ANA Discussion Forum
AN Community => AN Community => Topic started by: teffaz on June 11, 2009, 03:53:00 pm
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Dear friends,
I made it to postieland! Oh happy day!
Thank you for all your posts, good thoughts, prayers.
Here is my story (and thanks to my dear hubbie for posting while I was in the hosp.):
--Translab surgery on Thurs., May 28 was seven hours. Facial nerve preserved but "scraped." Tumor completely removed, but more tumors found in my neck in a CT scan!
--Four days in ICU. Lumbar drain for 3 (?) days. I think it was Sunday before I felt like eating. Amazing care. Two more days in a private room. I walked the floor of the hospital using a cane; came home using none.
--Very excited that post-op pain was not nearly as bad as I had anticipated.
--Thankful my facial paralysis/weakness is not worse than it is (House-Brackmann grade III (to 3 1/2) out of VI). However, I wish that I had received eye ointment in the hospital before being discharged. My left eyelid does not close, and my eye was dry and hurting. At my post-op visit eleven days out my neurotologist put a tiny strip of first-aid-type tape (3-M brand) on my eyelid, just above the eyelashes, and he gave me a prescription for eye ointment (Puralube). Both of those have helped a great deal! (I put fresh tape on every day.) I have an appt. with an opthalmologist to make sure I'm doing all I need to do to preserve my eye. At two weeks out, I can feel that my eyelid is getting closer to closing. Yea!
--Of course the ointment is goopy and makes vision extremely blurry, but even without it, my eye is useless for reading. I trust that part of my vision will return.
--Lost my big smile but my husband says it's coming back.
--Have been walking every day and am up to a half hour a day in our hilly neighborhood. I am slow and very wobbly; keeping my eye gaze a few feet in front of me on the ground. It feels so good to be out-of-doors!
--It is certainly a generalization to state that acoustic neuromas are slow-growing. Mine wasn't. It's length increased by one-third in just under four months. The pathology report on my AN talks about the percentage of MIB-1 cells in the tumor and states, "This is significantly higher than seen in the typical Schwannoma and suggests the possibility of more rapid growth in any residual tumor."
--Okay, now about the additional schwannomas. A CT scan (why is wasn't an MRI is a long story; no one's fault) the night of surgery revealed several (3 or 4?) tumors on the nerve sheath of my cervical neck (from C-5 to T-1). The neuroradiologist suggested a possible diagnosis of NF-2; my neurosurgeon thinks instead that I might have NF-1 or Schwannomatosis (a new word for me!). We're in a watch and wait mode on those tumors since they aren't presenting any symptoms yet.
Goodbye for now. Thanks for listening. Off to my nap.
Best,
Brenda
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Brenda ~
Welcome back! I'm pleased to learn that you're home and will pray that your current issues resolve quickly. The hospital stay was apparently intense but ended well (you're home). :)
The news about the other tumors is a bit daunting but I hope they can be dealt with soon (or ignored, if that's even feasible).
Now, enjoy that nap - and post again when you have the time and energy. We'll wait.
Jim
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I'm happy that you've done so well after surgery and are coming along so nicely! So sorry to hear of the additional tumors-what a bummer to find that out just as you're getting rid of the one you knew about! Hope you get some answers soon on those ones!
Adrienne
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Brenda .....
So glad this AN surgery is behind you, but sorry to learn you have the other tumors to contend with. Hopefully your eye will soon be back to normal or at least more manageable to help with your stability when walking.
Thanks for letting us know how you are doing. Get plenty of rest and let your body continue the healing process.
Clarice
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Hey Brenda,
Just keep in mind that the worst is over and you'll get better and better -- a little bit every day.
Cheers
Neal
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Yea, Brenda!!! ;D Welcome back!! ;D
Jan
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Oh, you mean Teff! Sorry, I just think of you as Teff instead of Brenda.
I wish all the hospitals would just include eye drops or ointment with every surgery, just in case. Having my share of eye issues (not AN related), I am particularly sympathetic to eye pain and possible damage. A little prevention would go a long way. Sounds like you have caught it in time and are on your way to recovery, though.
I had not heard the term Schwannomatosis either, but a quick Google shows that it is right in there with NF-1 and NF-2. Hopefully you can watch and wait for a nice long time.
Best wishes and take care,
Steve
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I agree with the eye problems in hospitals. I had the facial neuroma in 2006 and was not given anything the first night because it looked like my eye was shutting at first. Well by the time the night was over,it wasn't. Plus they never called for any and had none handy. A nurse tried the saline which they mix with nebulizer drugs. I was so glad when my husband showed up in the AM as he had my Refresh Liquigel. Univ of Iowa only gives a tears product for day use. I always take my Refresh Liqugel with me. I don't use it every day now but I sure keep it with me. I learned after my first surgery. I have even told them that they need more than a lightweight drop.
Cheryl R
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Hi Brenda,
Thank you for the update. So glad you're home and getting out and walking. I think being outdoors makes a huge difference.
I too am sorry about these other tumors. Keep us posted on that...
Take care,
Keri
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Hi Brenda,
Great news that you are o.k. As per the other tumours, you will deal with them as you need to. Don't worry. At least this surgery is over, and you will get better every day.
Vivian
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Hey, Steve,
I modified the title of my thread. Thanks for the heads up!
Best,
Brenda (Teff)