Thought I’d start a diary of sorts about my, or rather, our saga with brain tumors, CSF Leak, Intracrainial hypotension, and the crazy things we do to “fix” the brain. In the last three years we have learned the medical community knows surprisingly very little about the brian, and even less when things go wrong.
Quick synopsis of “our saga”
4/2011 ~got sick, mostly GI in nature, felt seasick all the time(land and sea).
6/2011 ~found tumors surrounding pituitary,
7/2011 ~surgery to remove tumors revealed a complex and perplexing growth and debris that wrapped around my pituitary, traveled up the stalk and into the hypothalamus of my brain.
~UPDATED- reviewing my records, the docs now believe I had a pituitary apoplexy with tumor involvement. In other words, my tumors invaded my vascular system of the pituitary stalk causing a rupture. Thankfully I’m not dead :-), my body was able to stop the bleeding on its own, but left a pretty big mess behind.
7/2011-12/2012 ~ no one knows exactly what they dug out of my head. Advice from the medical community was to relax and get better. But my situation was not improved. In fact, seemed worse. I suffered from disabilitating head pain, light and sound sensitivity, and cognitive issues included memory loss, critical thinking impairment. I couldn’t think straight, I had ringing in my ears and the sound of waves crashing behind me( strange aye?). I had to quit my wonderful job as a nurse in the operating room.
12/2012 ~Many mis-diagnosis and lots of wild goose chases later, I went to Cedar Sinai and saw Dr Schvink who said I had to have surgery again. This time to fix a CSF leak caused by original surgery.
9/2013 ~ plateau in recovery
12/2013 ~ 8 months of physical therapy and though I’m stronger physically my head pain is still bad. doctors suspect…? All sorts of things. Another CSF leak, more tumors, aliens have invaded my body. My latest neurologist told me I was way out of her league and that she really couldn’t help me. A refreshing change actually, most docs throw meds at me and schedule a three month follow up.
1/2014 ~I’m now scheduled to see Baylor Pituitary Center. So I’m gathering up my labs and doctors notes for yet another shot at fixing this.
4/2014 —-after failed EBP at Cedars in California, a new Neurologist here in Houston put me on Diamox, which sounds counter intuitve for someone with a CSF leak.
But the reasoning is :
I do not have a fast leak, or it would have showed up on the MRI. A slow leak will heal itself IF you have normal Intracrainial pressure. This means that if my symptoms are caused by a leak, I must have high pressure ( leak unable to heal). Diamox should stop the leak, and once it is stopped, it will heal itself in time.
I’m doing really well on diamox, it has some crazy side effects but it has completely stopped my leak symptoms. Only on week three of diamox, so will see how things progress. Doc says this diamox could be temporary or a forever thing….who knows. It does cause memory loss which can be embarrassing when you don’t remember someone you just met last week, and forget about names, new people don’t have a chance. But it hurts when I cannot remember the name of someone I’ve known for years. Sigh. But again it is better than the alternative!!
I guess this is where I write all sorts of wise words of discovery of ones self, where I describe the beauty in the storm. But I got nothin. I have been knocked down and have yet to get up. I don’t know why, I’m very strong. I have surmised that things are a bit different when you have a broken brain as opposed to a leg or even heart. But knowing that has not made my path any clearer.
I was always so good at seeing beauty in the most unlikely and even horrible situations. Working in a hospital will show you the grittier side of life. But to find beauty, to see people and situations past their illness, past their anger and fear, it came rather naturally for me, like it was whispered to me from somewhere deep inside.
I remember a patient who was a gang member. When they rolled him into the room, I was struck by his appearance, he was such a contradiction. His face and body covered with tattoos and scars, tattoos meant to scare, meant to warn. The scars authenticated it all. His anger and mistrust just engulfed the room. And more obvious, he was scared.
I wasn’t supposed to be in that OR. I had just stopped by to check on things. But when I saw him, I saw fear, and he was clearly someone not used to feeling helpless. His nurse was a bit busy, working at the chart. So I began by helping anesthesia, getting caught up to speed about his condition. This placed me right at the patients side. Talking gently and as soothing as could be, I tried to relieve his fears. He wouldn’t look at me or answer any of my questions, I didn’t press him. He, like most patients, are overwhelmed by the operating room, and the whirlwind of activity, and who could blame him.
It took at least 25 minutes to get him ready. About a minute or two before we started the induction, to put him asleep, he opened his eyes, looked at me, and asked me my name. It was the first time he had even acknowledge our presence. Such a simple request, my name, but in the OR patients rarely, if ever, ask our names. With all the sensations, bells, beeps and alarms ringing, people darting around in masks and hair coverings, it is such a foreign hostile terrain.
As a patient, at least for me, the operating room really tore down any wall of denial I had built. The room had a way of exposing the reality of my situation. The minute I rolled into that cold brightly lit room, the reality that my Brain had a stowaway, an invader, unwanted and out to hurt me, became starkly clear.
So I had to smile at my patient through my mask, because he honored me with that question. A dozen people in that room, and he asked me my name. I said to him ” my name is Erika, and you are going to be alright, we are going to take good care of you”. He asked if I was going to be there with him, be in the room while he was sleeping, another honor. I could stay and told him so. He nodded to me and closed his eyes. A second later he reached out for my hand and grasped it tightly. He fell asleep holding my hand. That’s beauty in the darkness. A gang member, black panther tattoos, tough and strong, holding the hand of a stranger, trusting me to stay and watch over him. Beauty.
“Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there…”
When I got sick, it was out of the blue. Though there were signs here and there, fatigue, lack of appetite, etc. I just blamed it on my busy nursing life. I worked split shift and also helped out next door at the Heart and Vascular Center. When I found out about the brain tumors, I was ok. I was a bit in shock, but I was generally “OK”. What I did feel was guilt. I felt guilty for getting sick. My husband had proposed two weeks earlier, we were getting our boat ready to go cruising, to go play for a while. So much planning, and then I got sick. I felt like he got the shaft, making him fall in love with me then popping the old “I got brain tumors” surprise on him. No matter how illogical it sounds, no matter how many times I tell myself that it isn’t my fault I got sick, I still feel guilty.
Brian, my hubby, has been amazing. No words can express how much I adore him, how much I admire his strength. And he is so damn smart!
I’ll keep adding to this page…
My family has been amazing. My sister and brother-in-law took shifts at the hospital. Noel, my brother-in-law would take Brian out for dinner everynight to get him away, to decompress. Noel also brought me my favorite water(Fiji) and a nice cup of tea every morning.
And maybe soon I’ll be able to adjust my sails.
Hope this made sense ( broken brain disclaimer )
Well Baylor pituitary center found nothing definitive. One thing they did do is thoroughly go through my pituitary MRIs with a radiologist that specializes in pituitary problems to paint a clearer picture of what my original tumors were up to. They believe, and I agree cause it makes the most sense, that I had a nonmalignant tumor apoplexy. An apoplexy is when tumors rupture blood vessels. Thankfully, my rupture wasn’t life threatening. The abundance of leukocytes and odd tissue was a responce to try to clean up the blood and such. Gross aye? Plus they told me I had bone remodeling due to the tumors size, I find that very interssting( the nerdy nurse in me).
So once we confirmed my tumors are not back.
Wait, I should put that differently…MY TUMORS HAVE NOT RETURNED!!!!!
So we sent my info to my neurosurgeon at Cedar Sinia in LA. Dr Schievink, thinks I have another CSF leak (booooo!). So we will be flying to LA the first week of April to run some tests and have a procedure, possibly surgery again. My cognitive issues have gotten a bit worse. My head pain is just down right off the charts. But once the leak is repaired my cognitive issues should clear up and head pain either gone or greatly reduced.
The big issue with CSF leaks is that it causes low intracranial pressure, this in turn leaves my brain rather unprotected from getting roughed up. Think of CSF fluid as a big cushion for the brain, if the cushion is not there your brain can get beat up by the hard skull. So leakers ( we call our selves) can get cuncussions and contusions from the most innocent of movements. For me riding in a car that suddenly brakes will put me in a tail spin!
The Brain responds to low pressure in many ways. These responses can manifest in obscure symptoms, which are poorly understood, frequently mismanaged, and misdiagnosed. Research is at its infancy.
Will write more when I get back from LA
Back from LA. The doctor wanted another procedure done, a blood patch. He could not locate where I was leaking CSF again, but did say my original repair site looked good. So he patched just above it, or rather an interventional radiologist did the procedure. I had a rather bad reaction to the procedure so they kept me overnight ( ugh, I hate hospitals!) .The up side, the patched worked and my head pain and related symptoms were mostly gone :-). So my mom, Brian and I flew back to Texas for my 4week mandatory bed rest ( more ugh!!).
Patch failed, I’m leaking again. But the leak seems smaller( symptoms are not as bad). So my doc wants to repeat the patch procedure in hopes that it will reinforce the earlier repair. As you can see, this is more art than science. I’ve decided that we do not have to go back to Cedars for the next patch. I will have it done in Texas with my Cedars doctor overseeing the progress. I have an appointment this week(5/15) to see the neurosurgeon, and should have my final, yes, final procedure to fix the elusive leak.
I’ve spent the last month recovering at my sister’s house. Our dog scupper especially loved it cause his best pal is there.
Stormy and scupper are devoted to each other, and it is very sweet to watch them play all day. My sister is a dog whisperer, so scupper picked up some good habits, like not running out the door every time it is opened. Thanks Alecia!
So next step another EBP, hopefully, that will improve my condition.
The Texas Neurosurgeon ( DrPatil Baylor Neuro) wants to run some tests before doing another Blind Patch, sigh, so the saga continues. At least I’m back on the boat!!!
Seeing a new neurologist at Baylor. We are certain that now I have High Intracrainiial rPessure.
My doc has wanted to admit me to monitor my pressure. But this involves invasive procedure, so I’ve been reluctant to move forward. Now my symptoms are getting worse I’m ready for them to turn me into a human pin cushion again.
We decided not to perform any procedures, period. I found a great pain management doctor at Baylor college that has me on an extended release med. This med ( tramadol) has not worked for me in the past but I had never tried or even new about an extended release version. It works very well, giving me almost complete pain relief for a good 5-8 hours WITH activity. This also doesn’t make me sleepy or dopey :-). Some days are better then others but with the combination of Diamox which lowers my intracranial pressure and thie ER pain med, I am getting my life back :-). I think my CSF leaks are repaired and now my brain is just trying to find it’s equilibrium. I still suffer from the vertigo, visual disturbances, memory lapse and such but it is very mild compared to just 6 months ago.
I also went through extensive neuro/optholmolgy testing to make sure my visual disturbances were not causing damage. My neuro testing also showed complete healing in my cognition and memory functions. Any issues I have are medication related. So as soon as I am able to ween offthe drugs I could look at being a nurse again 😀😀😀😀😀. But right now we are focusing on healing and recovery. Our sailing adventure is just the therapy I need. Hugs to all.
Thanks to everyone for their incredible support. Especially my Family, my mother who sacrificed so much to get me through the tough times. My sister Alecia and brother-in-law Noel who was always ready to help with whatever we needed. And of course, my hubby, who pulled me from the fire more than once. I love you all, thank you.
Broken Brain Update 9/6/15
Since starting this adventure post brain surgery, we were unsure how I was going to handle the traveling. I had lived and worked on boats since I was 19. I delivered boats across oceans. I know this life. But I was unsure my brain would remember. Unsure my brain would accept the constant movement and stimulus. So far I have had a blast. My heart and spirit is content, happy. My physical body though has shown me just how much these last three years of illness has taken its toll. I’m pretty sure this is a stamina thing, I just need to build stamina. Also, muscle recovery. I’m using muscles more and demanding more of them. That’s great, builds stamina. But my muscles don’t seem to be knitting themselves back together very fast, they need a lot more time to recover then before my illness.
My brain still goes crazy and begins to rebel ( hurt like hell with my old symptoms including slight confusion) but if I’m careful, it Is not a common occurrence.
So we have revised our travel plan. Two days of light travel 40-50 miles, and one day of rest. See if that gives my body time to recover, and build stamina.
We’ve been cruising aboard our sailboat Rain Dog for 9 months now. I still have brian issues but I have spirits of rather normal days( as normal as a broken brain can get).
My days have dissolved into a routine
I wake up early might take some sunrise pictures, go back to sleep until brian is ready to get up and have a tea, read, maybe nap, then swim around the boat or dinghy over to a snorkling spot, have lunch, take another nap, swim , have dinner, read , do small boat project, or watch a movie, then bedtime. Brian does all the work, cooking, dishes, engine maintenance. I try to help. I do general cleaning of boat, constantly tidying, and am in charge of the head maintenance and cleaning. 🙂 . I sew when I can. Sewing seems to be the least taxing on me as far as boat work goes. Sewing, I’m sitting rather still, in a cool place with fans blowing on me.
The swims have really the biggest physical therapy impact, and also emotionally calms me. I do not get overheated as I’m in the water, it is low impact exercise using water as resistance. I mainly float about, dive down here and there. If we do something that stretches my tolerance of activity, the biggest help or equalizer is the water. Sometimes I’m so far gone I don’t even get my bathing suit on, just slip over the side and start floating. It almost always works. My pain subsides to a background level and my body slowly relaxes.
My cognition:::Well, it really hard to say what is my broken brain and what is the meds, my neuro doc says the meds do not impair memory, critical thinking. Not sure how much of that to believe. My memory is pretty bad compared to my pre surgery days. I always had hard time with names but I always remembered a face. Now, post surgery, I cannot recall names and most times faces. So that can get awkward, to say the least. Since we started cruising last December, we have run into people that I had known during my boat delivery days, the cruising world is quite small and I was deeply entrenched in that world for over half my life. Many times, meeting friends again, I felt I had to fake knowing them, gently probing where we might have know each other, how close we were, the friends we hung out with. Hoping that these little nuggets of info would trigger my memory. One wonderful couple I had spoken with a couple times since running into them was most gracious when I finally explain that I have a broken brain and needed just a few hints about how we knew each other. God! Old friends, good times, and I don’t remember them. Even after their description of where we used to hang out and who our general gang of friends were, I just don’t have those memories. It also extends to new friends, folks I strike up a conversation with at a dock or anchorage. Names, I try but cannot recall, but faces, shouldn’t I be able to remember a face? Is this the new norm? My brian surgery was years ago, the Cerebral Spinal Fluid leak just repaired or still repairing, we can only guess as there is no technology to measure my CSF pressure without endangering yet another leak. But when do I just wave a white flag and say “this is my memory capacity “?
Learning new skills is a hit or miss, post brain surgery. Pre-surgery I was very quick to learn. I was an operating room nurse at a major hospital. I also was loaned out to the Heart and Vascular institute when they required additional help. Daily, I was learning new procedures on a myriad of instrumentation and machines. In that world, the technique of teaching something new is to tell me what to do, show me how to do it, then I demonstrate how it’s done, and we are good to go. No time to practice, just absorb the knowledge and be sure that I can retrieve that knowledge when it’s needed, which may be weeks from that initial teaching moment. Ive worked in open hearts, robotic surgeries, and even neurology. Ive had gunshot patients, emergency situations where you must think faster then the normal fast and every step, every movement, could not be wasted. Every movement critical to being a part of a team that was saving a life, stall and you stall the team. Make a mistake and you can derail the whole rhythm, making others alter their work to pick up the slack. Post surgery, I have not ventured back into nursing. In fact, I haven’t been able to work as an RN at all. In the last year, I have taken up sewing, which I abhorred pre broken brain. And I’m very happy sitting at my sailrite making something for the boat. I free form most projects as I always make a mathematical error( it never fails) and rarely remember how I sewed something before. So each project, even multiple identical sewing projects like spray cloths can be different. At first this stressed me out and I endeavored to do the project exactly as before, but that was very defeating emotionally. So I don’t try to adhere to strict guidelines which as you probably know is a integral part of Nursing. Sigh.
Emotionally/Character:: the brain tumors/surgery/complications has had one of the biggest impact on my emotional state and even my character. It’s strange, there are times I feel like a completely different person, alien in my skin. My spirituality pre surgery was I thought rock solid, I was known at work for being Zen, always knowing that there was a power that guided and protected me. Never letting a doctor get under my skin, much to the dismay of my nurse friends. Only times I ever butted heads was over a patients care. Post surgery, actually, I had some character changes before surgery. I remember, about three months before we found the tumors, a friend saying it was the first time she has ever seen me mad ( this was at work, I had worked with her for years). So there was some subtle changes presurgery that I chocked up to working too hard. But I also felt a drift in my spirit that I couldn’t explain. Post surgery I started to cuss, wished smoking a cigarette didn’t make me ill, got frustrated with new situations, hated surprises, saw my self as the adversary. I was my own adversary..? Strange. My perception of myself and of my behavior was very different than what my family and hubby thought of me. With a broken brain, it was very hard to parcel what was a legit problem and what was my faulty perception. Plus, we had the added factor of the doctors claiming the meds or the high cranial pressure causes behavioral changes and I would regain my old self when these influences were removed. But a couple years into this saga I realized that my old self could be gone for good. If I didn’t like myself and my life, well no big deal really. But I did like myself, I loved my life, I felt blessed.
I guess I need to mention that from my first surgery right up to December of 2014 when we left for the cruise, I was in constant pain. This pain was disorienting and unrelenting. Daily hard core head pain. At first the swelling of my brain from surgery was the culprit, then later the CSF leak took its toll on the brain. Unprotected my brain suffered mild concussions weekly, if not daily. This could definitely account for my loss of zen :-). I have not much to add to this aspect of my life, even though it was a major daily companion. Robbing me of sight, I was extremely photosensitive so had to wear blackout eyeshades. Robbing me of sound, I was extremely sensitive to sounds, loud sharp, multiple sounds at once, all forced my to wear ear plugs. Restaurants were out, utensils clanking, people talking, a sudden outburst of laughter