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. 

No "wonder drug" and April updates

Of course, we all know there is no such thing as a wonder drug...but I was foolishly hoping there might be something out there to help me with this dreaded fatigue. Back in November the neuro-psychologists that I saw said I would be a good candidate for fatigue medication. I was skeptical because I HATE taking medication, so it was a complete stretch that this could be a part of my solution. I am super sensitive and usually react negatively to medications, but after reading the side effects for the first purposed fatigue medication, Amantadine,...I thought the possible listed side effects didn't seem so terrible and it was worth a try. My fatigue is so terrible that I am willing to give almost anything a try.
This past month seemed like a good time to try to tackle my remaining deficits and hope for the best. My plan was to see a few new neurologists...hoping one might be a match to work with me on my remaining issues. It turned out to be a complete disaster. The doctors were not good and the medication...oh....YUCK!! The first neurologist was actually very smart...I think...but hardly gave me any time and he just wasn't my type. He said some of my complaints were permanent, which I never want to hear, and don't agree with either. How does he know that my leg/foot muscles will never get better and my left shoe will always fall off? I don't agree and I don't want to work with a doctor like that. He also prescribed the first medication. He said there were 3 that are used commonly for post stoke fatigue, and that if the first didn't work, we could move onto the others. He suggested that I start one a tiny dose(50mg) of Amantadine and work up to a full dose(200mg) in a month's time. He said the primary side effects are GI related and are normally only seen when taking large(greater than 200mg/day) doses. I went home and looked it up right away. It's actually an old anti-viral drug that some people noticed the side effect of fatigue relief. I read several positive testimonials, and hoped this could work like magic for me. I was hoping that at the least I might get some placebo effects because I wanted it to work so badly.I took 50mg once a day for 2 days and I thought I was going to die. It was horrible. My heart was racing/pounding, anxiety like crazy, neck and shoulder pain (tension type pain),zero patience, terrible insomnia. I was still exhausted but I felt so uptight I couldn't sleep. There was nothing to be stressed out about and since I've had surgery, I am always super calm...it was obviously the drug, although nothing that I experienced was listed as a possible side effect. I felt horrible, and decided even though I was only 2 days in, I could not take any more. The next day(day 3) I had already abandoned hope that this was my answer and I didn't take it, I got the worst headache I've had in a long time. My eyes were messed up, dizzy, nauseous, excruciating pain. Like a migraine, but slightly different. The next day (day 4) it was gone...thank god!!! That's it no medications for me. I decided I need to be more patient and wait it out. I need to stick with the basics: good food, exercise, and regular sleep. There is no wonder drug to save me from this fatigue monster. I sorta feel like I wussed out only two days in. I wanted to know that I've tried everything to reclaim my life, but my experience was so horrible with the Amantadine, I just can't bring myself to mess with my head and body like that again. I just keep asking for patience. I am a doer. I want a plan and the energy to complete it. I would rather work super hard at something than stand around and wait for it to be done. "Waiting" to get better is really hard for me.

I also saw another neurologist later in the month...the WORST one yet...and that's saying a lot because I've seen my share of clowns. I left in tears because I felt like he was my last hope to work with me on my remaining deficits. I shouldn't have let it bother me, but it did at the time. Looks like I will be working on my own. He clearly didn't know anything. I could ramble about all the misinformation he gave me, but I'll spare you the details. Basically, he said all my problems were "in my head", which I always partly agree with. ;) Seizures, stroke, bleeding angioma...yes, all technically in my "head"...but fictional....oh I wish...that would be easier to fix right?!! This has been an ongoing issue for me. If you "look good", there is nothing wrong with you, no matter how much "proof"(MRI's, EEGs, etc.) you have that something is not right. I can just hardly wait to feel good again and forget all these clowns that don't have a clue.


I have one last specialist to see next month, an endocrinologist. We'll see what he comes up with, but so far the doctors have been a waste of time.


I also attended a new stroke support group this month. I have wanted to attend some sort of support group forever, but there were not any in our local community. I saw an ad  for a new group right by house. Perfect! It was great, although I always feel like I don't quite fit in. It doesn't matter...I do fit in. They just don't see it yet. Like many brain injury survivors, my deficits are not usually immediately visible.