Brain Update, Meeting the Surgical Team

Even though Old Man Winter decided to kick start winter on Leap Day, today was my scheduled meeting with Drs Tummala and Hunt at the U of M Neurology clinic. These doctors work as a team. Dr. Tummala is the neurosurgeon who will perform the angiogram simultaneously as Dr. Hunt works the cyber knife/gamma radial surgery.

The meeting went well.  The doctors agree that I am a good candidate for the gamma surgery since my AVM is small.  They said the surgery works in 80-85 percent of people and the most successful are the surgeries on small AVMs. 

Most of what they told me, I already knew. The surgery is a same day surgery. I will come in to U of M early in the morning. I will be fit into a head brace halo. Dr. Hunt will fit me. My skull will be numbed in 4 places and then the halo screwed into my skull. Dr. Hunt will make sure it fits snug and that I am as comfortable as one can be with screws in the head. 

I will be awake for the surgery though I will have an IV with Fentinol to make me relaxed. Dr. Tummala will send a catheter through a vein in my leg up to my neck. Dye will be injected and the AVM will be located and mapped. Dr. Hunt will perform the gamma surgery on the AVM, blasting it with radiation. 

Both doctors agreed that I should not lose any hair as a result of this procedure. They think it wasn't the radiation that made me lose my hair last time but the x-rays used to take pictures of the procedure. They said they read in the notes that the x-ray part took upwards of 90 minutes and in this case the x-ray part will be 5 minutes or less. So yay!  No hair loss. Wonder how long it will take me to grow it back now?

After the surgery, they will close the site where the catheter was inserted, remove the halo, make sure I'm all good and then send me home. Based on my other procedures all I will want to do for a couple of days is lay low and sleep while occasionally taking some headache meds.

Even with the surgery, the AVM will disappear very slowly. The average is 2 to 3 years.  They said they won't want to see me for 2 years though I will still be seen by my seizure specialist and my neurologist...probably in 6 month increments. They said I will most likely be on anti-seizure meds the rest of my life because even with the fistula and AVM gone, my brain has undergone damage and once a person has had a seizure, their odds of having more greatly increases. Thankfully the medicine I am on seems to work so I will do what they tell me and stay on the meds. 

Most of what they told me is stuff I knew from my own research. I was nice to meet the doctors and talk over things though. They were kind, down to earth, and very helpful in answering my questions.  The next thing I do is wait.  Someone named Pam will call me from the U and she will tell me when the surgery has been scheduled. Most are scheduled on Tuesdays or Thursdays.  I was told she should call in the next week or 2 and the surgery will most likely be scheduled for sometime in March...maybe early April. So I just wait.

In other news, barring any new seizures occurring, I can once again begin driving on Monday. I am nervous but I will be smart about where and when I drive myself.  Based on my weigh in today, I have been too sedentary and have been eating too many feelings this winter so I may just resort to riding my bike for short errands.  I am going to a workshop next week on keeping and maintaining my bike so it's ready to go when I am. Just put a basket on it and I will be good to go.

Thank you for your prayers and good thoughts.  I will keep updating this space as I know more. 

Brain Update - Part 2 Not Fine

I don't know if it's like this where you live or not, but here in the northern mid-west a standard greeting goes like this:

Person A "Hey there!  How you doing?"

Person B "Fine.  How are you?"

Person A "Fine. Nice to see you again. Take care."

Person B "Yeah, you too. Bye."

What is really going on:

Person A (Someone I know is in my sight-line and has spotted me as well. I must appear friendly and interested.)

Person B (Someone I know has spoken to me. I must appear friendly and interested.)

Person A (Whew, almost done with this interaction. On I go.)

Person B (Hope I appeared friendly and interested.)

I hate this greeting/dance. Mostly because Person A does NOT really care how you are doing. It's just part of the greeting. If Person B took Person A seriously and said, "Oh man, I'm so glad you asked!  I'm not doing so well. In fact, I think I might have Seasonal Affective Disorder or depression." Person A would then NOT know what to say and would probably look for any way out of the conversation leaving Person B alone and perplexed.

Ever since my seizure, I have hated these genial but unreal interactions. I am sure that most of the folks I know who ask me how I am doing really mean well and want to know. The only problem is I don't know what to tell them.  I am going to try to write it out here. Writing sometimes gives me clarity when nothing else works.

I am not doing well. People have said I look well and that they are glad I appear to be doing well. That's all well and good but though outward appearances say one thing, I am feeling quite another.

Yes, it's true that my seizures are seemingly controlled by the medication I am on and I've been faithfully taking all the meds since my 2nd seizure in December. But I live constantly as if there is a bomb inside my head that could explode at any second in any situation. People on anti-seizure meds also still sometimes have seizures. So I am not doing well in that no matter the time, situation, or place, I always have a niggle in the back of my mind that I could have a seizure.

Yes, it's also true that my hair has almost completely grown back. The doctors say it is rare for hair to fall out the way mine did and when I showed up for the last angiogram, they all wanted to come and see the spot that had been bald because they rarely get to see such a sight. Oooo, I'm a medical marvel!  And while I get compliments on my hair all the time, I still miss my hair.  My long, wavy/curly hair that used to be so thick and full.  I think I look fine now but I am not doing well because I feel like a crucial part of who I am is missing.

Yes, it's true that by working full-time as Bob's stay-at-home PCA, I am able to stay home to get the rest I need when I need it. This is handy. However, making the change from caregiver to the one who needs the care is not an easy change to make. Also changed is some of the care I can now give Bob.  We have to make adjustments in schedules since my sleep patterns have changed and I am now no longer able to drive Bob to and fro so we have to make sure things are scheduled according to his calendar and not so much mine. Having Bob remind me to take my meds is maddening but also necessary. I created a check-chart and have a days of the week pill keeper so I remember without his having to nag me. I am not fine because I am the one who is supposed to give care not receive it.

Yes, it's true that I now have a lot of home time and time at home with Bob. However, I think there is a fine line between togetherness and smothering and I feel like I have crossed that line lately. Since I can't drive, I am most often house-bound. Since Bob can drive but doesn't like to, he is often house-bound as well. So we have plenty of time together but not all of it is good and we have been getting into spats and getting on each other's nerves a bit more than in the past. I am not fine in that I have hurt my husband by saying I want more alone time and could he just drop me off at Target and let me shop alone versus coming in with me.  I am not fine because though I love and adore my housemates, I think I have also maybe hurt them by not reaching out to them more when they are home or by expecting them to pick up my slack, which is not fair. I am not fine because my patience seems to have all but run out with the people who live with me and it's not their fault but it is mine.

Yes, it's true that I seem to finally be used to all the medicines I am taking. When I first started taking the anti-seizure medicine, I was sleepy all the time. I felt like a zombie and wanted to sleep all day. I am SO thankful that God has designed our lives in such a way that I can be home with Bob and take a nap if I feel like it. However, I am a go-go-gadget girl and a doer and all of this resting and sleeping and fatigue makes it hard to get things done the way I like them to be done. I am not as able to multi-task as I used to be. I am also not able to accomplish as many things in a day as I used to be able to do. Since I can't drive, I can't just run out and get something or go somewhere for a while so I tend to now be mostly house-bound. I gave up my photography job at Urban Homeworks because I didn't have transportation and I didn't think I could give that job the time and effort it requires. I also haven't been to as many events in our neighborhood because I'm usually in bed by 7 or 8 now due to fatigue and headaches. So I'm not fine in that I feel like I am not pulling my weight at home or in our neighborhood or at church. I am not fine because I feel like I can't be as productive as I used to be. I am not fine because I guess I found a lot of my self worth in the things I did rather than in who I am and right now I don't like who I am so I am not fine.

Yes it's true that medical and medicinal technology is now a wonder but how many pills does one woman need?  I have anti-seizure meds, headache meds, anti-depressants, sleep medicine, vitamins, supplements, and pain meds. All are seemingly necessary. I am finally, mostly used to them now but still find myself crawling back into bed after 11am for a quick cat-nap. Still, I am not fine because though I am not having seizures or bouts of Aphasia, I am finding my memory is not so good. I forget words, names, dates, and appointments. I will be talking and all of a sudden the next word I was going to say is gone, poof, vanished. I am not fine because as a person who prides herself on her communication skills and graduated with a degree in Communications, this is not fun. 

I am also not fine because I have hurt other people I dearly love by not returning their phone calls or texts, ignoring their emails and Facebook messages, and by staying home from nearly every event written on the calendar. The saying "Hurt people, hurt people" is most definitely true in my case. I am hurting and because I am hurting I don't want to go out. I don't want to engage in fake social-ness. I don't want to have to explain all the medical crap AGAIN. Or I do. I want someone to ask so I can explain the medical crap AGAIN. I am moody. I am sad. I am afraid. I am tired. I am someone who, up until 5 1/2 months ago did not have a neurologist, neurosurgeon, seizure specialist, or 2 emergency ambulance rides under her belt. Then the people I care most about ask me how I'm doing and I lie and say I'm fine. Then I ignore their calls because I don't want to tell them or have them find out how I'm really doing. I am not fine because I am hurting the very people who love me.

There is a plan in place for me to have surgery on my brain. I am waiting for the U of M Dr to schedule a time to meet with me. Once we meet, the surgery will be scheduled. I will have a better idea of what this surgery will entail after I meet with this doctor but everything I've read on it so far says I will have a halo brace screwed into my skull and they will operate on me while I am AWAKE so they know they haven't hit some vital or eloquent part of my brain. Since the malformation is deep in the middle of the language center of my brain, they want to make sure they take care of the malformation without disrupting my ability to communicate and understand. So while I am thankful for modern medicine and technology, I am not fine because this freaks me the heck out. Lasers. In. My. Brain! Screws. In. My. Skull! Awake. For. Surgery. 

I am not fine because 6 months ago I could drive. I could jump in the car and run to the store for a gallon of milk or to the library for some books. I could get myself to and from work. I could volunteer. I could hang out with friends. I could take my husband to places he needed to go. I could vacuum, shovel, clean, and run errands all in the same day.  6 months ago I'd never heard of AVM or AV Fistulas. I never heard of gamma radial surgery. I'd never heard of Keppra.  6 months ago I'd never seen the inside of an ambulance.  I'd never been to HCMC ER. I'd never had a CT Scan or MRI. 6 months ago the only medications I took were prescribed by my primary physician. Now most are from my neurologist.  6 months ago I only had to see a Dr. once a year for my annual physical or if anything popped up (like a broken toe perhaps). Now I see a Dr. at least once a month if not more. 6 months ago I could leave my house and it wasn't a big deal if I forgot my cell phone or purse with ID or if I wore a medical alert bracelet. 6 months ago I didn't even have a medic alert bracelet or a laminated emergency care card. 6 months ago I could hold a baby or play with a small child without worrying what would happen if I had a seizure while doing so. I could walk up and down my basement steps without worrying what would happen if I had a seizure. I could forget to take my medications in the morning with no real consequences for missing a day.  I could use a step ladder or stool to change a light bulb and not worry about having a seizure.  6 months ago we were planning on going to Florida to see my family for Christmas. We didn't get to go and we both missed out on sun, sand, surf, and fun with family. I am not fine because everything changed for me (I should say us) on Sept 4th, 2011.  I wasn't ready and I don't know how to do life now with all of these changes. I am not the same person I was 6 months ago and I have to say I do not really like the person I am right now. I am hoping that will change as I pursue more of God this Lenten season.

I don't want to end this on a down note because while I am not fine...I also am fine. There are testimonies in these trials. God's hand is evident in our lives. We see Him caring for us every day. We also see others reaching out to us in love and we are (I am) so thankful for their care and concern.  It really could be SO much worse.  I know that and I am thankful it wasn't (or isn't). Baring any more seizures, I should be able to drive again on March 5th pending a Dr's OK. This is good news and I am hoping it happens. I am also scared because see above, bomb in my brain.

I also want to say that I am truly and honestly sorry if I have hurt you at all in these past 5 1/2 months. I am sorry for ignoring your calls, texts, emails, and messages. I am sorry for not getting back to you. I am sorry for avoiding large group gatherings which include Bible study, church, fellowship groups, concerts, movies, and such. I am sorry if I've been cross, short, silent, bitter, or sassy. I am sorry for not knowing what to say when you talk to me or ask me questions. I am sorry for hurting you. I am sorry that I haven't been as outgoing or as neighborly as I should or want to be. I am sorry for dropping the ball on so many things I used to pick up so easily in the past. This makes me feel worse about myself and I am praying to be better. I ask for your forgiveness and hope you can see your way to stand by me somehow as I try to get through all of this.

I don't know how to get/feel better other than to keep moving forward and taking it day by day. I know I need to learn patience with myself and with others. I know I need to learn that it's OK for me to be different now. It's OK if I have to take a nap at 11am or 2pm. It's OK that I have to go to bed at 8pm. It's OK if I can't cook, clean, pay bills, walk the dog, and shovel the walk in one day. I need to rediscover who I am and what God can do with me now...if anything. I need to find "me" again but I also have to learn to love what God has made. I need to learn to see me through God's eyes and be about His business in whatever way that comes. I thought at 44, I would have this all down by now.

So, how are you?

Brain Update - Valentine's Day Edition, Pt. 1

This is a brain update - Valentine's edition only in that my appointment with the neurologist happened to occur on Valentine's Day. Maybe February 14th would be a better day to see the cardiologist?

Did you know that Saint Valentine is the patron saint of love, young people and happy marriages? He is NOT the patron saint of the heart though. That honor goes to St. John of God. There is not one saint set aside specifically for the brain though there are several who are heralded as the saints of head injuries or headaches. Most notably, St. Denis of Paris. He was beheaded.

 

Yeah, that looks like it would hurt. A headache seems to be the least of his worries I would think. Still, there is not a day set aside for those looking for someone to fill the loneliness and emptiness of their brains as there is for those looking for or lucky to have found love. Maybe there should be.

So, onto the update. The nurses who set these appointments always tell you it's best to arrive 15 minutes early. Thus, for my 10:30 appointment, I showed up bright eyed, if not bushy-tailed at 10:15. I checked in and was told to have a seat in the waiting room. So I took a seat in the waiting room....and realized I'd forgotten to bring reading material. Sigh. 

I noticed that all around the room there were signs asking folks to not use their cell phones in the waiting room as it is a disturbance to others. I kind of chuckled at what seemed like overkill in the posting of these signs but before the last breath of laughter left my lips, the guy in the seat ahead of me got a phone call and managed to let the whole waiting room know that he was at the hospital with his dad who was there to see the surgeon after his bowel obstruction surgery. This guy was speaking into his phone as though he was in a boat and the person on the other line was waiting at the shore. Dude, the phone is an amplifier.  You don't have to shout. Or maybe he was remember his days playing telephone with tin cans and some string. Who knows. What we do know is that he is a contractor taking the day off while the work still needs to be done. So then we get the low down on all that was needing to be done today. Sigh. It is sad that this dude could apparently not read.

Anywhoodle. I waited in the waiting room for about an hour before being called back to the exam room. Once there the nurse took my blood pressure 3 times and all 3 times it was high. This is not usually an issue for me. In fact my blood pressure is usually spot on perfect. She decided to take my temp and other vitals and come back for another blood pressure reading later. 

After waiting about 45 minutes, she came back and took another blood pressure reading which turned out to be spot on perfect. That's what deep breathing for 45 minutes will do. Then it was more waiting for the neurologist. After a bit a young medical student stepped in. She performed the standard neurological exam, asked a bunch of standard questions, and then said I had to wait some more for the neurologist.

I waited a total of 2 hours for the neurologist. Glad I was there 15 minutes early. The first thing my neurologist asked was if I was taking my medications regularly. Yes, Dr. I even have a chart and a day of the week pill box to help me remember. He then told me that he had looked over all the records from my previous procedures and since the fistula is now gone, it is his recommendation that we move forward in taking care of the AVM. This means gamma radial surgery...or gamma-knife surgery. The only place this can be done is at the U of M. He said now it's a matter of HCMC's people conferring with the U of M's people. The neurosurgeon at U of M will want to see me for an evaluation and after that he will schedule the surgery.  If you don't know what gamma radial surgery entails, you can read more about it here: http://continuallycaptivated.blogspot.com/2011/11/gamma-knife-radiosurgery.html.

One funny thing about my visit with the neurologist. I was wearing a red sweater and hat in honor of Valentine's Day and the doctor commented on how nice I looked and how red suited me. I kind of laughed and admitted I wore it for Valentine's Day. He chuckled and then kind of blanched and said, "It's Valentine's Day?!"  Oh oh. I hope he was able to get something nice for Mrs. Neurologist before days end.

As I was leaving, I was given the name and phone number of the nurse who does all the HCMC/U of M scheduling and was told to call if I didn't hear from her by the end of the week. I didn't so I did. I got her voicemail and left a message.  At the end of the day another nurse called me to say they got my message but got it late and everyone had already gone home for the weekend so I should expect to hear something from the scheduler on Monday. More waiting.

In the meantime my headaches are better. I no longer get daily headaches however the ones I do get, though infrequent, now are doosies. I am also finally getting fairly used to all the meds I am on though a nap is still warranted almost daily. Also, I seem prone to injuring myself in other ways. I broke my toe in December and this past Friday I somehow managed to wrench my back in such a way that the pain takes my breath away if I move wrong. Thankfully I work for a doctor whose specialty is back injury rehab. If I'm not much better by Tuesday I will ask for his help and advice.

Barring any more seizures, I can expect to get my driving privileges back in early March. Even after the surgery there is no guarantee of living a life free of seizures so I will most likely have to stay on the anti-seizure medicines.  They tell me that the shrinkage/healing of the AVM is a long, slow process that takes 2 years minimum. So I will most likely be under the care of neurologists and seizure specialists for quite some time. It seems to me as though I've been living with all of this for years when in reality it has only been 5 months. What a lot of information to take in and live with in these short 5 months. Tomorrow I will write Part 2 to this post in what it's been like outside of my brain. Brain update Part 2 - The Emotions Behind the Pain.