My story started when I was 12 years old. I woke up one Saturday morning with a swelling on my left shoulder, close to my neck. It was the size of a small Apricot, and the skin was a kinda gentle blueish colour. Even at that age, I knew instinctively that something was wrong, so I went straight into my parents’ room to wake them and show them my new addition. I could see the fear in their faces, and at that point, I knew there was something seriously wrong.
My parents took me to the surgical doctor the following Monday. I think it was around September 1992, and I was referred to a Cancer surgeon, “Dr Duffy”. I remember being terrified thinking I had cancer and thinking I might die. It took until 24th March 1993 for them to do what they said was a Biopsy of this lump, suggesting it was some sort of tumor.
They removed the whole thing, stitched me up and that was that. Results came back that it was a Benign Tumor, well that’s what they told me/my parents. I ended up taking almost 2 months off school and put on pain medications. It didn’t feel right though, I kept feeling like there was something tight wrapped around my shoulder and sharp prickly sensations. I didn’t even receive any follow-up treatment like physiotherapy.
Approximately 8 years passed and I was now old enough to take care of my own health, and things were no better with my shoulder. I was left with an ugly scar, which I was told would fade, and my shoulder had a swollen appearance. It looked to me like fluid under the skin. I was still experiencing weird sensations there too, so I went to the doctors and got a referral to the hospital (This is the NHS).
I got an appointment to see a plastic surgeon. I was rather confused but I went along anyway, only to be told there was nothing that could be done for my shoulder, because it would just lead to more scarring. I am not sure what they thought I wanted doing to it, it wasn’t about the scar, but obviously communication is not a strong point for the NHS. I left it at that, thinking this was just something I had to live with.
A couple more years passed and the pain and swelling was getting worse. I went back to the doctors, and received another referral to the hospital, not sure which department this was this time, but I ended up receiving a treatment to block signals coming from one of the main nerves (from the injection site, I am assuming it was a Brachial plexus block ). This procedure only worked for some of the pain. It was not long after this that I went back for another hospital referral, this time to a different plastic surgeon. At first, he did not know what it was and sent me away by saying there was nothing he could do for me either. I was not satisfied with this, because by now I was experiencing pins and needles down my arm and reduced use of my arm too. I was worried this was having a huge impact on my life; I was taking strong pain medications, reduced use of my arm and I could not go to work, I ended up leaving work altogether and resigned myself to this as being my life, defined by a growth on my shoulder which no-one knows what it is.
After going along to a pain management clinic a few times I was eventually diagnosed with Fibromyalgia. I am not sure if this was brought on by the life-long pain of this unknown growth on my shoulder, but I was not happy with not knowing. I started exploring on the internet and I was seeing my symptoms was that of some sort of Malformation a cluster of vessels, I assumed. Back to the doctors I went for another referral to the same plastic surgeon, this time he decided to do more exploratory tests. Nerve conductivity test showed there was indeed damage to the nerves in my arm, but not conclusive because I could not allow them complete the test because of the sheer amount of pain I was in. Next, I was given an MRI scan. This showed that this growth was attached to the Median nerve on my shoulder. The plastic surgeon gave it a name: “Vascular Malformation.”
Finally, I had a diagnosis. At that time, I didn’t know the extent of this “Malformation.” I was told that they could not operate on it because it was located on my Median nerve, and I would risk losing the use of my left arm. This scared me, so I did not attend my next appointment, so I was automatically discharged. After a couple more years passed, I realised that I missed having fun with my daughter because of being so drowsy on medications and despite this I was still in pain. I thought about what life would be like without pain, and what life would be like with a useless left arm.
After a long time thinking about this, I decided I would rather be without these pains, so I went back for another referral to the hospital. This time, I was referred to a different plastic surgeon and he revealed that this was an Arteriovenous Malformation, which is a higher grade than just a venous Malformation. Again, I was told I would not benefit from having treatment because I would still be in pain. I told the doctor I am not going to just sit back and let my life go by, and that I want this AVM treated.
He tried again to tell me what a bad thing treating this would be, but I was more determined this time. I was refereed then to an Interventional Radiologist “Dr Jana Maskova” (My angel in disguise!). She took me into her room that looked a lot like a classroom, she asked me if I knew what is on my shoulder and wanted to know if I understood what it is and what it does. From the research I had done myself on the internet, she was very surprised with my answers. She at that point knew I knew everything about my AVM, so instead, she spoke with me about the different methods that can be used to control this. She also told me of the risks of blood clots, but this time, I had all confidence in this doctor, and knew I had struck jackpot with my future treatments.
She recommended I have an Embolization on the shoulder. She also advised that my AVM was quite large and it may take 3 or 4 procedures before its fully closed. She booked me in for 4 weeks later. 15/03/2013 was the date I had my first Embolization. The procedure wasn’t too bad, the breathing tube from the general anesthetic affected my breathing slightly because I have Asthma. I had quite a lot of bruising, but i was discharged from hospital the very next day. It was 3 weeks later that I was able to stop taking the very strong pain medications and 6 weeks after the Embolization, I was almost back to how I was before the treatment. I noticed I was in less pain and I had regained more movement. I was elated.
I then had another appointment to see Dr Jana Maskova 9 weeks after the first Embolization. She informed me that the treatment was partially successful; she revealed that the AVM was not only located on my shoulder but had actually branched out down my arm too, and that it was larger than initially thought. She booked me in for my second Embolization the following week 24/05/2013. The second Embolization was far less painful than the first, and I felt like I could go home straight away. I didn’t even need the extra pain meds they prescribed for me.
Well, today is the 7th June, the bruising is just starting to fade, I am currently waiting for my next appointment with Dr Jana Maskova. My shoulder is obviously filled with the Embolization chemical, and it is more swollen than before (Without much of the pain though). The arteries are prominent under the skin, but this is a work in progress. I am told Embolizations work by thrombosing the Arteries, which is why they are prominent. I think I will be getting another one or two more Embolizations, and I also heard that there is a possibility I may need reduction surgery to remove the thrombosed Arteries.
Who knows! All I can say is, I am happy, I have a 100% positive diagnosis after years and years, I have a wonderful Interventional Radiologist and treatment looks to be giving me something positive to look forward to. In response to my experience of this AVM, I set up a support page on Facebook to help others facing the same situations as I have: ArterialVenousMalformation @ Facebook.