Some of you may have never heard of some of the conditions that rule my life. I thought I would do this post to give you a bit more of an In site into what is FND and AVN and how it effects me.
AVN, is short for avascula nercrosis, also known as osteonecrosis or bone infarction. It is a rare disease that can be caused by a few different things. From steroid use, drug and alcohol abuse, some disease like sickle cell and cancer and trauma. Sadly, for some people the cause is something called idiopathic. This is when their no known cause for a condition. So what actually is AVN. It is when the blood supply to the bone is damaged or interrupted causing the blood supply to the bone to be cut off. Due to the blood supply being cut of the bone starts to die. Then as the condition develops the bone starts to collapse and crumb. This causes extreme pain. Leaving the patient unable to perform their normal every day tasks.
When my hip started to collapse I lost a lot of my life. I couldn’t walk or move unaided at all. In side the house I was on two crutches, and outSide I was in a mobility scooter.
When my hip got worse in the December 2016/January 2017, I made several appointments at the GP as well as contacting my orthopaedic consultant and no one took me seriously. I was just told that I had to deal with it. Then I had an accident in May 2017, which landed me in A&E. I was sent for an X-Ray then told I was fine, and to take paracetamol then sent home. Then a couple days later my x-ray was reviewed by senior doctors to find out, that I shouldn’t have been sent home. I should have in fact been taken into surgery for a hip replacement as soon as possible. My hip had collapsed. It was then arranged for me to have a hip replacement. I had to wait 3 months but at least I knew what was going on. Then on August 2nd my dad took me in. I was the taken into surgery. It was while I was in surgery that they noticed that my hip had deteriorated further. The hip had collapsed even more. I was then brought round from the drugs. The recovery was not easy by any means. It was slow and painful but 100% worth it. So that’s AVN.
Now let’s talk about FND. Functional neurological disorder. This condition has similarities to MS, epilepsy and Parkinson’s but with one difference. It doesn’t show on scans of the brain and spine. It is a complex illness that effects all different parts of the body. I will explain how it was I was diagnosed. So a couple months after I had my hip replacement I started to have what felt like inside hiccups in my tummy, which shock my whole body. It was horrid, then my eye sight started to deteriorate. My vision went blurry, I couldn’t focus my eyes, it was horrid. I would also get tunnel vision. My inside hiccups then developed into seizures. In January 2018 I was sent to see a neurologist at my local hospital. It was at that appointment I was told it was FND. However, much to mine, my family and my GPs surprise I wasn’t given any form of after care or follow up appointment. So I did my own research, and found out that St George’s in London ran a FND clinic. So I took the information to my GP and he arranged the referral.
At St. George’s it was confirmed I have FND and I was also given a treatment plan, which includes an inpatient program.
So what are the symptoms and signs of FND? Well, everyones experience and symptoms is different. For me, my symptoms include non epileptic seizures, memory loss, shaking and trembling, speech impediment, vision issues, numbness of limbs, loss of use of limbs and extreme fatigue and tiredness. At times it can be absolute hell. I have had to cancel on friends, miss out on family events and more. However I try to not let it own me or rule my life. On the days that my symptoms are horrid and controlling, I chill out at home with Sam, Becca and Alex. We watch movies, I do admin work, we do drawing and other things that I can do sitting down. If I have a day where my symptoms are over powering but we need to go out to appointments or other places I will go in my chair. I try not to let it own me, I try to work though things and try and do what I want and need to do.
So that is a little more about AVN, FND and me. If you want to know more, ask anything please do not hesitate I contact us I am happy to help with what and where I can.
Until next time.
The disbaled mama xx