NO CHANGE! Next scan and follow-up is in 2 YEARS!
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I have my 2-year post-surgical appointment and MRI on April 6th in Salt Lake City. Stay tuned!
Just wanted to drop in and give an update! Last April I had my 1-year MRI which showed “nothing extraordinary”. It was explained to me by both my Dr.s that after only one year there is still a lot of post-operative junk (i.e. scar tissue, fat) and it can take 5 years or more for it all to settle down. I wish they’d come into the examining room with pom poms and a cheering section to emphasize the good news but I guess they don’t operate that way, ha ha. I have to go back every April for 5 years and then they’ll put more time between appointments.
My non-hearing ear is the same, what do I say about that? I have been considering a hearing device for my deaf ear. Neither of the devices will give me directional sound. I will be able to hear on my deaf side but I still won’t know where the sound is originating from. That is probably the most annoying thing. Imagine standing in Costco in line for checkout. Someone says your name but you don’t recognize the voice. You turn around to a good crowd of people and search for familiar faces, for someone who might have called you. It’s interesting for sure… 
There is one called a TransEar which consists of a behind the ear processor which collects the sound and with the help of an oscillator converts the sound to vibration then sends it to an in-ear piece that goes way down in the ear canal, pushing the vibration to the Mastoid bone which then sends it on to the brain.
Another is an implant/prosthesis called a BAHA (Bone Anchored Hearing Aid). It is basically a screw that is “installed” in the Mastoid bone, which is a large bone located low behind your ear. Go ahead and feel for it on your own head now. When the (outpatient) surgery is done the patient is left with an abutment, or a screw, sticking out a little bit. After several months when the screw has grown into the bone, a processor is attached to the abutment and worn behind the ear. Here is how it works:
BAHA
A Bone Anchored Hearing Aid (BAHA) is a new type of hearing aid that enters it’s sound output into the cochlea by vibrating the mastoid bone (the large bony mass just behind the ear) instead of by directing amplified sound at the ear drum.
A BAHA aid has a titanium anchor that is implanted in the bony area behind your ear. That anchor is the transducer which the aid uses to vibrate the mastoid bone with a signal that represents the sound as amplified by the hearing aid. The vibrations of the mastoid bone cause the cochlea to vibrate, so it can “hear” the sound.
People with a conductive hearing loss may find a BAHA an effective way to hear, since it bypasses their middle ear, where the conductive problem exists.
Thought I should post again to say that my friend that I wrote about earlier finally had a chance to see her Dr. and he felt that the radiologist possibly mis-read her MRI. When a person has a fat graft, or fat poked into your head, it would tend to look like a tumor on an MRI because a tumor appears as fatty tissue. Over time the fat from the graft will disperse but after only 6 months it can be tricky. Even after one year they have to look carefully to see whats what. So, that is good news for her.
Things here are good and I’m off my pitty pot for now. I’m excited for the holidays and for having more time with Chris and the kids while they’re all off from the daily busyness. Merry Christmas friends!
Wow, its been a long time since I’ve posted! Its well over six months from my surgery now and I’m back to living life full time and have been for quite a while. My incision has healed and now is a dent in my skull behind my ear. The hair is growing back and is a couple inches long now. The only way you can tell is if I pull my hair back in a pony or barrette and you can see the short hairs sticking out.
The deafness on that side is irritating at best. I keep telling myself that its minor in comparison but some days that just doesn’t cut it. That ear is to the middle of the car when I’m driving and I can’t hear the kids clearly when they talk to me. I have to remind them often to speak clearly and loud enough, not a bad thing though. I get tired of saying “huh?” or “what’s that?”. And the most pet peevish thing about it is when I unknowingly talk too loud and make people that are unaware of my situation wonder what my problem is. The tinnitis in my ear is sometimes not noticeable and other times I feel like I have to talk loudly so I can hear myself over it. Oy.
The balance factor is ok most days but I still stumble and bump into things. I’ve learned to be a little more cautious but if you know me at all, I don’t really have a slow speed.
I guess I am feeling sort of down today. I found out last night that a fellow ANer had her 6-month MRI, her surgery was a week after mine, and found regrowth, almost to the same size it was pre-surgery. Her case makes three regrowths that I’ve heard of. There is a very small chance for regrowth, so says the Dr., but there was a very small chance I could have it in the first place. I need to move on but I feel paralyzed today. {Deep breath} Tomorrow will be a better day.
I was asked to say a few words to my Bible Study group about what God had revealed to me throughout my tumor and surgery experience. I started making a list, lets see, faith, self control, and contentment were the first things that came to mind.
First, faith. When I found out that I had a tumor I was just in amazement that God had chosen me for this journey. I was scared but I also had faith. I had to have faith, what else could I do? My good friend Marj once mentioned to me that the tumor was a gift from God and oddly, even at the time, it made sense. She gave me this scripture to hold on to:
It says in 2 Chronicles 20:15, 17:
This is what the Lord says, “Do not be afraid or discouraged by this vast army. For the battle is not yours, but God’s…You will not even need to fight. Take your positions, stand still, and watch the Lord’s victory”
Second, self control. If you know me at all then you know that I like to be in control of my situation in life. This was not always so but over the course of my adult years it has become more and more prominent. I like to plan and budget and know exactly how things are going to work out from a seemingly simple trip to the grocery store to life in general. That control has required a little bit of adjustment because, really, with four kids there is only so much you can control in that department. Lord knows I try though, ha ha. Anyway, God knew that I needed to be broken of this because from the moment of my diagnosis I had no control over my health or what was going to happen in my future. So He took care of my controlling behavior and replaced it with…FAITH.
Third, contentment. The hardest part. Ok, so my health was out of my control and I had faith that God would care for me in the way that suited Him, and now I needed to be OK with it. While preparing for my surgery I found the greatest group of friends online that had all been treated or were about to be treated for their Acoustic Neuromas. There were lots of questions, tons of answers, and massive amounts of support and prayers found there. I knew the ins and outs of the outcome of surgery. I learned that there could be lingering pain, remaining tumor, temporary or permanent facial weakness or paralysis, long-term instability, terribly loud tinnitis (ringing of the ear), spinal fluid leak, I could go on and on. I had to go into surgery knowing that any of this could be my life when I came out. It was frightening but I knew that God has a specific plan for me and all along I said that I wanted this illness, this situation, to work to His glory. When I got out of surgery I was in ICU. After my family left the room and it was night I lay in bed unable to sleep. I talked to God. All night. I prayed over and over again for contentment in that moment, to be ok in that minute, and to be ok with whatever God had for me when the day came, and the next day, and the next day. I had no idea what to expect and no control over the outcome, it was ALL GOD. I knew it, and He knew it. Weird as it may sound I was a little bit excited to see what God had for me and how He would use me.
So, all in all what did I take away? That I am not in control of my life, God is. And I have faith that He is enough.
As I was thinking about what I was going to say tonight a song got stuck in my head, you might know it.
Enough by Chris Tomlin
Chorus
All of You is more than enough for all of me,
for ev’ry thirst and ev’ry need.
You satisfy me with Your love,
and all I have in You is more than enough.
Verse 1
You’re my supply, my breath of life;
still more awesome than I know.
You’re my reward, worth living for;
still more awesome than I know.
Verse 2
You’re my sacrifice of greatest price;
still more awesome than I know.
You’re my coming King, You are ev’rything;
still more awesome than I know.
Bridge
More than all I want, more than all I need,
You are more than enough for me.
More than all I know, more than all I can,
You are more than enough.
I can’t believe its been over a month since my surgery! The recovery has gone so well, better than I could have ever hoped. I feel great! Possibly better than before the surgery! Well, I still have the dizzy factor but it is completely manageable. I’ve just accepted that its going to take time, maybe a lot. I tend to go to the right (AN side) so when I walk down a dark hall I bounce off the wall and door jams on the right side. Its actually kind of comical. Its not all the time of course, the worst times are in the dark and when I get tired. Sometimes I just lose my balance for no apparent reason which just makes me feel silly but I haven’t fallen over yet so that’s good. My Wii Fit Trainer often tells me that my right side is weak and stiff and asks if I fall down a lot, HA!
My SSD (single-sided deafness) is something I’m still getting used to. I have to admit though, and maybe I’ve mentioned this before but, I love sleeping on my good ear, which I’ve always slept on my left side anyway, and the world is so quiet at night. Linda and Larry bought us these really neat memory foam pillows and I can’t hear anything through it, I love it! Sometimes Cassidy pulls the hair up on whatever side she’s standing on to see if its my good ear or bad before she talks. Directional hearing drives me crazy. I was in Costco on Saturday and getting ready to check out when I heard someone call my name. Of course there is a zillion people in there so when I turn around all I can do is look for a familiar face or someone looking at me because I have no idea where the sound came from. Its so weird! Chris is learning to walk on my left side when we go out together and I learned to sit with my bad ear to the wall in sewing class. There is still mild ear pressure and of course the tinnitus, ringing that sounds more like holding a large seashell up to my ear 24/7. Luckily it is mild and I’m getting used to it.
Pain level is at zero for all accounts and purposes. Praise the Lord.
Follow-up appointments on Thursday!
Time keeps marching on and you know what, I feel great! I may not be 100% yet in some ways, but I feel better in others I hadn’t imagined. I can tell you one thing for sure, I will never again take my good health for granted.
Over the last week I finally decided I was ready to take my new friends’ advice and resume life pre-tumor.
Saturday evening Chris and I went on a date, out to dinner while Linda & Larry watched the kids. We saw a couple people B.A.S.E. jump off the bridge, and over to the falls which was AMAZING. And looking at all the great heights didn’t bother me like I thought it might.
On Sunday we went to church and afterwards, well, nothing says living like taking four kids to a restaurant, ha ha. I drove home, first time driving. It was ok, I’m still a little dizzy so looking around while driving is slow. Not that I can’t physically do it, just that I have to do it slowly to keep it from being a big blur. My conclusion is that I can drive if I need to but I’ll let Chris do it whenever possible. Again, just something that will take time. All the excitement for that morning earned me a big ‘ol nap in the afternoon. That night I used the Wii Fit and found that my balance is actually better at some things than before, very encouraging! I think that before surgery my body was compensating for my imbalance a lot more than I realized.
The weather has been beautiful so for the last couple of days I’ve hung lots of laundry on the line, spent a lot of time outside with the kids, and have been helping in the garden. Everything I do gets me closer and closer to the new normal. My mom is still coming to help a few hours a day while Chris is at work. Its really a luxury for me and I’ll miss her when she stops coming. *Love you Mom!* Also Larry has been taking the kids to AWANA each week and that has been a nice break for me as well.
I am still fielding questions from the kids regarding my “owie”, mostly from Cassidy. She asks things like “did both of your ears work at Christmastime?”. She also shares theories of how it could have happened even though I simply tell her that sometimes these things just happen and its ok. I’m just glad that my scar is healing so nice and the hair has all but covered it up. Its a good visual for them that I’m healing. On the scar front I do have to say that the one on my forehead is still there. I got my hair cut today and had my stylist look at the other “clamp” wounds. She said that the one on the back of my head is about the size of a dime and the one on the side of my head by my left ear the size of a nickel. They both are round and hairless except for the center, so maybe like a donut. This may be too many details but the other day I felt something like a scab in my hair and when I scratched it a clump of hair came out with it. I’m sure it was not attached to my head, only to the scab. Hopefully it’ll start growing back in in those spots now.
Thats it for now. I have a follow-up appointment with both the neurosurgeon and the neurotologist on May 7th. I am expecting nothing but happy Drs.
Dear Friends and Family,
Words cannot express our thankfulness for your faithfulness and prayers while I had my surgery and as I recover. I have been overwhelmed with cards, food, notes, emails, prayers, visits, and more food, its so wonderful and humbling. Somehow “Thank you” doesn’t seem like enough, I can only hope to pay it forward in a way that would honor what you’ve all done for me and my family. Praise God the surgery is behind me and the results following the surgery were better than even the doctors had hoped. The recovery now will just take time and patience. Please just join me in praising the Lord, for he is good.
Anissa, Chris, and family
I can’t believe its almost been two weeks since surgery! Life is starting to come around again and I am so thankful for that. Chris took the last two weeks off work (week of surgery and first week home) and went back in the afternoons only this week. My mom has been here most every day during the week to help with the housework. Friends are still dropping meals off each day and I can’t tell you what a huge blessing that is. I’m still not driving although I think I’m getting close to trying. The constant pain has dwindled and I’m down to one pain pill at night to help me sleep and ibuprofen during the day. I still have some cobwebs in my head, by that I mean dizzy and tired, but I’m starting to get used to it and am doing a bit more. My scar is starting to look good and my hair is coming in again. Its amazing what two weeks will do. Here is a picture of my scar now, I’m not even going to password protect it because I really don’t think it looks that bad!
Here is a picture of Chris and me this week. I just love it now that the kids can take decent pictures!
Also, my sweet friend Miah came over last week with sushi take-out and gave me a pedicure:
