I am a Survivor.
The majority of you barely found out about this through a post that my friend posted through Facebook. The actuality of this is, is that I have been living with the symptoms for over a year. I'm not one for self diagnosis or self medicating so a lot was just willed through on a daily basis. The correct term for what I had is called a "hemangioblastoma". This is basically a benign, but rare, tumor of the central nervous system. In my case, it resided in the cerebellum and composed of stromal cells in small blood vessels. The only treatment option for this was to have it surgically removed. I still do not have a thorough understanding of this but just the basics. The one thing that I can say that I truly understand is what I have experienced. Attempts to join chat groups or any type of online support groups were not successful. I had asked my surgeon if he knew of any for my particular case and was answered with what I had already knew. There are groups out there but not for your particular case. Well, I may not be able to educate anyone but I want to at least help by giving you an idea of what to expect if you are ever that person who is diagnosed.
Today is the 27th of December, and my surgery was on the 14th. Since I can't compare how most would be at this time of their recovery, I can tell you that I am going crazy. Let me back up and say that I am a very independent person so I have had to come to terms with getting help. I still have a long way to go with asking for it. Going into this, I was given the expectation that I would be out for 2 months. This seemed like a life sentence for someone like me who can't keep still both physically or mentally. It is about to be exactly 2 weeks from surgery and I have only been downstairs of my home for one day, Christmas. I was told that the first month, I would typically be in bed and sleeping a lot. I find that I'm in bed but not sleeping. Prime example is this blog.
So let's go back to around August 2015. Every once in a while I would get this intense pain in my head when I would laugh hard which I would write off to me probably holding my breath while laughing. Then it started when I would need to use the restroom and have to bare down and the pain would present itself all over again. Over time, it became more frequent and intense. Days of fatigue and long headaches were next. Once I noticed that Advil, Aleve or Excedrin were not helping, I just didn't bother and would deal with it. Push forward to September 2016, I said screw it, I'm finally going to email my doctor. Keep in mind that I have made at least 2 previous visits before but was given anxiety medication and ibuprofen to help. Well this time, I emailed her requesting an MRI reminding her of the symptoms that I have had and like a miracle, she put the request in that day. I was scheduled for my first MRI that Sunday. Monday, I got a call from her with her first statement of "I'm so glad that I went with my gut feeling and requested the MRI instead of following protocol". The next morning I was scheduled to meet with a neurologist. My husband took me to the appointment since I am now fillled with all kinds of emotion and uncertainty We look at the MRI and left with some ease because it was given to us that it could possibly be what they call a hemangioblastoma but it was so small that this could have been something that I've had my whole life but that it would be referred and looked at further. I was to keep a health log and have another MRI in about 4 weeks with a phone appointment to follow.
Logs were kept and my symptoms seemed to be practically present all the time. Now the pains would come without laughing or using the bathroom. I would even get them by simply leaning forward, moving up and down a step or just walking. Well that phone appointment came a day early without the MRI every being done and that same surgeon explains exactly what we spoke about in his office and his small idea of this "hemangioblastoma thing" to being, well this is what it is and we will need to schedule you for surgery, the earlier the better. Since this tumor is surrounded by fluid and blood vessels, we don't want to take a chance of it rupturing. Well how do you manage life for the next six weeks? I most likely didn't plan things conventionally since I am a business owner, mother, and a makeup artist with scheduled appointments. You never want to be that person to tell a bride that you can no longer do her hair and makeup for her wedding that is only a month away. Luckily, she was amazing, took my referral and wished me luck.
So tomorrow is my 2 week follow up and I'm excited and nervous because I am not sure what I should be feeling right now. How am I supposed to be progressing? The pain is still present, my incision hurts like hell constantly and half my head is still numb along with my ear feeling like it is bruised. Well here goes and I will update on status and expectations.
