My surgery was on Tuesday, September 19th, and I think I went home on Saturday. My memory from this time period is so minimal. In fact, my memory of a good chunk of October is really minimal.
While I was in the hospital I wore a cap thing to protect my incision from becoming infected. Katie, the physician's assistant, came to check on me every morning. Residents came frequently. I had a drainage tube attached to my head, and I'm pretty sure the reason I had to stay until Saturday instead of going home on Friday was because my head was still draining a lot. My husband and I watched the non-animated version of Cinderella and another movie called Five Flights Up with Diane Keaton and Morgan Freeman. Don't ask me what the movie is about. I can't remember.
In the midst of all this inability to remember, I was able to put together that one of the residents went to the same medical school as one of my high school friends and that my high school friend taught a seminar this resident took. All I can say is that the brain is remarkable. Apparently my long-term memory was not affected by the surgery.
I was thrilled that walking was pretty manageable compared to trying to walk again after a c-section. I had had two c-sections before my brain surgery, so surgery to me meant struggling to poop and having a hard time walking. Thankfully these were not my problems after brain surgery.
The nurses gave me a ton of meds after my surgery, and I'm devoting an entire post to managing your medicine after surgery because it is really complicated. One of the amazing, glorious medicines that you get to take after brain surgery is dexamethasone. It's a steroid that reduces swelling in your head. Some people say it makes them want to eat a ton, but I think it left a really bad taste in my system and I hardly wanted to eat at all. Between the fact that the doctor cut through muscles that move when you chew (so I couldn't open my mouth wide for months) and the fact that everything tasted badly, I hardly ate for several weeks. They also had me on several kinds of laxatives, Pepcid, oxycodone (for pain), and who knows what else.
One day my husband brought our sons to the hospital to see me. I only remember that they came and we took a picture of me in my hospital bed with them.
And that's about it. The day I got home from the hospital, my cousin and his wife were in town so they came over for tacos. My cousin went to get me some See's Candy. And then I was so tired I went to bed before they left. The next several weeks I would sleep a lot, but I think that helps you get better.
Sunday, March 18, 2018
Surgery Day
Surgery day is a little foggy for me, partially because they gave me drugs to help me forget the surgery. My doctor had told me a few times that I would be the first surgery of the day and that I needed to arrive at 6:00 a.m. He said the hospital would call me to confirm my surgery time and arrival time, but that he would tell them I needed to be first. I don't remember if the hospital called to tell me when to come or not, but I wanted so badly to be first (you really don't want a tired doctor operating on your brain, plus you can't eat or drink after midnight the night before) that we decided to show up at 6:00 a.m.
The night before surgery I was concerned about what life would be like with my boys after my surgery. I rocked them and sang to them worried I wouldn't be able to do that afterwards. Imminent brain surgery was a powerful reminder of what I valued most in life. The morning of my surgery our dear neighbor and friend came over to stay with the boys until they woke up. I cannot remember all the details of who cared for my boys during my week at the hospital, but my mom was in town and neighbors and friends helped too when my husband was at the hospital with me.
We arrived at the hospital and checked in, but they said we weren't supposed to be there. If I remember correctly there was a ton of uncertainty about when my surgery would start, and eventually my surgeon found us in the MRI waiting room and assured me that I would be having surgery that day, but I remember feeling worried that I would get pushed off. One of the hardest things about having surgery when you are the mom is that there is so much planning that goes into ensuring things will run smoothly when you are incapable of being on your feet. I had worked so hard to make plans to cover all that I typically do, but I was incredibly scared that my surgery was not a priority for my doctors and that I would be pushed off to a more convenient time if they didn't decide to treat me.
I believe around 7:00 a.m. I was able to go get another MRI that they would use during surgery. We hung out in the MRI waiting room because it was less crowded and chaotic than the general surgery waiting room. The woman at the MRI check-in desk was very nice and compassionate when we explained our frustration that it seemed no one knew I needed to be checked in for surgery that day. My surgeon did find us and apologized for the confusion and delay, and then we waited. And waited. And my husband went to eat while I waited.
Around 10 or 11 a.m. I got called back to the surgery prep area. I changed to a hospital gown and socks. They finally figured out my IV and I survived even though I hadn't been able to drink water for nearly 12 hours. Some residents visited us, and I didn't trust them. The neurologist who would be monitoring my speech visited us. (A month or two after surgery I saw him in the halls and recognized him, but it took me a minute to place him. Then I excitedly stopped him and asked, "were you the neurologist on my surgery!?!?" He acted like he remembered, though I'm not sure he did. Personally, I was thrilled that something was coming back to me and my brain was still working.)
And then around 2 p.m. they sent my husband to the waiting room and I was whisked down the hall. I have a flash of memory that I was in the operating room and the doctor was asking me questions. I was answering them until I couldn't answer anymore--at some point I was unable to speak. I don't remember anything after that until I woke up in the ICU. It turns out I had a seizure during the surgery and couldn't talk, so they started me on Vimpat, an anti-convulsant that thankfully does not cause the same effects as Keppra on my body. Surgery was complete at about 7:00 p.m.
I think I have a vague memory of my mom, my husband, and my surgeon being there at some point while I was in the ICU, maybe around 9:00 p.m. And then I remember waking up at 1:00 a.m. and wanting to take a walk with the nurses. And then I woke up at 5:00 a.m. and wanted to take another walk with the nurses. If they were checking my vital signs every hour, I don't remember it. At about 10:00 a.m. I think they took me to get another MRI. After that MRI they took me to the neuro ward instead of the ICU. That surprised me because I thought I would stay in the ICU for 24 hours. I was happy to be out of the ICU even though I hardly remember it. Slowly, in the neuro ward I started to remember more things. After four days I was able to come home.
The night before surgery I was concerned about what life would be like with my boys after my surgery. I rocked them and sang to them worried I wouldn't be able to do that afterwards. Imminent brain surgery was a powerful reminder of what I valued most in life. The morning of my surgery our dear neighbor and friend came over to stay with the boys until they woke up. I cannot remember all the details of who cared for my boys during my week at the hospital, but my mom was in town and neighbors and friends helped too when my husband was at the hospital with me.
We arrived at the hospital and checked in, but they said we weren't supposed to be there. If I remember correctly there was a ton of uncertainty about when my surgery would start, and eventually my surgeon found us in the MRI waiting room and assured me that I would be having surgery that day, but I remember feeling worried that I would get pushed off. One of the hardest things about having surgery when you are the mom is that there is so much planning that goes into ensuring things will run smoothly when you are incapable of being on your feet. I had worked so hard to make plans to cover all that I typically do, but I was incredibly scared that my surgery was not a priority for my doctors and that I would be pushed off to a more convenient time if they didn't decide to treat me.
I believe around 7:00 a.m. I was able to go get another MRI that they would use during surgery. We hung out in the MRI waiting room because it was less crowded and chaotic than the general surgery waiting room. The woman at the MRI check-in desk was very nice and compassionate when we explained our frustration that it seemed no one knew I needed to be checked in for surgery that day. My surgeon did find us and apologized for the confusion and delay, and then we waited. And waited. And my husband went to eat while I waited.
Around 10 or 11 a.m. I got called back to the surgery prep area. I changed to a hospital gown and socks. They finally figured out my IV and I survived even though I hadn't been able to drink water for nearly 12 hours. Some residents visited us, and I didn't trust them. The neurologist who would be monitoring my speech visited us. (A month or two after surgery I saw him in the halls and recognized him, but it took me a minute to place him. Then I excitedly stopped him and asked, "were you the neurologist on my surgery!?!?" He acted like he remembered, though I'm not sure he did. Personally, I was thrilled that something was coming back to me and my brain was still working.)
And then around 2 p.m. they sent my husband to the waiting room and I was whisked down the hall. I have a flash of memory that I was in the operating room and the doctor was asking me questions. I was answering them until I couldn't answer anymore--at some point I was unable to speak. I don't remember anything after that until I woke up in the ICU. It turns out I had a seizure during the surgery and couldn't talk, so they started me on Vimpat, an anti-convulsant that thankfully does not cause the same effects as Keppra on my body. Surgery was complete at about 7:00 p.m.
I think I have a vague memory of my mom, my husband, and my surgeon being there at some point while I was in the ICU, maybe around 9:00 p.m. And then I remember waking up at 1:00 a.m. and wanting to take a walk with the nurses. And then I woke up at 5:00 a.m. and wanted to take another walk with the nurses. If they were checking my vital signs every hour, I don't remember it. At about 10:00 a.m. I think they took me to get another MRI. After that MRI they took me to the neuro ward instead of the ICU. That surprised me because I thought I would stay in the ICU for 24 hours. I was happy to be out of the ICU even though I hardly remember it. Slowly, in the neuro ward I started to remember more things. After four days I was able to come home.
Thursday, March 8, 2018
Friends Who Took Care of Me
I could write so many posts about the friends who took care of me during this process. If you have a brain tumor, you probably understand how awkward it is to start telling people you have a brain tumor. It completely kills the conversation. It makes everything about you. Not very many people can say, "Oh I had a brain tumor too!" Though you will start to find that many people can tell you about their aunt, uncle, cousin, friend, or someone they know on Facebook who also had a brain tumor. Even the EMT for my brother's football team had a brain tumor. I never thought about brain tumors until I had one, and then I felt like everyone knew someone with a brain tumor. Whether people have had personal or secondhand experience with brain tumors, people are generally empathetic. And some people went out of their way to be helpful and kind, especially on days when I absolutely felt alone and scared. Here are some examples, though this is far from being a complete list:
- She came to walk with me when I returned to Oregon, and when I couldn't walk, she brought me back to my house and talked with me until I felt better. After my surgery she came once a week for several weeks to help with my boys, my laundry, and other things around the house. She was there to listen to me and also to let me rest.
- When I was in the hospital in Utah, I texted a friend who had had brain surgery a few years prior. She was comforting and invited us over for dinner the day we got home from our trip. She made us a freezer meal, texted me and stopped by to make sure I was okay, brought me flowers for my porch, and asked for any tips I had when her sister-in-law was having brain surgery a few months after mine.
- When she heard about my brain tumor she immediately offered to bring dinner, called me at a time when I felt so desperately alone, walked to my house to say hi and bring a treat, took me for tortoise-slow walks during my recovery period, picked me up to go get a caramel apple spice and chat, shared stories about when her daughter had surgery right after birth, watched my boys, and did so many other things that I can't even remember.
- My friend who lost her newborn daughter a year earlier brought me a treat and beautiful flowers and texted throughout the process to see how I was doing.
- The women from my church organized a meal train to bring us 18 meals over a period of six weeks. People signed up for all 18 meals in less than 12 hours. Some women brought activities for my kids or special treats. We didn't even know all of these people before my surgery, and we were blessed with so many new friendships throughout the process.
- A friend and neighbor took me to my son's school several times before I could drive so I could pick him up. She became one of his favorite people, and now we swap treats whenever we have extras. She makes some of the best cinnamon rolls and is at the top of M's list if he needs a ride home from school.
- Another friend and neighbor came to my house to stay with my boys when I went in for surgery and came over several times at a moment's notice to stay with one or both boys if I had to go to the doctor.
- Another friend, neighbor, and mom of two little ones offered to watch my boys for several hours each day for weeks after I came home from the hospital because our nanny situation never worked out.
- My best friend from college has texted and called for months and sent us a gift card so we could pick up a few extra meals without a lot of preparation.
- A friend from high school sent a hilarious card that made me smile.
- People all across the world (literally) prayed for me. I felt loved and strengthened by so many prayers.
- A friend called me before my surgery and said, "I know people are going to help with meals, but I want to do something more for you. I have these times open in my schedule. Pick a time for me to come over each week and help you with whatever you need." This friend has health problems of her own, but went out of her way to help me when I couldn't even bend over.
I could go on, and at some point I probably will go on about all the ways people served me during this time. Friends have made this experience not only bearable, but valuable. It can be hard to be on the receiving end of service, but I have felt so loved and I feel closer to so many people because they have helped me so much.
Pre-surgery Appointment (Round 2)
Because I ended up with a new neurosurgeon, we were invited back for a second pre-surgery appointment to be able to ask questions and get to know Dr. R. This was really nice for us. Dr. D, the one who couldn't do an awake craniotomy, was not the most charismatic guy we've met. Dr. R was really nice, and we appreciated being able to come back and ask him questions.
I can't remember a whole lot from our second visit. We went over some of my main concerns again:
- He wasn't going to shave very much of my head--just a thin line for the incision.
- They knew which drug to put me on if I did have a seizure.
- I should come in at 6am for my surgery, but the hospital would call me to confirm. (more on this in a different post)
- He would do his best to preserve my speech.
- The neurosurgery team would be keeping an eye on me for a year after my surgery.
That's about it. Most importantly I remember that the visit was as comforting as a visit with the person who is about to cut into your head can be.
Pre-Surgery Appointments (Round 1)
It is taking me a little while to get these posts up because I'm realizing that revisiting this experience is pretty difficult for me. Emotionally, I am doing pretty well now, but between July 4th of last year and sometime earlier this year, life was tough. We had so many unanswered questions and I was constantly sick in one way or another. It's very freeing to be out of that stage, at least for the foreseeable future, but going back and reliving all of those difficult moments for the purpose of blogging is challenging. Still, I think it's important to share these posts, so I'm back to put a few more up today.
After my first round of pre-surgery appointments (I had two rounds of appointments right before surgery because my neurosurgeon changed), my husband and I started an e-mail group to give people updates of what was going on with my surgery and recovery. This e-mail group was a really good idea. We weren't ready to go totally public with what was happening, but sending an e-mail was much better than having to explain all the details to our individual friends. Most of this post is from the e-mail I wrote after my pre-surgery appointments.
I had had surgery twice before my brain surgery, but both of those surgeries were c-sections. There isn't much prep for a planned c-section. Your doctor decides on a date, you show up, you get your spinal, and they cut you open, take out the baby, and sew you back up. But for brain surgery, I had a few special pre-op appointments. I went to my neurosurgeon (summary of that visit is below) and then had an appointment with preoperative medicine. Prior to scheduling this appointment, I had no idea preoperative medicine even existed as a hospital department. It was a pretty easy appointment. There was some blood work, questions about my health and allergies, and a nasal swab so they could make sure I didn't have MRSA. So, if you have to go in for a preoperative appointment, don't worry, it's no big deal. Unless you have MRSA, and then I would guess it is probably a bigger deal.
Here's the recap of my slightly more exciting pre-op appointment with my neurosurgeon(s).
On Friday, September 1st, I had an appointment with my neurosurgeon and an appointment with pre-operative medicine at OHSU. When we went to my appointment with Dr. D, the neurosurgeon, he told us that my functional MRI (completed August 24th) showed my tumor is bordering two of my speech production centers. Because of how close the tumor is to these sensitive areas and because things shift a bit after they open the skull, they don't want to rely solely on the MRI mapping for guidance during surgery. Instead they want to do an awake craniotomy, and Dr. D does not do that type of surgery. He called his colleague, Dr. R, to come talk to us about doing an awake craniotomy. Dr. R will be my surgeon now, and he said we can do surgery on September 19th. We still don't know all of the details, but this is what we were told on Friday:
- I will not have general anesthesia at any point during the surgery. Instead I will have a nerve block and local anesthesia where they cut my scalp and skull open and where the pressure points are holding my head in place so I don't move during surgery. If I cannot remain calm during surgery, or if I throw up or have a panic attack, they will have to close me back up and try again with me under anesthesia. So please pray that I will be completely calm before and during the surgery.
- They won't shave my head, or at least not very much. Instead I will get some funky braids and grease to keep my hair out of the way. (I have to admit I'm a bit relieved about this one.) But I will have a pretty big question mark shaped scar. I am also relieved that the surgeon said he would be happy to use metal staples instead of dissolvable ones. Usually they use dissolvable ones so the patient doesn't have to experience the pain of having metal staples removed, but metal staples form a better scar and I had long-term problems with dissolvable staples after my son P was born. I'm sure having the staples removed won't be fun, but it would be totally worth it to avoid over a year of staple problems like I had after P's birth.
- I will be talking to a neuropsychologist during the surgery, and the neurosurgeon will have a mirror to see my face throughout surgery so both can monitor any changes in my speech and expression throughout the surgery. This also means I will be able to see the neurosurgeon. I'm not clear on whether they will have something blocking my view of my brain though. I hope so, but the neurosurgeon said it would be an "undraped" surgery. I'm not sure I will be able to handle seeing what is going on.
- Surgery will take about 4 hours. They will use a 40x microscope to make sure they remove as much of the tumor as possible without removing my other brain matter. Because I teach for work and speaking is really important to me (like REALLY important) the surgeon will prioritize preserving speech even if it means leaving behind a little bit of the tumor. Based on the MRI the neurosurgeons think that my tumor is likely benign. They think it is a low grade glioma, so even though it is hopefully benign right now, because it is a glioma, there is a high risk of it turning malignant at any point and once it does it becomes much harder (nearly impossible) to fight. They think it is benign because the boundaries are well-defined and they don't see any necrosis (cell death). Also there was no growth between my July 4th MRI and my August 24th MRI. Removing a significant amount of the tumor will decrease the risk of future malignancy by reducing the number of tumor cells that could become malignant. Also, removing the tumor allows for a complete pathology report so we know what the tumor is and what genetic markers it has. If they only do a biopsy without removing the whole tumor it's possible that part of the tumor has different characteristics than the part they removed.
- The plan is to be in the ICU for one night after surgery. Apparently they check my neurological response every hour, so even if surgery goes well, this will be a pretty awful night. It should get better once I'm moved to the neuro ward.
- The risks of surgery are not insignificant. While unlikely, there is a chance I will not be able to speak after surgery. If I remember correctly, sometimes the loss of speech happens a few days after surgery. Should there be any speech deficit after surgery, the doctors are hopeful that I will be able to regain my speech with therapy.
- I will likely go home from the hospital on Friday, September 22nd. I will have a follow up appointment a couple weeks after surgery and then every three months for the first year. I'm pretty sure I will have routine MRIs for the rest of my life to check on tumor growth, but I'm not sure about the frequency.
I should be hearing from Dr. R's scheduler on Tuesday or Wednesday to confirm my surgery date and give me a time and also to schedule another appointment with Dr. R on September 14th.
Saturday, March 3, 2018
What to Expect for an MRI of Your Brain
I've now had several brain MRIs in three or four different facilities, so I thought I would share what the experience is like. A lot of people are afraid of MRIs, and that's fair, but MRIs are also not the end of the world. I guess in a way I was lucky that I didn't have time to think about my first MRI. They just took me from my bed in the ER, down to radiology, and started the procedure. Some of my friends get claustrophobic during MRIs and need to be sedated, so they do their MRIs at night and go home to sleep it off. I'm at a point where I have a pretty good relationship with the MRI tech that I see every couple months, and we do pretty well every time I go in. I also need to say that you can have MRIs of other parts of your body, and I don't know anything about that. It could be better or worse than an MRI of the brain.
With any MRI, you will need to remove all metal from your clothing. No earrings, rings, underwire bras, jeans, etc. If you are in the hospital already, this is easy because they will put you in a hospital gown. If you are coming from home, it's a great day to wear yoga pants and a sports bra (or the male equivalent). During my last MRI, I forgot to take off my wedding ring. Several minutes into my MRI, I felt some tingling and a slight burn right around where my ring was on my finger. I called the tech in and told her, so we took it off. Apparently there is no problem if the ring is in the MRI room, but sometimes leaving a ring or other piece of metal on during the procedure can cause a burn (similar to a sunburn) where the metal is touching your body. This was uncomfortable, so be sure to remove all metal before your MRI.
You also have to answer a list of standard MRI questions before you start the procedure. These questions include information about whether or not you've ever worked with metal or have any metal inside your body. After my surgery I had no idea that I had a titanium plate in my head, so I went on my way saying there was no metal in my body. Later I found out I actually did have metal in my head, and now I put that on my MRI sheet. Obviously, if you have brain tumor surgery the doctors expect you to be getting MRIs for a long time, so they use a metal that is okay for MRIs.
When they call you back for the MRI, you lay on your back on a thin board (maybe 18-24 inches wide. The tech will put a cushion under your legs so they don't fall asleep or make your back hurt too much. Ask for a warm blanket (or two) so you don't get cold during the MRI. Some places just have you put your head in a certain spot and hope you don't move it. At OHSU they put a plastic piece over my head that can be a little bit overwhelming, though I am used to it now. Some hospitals and facilities will offer to let you listen to music or look at a picture of a tropical island or mountain range. MRI machines are incredibly loud, so if you do listen to music your ears are competing for what they hear. I loved having music during my first MRI, but since surgery music and the sounds of the MRI machine combined have been too much for my brain to handle.
The other thing a tech will do at some point during the MRI is thread a needle into your veins. Brain MRIs require a contrast injection so doctors can see if anything lights up in your brain. (Stuff lighting up in your brain is not a good thing--tumors and lesions light up.) The contrast can cause an allergic reaction. The first couple times I had contrast it made me sneeze, which of course means your head moves. Threading a needle can also be a painful experience. If you know you are having an MRI, drink lots of water in the 24 hours before so your veins are easier to see.
During the MRI there will be several short sequences, that I think can last 2-8 minutes. You'll hear banging, whizzing, and several other loud sounds even though you'll be wearing ear plugs and headphones. If you are lucky either the recording or the tech will tell you how many minutes each segment is. If no one is telling you, press your handy little button and ask the tech to tell you. Most of my MRIs have been about 45 minutes of taking images, about half before contrast and about half after. The fMRI was about double that.
When the MRI is done, the tech will come let you out. Don't sit up too quickly--you don't want to fall off the table. Personally, I'm fine after an MRI. I don't plan to do anything crazy on those days (or ever, let's be honest), but once my arm stops bleeding at the contrast injection site, there's no evidence that I've had an MRI. It's not the most fun thing, but it's not horrible either.
With any MRI, you will need to remove all metal from your clothing. No earrings, rings, underwire bras, jeans, etc. If you are in the hospital already, this is easy because they will put you in a hospital gown. If you are coming from home, it's a great day to wear yoga pants and a sports bra (or the male equivalent). During my last MRI, I forgot to take off my wedding ring. Several minutes into my MRI, I felt some tingling and a slight burn right around where my ring was on my finger. I called the tech in and told her, so we took it off. Apparently there is no problem if the ring is in the MRI room, but sometimes leaving a ring or other piece of metal on during the procedure can cause a burn (similar to a sunburn) where the metal is touching your body. This was uncomfortable, so be sure to remove all metal before your MRI.
You also have to answer a list of standard MRI questions before you start the procedure. These questions include information about whether or not you've ever worked with metal or have any metal inside your body. After my surgery I had no idea that I had a titanium plate in my head, so I went on my way saying there was no metal in my body. Later I found out I actually did have metal in my head, and now I put that on my MRI sheet. Obviously, if you have brain tumor surgery the doctors expect you to be getting MRIs for a long time, so they use a metal that is okay for MRIs.
When they call you back for the MRI, you lay on your back on a thin board (maybe 18-24 inches wide. The tech will put a cushion under your legs so they don't fall asleep or make your back hurt too much. Ask for a warm blanket (or two) so you don't get cold during the MRI. Some places just have you put your head in a certain spot and hope you don't move it. At OHSU they put a plastic piece over my head that can be a little bit overwhelming, though I am used to it now. Some hospitals and facilities will offer to let you listen to music or look at a picture of a tropical island or mountain range. MRI machines are incredibly loud, so if you do listen to music your ears are competing for what they hear. I loved having music during my first MRI, but since surgery music and the sounds of the MRI machine combined have been too much for my brain to handle.
The other thing a tech will do at some point during the MRI is thread a needle into your veins. Brain MRIs require a contrast injection so doctors can see if anything lights up in your brain. (Stuff lighting up in your brain is not a good thing--tumors and lesions light up.) The contrast can cause an allergic reaction. The first couple times I had contrast it made me sneeze, which of course means your head moves. Threading a needle can also be a painful experience. If you know you are having an MRI, drink lots of water in the 24 hours before so your veins are easier to see.
During the MRI there will be several short sequences, that I think can last 2-8 minutes. You'll hear banging, whizzing, and several other loud sounds even though you'll be wearing ear plugs and headphones. If you are lucky either the recording or the tech will tell you how many minutes each segment is. If no one is telling you, press your handy little button and ask the tech to tell you. Most of my MRIs have been about 45 minutes of taking images, about half before contrast and about half after. The fMRI was about double that.
When the MRI is done, the tech will come let you out. Don't sit up too quickly--you don't want to fall off the table. Personally, I'm fine after an MRI. I don't plan to do anything crazy on those days (or ever, let's be honest), but once my arm stops bleeding at the contrast injection site, there's no evidence that I've had an MRI. It's not the most fun thing, but it's not horrible either.
Functional MRI
Near the end of August I had my functional MRI ("fMRI"). I knew the fMRI would be longer than a regular MRI (closer to two hours instead of one) and that I would be required to perform certain tasks during the procedure. I had read a little bit about those tasks and tried to practice (think of as many words as possible that start with "B" and things like that). The goal of the fMRI was to map my speech and motor skills areas of the brain, and I really wanted to get it right because talking is very important to me.
When you have an MRI, the tech tends to tell you "hold very still" and "hold as still as possible" about every 30 seconds. These constant reminders can be nerve wracking, especially when you need to be perfectly still for two hours. When I had my first MRI in Utah, I got to choose a Pandora station to listen to, and that helped pass the time. At OHSU, there was no Pandora station. There was no comfort of any kind. Instead, the tech put towels around my head, making it harder to breathe. So, in the course of trying to hold perfectly still, I started to get claustrophobic. Eventually I had to tell the tech that I needed to come out of the tube. She gave me a hard time and wouldn't let me move, but at least she removed the towels. I also told her that I am a perfectionist and every time she told me to hold still, I felt like I was messing up. I told her that, instead, she needed to tell me I was doing a great job and also tell me how many minutes each sequence would be so I wouldn't feel stuck indefinitely. Those two changes helped a lot. (And guess what? The OHSU cancer center where I now get my MRIs actually has a recording that tells you how many minutes for each scan. And they let you listen to Pandora if you want it.)
When we finally got to the "functional" part of the MRI, I was relieved. Now I had something to do to distract myself while the MRI machine made all of its crazy noises. I could tap my fingers, fill in the blank for the sentences on the screen, and mentally list words beginning with any letter of the alphabet. Finally the MRI was done, and I could go home and wait for my pre-surgery appointment about a week later.
When you have an MRI, the tech tends to tell you "hold very still" and "hold as still as possible" about every 30 seconds. These constant reminders can be nerve wracking, especially when you need to be perfectly still for two hours. When I had my first MRI in Utah, I got to choose a Pandora station to listen to, and that helped pass the time. At OHSU, there was no Pandora station. There was no comfort of any kind. Instead, the tech put towels around my head, making it harder to breathe. So, in the course of trying to hold perfectly still, I started to get claustrophobic. Eventually I had to tell the tech that I needed to come out of the tube. She gave me a hard time and wouldn't let me move, but at least she removed the towels. I also told her that I am a perfectionist and every time she told me to hold still, I felt like I was messing up. I told her that, instead, she needed to tell me I was doing a great job and also tell me how many minutes each sequence would be so I wouldn't feel stuck indefinitely. Those two changes helped a lot. (And guess what? The OHSU cancer center where I now get my MRIs actually has a recording that tells you how many minutes for each scan. And they let you listen to Pandora if you want it.)
When we finally got to the "functional" part of the MRI, I was relieved. Now I had something to do to distract myself while the MRI machine made all of its crazy noises. I could tap my fingers, fill in the blank for the sentences on the screen, and mentally list words beginning with any letter of the alphabet. Finally the MRI was done, and I could go home and wait for my pre-surgery appointment about a week later.
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