Healing: 4 Months

I’m officially 4 months post-op! Interestingly, it is also exactly 1 year since my SCDS symptoms started out of the blue one day while I was working in my office quietly answering emails. Oh how life can change in 365 days! A year ago, I never would have guessed I would be diagnosed with a rare syndrome and would need brain surgery to correct it! It still feels a little surreal to say “I’ve had brain surgery…”Crazy what life can throw your way!

So I am now 3/4 of the way to my 6 month mark, which was when my doctors said that I would really start to feel well, and I’m 1/3 of the way to the 1 year mark, which is when they deem healing “complete.” They say time flies right? Well, recovering from a craniotomy slows time down a lot! And yet, I’m amazed at how much time has gone by. April 2nd feels like decades ago.

I don’t measure my progress day by day or week by week anymore…rather month by month more-so now. I can say that August is much better than July was. And July was much better than June. Each week I think to myself “Now I’m finally feeling better! I just thought I felt good last week…but this is what healing really feels like!” I’ve probably played that phrase over in my head at least 12 times now as the weeks go by.

I struggle with describing this recovery, it’s all very intangible. There are often no words to describe how I feel, which is frustrating. So I try to focus on the things that are measurable and tangible.

I really turned a corner at the 3 month mark. My balance is amaaaaaazing, I can’t even remember the last time I had vertigo. Whooo! Praise God! The nagging pulsatile tinnitus which was still with me constantly just a few short weeks ago and since diminished greatly. Occasionally it will return for a minute or two, but it is quiet and doesn’t rattle my head like it did before. I will have consecutive days go by where it’s completely gone. That has been a HUGE blessing! I can officially say now that 90% of my pre-op symptoms are GONE. Gone gone gone gone, never to return again!

The primary area where I am still struggling is over-stimulation. I already joke that the speed limit of my heart is pretty slow, but it’s much much slower you add brain surgery recovery into the mix! If I encounter stress, my brain turns to mush. It can be as simple as listening to complicated music while also writing an email or talking on the phone while sitting in rush hour traffic. If there’s too much going on (Whole Foods at 12pm, I’m looking at you!), I’m done. Unfortunately, it can also be completely self-induced…if I think too much about something stressful (running a business, anyone?) or my emotions are high, it’s like all cognitive operations come to a screeching halt.

I still have quite a bit of pain and numbness at my incision site, but my jaw muscle is healing well…I can almost bite into a big cheeseburger 😉 I’m sleeping better, walking further and generally trying to get back to living life, just at a slower pace.

On a slightly different note, I *think* I’m getting to the end of my medical turmoil with spinal taps (gah!!! h.a.t.e. them so much) and trying to figure out what’s going on with the inside of my skull (bone wearing away, cysts etc.). I went back in for another spinal tap 2 weeks ago. While it wasn’t as traumatic as my first one, it was still absolutely awful and an experience I never want to repeat again. We had the added help of radiology, 2 doctors, 3 nurses, Ativan, a triple dose of Lidocaine and it was still excruciating. But at least this time it was successful and we got results! My spinal fluid pressure levels were normal!

This was such a huge relief, because if they were high it would have meant yet another surgery. That has been hanging over my head ever since my neurosurgeon at UCLA mentioned the “concerning imaging” he saw prior to my surgery. So YAY for not having to worry about that anymore! Since the spinal fluid results were normal, we can officially rule out intracranial pressure. While we’re not sure what exactly has caused the abnormalities, we know that it’s likely not the result of something “bad.” I think this means I can close this chapter on this. Now I can hopefully just focus on healing well without worrying about other medical stuff! Thanks for your prayers through the past few months!

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