2 Years

I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:

Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??

Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.

Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.

Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.

That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.

 

Acceptance?

*****I actually started this post in October....just getting around to posting it now****

I have had a sort of shift in my thought process in the past few weeks. You hear about "acceptance" in the stroke world and it always carried such a negative sort of connotation for me. As if accepting any of these deficits means I've surrendered, quit, or given up....and that is NOT what I'm about. I am persistent like crazy so how could it possibly be that I am coming to place of acceptance. Perhaps it's a different kind of acceptance, my own kind...that means I only accept certain parts of this for the moment...for now. I still hope and pray I will get better but I need to be cautious to not allow my not fully recovered state to limit me. Rebecca, from Home After A Stroke blog wrote a short line that has really sat with me and helped me move more towards acceptance than ever before. "Waiting for my real life to begin." That's exactly how I have felt. Once I'm all better I could do x, y, or z. Well guess what....this is my real life...I'm not all better. I'm lucky to be here and be as good as I am. I need to move forward and stop waiting for my real life begin. Coming to that revelation was very emotional. My life is far from the way it was, I'm not sure when or if I will ever get where I want to be. It doesn't mean I'm giving up on getting better ever...it just means that I'm going to continue to live in gratitude where I'm at today. Living with my current deficits means I need to make some changes. I'm going to need to ask for help sometimes...even though I hate asking for or needing help. This fatigue is consuming at times. It's frustrating for me to want to do so much only to find my self NEEDING to sleep a few hours after I woke up. I have spent the better part of 2 years trying to find a solution...to which nothing much has helped. I remain optimistic because I am way better than I was immediately post-op, but I still have a long way to go. So far there has been no great explanation for why my fatigue is so intense. Some of the doctors have called it "post stroke fatigue" PSF and they said I could deal with this forever. I hope they are wrong. There is little research focused on PSF, although it is a very common occurrence after stroke. This is my most limiting deficit today, and yet I am comfortable accepting it and moving forward. If I was left with a leg/hand that didn't work, I would have to use an AFO or brace to help me...I need massive amounts of sleep, breaks, naps. That's just how it is and I am LUCKY! I'm not waiting for my real life to begin anymore and that makes me happy! :)

Tackling fatigue

I am now a year and a half out of deep brain surgery and stroke. Fatigue is a deficit that I can not yet escape. My recovery has been excellent except for this fatigue. I HATE it!! I am constantly reading, researching, trying to figure out how to fix it...a mostly fruitless effort. But I never give up HOPE that it will get better. When? How? I have no idea, but the following outlines my latest effort.
I saw an endocrinologist to make sure there are no other medical explanations for the crippling fatigue I deal with daily. It seemed like a good idea because after brain surgery one can never be sure that something else didn't go wrong while they were in there. I also have hypothyroid (onset 4 years ago during my pregnancy) which is often a cause of fatigue, but supposedly my thyroid has remained stable according to my PCP. My opinion is that my thyroid is at least part of my fatigue problem, but I can't be sure. So, I had a full work up with the endocrinologist and there were a few issues identified. According to the tests, my thyroid was within the "normal" range and my blood sugar is low frequently. The doctor changed my thyroid to Armour and doubled the dose despite the "normal range". What do you know? I got two more hours out of the day. Previously I was awake for 4 hours twice a day, now I'm awake about 5 hours twice a day. So I think I'm heading in the right direction. My assessment is that I need more thyroid, and I need to do something about my diet to regulate my blood sugar better. I probably need to eat more frequently. Since my surgery I am less hungry, my body just doesn't seem to send the hungry message, so now I'm trying to eat at least every few hours even when I'm not hungry.

Next, I saw a naturopath. She did an assessment and made a ton of recommendations both dietary and supplements. I went home and started to look up all the supplements and was completely freaked out. I don't like taking any mediation and supplements are even more scary to me since they are not regulated at all. There is no guarantee that what they say is in the bottle is actually in there and sometimes they don't even know the active ingredient so there is no chance of "dosing" the unknown. You can not easily look up interactions, contraindications, adverse reactions, and such like prescription medications. The research on supplements is largely anecdotal and rarely includes double blind, controlled, peer reviewed, published studies. SCARY!!! I like evidence based medicine. But I want to feel better so badly and maybe this stuff just might work, but at what risk? Oh, what to do? I did a quick look up of all the supplements she had recommended and most of them contained ingredients that had the potential to lower the seizure threshold and figuring out which could be blood thinners was close to impossible(anyone with cavernous angiomas must avoid anything that thins blood)..YIKES!! and no thank you! I'm trying to get better not worse. My risk for seizures is high since I have "persistent hemosiderin" "remnants of old blood from my bleeding angioma" (they were not able to remove all of my blood stained brain during my surgery because there was just too much.), and now I also have scar tissue that can create seizures. I am also off anticonvulsants by choice, risk known to me, which puts me at an even greater risk. So  anything that can potentate seizures is out for me. To me that is what is frightening about alternative medicine. Some people think, "It's natural...it must be safe." No way!! Supplements can be more dangerous than pharmaceuticals, even though it's pharma that gets a bad rap.

The diet recommendations were a whole other story. The purposed diet was: no dairy, no caffeine, no gluten, no corn, no beans, no white rice, no soy, no nightshades(potato, tomato, etc.), no mushrooms, no eggplant, no carrots, exchange regular sugar for stevia when possible, no soda, and no alcohol. So what's left exactly? Not much. As much as I was less than thrilled with the purposed restrictions...I thought I had to at least give it a try. For one week...I did. I lost 5 lbs that week and felt like I was starving...still completely exhausted. No different in the energy dept.

Needless to say, the whole thing was a waste of time and money. The lady did refund my money for all the scary supplements she recommended, after arguing with me(which was completely annoying to me). Especially since she told me that I was "lucky" she was not charging me for the time that she spent arguing with me on the phone. Please, I already spent $300 on the office visit that was a complete waste I think if you are in the professional business of recommending supplements you should be completely informed of the risks involved. As a nurse, it was my responsibility to make sure that each and every drug, prescription, intervention, was appropriate for my patient. Sometimes the doctors made mistakes and it was my job to make sure the drug, dose, etc. was right for the patient. If you are in healthcare it is your duty and responsibility to not cause harm at the very least. I expect the same level of responsibility and accountability from members of my healthcare team that I provided for my patients and I think it's complete crap when my expectations are not met. 

As for my fighting fatigue plan, I'm starting to run out of ideas, but I will never give up hope.

Learning to just BE

Many parts of this whole "brain thing" have been difficult...and I have faced many challenges along the way...but one thing that I have gained is priceless. Previously, I was borderline OCD....type A personality....a "perfectionist" of sorts. I was also always on the move, going, doing, busy, very busy. I held several jobs at once while in college. I was always taking a class, earning a certification, maintaining a licence, on and on. I was going in a million directions all the time. A brain problem and major fatigue is a sure way to put an end to all that chaos. It's coming up on three years since my initial diagnosis and my life is completely different. While my new attitude would likely make me "less employable" it doesn't matter today and I am finally enjoying my new found ability to just be. There are days...sometimes weeks that I don't actually do anything or go anywhere, and I'm ok with that. Doing nothing, or going no where would have made me crazy before. Prior to all this if I didn't have my car for a day, I would feel claustrophobic. I guess not being able to drive at all for almost 2 years is a sure way to fix that. I can drive now, but I rarely do. Accepting and embracing my new lifestyle was a slow process for me and quite an adjustment. I certainly shed many tears along the way, frustrated when I "couldn't" do this or that. Now, I'm completely content to just be...as long as I get a nap. ;) Even as I improve I hope to never fall back into my old ways. We recently went on a vacation to Kauai. It was a fantastic trip, and I spent most of my free time just taking it all in...from my lounge chair overlooking the ocean. I didn't need to be snorkeling, going, or doing anything. I was content just hanging out. With a very busy three year old, the opportunity to just be is far and few between, so I am glad to be able to sit back and enjoy the few fleeting moments in time when nothing is happening. I'm so thankful that I am now able to really capture the moment and I have learned how to truly savor it.
    

Cental Pain Syndrome (CPS)

While this term/diagnosis might be unfamiliar to many of you...the symptoms or complaints are possibly painfully familiar. Central pain syndrome remains a bit like a "mystery diagnosis", in that there are few doctors identifying this syndrome. There are likely greater numbers of survivors suffering in pain alone because doctors have failed to identify CPS. Even once the culprit of the pain is identified, there are few treatment options today. :( My dear friend, Patti G, is not only afflicted with multiple cavernous angiomas but she also has been afflicted with this monster and she is doing her best to "get the word out"...so that CPS will not longer be such a mystery...and hopefully some day there will be a solution to this terrible pain. Please help spread awareness by sharing the fantastic video that she put together. Watching this really puts my fatigue in perspective.  As much as I hate being tired all the time...at least I can escape it while sleeping. Pain is truly the worst deficit imaginable to me.

HOPE

I saw this on another survivor's blog. While his recovery is seemingly not a brain injury, to me the message is the same. HOPE is so powerful...don't let anyone put limits on your recovery. Your recovery is over when YOU say it is...That's it!! I love this video!
Warning: I don't know about all the falls he took...looks pretty dangerous to me, and the standing on his head...no way!!But his focus and determination are simply amazing!! 

Thanks to Barb for sharing it. She wrote an article,  http://www.communityadvocate.com/2012/06/18/i-was-just-thinking-about-disabilities ,and someone responded with the video. I had to share it and I can hardly wait to see the movie.http://www.inspiredthemovie.com

WHY? Why did I decide to have surgery?

I have been asked this question many times. Just recently a reader asked again, and I don't think I've ever spelled it out here...so here goes.

My decision to have surgery was by far the most difficult decision of my life. By no means is my explanation an endorsement of surgery or a suggestion to anyone else to have surgery. Surgery is a very personal choice and one that I think warrants much thought. When I was first diagnosed 8/31/09 with a cavernous angioma in the middle of my brain (located right insular cortex/putamen/internal capsule, basal ganglia), I was told by my the first doctor that I had better hope I never needed surgery to remove it because they will never be able to get it out without causing significant damage. The first doctor also said not to worry about it because according to her "angiomas NEVER cause problems." Well, she was wrong in almost everything she told me. I went on to get several more opinions because I had a list of questions and nobody could answer them. I didn't feel comfortable with the opinions and advise I was receiving and as a nurse I had a decent understanding that many of the MDs I saw were blowing smoke...they didn't know what they were talking about....and I wasn't buying it. Basically, I saw doctor after doctor looking for real answers. Meanwhile, I was feeling worse and worse. My choices for doctors were limited at first because I had an HMO insurance plan. Prior to this diagnosis, I was never sick, never went to the doctor, and I wanted the cheapest form of insurance I could get. When you end up with a brain problem, HMO insurance is pretty much a bad idea (I don't want just anyone poking around in my brain...only the best of the best if absolutly necessary, please)...so I eventually switched to a PPO and then I could finally see some real experts and I started to get very different answers. While the first few doctors I saw said no surgery, they also knew nothing...so how valuable were their opinions? Eventually I saw Dr. Martin at UCLA, who has an excellent reputation. First time I saw him, he said I needed more testing, "a better work-up". I saw a bunch more neurologists and went back to him with my list of remaining questions. He seemed pretty annoyed with my barrage of questions and ended up giving me a flip-flop answer to surgery...No then yes, but maintaining that I will more than likely NEED surgery because of future bleeding and resulting worsening deficits in my lifetime. I wasn't sure what to do, but I was finally getting answers. I sent all my "stuff" to Dr. Spetzler and his resident called to tell me that they recommended surgery. My heart sank. I felt sick...now what? I had a lot of knowledge at this point and was hoping he would say, "Let's wait and see." I felt that if one of the best experts told me to wait and see...then that would be it....wait and see. The resident told me that they felt my risk was much greater to leave it than to remove it. Based on my MRI's and my worsening condition I knew he was right, but I was so scared. I had an MRI every six months from diagnosis and each time my cm was bigger and showed new bleeding. One year from my initial diagnosis, my cm had doubled in size to about 4cm.  The growth and bleeding coincided with me feeling more dizzy, more frequent partial seizures, worsening vision to the point I could no longer drive, and a few occasions of not being able to walk. Not being able to walk was really scary as were the seizures. It was becoming obvious that I might become paralyzed because of the surgery, but I might also become paralyzed without the surgery. At first, I was worried that having the surgery might make me worse....but I was getting worse anyway. I began to feel like,"What am I waiting for?" Still not convinced I was making the right choice I connected with others that already had surgery and I sent my "stuff" to more experts.(While no surgery or recovery is the same, talking to others helped me tremendously.) Dr. Samson in Texas has a great reputation so I sent my stuff to him. He wouldn't give me a recommendation unless I was physically in his office and Los Angeles is a long way from Texas...so I never actually got his opinion. I also sent everything to Dr. Steinberg at Stanford, who is also considered one of the best, and he recommended surgery too. I was getting good at asking questions by then, and his nurse practitioner gave me all the same answers as Dr. Spetzler's resident...so I finally felt I was on the right track. All my questions were answered the same...finally!  Connecting with others who had been there done that was invaluable and a big reason why I put my story in this blog. There were so many wonderful people willing to share with me their ups and downs, their personal experiences...I am forever grateful to them for helping me make my best choice and for supporting me from start to finish. :)  The main criteria the doctors gave me for recommending surgery for me were: my cm was big 4cm...since it was so large, the potential for a very big bleed was increased, my cm had a history of bleeding (more than 3 times already) so chances were higher it would bleed again, my age (36 at the time) "young" according to them giving me many years of possible recurrent bleeds without surgery and younger people tend to recover better, I only had one angioma (having multiples changes everything),and they thought they could access my cm without much damage. There was also the added bonus for me, that if my surgery went well I might get to have another baby...which I would love! I believe that my first pregnancy/delivery was the trigger for my angioma to bleed and grow. I knew that I could not consider another pregnancy unless my angioma was removed, the risk of further bleeding and progressive deficits was just too high for me. While a possible future pregnancy was not my only or primary reason for having surgery, I did view it as a possible bonus. Being a mom to Jack and wife to John were my two most important goals. Would I be able to be all I wanted to be without surgery? Long term, would I be better or worse off with or without surgery? Those are the tough questions that nobody can answer. I suspected that the surgical risks they quoted me, 5% chance of all the scary stuff was probably very optimistic..but I wanted to believe I would be lucky enough to avoid all the scary things...especially death. Honestly, I think the surgeons should do a better job of explaining the reality and high risk of brain surgery, especially deep brain surgery. I guess it was their attempt to make me more comfortable with the whole thing. It didn't work...I was terrified, but ultimately I knew it was out of my hands once I decided surgery was my best option. I knew from doing tons of research that my location was terrible. It's a really tough spot to get to and it all comes down to splitting the Sylvian fissure. If that part goes well...hooray!!! If not, ut oh! The brain stem is often considered one of the most difficult locations, but I knew mine was right up there in terms of difficult access, and ultimately that's why my surgery resulted in a stroke...very uncommon for angioma surgery especially with Dr. Spetzler. My Sylvian fissure did not want to be split. There were several blood vessels in the way, so it was either they cut one vessel and take out the angioma or they stop the surgery and tell me, "Sorry, we cut your head open and started, but we can't get it out." They made the executive decision to proceed with the surgery and I am thankful for that.

Some people go into surgery with the expectation that they will not have any new deficits following surgery. To me, that is a naive and unrealistic expectation. As a nurse, I always felt that once you have brain surgery "all bets are off". You might survive but will you be you? I don't remember which book it's from but this line stuck with me, "Brains are not built for service".  Brain surgery is always a BIG deal, and I felt/feel very lucky to be alive and to still be me!!! When I woke up, I was a mess...I knew it...and I was a tiny bit scared...but I was very HAPPY!! I thought I'm alive, I am still me, we can work on everything else, and I still feel that way today.

For me, the decision to have surgery was the right one. Maybe for others, they would have been wrecked by the whole stroke complication. I knew that stroke was a possible risk...while I was hoping to avoid it, I know there were far worse things that could have happened to me. Living with the monster that was in my head and the reality of a lifetime of progressive neurological decline would have been worse for me. I wanted to be proactive about my life and not let this angioma consume me, as it had for the year prior to my surgery. My angioma was growing and bleeding actively for a year...it was horrible!! There were days prior to my surgery when I couldn't do much of anything. Jack was small and just learning how to walk. Some days I would just lay on the floor blocking him and I into a "safe area" and hope we would survive another day. I had surgery ultimately to reclaim my life that I felt was slipping away, and I am glad I did! Please feel free to ask me any questions if I left something out that you are wondering. Best wishes to anyone out there contemplating surgery. I know how hard that decision can be. My advise :get as many opinions as you need from  cavernous angioma experts and then weigh your decision carefully.