I apologize for the email blast, but I just can't tell this story dozens of times [and I don't want tons of people calling saying "how are you doing", that will drive me crazy]. So here is the story. . .
First, don't freak out. Trust me, I have done that enough for everyone.
The short version - I have a brain tumor. Now that the shock is out of the way, it's benign, and I will be OK.
How and why was I diagnosed?
About a month after Kinsey was born (mid-February), I started having relatively frequent headaches, issues with dizziness and balance. I chalked it up to being sleep deprived, 40 and hormonal. Mid-March my postpartum check and blood work was normal, but I still had some odd feeling. Early in May, I started experiencing numbness on part of the right side of my face. I went to see a general family doctor, and she luckily sent me for an MRI. The MRI revealed a mass on the right side of my head, near the inner ear, about the size of a golf ball.
How do I know it's not cancer?
The way the tumor presents itself on the MRI is very classic of this type of growth. It is contained, and does not invade the surrounding tissue as a malignant tumor would.
How do I feel?
Physically, I feel fine. Headaches a couple times a week. Moving my head quickly leads to a quick (quick to come, quick to go) feeling of not being right - dizzy or unsteady balance. Emotionally, well, that depends on the minute. I/we have been trying to be "business as usual" until we had more information. Some moments, that works just fine, others not so much. I'm scared, sad, angry, and don't particularly like the idea of someone cutting and drilling into my head. The surgery will cause me to completely lose hearing in my right ear. It's unavoidable because of the size of the tumor and the nerves onto which it is growing. Losing my hearing on one side, fear of how I will feel after surgery, and what complications will emerge (hopefully none!) are all things that make me nervous and can get to me emotionally at this point. If I could continue with my current symptoms, I gladly would as they are potentially less severe than some things post-surgery, but that is not an option, this thing must come out.
What exactly is it?
It is called a vestibular schwannoma or acoustic neuroma (AN for short). What is most concerning about ANs is that not only do they grow along side your brain, thus shifting and compressing it, but in an area that has three important nerves that control your balance, hearing and face (trigeminal nerve, cochlear nerve and facial nerve). So choices have to be made on how to treat it based on patient preference, size of the tumor, and goals to retain facial feeling/function and hearing. Because of the size, our option is limited to surgical removal and our primary goal is to preserve my facial nerve.
What causes it?
Acoustic neuromas are caused by an overproduction of Schwann cells. Schwann cells wrap around nerve fibers to help support and insulate them. It is not known what causes them to go haywire in some people, and remain normal in most others. There is a very, very, very small percentage of people with a genetic abnormality that causes these tumors on both sides, but mine IS NOT genetic, I was just extremely unlucky.
What next and how is it treated?
We have met with a neurosurgeon/otorhinolaryngologist at University of Iowa a couple of weeks ago, with another team at Mayo Clinic yesterday, and consulted with a clinic in LA. All three are experts in this type of tumor, so we have a pretty good idea what we are dealing with at this point. All concur that it needs to come out sooner than later. We have decided to pursue treatment at the University of Iowa in Iowa City, and have scheduled surgery for June 24th. Dr.Gantz at Iowa has 30 years of experience in dealing with these types of tumors and generally removes 2-3 per week, so we are dealing with one of the best doctors available. Because of the size, they will use what is know as the translabyrinthine approach. I will lose the hearing in my right ear. Surgery should be in the morning and take 6 - 8 hours. I'll spend a night in ICU, and they expect 3 - 5 days in the hospital before going home. My Mom and Red are here now, and will stay to help during my recovery. Recovery time is typically 4 to 6 weeks.
Want to know more?
If you want to know more, the best place I would suggest is the Acoustic Neuroma Association. Specifically What is an Acoustic Neuroma? and Treatment Options.
What else?
We have not yet told Delaney, and probably won't until a few days before surgery. Please be careful what you say around her. After I send this email, I know a lot of those who receive it will have the first impulse to call. I appreciate that, but I can't talk to dozens of people about this. It is just too emotionally draining. If you would like to talk about it, PLEASE SEND AN E-MAIL, OR COMMENT IN THE BLOG (see below), DON'T CALL to ask how I feel (see above) or what you can do - we're good right now, and I want to enjoy the next week or so without being completely consumed by this awful thing in my head. I will try to respond as best as I can to email and the blog. I started a blog and will post updates there. If you want to know if anything new is up, please look there first - add it your blog reader (don't have one? Seriously, you have to get one. I like Google Reader). As we progress through surgery and recovery, we'll get updates posted. I hope to add a few happier posts as time goes on too. The address is http://chateauturner.blogspot.com/. If you reply to this email, please do not reply all and fill everyone's email box.
Thank you for your love and support!
~ Kathleen
First, don't freak out. Trust me, I have done that enough for everyone.
The short version - I have a brain tumor. Now that the shock is out of the way, it's benign, and I will be OK.
How and why was I diagnosed?
About a month after Kinsey was born (mid-February), I started having relatively frequent headaches, issues with dizziness and balance. I chalked it up to being sleep deprived, 40 and hormonal. Mid-March my postpartum check and blood work was normal, but I still had some odd feeling. Early in May, I started experiencing numbness on part of the right side of my face. I went to see a general family doctor, and she luckily sent me for an MRI. The MRI revealed a mass on the right side of my head, near the inner ear, about the size of a golf ball.
How do I know it's not cancer?
The way the tumor presents itself on the MRI is very classic of this type of growth. It is contained, and does not invade the surrounding tissue as a malignant tumor would.
How do I feel?
Physically, I feel fine. Headaches a couple times a week. Moving my head quickly leads to a quick (quick to come, quick to go) feeling of not being right - dizzy or unsteady balance. Emotionally, well, that depends on the minute. I/we have been trying to be "business as usual" until we had more information. Some moments, that works just fine, others not so much. I'm scared, sad, angry, and don't particularly like the idea of someone cutting and drilling into my head. The surgery will cause me to completely lose hearing in my right ear. It's unavoidable because of the size of the tumor and the nerves onto which it is growing. Losing my hearing on one side, fear of how I will feel after surgery, and what complications will emerge (hopefully none!) are all things that make me nervous and can get to me emotionally at this point. If I could continue with my current symptoms, I gladly would as they are potentially less severe than some things post-surgery, but that is not an option, this thing must come out.
What exactly is it?
It is called a vestibular schwannoma or acoustic neuroma (AN for short). What is most concerning about ANs is that not only do they grow along side your brain, thus shifting and compressing it, but in an area that has three important nerves that control your balance, hearing and face (trigeminal nerve, cochlear nerve and facial nerve). So choices have to be made on how to treat it based on patient preference, size of the tumor, and goals to retain facial feeling/function and hearing. Because of the size, our option is limited to surgical removal and our primary goal is to preserve my facial nerve.
What causes it?
Acoustic neuromas are caused by an overproduction of Schwann cells. Schwann cells wrap around nerve fibers to help support and insulate them. It is not known what causes them to go haywire in some people, and remain normal in most others. There is a very, very, very small percentage of people with a genetic abnormality that causes these tumors on both sides, but mine IS NOT genetic, I was just extremely unlucky.
What next and how is it treated?
We have met with a neurosurgeon/otorhinolaryngologist at University of Iowa a couple of weeks ago, with another team at Mayo Clinic yesterday, and consulted with a clinic in LA. All three are experts in this type of tumor, so we have a pretty good idea what we are dealing with at this point. All concur that it needs to come out sooner than later. We have decided to pursue treatment at the University of Iowa in Iowa City, and have scheduled surgery for June 24th. Dr.Gantz at Iowa has 30 years of experience in dealing with these types of tumors and generally removes 2-3 per week, so we are dealing with one of the best doctors available. Because of the size, they will use what is know as the translabyrinthine approach. I will lose the hearing in my right ear. Surgery should be in the morning and take 6 - 8 hours. I'll spend a night in ICU, and they expect 3 - 5 days in the hospital before going home. My Mom and Red are here now, and will stay to help during my recovery. Recovery time is typically 4 to 6 weeks.
Want to know more?
If you want to know more, the best place I would suggest is the Acoustic Neuroma Association. Specifically What is an Acoustic Neuroma? and Treatment Options.
What else?
We have not yet told Delaney, and probably won't until a few days before surgery. Please be careful what you say around her. After I send this email, I know a lot of those who receive it will have the first impulse to call. I appreciate that, but I can't talk to dozens of people about this. It is just too emotionally draining. If you would like to talk about it, PLEASE SEND AN E-MAIL, OR COMMENT IN THE BLOG (see below), DON'T CALL to ask how I feel (see above) or what you can do - we're good right now, and I want to enjoy the next week or so without being completely consumed by this awful thing in my head. I will try to respond as best as I can to email and the blog. I started a blog and will post updates there. If you want to know if anything new is up, please look there first - add it your blog reader (don't have one? Seriously, you have to get one. I like Google Reader). As we progress through surgery and recovery, we'll get updates posted. I hope to add a few happier posts as time goes on too. The address is http://chateauturner.blogspot.com/. If you reply to this email, please do not reply all and fill everyone's email box.
Thank you for your love and support!
~ Kathleen
Kathleen and Mark, just got your email. We are, indeed, sending love and support your way -- and are wishing for a full and speedy recovery. We're encouraged by your bravery and hope to hear good news in the coming weeks. All the best, Amir and Saira
ReplyDeleteYou are probably a lot of things...scared, unsure, concerned.
ReplyDeleteYou are also strong, focused, intelligent, adaptive, together, resourceful, loved, blessed.
My prayers are with you as you take this...journey.
XO - Lori
I am really sorry you are going through this moment in your life. I am thinking of you guys and my heart is filled with the certainty that it all will go well. God has strange ways to keep us on track in our lives. I like to believe that through suffering one achieves spiritual wisdom and enlightenment. I'll be praying for all of you. Love,
ReplyDeleteInez
Hi Turners, I think I'm all signed up for Google Reader. Naturally, Kathleen's condition will be at the forefront of your lives until you move through your surgery and recovery. It's important to focus on yourselves during this process. Once you are past the tough stuff, this experience will become part of who you all are, but not the main part. Good times with family and friends will take their rightful place above your health challenges. Keep looking forward to the light at the end of the tunnel...by "light", we mean, Mark, Delaney, Kinsey and the rest of your loved ones who make life worth living.
ReplyDeleteLove, Margaret, Chris, Freeway & Zeus
Kathleen and Mark.......I'm amazed at how your handling this situation, so open and candid...you're role models for us all!!! Wishing you and your entire family the very best!!! Love to you all, LeRoy and Vicki
ReplyDelete