4 1/2 weeks and A LOT of Lessons

I apologize for the delay in updates, between there just not being much to tell, my adjusting to medications, and my lack of motivation, the blog just has not made it to the top of the "To Do" List. I honestly have just been resting and taking short trips out to the grocery store and doctor's appointments.  I am just 4 1/2 weeks post op and, minus today, have really felt better in the last 4 1/2 weeks than I have in the last couple of years.  If you have read my list of symptoms entry this will be impressive, if you haven't you might check it out.. The only symptoms that I have experienced since the surgery have been slight balance issues, a few minor headaches that have managed to be squashed by the new migraine med cocktail they have given me, which is a huge deal for me because in 20 years we have never found anything that would touch them, and then the numbness and tingling.  So there have been HUGE improvements with the surgery, but of course, I still manage to end up frustrated.  The numbness and tingling in random places and often my entire body is just flat ANNOYING and I had very high hopes that that would be one of the improvements, and so far it doesn't show any signs of letting up.  While I do know that Dr. P has said it could be 6 months to a year before I would know how much of that was just angry pinched nerves and how much is actual nerve damage caused by the syrinx, it still is a massive reality check to me that I am not "fixed" and there is no cure for Chiari.  The last time I spoke with my neurosurgeon she said that I had to accept the Chiari as a chronic illness that was not going to go away and that I had to learn to accommodate it.  So, I will always have good and bad days, I will always have Mush Days, and I will never be normal again... not that I can claim I was normal prior to Chiari invading my life, but still, you get the picture.

Although the neurosurgeon considers me one of her worst surgical cases but one of her best improvement cases, my surgery is going to prove to be just the tip of the iceberg for my family dealing with Chiari.  My twin sister is showing some of the most blatant symptoms of Chiari and must be scanned soon, as well as my son is showing classic Chiari headaches and pain, which right now are responding to blood pressure medications, which most of us Chiarians know that if a blood pressure medication is controlling the headaches  they are because of increased pressure in the head.  Bouga has 11 MRIs and Dr. Grant has reviewed them.  He has told us that while it does look like it might be tight quarters in his head currently, he doesn't see any out right signs of Chiari, but we will have to monitor him closely as Chiari 1 often does not show up on scans until the patient is in their mid to late 20s.

So, right now, I am trying to assimilate to my new life and build my endurance back up to survive a day without break through medications and naps, and I am beginning to get out and do things that I had not been able to or willing to do for so long before surgery.  I am working on stairs and balance, and awaiting permission to drive again.  At this time my target for returning to work is the first of December, but we will see if I can get everyone else on board with that!!!  I did manage to survive the Halloween party, all dressed up and proudly showing off my new zipper, which meant the world to me since Halloween is my favorite holiday and I have not felt like going out for a Halloween party in a couple of years. My head later told me that going to a bar with loud music and dancing 3 weeks after brain surgery was not the smartest idea in the world, but it was great for my soul to get out and see my friends and know that there are important parts of my life that I AM going to get back.

In my down time I also have a new addition to my ink collection, a black and purple COURAGE on the inside of my right wrist.  Although the placement might surprise several that know me because I have always said I would never have a tattoo that I couldn't cover up, this just felt like the right place for it.  It seems like over the years having courage has become a constant for me, and the Serenity Prayer has always been a staple in my dealing with difficult situations.  "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."   Courage just seemed to fit me, and of course the purple shading is for Chiari awareness.

I have been completely humbled over the last few weeks to have learned the massive support system that was behind me during my surgery and continues to be behind me during my recovery. Friends, Family, Acquaintances, Facebook friends, family of friends, family of Facebook friends, and even people on Facebook and in prayer groups who have no idea who I am but learned of my Chiari Fight. I cannot thank everyone enough for the thoughts and prayers and love stretched out to me and my family and loved ones. God Bless each and every one who has added us to their thoughts, I fully believe it is because of that amazing support that I have done so well and continue to improve each and every day.