Skipping Through the Holidays

I realize my last post was way back in October. There hasn't been much to report since then besides Thanksgiving, Christmas, and the New Year. 

My TSC specialist, Dr. Thiele, is waiting to hear from the neuro-radiologist about my series of MRI's he was to review. They are trying to determine if the actual SEGA tumor grew, or if there was a cyst element that sprouted and grew, a possible scenario, though rare. I have upcoming appointments with both my neurologist and my neurosurgeon, as well as a scheduled brain MRI. 

Tuberous Sclerosis is called a complex because it involves many major organ systems in which benign cysts and tumors grow. Though not cancerous, they can cause structural and functional problems by virtue of location and size. Most people diagnosed with TSC, including myself, are found to have kidney involvement in the form of multiple cyst and/or angiomyolipomas (AML's). The AML's must be closely monitored for growth and removed if they become too large. I started having abdominal MRI's every six months, and now I'm having them once a year because the size of the AML's have remained stable since first diagnosis. My urologist and I agreed to try ultrasound next year so that I can avoid a post-MRI shunt check. So that's good news.

Basically, I go through phases of acceptance and annoyance. This time of year, it seems all my appointments cluster together and I am reminded of my condition. After my first surgery, it was easy to forget that I ever had a brain tumor, but now that I have a shunt, I can't ever forget. When I start to feel sorry for myself, I have to remember that I'm lucky to have a team of professionals taking care of me with amazing technology at their service. I have to remember that it could always be worse.

Four Months/ Herscot Center for TSC

Doppleganger?

Last Friday I met with Dr. Elizabeth Thiele at the Herscot Center for TSC. I have been her patient since my first diagnosis with a mild form of tuberous sclerosis in 2010. 

My last visit with her was a year and a half ago, though I'm supposed to see her once a year. My previous appointment was scheduled for April 19, 2013, the Friday after the Boston Marathon bombing. Dr. Thiele herself called me from her home and said the city was shut down and all appointments were canceled. I never rescheduled. 

Fast forward to this past Friday, when I walk into her office and she looks at me and knows immediately that this isn't the usual appointment. Normally, I stride in alone with a smile and say everything is great, kids are good, no problems. This time, with Joe by my side, I tell her about my emergency surgery in June. She stares at me, wide-eyed as her jaw drops. I immediately feel better.

One of the monkeys on my back this summer has been guilt. Guilt over whether I had done enough to try and prevent the trauma of emergency brain surgery. Surely I could have been more diligent, pestered my doctors, questioned the MRI reports about the tumor size...something. 

Dr. Thiele's reaction reassured me that I wasn't the only one dumbfounded that my tumor had grown again. She kept looking at me and shaking her head, amazed that it grew so fast between my last MRI in January and June. It took almost 40 years for it to even become a problem. But MRI's aren't perfect (which we know), since it's a 2D machine trying to capture a 3D image, the new growth may have not been captured. My kind of tumor (SEGA) isn't supposed to even grow in adults, let alone grow so fast. Dr. Thiele got a gleam in her eye at the promise of a medical mystery to be solved. I actually got excited for her!

Not my brain, by the way

Looking at it from the outside, my case is complex and interesting. TSC is usually diagnosed early in children who suffer from seizures, multi-system benign tumors, skin lesions, mental disabilities, and much more. SEGA tumors are thought to be present at birth as small nodules in the brain, only growing until the age of 18 (although the age has recently been raised to 25). I was diagnosed at age 39 only because the SEGA had grown large enough to cause problems. If I hadn't had continuous headaches, I would never know I had TSC.

So now the plan is to wait for Dr. Thiele to consult with her neurologist colleague who specializes in TSC too. They plan to go through the whole series of MRIs from day one and map the growth to find a clue as to what happened. Based on the findings, and if the SEGA grows again, I may start a new medication to control it and prevent another surgery. Every other aspect of my condition seems stable for now, so we will continue monitoring.

TSC is rare. My kind of TSC is rare. Now, I have a strange little complication that doesn't fit the profile. That makes me even more rarer? Rrraaarrrerrrr.

Hey--I have to keep a sense of humor about it. Since TSC is a specific gene mutation (although they can't find mine of course), I guess I reserve the right to occasionally call myself a mutant, especially around Halloween. 

I choose mutant Rogue

7 Weeks and Ready for Nine Inch Nails

The title of this post says it all. While I'm not in perfect condition, I'm ready for the NIN concert next week. Fourth row!

How did I get in shape? I have walked the neighborhood often enough to work up a tiny sweat. I have practiced gentle yoga to loosen and strengthen my muscles. I have danced around the house with the NIN playlist blasting. Most importantly, I have not needed a real nap in about a week. My stamina has improved, and I will rely on the adrenaline rush to pull me through. I do plan on bringing earplugs just in case the music is too loud. You never know.

My appointments from last week went well. The neurologist decided to back me off one of my meds, which has made my head and vision much clearer. It's nice to be out of the fog. The neurosurgeon said the MRI looks great and I can ease back into normal activities. 

A few normal things I've experienced that other people who have had brain surgery may worry about:

• It took 6 weeks for me to feel comfortable sleeping on my shunt side. I'm using a softer, faux down pillow that helps.
• Sometimes, the area on my scalp around the shunt still itches because the skin is stretching and healing. No redness though.
• There are muscles in my neck, shoulder, and scalp on the shunt side that are sore almost every day. Yoga helps. So does acetaminophen, or a hot pack.
• Because the shunt feeds into my abdomen, I've had random stabbing pains that feel like a runner's stitch, but lower and not always in the same place. For a little while, I thought it was the start of a UTI, but it went away from the pelvic area and moved elsewhere. I rarely get them now, but for the first 5 weeks, it was miserable.
• I still question my memory and cognitive ability. I have lost confidence in my brain to be correct. Whenever I misplace something, or lose my sense of direction, or forget a name, I worry. This is all normal.

I've always seen myself as a straight forward, practical, rational person. This experience has certainly allowed me a peek into the world of those with mental illness, especially dementia and Alzheimer's. Not remembering things you should is frightening.Not trusting what you perceive is scary as hell. 

There will be more doctor visits, ongoing treatment and therapy decisions to come. My posts will begin to space out a bit, but I will post news when I have it. 

Snark and Paranoia in the ICU

It's been five weeks and a day since my brain surgery. I have a post-op checkup with my neurologist tomorrow and on Friday an MRI immediately followed up by a visit to my neurosurgeon. Hopefully, they will give me the all clear so I can keep my skydiving appointment (kidding Mom!). 

Progress

Every post should have a point, a theme, a main idea. Besides the health update, I will share my experience in the St. Vincent's ICU:

This was my second stay in this particular ICU, but it seemed much nicer this time. It was quieter, brighter, more organized than what I remember from my first visit. The nurses were extremely nice, attentive, and competent--a smidge more than during my last stay four years ago. If I could remember names, which I am horrible at, even under normal circumstances, I would thank them individually. However, I will just have to say Thank You ICU Nurses! 

Before surgery

Before my surgery, my neurosurgeon visited my room to inform me of the situation and what he would do to fix it. I must have been under the influence of some medications because I remember saying something snarky like "Can't you just zap it with your fancy cyber-knife thingy?" (I am often snarky with family and close friends, but never with acquaintances--especially not someone who is about to cut into my brain.) I remember the smirk on his face. 

Once I resigned myself to the surgery, I told him to shave off all my hair, unlike last time when (at my request) he tried to give me bangs. Another smirk.

I remember a little bit of pre-op, when a Burgess parent who works there recognized me and said hello. Then it's all a blank. I don't recall the post-op MRI, the first time Joe saw me, waking up, nothing. I can't tell you my first memory, because I don't remember the order of things. Here are 5 things I do remember:

#wonderfulhusband

1. Joe stayed with me every night in a very uncomfortable recliner and barely ate or slept. And he still looked gorgeous (see above)
2. At one point, I had an arterial line and three IVs...and my veins suck. Joe says 4 attempts were made to place an IV at one point. I'm glad I wasn't awake.
3. I had a major case of paranoia that seemed very real. I thought the nurses were conspiring against me. I heard conversations about me, saw them walk past my room to spy on me. I thought they were blocking the door so Joe couldn't come in. None of which occurred. I was in a panic, texting Joe, begging him to hurry up and save me. I was suspicious of my nurses and cold toward them for a long time, even after Joe told me I was hallucinating. I blame the meds, but it was so real. I mention this because it seems funny now, and a little embarrassing, but if it happens to anyone else, they won't think it's abnormal.
4. I think at one point, the room next to mine was occupied by   someone who defecated all over the place and then spread the love. I heard the nurses chastise the patient (in a nice way--like a parent to a child) as they cleaned up. Sometimes I question the reality of this event, but I do recall my nurse entering my room with different clothes on. Some nurses are superheroes.
5. Unlike the first time, I had no gurgling/swirling sensation in my head the first time I sat up. I didn't feel claustrophobic and have a mental breakdown due to the wrap on my head. There was no tube from my brain to a pressure bag on an IV rack to worry about. The food was slightly better.

"Real" food

I remember a few more things, but this post is long enough and readers like short, numbered lists. And I need a snack.

The Big Reveal

Fingers crossed for my appointments in the next few days. I will post an update after it all goes down. Until next week...

Eight Months/Final Post (probably)

In May, I had my six month post-op MRI and check up with my neurosurgeon. Everything looks good and I'm all clear for yearly brain MRIs. It will be nice to not think about it except once a year. Because of my Tuberous Sclerosis diagnosis (it rhymes!), I will also have yearly MRIs of my kidneys to monitor the lesions I have growing there. I also need yearly panoramic scans of my upper and lower mandibles (stemming from a tumor I had removed years ago that my doctors now suspect is related to TSC). I am by no means free of this medical circus, but at least the frequency will be less.

My hope in writing this blog was to provide my experience to someone who may be looking for answers. As I said before, prior to my brain surgery, I scoured the internet looking for personal experiences and was thankful for any information I could find that would help me prepare. So with that, I bid adieu.

Three Weeks

It's hard to believe I had brain surgery three weeks ago. The only problems I have right now are my general stamina, my headaches (which are "normal" headaches now), and vision fatigue. I've been walking for 20 minutes several days a week, trying to improve my stamina. I find that I no longer need to sleep during the day, but my eyes get tired, so I have to close them and listen to tv or music so I don't get bored. My headaches are of the tension kind, not the throbbing-blocked-CSF kind, probably from subconsciously keeping my head still, afraid to hurt it. I have a post-op appointment with my surgeon next week, after which I should be cleared for normal activities. I don't plan on getting back to my pre-surgery routine quite yet, though. But I will be glad to have a little more freedom to do what I like.

My dance with the medical community is far from over, however. Now that I'm suspected of having tuberous sclerosis complex, I face a slurry of tests encompassing almost all of my body systems, as well as more brain MRIs. If the genetic test is positive for the mutation, I will have to have my children tested, since each of them will have a 50% chance of having the mutation, requiring them to be monitored throughout their lives. My parents and my siblings will also have to be tested in order to determine if I am the first in the family, or if I inherited it from one of my parents. I have contacted The Herscot Center for TSC at Massachusetts General Hospital, a place that specializes in testing and treating people with tuberous sclerosis.

Preop and Post-op

The week before my surgery, I was scheduled for pre-op bloodwork and a physical. The nurses ushered me in rather quickly, weighed me and took my vitals. (I was happy to discover that I had met my months long goal of losing 15 lbs, something of a bright side.) Then I was hooked up to an EKG for a few minutes, all checked out normal. They drew my blood, tested me for MRSA by swabbing the inside of my nose and cheeks (something surprising, but for which I was grateful they were taking such precautions), and told me if I tested positive for MRSA, my PCP would prescribe an antibiotic before surgery. Lastly, the RN came in and began to describe the entire procedure, leaving nothing to the imagination. I wanted all the details I could get. The surgery had yet to be given a time of day, but the hospital would call the night before to tell me when to report in. She told me the surgeon had given the procedure a 4-6hr time frame, but that he was meticulous and took all the time he needed. I would have an intraventricular drain, and a turban-like head dressing, and I would spend at least one night in the ICU before moving on to the Step-Down rooms. She detailed where I was to report before surgery, and all of the interviews and repetitive questions I would be asked, what to expect right before I went into the operating room. Then she introduced me to an anesthesiologist who went over my medical history, commenting how healthy I was, besides the brain tumor. After leaving the hospital, I felt very well informed, grateful to the thorough explainations of the nurses. Much of what they said turned out to be quite accurate.

The next day, I had a brief and less comprehensive visit with the surgeon. He went over some of the same details the nurses had the day before. He then showed me where the scalp incision would be--just behind the hairline from ear to ear--which surprised me. I didn't think it would be that big! This led into a discussion about haircuts, which seemed so absurd, given the gravity of the situation. Then I asked stitches or staples, as if it mattered. My fate was sealed for sometime on Tuesday, November 2.

On Friday, October 29, I received a confirmation phone call about an MRI that I was scheduled for before the surgery. No one had told me about this, so I was a bit confused. When I called the hospital, they explained that the MRI was scheduled for 8am on Tuesday and it's purpose was for brain mapping. This was news to me. But at least I knew I had to be at the hospital on surgery day sometime before 8am.

The surgery was scheduled for 10:20am. We arrived at the admissions desk at 6am sharp, with plenty of time to wait. They brought me into a waiting room, where we spent the next couple of hours waiting nervously between periods of inane activity. I changed into a hospital gown, placed my belongings in a clear plastic bag, and waited. A hospital representative wheeled in a mobile computer station and asked a bunch of questions, then left. We waited. A nurse came in and started an IV line in my hand, then asked me some of the same questions. Finally, the surgeon came in with hair clippers and a jar of sticky-dot markers to place on my head before the brain mapping MRI. He explained that once in the operating room, he could use the brain mapping and markers as sort of a "brain gps". Sounded pretty cool. He shaved my head himself, something I wasn't expecting, and then placed the markers along my hairline and over the incision area (picture below). Then they wheeled me down to the MRI where I had a quick (comparatively speaking) scan that took about 6-7 minutes. Back to the waiting room for a few minutes, where my family gathered to see me and help the time pass quicker.

Before I knew it, the time had arrived and they moved me to the pre-op area. People started bustling around me, introducing themselves as members of the team that would be working around my head. The surgeon came and took the brain mapping MRI disk for a preview and came back with the unfortunate news that it would have to be repeated. The scan had not included all of the markers, therefore it was incomplete and useless. Down to the MRI again. Then back to the pre-op area. The anesthesiologist came by and taped the back of my left hand to a half moon shaped blue wedge, intended to angle my wrist for an easy approach to my radial artery. I had been told all of this would be done while I was under anesthesia, and I was glad when the nurse said I would be given something to help me relax. I have no idea what time it was. I vaguely remember being wheeled into the OR and being amazed at how white everything looked. Someone asked me what I could see. I think I said "white ceiling".

I woke up in post-op, apparently around 10:30pm. The surgery started late and lasted about 6 hours.( I'm lucky that I was the one sleeping and not worrying.) I was surrounded by family who all seemed to look like they were in an old, sepia-toned photograph. The light was so yellow compared to the OR. I tried to make eye contact with everyone, so they would know I was ok. Then I was wheeled into the ICU.

The first night in the ICU was almost blissful. So medicated, no worries, so tired. It was all over. Sure, my head was wrapped in a turban and I had drains coming out of my brain, but my nurse was excellent, like clockwork with those meds. I didn't even have to ask. I slept.

On Wednesday morning, when my first visitors arrived, I was still pretty upbeat, I think. Expecting to be moved to a different room, where I could have more peace and quiet.(The ICU is a very noisy place, especially at night.) Everything I had read about craniotomies mentioned that the dressings were removed after 24 hrs. I looked forward to that milestone, as well as getting the drain out of my head. It made me cringe to know that there was a tube connecting the innermost part of my brain to the outside world. I panicked when they had to bring me down to the MRI for a post-op scan. Images of a forgotten IV stand being tugged behind the gurney, or getting stuck in the elevator doors raced through my brain. I could imagine the wormy feeling of the tubes sliding out from my head. I began to cry--uncontrollably. I hadn't expected this kind of panic. But it got the best of me. When the first 24 hours passed, and my turban remained in place, it added another element of restriction and confinement. I hadn't been able to sleep at all the second night in the ICU, with all the alarms and noises. I was seriously sleep deprived, not good for someone who's supposed to be healing. I began to have more crying fits and panic attacks about my head being wrapped. I complained to the nurses that I was going stir crazy and I couldn't sleep. I was exhausted, physically and mentally. The thought of spending another night in the ICU was torture, but the surgeon insisted that I remain bandaged until the pressures in my brain were stabilized. Now I understand the reasoning, but at the time I felt like I was being tortured with sleep deprivation. On top of everything, I couldn't pee. I just wanted to go home.

On the Friday after my surgery, my surgeon's hospital colleague finally came into the room and began to unwrap my head. I have never been so happy in my life. He told me I'd go home that very day. I was still squeamish about getting the drain pulled out, but it had been clamped overnight and there had been no troubles with increased pressure. He showed a medical student what to do, and she proceeded to pull out the drain. Thankfully, I felt nothing. All my worries turned to mush. It was a little gross that some of the warm CSF dribbled onto my head and down my neck. Ick. But that was the worst of it. A few hours later, I was discharged directly from the ICU, something that never happens, according to the nurses.

Of all the reading I did beforehand, trying to prepare myself for the craniotomy, I never once came across any account of the hopeless, suffocating feeling of having my head wrapped for days. Maybe I'm the only one that will ever be bothered by it. But maybe someone might read this and be prepared for the possibility that the wrappings may not come off in 24 hours.