instead of focusing how bad the pain makes my life, I can focus on how far I've came in terms of my pain and what lessons I have gained from having chronic pain. I feel like it is easier to focus on the bad things in life. I already know how much harder the pain makes my life for the worse, but why dwell on it and make myself feel worse? This is a mindset I hope to be working on to help my pain.

Demi Lovato's song Skyscraper reminds me of this mindset that I hope to achieve. I like to use music to influence my feelings and actions at times and when she refers to this thing or person who is trying to bring her down, I associate this thing as my FAVA. I use this song to remind myself that it will continue to try to bring me down but I have the strength to rise from the ground like a skyscraper.

Skies are crying
I am watching
Catching teardrops in my hands
Only silence, as it's ending, like we never had a chance
Do you have to, make me feel like there's nothing left of me?

[Chorus]
You can take everything I have
You can break everything I am
Like I'm made of glass
Like I'm made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper
Like a skyscraper

As the smoke clears
I awaken, and untangle you from me
Would it make you, feel better to watch me while I bleed?
All my windows, still are broken
But I'm standing on my feet
...
Go run, run, run
I'm gonna stay right here
Watch you disappear, yeah
Go run, run, run
Yeah it's a long way down
But I am closer to the clouds up here
...

Pasted from: Demi Lovato - Skyscraper Lyrics | MetroLyrics 

Compromising Physical Health for Emotional Health & Cryo Update!

Especially with chronic illnesses we constantly hear how we need to put our health first and to take care of oneself. So what is health composed of? When we look at the health triangle, there are many categories of health that make up who we are including physical health, mental/emotional health, social health and spiritual health. Having FAVA I'm constantly struggling with my physical health and the pain that accompanies it. However recently I've been struggling with my emotional and social health.  We all know how important it is to address depression seriously and how dangerous it can end up being if left untouched but physical health is just as important. So what do you do when your physical health is pointing you to take a different direction than your emotional health? Although we can try to accompany both regardless of which direction we choose, in the end it seems like one is still being compromised for the other.

Medically I'll be needing another surgery in the near future since the cryoablation wasn't as successful as we hoped. The mass is still hard and painful and although I know I need to have it treated in order to control my pain levels, I know I'm not ready to put off college another semester. I just took a year off and I don't feel like I can handle taking another one off. My physical health tells me to have the next surgery soon but my emotional health tells me to go back to school and manage my pain until the summer. So I'm struggling with where this line is between emotional health vs physical health. Neither one is more important than the other in my opinion but one will be compromised when I make my decision no matter how hard I try to address both simultaneously.

I find it vital to be mindful and aware of the pro's and con's when making health decisions and to be open to new opportunities and options in order to make a smart and knowledgeable decision. Although I am one to act on my thoughts and not just think about them, I tend to make my decisions based on what I want to do rather than what I should do. However this time with school, I am being mindful of my hospital and school resources and how much effort I can willingly give to make school happen and I am willing to take the challenge this coming semester.

"Wonder when and where and how you're gonna make it

You know you can if you get the chance

In your face as the door keeps slamming

Now you're feeling more and more frustrated

And you're getting all kind of impatient waiting

We live and we learn to take one step at a time" 

-Jordan Sparks

I spoke with Dr. Shaikh the other day and we decided that in order to have a solid surgery plan they will need more imaging to see what the FAVA looks like now that we are post-cryoablation. Since I'm still experiencing significant pain daily, it is safe to say that there definitely will be another surgery soon.  I will be getting an ultrasound with a new contrast that should show the FAVA malformations better than previous contrasts and we will hopefully be able to see smaller, scattered malformations as well if there is enough blood flow. In the near future they will be able to use this same contrast in MRI's so thankfully research and technology is heading in the right direction! We are kind of hoping that the current pain is from untreated FAVA malformations (that was missed) so we can do the cryoablation on those in hopes that it will be successful. If the cryoablation didn't work for the pain on the treated FAVA's, then we are considering resection of the lesions which will most likely be done by Dr. Spencer. For now I'm just waiting on the ultrasound appointment which will be in early January.

The whole process on getting the ultrasound, figuring out what to do, and later booking the procedure is expected to take quite a bit of time. I've been extremely frustrated with the amount of time I've already had to wait and they understand that I'm starting to get impatient. With that said, they as well as I believe that I'll be much happier if I can go back to college amongst this waiting time while accompanied with a steady pain management plan. Although I am afraid of the pain alongside college, I believe that it will be possible as long as I remain dedicated to strengthening and stretching the hip and leg daily and maintaining an extremely low stress level so that my pain won't get out of control. I am 100% sure that my physical pain gets immensely worse when I'm stressed. I believe that going back to school will help with my depression and emotional health as long as I maintain a healthy balance between exercise, stress management, pain management while achieving good grades. I don't expect this to be easy but I believe that I have enough energy and dedication to give it a try. Hopefully Boston Children's Hospital pain clinic will be able to ease my pain without heavy medication in order to make this semester possible.

As much as I'm worried about pushing my next surgery back until the summer, it is not a rush to get it done. There is no way to know if the mass will grow larger or remain the same size but that's a risk I'm willing to take. I  might be in more pain by waiting but I'm not at any other medical risk. I'm hoping that I will be able to maintain my physical health with the resources available to me and my dedication with the exercises I've been able to do. Where do you lie between your emotional and physical health? Do you feel as if one is being compromised by the other at times and how do you decide what to do? Where do you draw the line?

"Taking Chances" - Celine Dion

Cryoablation Not Responding

About five and half weeks ago I had my cryoablation procedure in hopes that it would ultimately kill and shrink the FAVA’s in my upper thigh and buttock. Success rates were high and I was not only hoping, but kind of expecting this procedure to work like the other patients. My interventional radiologist told me that recovery varied from person to person and it generally took between 10 days and 4 weeks for the mass to shrink like it’s supposed to. I’ve been so anxious for the day that I would notice that it had started to shrink however that day never happened. Now five and a half weeks later, the masses are still in the exact same location, exact same size, and are still painful.

The pain still feels different like I said in my previous blog posts and the masses remain to be hard and close to the surface. Sitting on them can be uncomfortable at times because it can feel like I’m sitting on a small rock while my butt and thigh are swollen and bruised. Although having pain still sucks, this pain is more bearable than from before the procedure and the bengay cream surprisingly still takes the edge off of the stabbing, throbbing pains. Unfortunately it doesn’t help much with the nerve pain I get occasionally though. I guess I can’t be too picky!

I’m starting to lose hope with this procedure being successful. I’ve been keeping in touch with the vascular anomalies team at Children’s and they were hoping that I’d notice a difference this week just in case it took a little longer than predicted but with no avail, there’s been no change. I have a phone appointment Monday in hopes that they can give me some options. Either way the anxiety has been eating me alive not knowing if there’s going to be another operation in my near future or not. It’s hard to keep my cool and not to panic. I’ve taken two semesters of college off and the last thing I want to do is take another one off.

But thankfully not everything is going horribly. My hip rotation is back to normal and I have full weight bearing on my leg. I started yoga again which is helping with the pain from the muscles being so tight along with improving my flexibility. Releasing as much tension as possible in my hips along with strengthening my legs, core and hip flexor can help my pain. Other than that, I’ve been trying to keep my anxiety and depression under control until I have options and answers.  

Walking Without Shame

Before any of my procedures I always try to spend as much time as I can out and about since I know I’ll be stuck inside either the hospital or a house for who knows how long. But when I’m out, I make sure to embrace the feeling of blending in. There’s a sense of comfort in blending in sometimes. I feel like one shouldn’t always blend in and that everyone should take the path less traveled a few times in their lifetime but sometimes blending in can be comforting. Embracing the fact that you are one of billions of people and that sometimes you can walk by a person and they won’t even notice that you’re there. Yes we do need attention by others but this is something I spend time thinking about before my operation because this sense of blending dissipates after my surgeries.

Because of the location of my FAVA, I generally need to use a walking device for a period of time after my surgeries in order for a fast recovery. Most of the time my recovery involves a wheelchair and two crutches, then later one crutch, and then finally I move on to a cane/walking stick. Although the cane is the last stretch of my recovery and I should be happy about using it, it makes me very uncomfortable in public. This sense of blending in is immediately gone when people see me, a young girl, using a cane. Generally society is used to seeing an older person using a cane and this is “normal” and causes no extra attention. However when people see me using one, this “normal” device suddenly turns “abnormal”. The stares never stop and after they look, they immediately look to the person beside them and say something. I’m not saying that every time someone talks after making eye-contact with me that they are always talking about me. However I do notice multiple glares afterwards and I’ve also heard people talk about it.

I used to have a lot of anxiety when I went out in public using my cane or wheelchair. I’ve used my cane after three surgeries now and I know it helps ease my recovery. The anxiety gets better after each time I need to use my cane but I can’t say that it’s not there. Before I go out, I always have to make sure that I look nice – my hair and makeup always has to be done and I have to have a nice outfit on with matching accessories. Why? Because there are so many more eyes on me and I get so uncomfortable. But what I find interesting is that I have no problem standing up in class and saying something when I’m not as “put together” when I know there are plenty of eyes on me without the cane.

The first week or two on the cane is surprisingly the easiest for me because although I stand out, I handle it better because I know that I absolutely NEED the cane. No if’s, and’s, or but’s. But the longer I use the cane, the more I feel like I shouldn’t need it anymore and that I can handle the pain without using it. I become sick of standing out EVERY time I go out in public. I start wanting to blend in again. Ultimately (if I’m aware of it or not), I stop using the cane and I start to suck up the pain. I know this is not right and that I shouldn’t feel this way. I feel like disability should be more accepting no matter what age. With clothes on my disability is invisible and people have a harder time figuring out why I’m using a cane when they can’t see what’s wrong. FAVA can sometimes be an invisible illness especially if it’s been treated.

Nobody should feel shame in using a walking device when it helps alleviate pain and discomfort but unfortunately in our society, it happens all the time. Since FAVA is practically in my butt, sitting in class or at a desk at work can be uncomfortable. There have been a countless number of times where I refused to bring pillows or blankets to sit on when I really needed to bring them. I didn’t want to be “that girl”. I didn’t want to stand out anymore. I was sick of it.

I’ve been questioned multiple times when I go out with the cane and while some experiences were good, I’ve had multiple bad experiences as well. I recently got confronted by an older woman at a funeral service asking me what happened while pointing to the cane. I politely told her about FAVA and about the procedure I had done. She was extremely empathetic and made sure I was alright throughout the entire service. I found it very kind and thoughtful of her asking. I wish all of my experiences were like that. I had a really hard time my senior year of high school dealing with two surgeries, having three jobs, maintaining friendships, and making up school work. One day I was out with some friends in an incredible amount of pain and we stopped at a gas station for gas. I went in to grab a snack of some sort and went to hold the door open for a middle-aged man probably in his 40’s. A pleasant thank you would have sufficed however his response was not so pleasant. I didn't receive a thank you for holding the door open for him and instead received a nasty, disgusted look with a repulsed response sneering “you’re too young to be using a cane”. I was in complete disbelief and was devastated from his response. Unfortunately, this wasn't the first time people thought I was “faking” my need for using the cane. The manager of the store I was working in at the time thought I was playing a Halloween “prank” or “joke” by walking in using the cane. I was fit to be tied thinking that people thought I was using it for attention. And I’m not even going to mention the scenarios I've had when I used my handicap plate…

Now, I've started to suck it up and tell myself that I need to use the cane for my own good. If I use the cane then I have to deal with the societal views and attention but if I don’t use it then I can be in extra pain for hours. So I ask myself, what’s worse? Depending on my emotional situation at the time, believe it or not my answer varies. It may be hard for some people to understand and some might say that this describes them perfectly. I know a lot of people who debate this if it’s a pillow, blanket, cane, crutch, or wheelchair. They just don’t have the energy to deal with it. However, some days I just say to myself “F*** it, I don’t care”. Those days I have the energy to prepare myself for being questioned or just plain stares. My personal experiences probably influence my views but I’m tired of continuously standing out because of my age.

I would often hide the cane or wheelchair when I took pictures because I felt ashamed. Recently I've been learning not to be ashamed and that I should have enough self-confidence to be able to be photographed with whatever I need at the time. I don’t want to make it sound like it was easy for me to do because it hasn't been. Sometimes I would have what seemed like an internal mental breakdown. But, it always makes me feel better when my friends tell me that “I own the cane” in my pictures. ;)

Recent post-cryoablation picture

Taken a few years ago with my bestfriend, cane is in the background

Post debulking 2012

Right before debulking surgery 2012

“Don’t let your illness define who you are”

Considering my previous operations, recovery from the cryoablation has been quite easy. I’m used to extreme amounts of nerve pain and throbbing aches and knife-stabbing pains during recovery, but this pain I’m experiencing is much different and more bearable. I get some nerve pain here and there with the majority of the pain being a sore, bruising type of pain. I find describing pain quite hard to do but there are just so many different types and it is important to describe them fully. The type of pain that has been the most difficult this time is the emotional pain. After the first few operations, the emotional pain was almost equal to the physical pain. It gets easier to handle after each operation but I know that it’s still there and present every single day.

What’s interesting to think about is that living with FAVA is different for everyone. Every single case is so different and what might be a treatment option for some isn’t for others. Even if they are an option, sometimes they don’t work for people and there’s no way in knowing if it will work or not unless you try. For some people, FAVA is treated only once and then it can be out of their life forever. For others such as myself, the chronic nature to it can be quite overbearing and sometimes it seems like the illness defines who we are by the actions that need to be taken. Now I am a firm believer in saying that your illness does NOT define who you are and that everyone has their own unique and brilliant traits and talents that may “define” who they really are. But sometimes I feel like this statement is easier said than done.

I believe that society expects you to jump back into reality fast after an operation. There are definitely advantages to these expectations but with chronic illnesses, it can be more of a burden in my opinion. Taking recovery slow can help your body physically and mentally. Having an illness so chronic in nature like FAVA, I find it so difficult to jump back into life after an operation like how I left it. Physically your body can’t handle what it could handle before and I feel like it is the same way mentally. Friends and family may want you to jump back into life but it isn’t that easy. Sometimes in order to recover you had to make some sacrifices. These sacrifices may be small or large but the action of having to take them for your own health and well-being may seem like your illness is defining you.  

I’ve had to make multiple sacrifices the past year from two unexpected operations. I could go on and on about them all. However, the most painful sacrifice was that I had to take off a year of college. I had created a new life with new people and new hobbies in an entirely different state and that had to be deferred. I had to go back to my old life that I tried to get away from. I managed to accept it and realized it was ok the first semester because it was only a few months. When the summer came, I was in little to no pain so I took an online summer course at UNH to get back into the rhythm of school again. I got so excited for fall semester to come to finally have my new life back. But, I barely finished that course because the last two weeks I instantly got extreme pain and found out I needed to have the cryoablation done. Emotionally I froze. It seemed like more false hope. I knew I had to defer another semester of school and that was the last thing I wanted to do. So although society expects you to jump back into your life, sometimes it isn’t practical or even possible. When you make sacrifices you don’t want to make, it can feel like your illness is making that decision for you; hence defining your actions. Think about how many times you have changed your life completely and how emotionally exhausting it was to find your own rhythm again. Now think about doing that over and over again.

So, do I let FAVA define who I am? There are moments that I look at my present situation and say yes. But then I always have to remind myself of everything I have already accomplished. Although my list might not be as long as I hoped, I’m learning to be ok with the way it is now and that over time I can accomplish what is missing. In the meantime, I am trying to find other hobbies and take advantage of the time I have to make other accomplishments despite my emotional pain. So although there are times that I feel like FAVA defines my life, I’m still learning that it doesn't. But it’s always easier said than done. 

-becca

Cryoablation Recovery

I had a follow-up doctors appointment at Boston Children's Hospital the other day to make sure that the recovery was going well and to sort out any complications that were questionable. To my surprise, Dr. Shaikh was very happy about the cryoablation results so far! I wasn't so optimistic going into the appointment because I had so many unanswered questions and concerns. The frozen masses that were treated are very hard and bruised along the surface of the skin so any pressure at all is extremely painful. However the characteristics and "type" of pain is different than before the surgery for sure. Now the pain feels like a bruising pain with some nerve pain while before it was a sharp and throbbing pain alongside nerve pain. This was exactly what Dr. Shaikh was hoping for. They never tracked down the root cause of the severe migraine I had 4 days after the procedure which is still concerning to everyone. However, my main concern recently was a new type of pain that showed up in a brand new location. UGH!

This new pain that has appeared is at the very bottom of my large scar on my buttock. The area is swollen and it is a stinging, sharp pain that is unfamiliar to me. Normally, I can recognize the type of pain I'm experiencing and have a very educated (and generally accurate) guess of what is happening in my body. This time is different because I have no idea why the pain is present in this new spot that has never gave me problems before. It is beyond frustrating having this unfamiliar, "new" pain so shortly after having a procedure done. I often need to remind myself to still have some hope that it might not be too serious. This "new" pain spot has given me the most pain and the most trouble recovering from the cryoablation and it is the reason why I'm occasionally having to take strong pain medication. I definitely didn't expect it. Dr. Shaikh told me that it can be common in FAVA patients to have new pain appear in other spots and that it may or may not go away. My recovery is expected to be about another month because I'm having some difficulty with weight bearing for long periods of time and with back extension. If the pain is still present in a month's time, then we will look to see what is causing the pain and how to treat it. Otherwise, I'm just hoping that the pain will dissipate and that it was just a spontaneous and temporary pain. One theory Dr. Shaikh has predicted was that when you have a large mass that is extremely painful (aka the one's he just cryoablated), your mind is focused on that really painful spot and your brain doesn't recognize the small pain spots; they go unnoticed until that extremely painful mass is treated. This psychological theory is definitely a possible theory in my opinion but what worries me is that I've never experienced this "type" of pain before. This isn't the type of pain I get when the FAVA mass grows back or acts up. I just want answers!

As for now, I'm still walking with a cane to help my weight bearing for extended periods of time. Occasionally I'll walk without using it but sometimes I surely regret not having it when I need it! I'm also trying to not take any pain medication because I absolutely HATE the "high" I get off the medication and I don't feel like myself. However I will take it if I can't take the pain anymore. So for now I'm trying ice occasionally for the swelling and bengay cream for some relief. Tonight was my first time using it and so far it is helping! If the pain persists after my recovery is over, I'll be switching to essential oils for relief because I've heard some great stories and that they can provide such great relief for those who have a vascular anomaly.

Dr. Shaikh wants me moving around as much as possible and not bed-ridden for this recovery. Bed-ridden is not my style and in the past I often got scolded at by a variety of medical professionals for not "taking it easy" but this time I'm so mentally, emotionally, and physically drained. We experienced a death in the family this week and the services have been not only emotionally draining but physically draining and a 20 hour car ride on top of it didn't help either. Although I'm trying not to rush the recovery and healing process, when I have enough energy I'm eager to start yoga, figure skating, and hiking again. I'm sick and tired of being sick and tired.

It is hard waking up every morning and telling myself that I'm going to get something done when my energy levels are so low. I remind myself daily that you have to get through the rain to see the rainbow and although it may seem like a hurricane, the clouds will break eventually.

-becca

Cryoablation Experience

September 9th I had my cryoablation procedure done at Children's Hospital Boston. It is a fairly new form of treatment of FAVA and is done primarily from one amazing interventional radiologist. It is a non-invasive procedure guided by ultrasound that involves freezing the mass using needles and cryotherapy techniques which will eventually kill and shrink the mass. This treatment option was first introduced to me last December but it was quickly declined for my case because of the characteristics and location of the FAVA. The team decided that it was more dangerous than a cutting surgery because the masses were too close to the skin and they feared of breaking the skin, ultimately creating an open wound and severely damaging the nerves. At this time, I would have been the second person to receive this treatment in the United States and they didn't have enough practice to feel comfortable doing the procedure at the time because of its proximal location to the sciatic nerve. However, 9 months later, after I had a large cutting debulking surgery, the mass grew back and the vascular anomalies team felt that the cryoablation procedure would now be the best treatment option. Now, they had done 13 of these treatments to which they deemed 11 of them to be successful. They felt like they had better control of the freezing device in case the freezing got too close to the sciatic nerve or too close to the skin since discussing it last time.

So, how did it go? Did it work? Well, I had this procedure done exactly a week ago and there were definitely pros and cons to it like all the previous surgeries I've had. With any procedure or surgery I have, I generally determine it at least partially successful based on pain control and this time my pain was definitely successfully controlled! But, time will tell if it actually worked or not. They found some abnormal and enlarged veins in my upper thigh which might require some sclerotherapy in the future if they cause any pain but I'm staying hopeful! As predetermined, I was going to get a nerve block  specifically for pain control. I was under general anesthesia for this procedure and the nerve block was put in at the beginning of the procedure to ensure quality pain control. They told me multiple times what to expect and how I wasn't going to have feeling in my leg. However, it was definitely an odd and uncomfortable feeling. At first, it didn't bother me because I knew without it I would be in an enormous amount of pain but I soon started to hate the feeling. My leg was so heavy trying to move my dead weight around my bed to reposition myself. I was only in the hospital for one night and my abs got the biggest workout I ever had those two days! Trying to pull myself around my bed to avoid my right healthy leg from hurting was definitely an undesirable challenge!

Like I said, I had no pain or very little pain while on the nerve block and was on very little IV pain medication as well. I was so happy because I could make the best of the situation by using my phone or watching TV and talking to people without feeling nauseous, dizzy, or drugged. But like always, I got a  horrible night's sleep that night due to being uncomfortable, repositioning, and being woken up every few hours for vitals. However, I was extremely pleased (although my boyfriend won't be ;) ) to have a young, attractive, male as a nurse that night to distract me from being uncomfortable. Sometimes you just have to make the best out of some situations! So generally the nerve block wears off 2-6 hours after it is removed and it finally wore of 8.5 hours after; it was dreadful waiting. I couldn't wait to finally feel my leg again not to mention simply wiggling my toes! Once the nerve block wore off and I successfully switched to oral pain medication, I got the choice to be discharged (which I took)! One night in the hospital for a procedure was definitely a record!

Recovery went well for the following three days after discharge with mild pain until I ran into my first small complication. I woke up with the biggest migraine I ever could have feasibly imagined. My head felt like it was over 3 times the size and my brain was throbbing with intense pain. Migraines don't run in my family and I've never experienced one until this day. I pulled all the blinds closed, pulled a blanket over my eyes, laid in bed and slept for over 24 hours. Every time I got up to use the restroom, I vomited whatever was in my stomach. I couldn't eat even a cracker, drink any water, or take ANY pain medication for over 24 hours. We called Boston Children's Hospital and reached the doctor on call since it was on a weekend and they said it sounded like a migraine from the nerve block (spinal) and that it should dissipate within a day.

However, my doctor called me back on Tuesday saying that she heard about my migraine and looked into it. Apparently the team who did the nerve block said that they didn't put the nerve block in through the spine so they are almost 100% sure that the migraine didn't come from the nerve block. Anesthesia couldn't think of a reason either for the cause of it. Once again, another mystery is present in the life of having FAVA which only brings on more confusion and concern. Since they are concerned about the migraine, I'm still awaiting a probable cause. But the good news (even though I have no choice due to stomach issues) is that I'm off of all pain medication except nausea medication! Of course, I'm still in a lot of pain but it is manageable and I'd rather have clarity than try to take them and essentially probably throw them up again.

This was my experience with the cryoablation procedure and I'll be posting results at a later date. I  also attached some pictures of my upper thigh post-procedure. This is my first time uploading any photo of my vascular anomaly. The large scar is from my previous cutting surgeries.

-becca

7 days post-procedure, lots of bruising 

A few days after the procedure 

The day after the procedure - still in the hospital 

Still in the hospital - the freezing came close to the surface of the skin here which is why it's red. It didn't break through the skin and this was not an injection site.

Day after in the hospital 

Support

This topic is very personal to me for many reasons but I feel like it absolutely essential to cover. Living with a chronic illness such as FAVA is not only emotionally difficult for the person who has it, it is extremely difficult for the people in that person's life as well. I don't think this post will even do it's justice to cover and explain how support from others is crucial for those who have a vascular anomaly, FAVA or a chronic illness. There are a variety of ways to provide support which I will cover in a different post.

Support can come from a variety of people including friends, family, significant other's, professionals, support groups, co workers and many more. Although support is given differently from person to person, I strongly feel that the types of support vary between how that person is connected to you. Support given from a parent might differ from support given from a significant other or a friend. I feel like support from a variety of sources and a variety of people can lead to a well-rounded, individualized support group which can help those who have FAVA along with the people whom are connected to the person who has FAVA.

So this well-rounded support concept sounds great and sounds promising to help get through the emotional aspect of having FAVA with the least amount of emotional scars possible. But, what about the people who aren't so fortunate to have the support? From the perspective of a person with FAVA, the reason’s I’ve witnessed vary from situational attributes or personal attributes depending on my relationship with the unsupportive person. A few reasons I’ve witnessed included people who don’t believe me when I’m in pain, people who don't know how to handle it so they slowly try to lose touch with me, those who aren't empathetic and feel like it's my fault, those who believe that I can handle it on my own and don't offer support because they think I’m  "strong enough" to handle it myself, those who are in denial about me having a chronic illness, those who think that "it can't be that bad", or those who are "too busy" to offer support. Regardless, there are a variety of reasons to which someone may not be supportive. Ideally, one may wish to disconnect from these people who may not offer support or who may make them feel unworthy and hopeless. I feel strongly about letting the people who you feel that hold you down with negative thoughts and energy go because I believe that you deserve surrounding yourself with people who lift you up and who support you through your pain, medical decisions, and emotions. Although these people may play an important role in your life, you need to ask yourself how important are they if they keep bringing you down?

So what do you do if you don't have support and are surrounded by people who bring you down? My answer is to really look at the people in your life and think about who is there for you when you need them most and surround yourself with positive energy. Leaning on others is okay as long as they are supportive. You may find that the people who you'd least expect are there when you need them and the people you most expect to be there aren't. But during what may seem like a medical chaos with your battle of having FAVA, support can help you greatly if you allow yourself to receive it.

Don’t be discouraged if you don’t have support from people you’d expect to have support from. Although ideally you may hope to have support from everyone including friends, family, significant other's, co workers, and/or others, you might have support from one or two of these groups of people, and that is okay! Although it may be harder getting through this without support from a specific group of people, it definitely is possible. So don’t wear yourself down if you don’t have a significant other and/or supportive parental figure in your life. Support can come from other people, no matter who it is. It is possible and you aren’t alone. Regardless if you have FAVA or are a caretaker or friend, support can make this battle seem less overwhelming if surrounded by people who you can relate to and who support you most.

Since FAVA is generally is discovered at a young age, the person who has it may not have the mentality to be able to handle it all on their own. I even feel like adults shouldn't have to handle it on their own. However, during adolescence, it is common for symptoms and pain for FAVA patients as well as other vascular anomaly patients to get worse. Support during this time is crucial , even for those who don't have a chronic illness because adolescents are so fragile and impressionable during this time.

For those who are younger and may not be able to separate oneself from the people who bring you down, (for example family who you may live with or friends you may see daily in school) my advice is to keep surrounding yourself with people who do help and to keep looking forward. You need to learn how to cope with negative energy and words and to remember that you can rise above the negativity and that this is your life. You have the power to change a lot of things, and if not now, you can later when you are older. But, you are never alone. Many people don't have the support they would like to have from certain people and you may feel like it make things harder but it is not impossible. There are many sources of support out there for you, and although they might not be in the direction you hope for, there are people willing to help you through this including support groups and professionals.

I feel like parental/guardian support during childhood and adolescence is the most important form of support you can have especially because FAVA is very treatment-based and there consent laws in place for minors who need surgeries and/or procedures. For this reason, I feel like it is important to maintain a supportive relationship between parent/guardian and child. For caretakers, friends, family, or significant others of people with FAVA or a vascular anomaly, support can help avoid emotional scars and help the person who has FAVA. Don't be absent in this person's life during what they might feel as a medical chaos or when they are in pain. Being absent or silent is the worst thing to do.

I'm extremely thankful for those who have been supportive and who weren't absent when I needed them most. But my support group has never been what I described as fully "well-rounded" covering the different types of people I described earlier. I've had my share of people not being there for various reasons and I've had times where sometimes people were there and other times they weren’t. Although I might not have had a whole lot of support, I've kept going and pushing through. I feel like my FAVA journey has definitely been more difficult than it could have which is why I urge parents, friends, family, caretakers, and/or close co-workers, to never be absent or silent when someone may need you most. I constantly feel as if I'm alone in this medical battle but I have to regularly remind myself who I have around me and reach out to them when I feel this way. In my opinion, the emotional component of FAVA is equally challenging as the physical component and support will help lessen the emotional scars that accompany the physical scars of FAVA. 

False Hope and Acceptance

As I start writing my blog, I have a large list of things I'd like to write about and I contemplate where to start. I've had FAVA for over 8 years now and it has impacted my life in a countless number of ways.  I fully understand and accept that everyone has their own unique opinions and beliefs and may not share my personal beliefs and that some of my strategies may not be best for everyone since every FAVA case is different. However, my intention is to share my experiences, struggles and strategies with others in no particular order. Probably the largest struggle I deal with on a daily basis is the feeling that I call false hope - that one day this illness will disappear in my life for good.

Every treatment and every surgery I've had leaves me with the hope that this may be the last one and that I might never have to stay another night in this hospital that is unfortunately so familiar to me. Likewise, my doctors hope this as well and try to provide me with treatment options to prevent the FAVA from growing back. Point being, I get these notions in my head that "This is it! I'm done!" and that I can shut the book and never look back. The unfortunate thing is that I always have to reopen the book even when it's the most inconvenient, and when I do, I have find where I left off. Looking back on the past has always been a large struggle because it forces me to remember what I've always wanted to forget: the disappointment, pain, stress, fear, unwanted thoughts, self-doubt, flashbacks, nightmares and anxiety that comes along with my case of FAVA. People always say "have hope, maybe this is it" - but I feel like there's a thin line between being realistic and being positive. I find it important to ask yourself, it is realistic to believe that it won't come back? If not, how are you protecting yourself from these feelings of fear, anxiety, self-doubt, etc if you're in denial of the chronic aspect of FAVA? How do you really cope with these recurrences?

I bring up these questions because multiple times in the past I have told myself to close the book and forget about it because I don't want to be reminded of the physical and emotional pain that I've endured. But I found that finding myself again and again before and after all of these procures is more emotionally and physically draining than accepting the chronic nature of the illness. But how do you accept FAVA as a part of your life? How do you come to terms with it? Unfortunately, I'm still searching for an answer myself and I don't believe there is an easy answer to this question. However, I feel like it starts by not closing the book and by searching through the table of contents instead.

Although having hope for a "cure" in the future is important to maintain, understanding and recognizing that a cure might not happen in my near future has helped me mend my emotional scars with FAVA. Instead of solely praying that it will magically disappear from my life, I'm searching to find healthy ways to prepare myself for the unexpected in the future. Although, I wish one day there will be no need to prepare myself due to a finding of a "cure", I recognize that for the time being I need to be realistic with how FAVA impacts me. I hope one day I can feel comfortable laying down this book, my journey with FAVA, wide open on the table with open arms for everyone to read and most importantly, with my acceptance. I hope you all enjoy reading my blog. :)

-Becca 

Procedure's/Treatment Options and Definition of FAVA

Although I plan on covering multiple topics about my past and current struggles with FAVA, I wanted to start out with my past and upcoming procedures/treatment options. I included the dates and my age for each procedure I had done. All of my procedures were done at Boston Children's Hospital by the Vascular Anomalies team. I've had procedures done by 6 different surgeons and I highly recommend all of them including Dr. Ahmad Alomari, Dr. Steven Fishman, Dr. John Mulliken, Dr. Samantha Spencer, Dr. Arin Greene, and Dr. Raja Shaikh.

My current diagnosis is called FAVA - Fibro Adipose Vascular Anomaly but in the past mine was called a plethora of different diagnosis's such as a lymphatic malformation, venous malformation, COLA (congenital orthopedic lymphatic malformation) and lipovascular anomaly. FAVA is a newly delineated disorder of the lower extremities and was first published in medical books in January, 2014.


From an excerpt of the study titled Fibro-adipose vascular anomaly: clinical-radiologic-pathologic features of a newly delineated disorder of the extremity taken from pubmed.gov, defined FAVA based on the following results: "On imaging, the complex intramuscular lesions replaced muscle fibers with fibrofatty overgrowth and phlebectasia (dilation of the veins). The extrafascial component comprised fatty overgrowth, phlebectasia, and an occasional lymphatic malformation. The histopathologic features comprised dense fibrous tissue, fat, and lymphoplasmacytic aggregates within atrophied skeletal muscle. Adipose tissue also infiltrated skeletal muscle at the periphery of the lesion. There were large, irregular, and sometimes excessively muscularized venous channels and smaller, clustered channels. Other findings include organizing thrombi, a lymphatic component, and dense fibrous tissue-encircled nerves."

Past Procedures:

November 2007 -13 years old -sclerotherapy with sodium tetradecyl sulphate and embolization using 4 coils for one vein.

December 2008 - 14 years old – debulking surgery of FAVA malformation in buttock and removal of surface lymphatic malformations (3 small malformations on face, 1 small malformation on neck, and 1 large malformation on buttock)

October 2011 -17 years old - ultrasound-guided intralesional steroid injection with Aristospan (triamcinolone), Sensorcaine and lidocaine

January 2012 - 17 years old –  full resection of gluteus maximus muscle with FAVA malformation and plastic surgery

December 2013 – 19 years old -  debulking residuous FAVA malformation and plastic surgery

Upcoming Procedure:

September 2014 – 20 years old - cryoablation residuous FAVA malformation

(FAVA definition taken from http://www.ncbi.nlm.nih.gov/pubmed/24322574)