ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: webwrestler on March 29, 2007, 09:04:13 am
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Hi there,
My name is Justin and I am a new member to the AN club. I was diagnosed on Feb. 20, 2007 with a 2cm x 2cm AN. I am scheduled for surgery in Toronto (canadian from the great white north, Winnipeg, Manitoba) to have the TranLab approach in May 2007 (or sooner hopefully)
My questions are:
1) Is there any type of "funny" feeling in your ear/head after they fill it with fat from your leg/abdomen?
2) Can you feel a difference inside after this type of surgery?
3) Are there any "odd" feelings other than the obvious..i.e. hearing loss, possible facial paralysis, etc?
Thanks for your feedback
Justin
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Justin,
Nice to meet someone with an AN similar to mine. In the beginning you might hear some strange sounds as the severed hearing nerve calms down, really odd, I'd say. I experienced no sensations from the fat pack. The profound silence on that side superceded all other things for me. I did experience a new tinnitus pitch, but that is part of the hearing nerve thing I must accept. In the beginning I was rather taken back that I had to learn how to ignore the new "sound".
After the physical recovery (facial, balance, scare healing, etc.) you will experience some difference in the way you relate to words, naming, and task attacking. The feelings you will experience with these cognitive problems will dissipate best if the care givers and people around you are understanding and patient with you. So it is important for your loved ones to know the cognitive issues are real and not imagined. Many Translab patients adjust to these differences in time and we can get right back to work. Just take it easy and be patient.
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thank you Boppie for this description. I have been wondering what it would "sound" like being deaf on my right side. My surgery is coming in May and so my questions have been more not so much about the surgery but what I will experience internally once surgery is over. Will I feel any different. What does deaf sound like?
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I noticed "head" noise after my surgery. Sounded much like water running over river stones, trickling sound. I know others experienced different sounds too, but now I am 2+ years past surgery and my trickling noise is gone. I miss it. I do have tinnitus, but have learned to ignor it. I have to say I enjoy putting in an ear plug on my good ear and quite like the "silence". I do not, however, think I would enjoy this "silence" to be permanent! Every once in a while all the noise of everyday life takes a toll on my nerves and blocking it out now and then keeps me balanced.
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Thanks for the feedback everyone....I have tinnitus in my left ear already. In December when all this started I never thought I would get used to the constant tea kettle in my ear, but surprisingly enough I have. My hearing is pretty poor in that ear so I am hoping that I have been "getting" used to not hearing out of it and the transition to permanent deafness in the ONE ear will not be too difficult.
I guess I will find out soon enough...
Justin
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Boppie,
Can you expain in more detail?
"The feelings you will experience with these cognitive problems will dissipate best if the care givers and people around you are understanding and patient with you. So it is important for your loved ones to know the cognitive issues are real and not imagined."
Thanks
J
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For a short time after surgery there are mild problems with getting letters in the correct order for good spelling, math, and using a keyboard with the same facility as pre op. Some patients call this a short term memory problem (sort of like RAM in your computer). Your brain wants to rest, perhaps it is healing neurologically. There is a bit of fuzziheadedness when trying to do quick recall on word order and memory. I call it a problem with sequencing and my husband labels it a diminished ability to focus. I am not sure how much impatience and the frustration to get recovered plays into the problem. I know that people need to give me more time to do two tasks at the same time. Getting tired easily is a complaint you will read about too. I believe this is due to the need for the vestibular, ocular, response system to adjust and heal.
There is some research out there and you might search this forum for 'cognitive' or 'cognitive disorders' and come up with the thread that addresses this subject. There is a published paper on the research a doctor is doing on Cognitive Disorders. I am sure several other posters will catch up with your questions and give lots more on this in the next few days.
I would like to stress that your experience with the memory thing will be short termed. People with very large tumors and sometimes very small ones have some strong issues with cognition, handwriting, headaches, etc. So, as you research the cognition issues remember that you will be only mildly impacted. Stay positive, your tumor is a medium size and like mine probably not impacting your brain stem. Your doctor wouldn't choose TransLab if you had brainstem involvement.
I was typing at my keyboard and on this forum 4 days after I came home. I am learning to multi task once again, just needing more patience with myself and others.
Your caregivers, family, children, and friends might enjoy a light hearted humor about your "wonkihead' at first, but you will do well to ignore hints that you are just imagining things. Your recovery will be as good and positive as you make it for yourself and others. Education is power.
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Thanks for the feedback everyone....I have tinnitus in my left ear already. In December when all this started I never thought I would get used to the constant tea kettle in my ear, but surprisingly enough I have. My hearing is pretty poor in that ear so I am hoping that I have been "getting" used to not hearing out of it and the transition to permanent deafness in the ONE ear will not be too difficult.
My hearing was mostly gone pre-op. I could barely hear a dial tone on the AN side. But I wasn't completely deaf. And I have to say that post-op I've noticed no difference in what the world sounds like or what my head/ear feels like. I think I did all the adjustment before I even had the surgery. Once the scar heals, your head will probably feel the same. My tinnitus did change quality (not better or worse, just a little different), and I did have to get the earpiece on my glasses adjusted - they just didn't fit quite the same around that ear anymore. Otherwise, I can't tell the difference.
Katie
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I had a retrsigmoid done on the 31st of Jan and can tell you that the posters above nailed it rather eloquently, I had little things here and there that were different but Boppie nailed it pretty good, the retosigmoid scar is different but I feel a rather dead scalp feeling around my scar. The Single Sided Deafness is annying when it comes to locating sounds which can be tough with my two little princesses 14 months
(and running everywhere) and 4 and a half. I need an intercom or webcam in every room because my eagle ears don't work as well. Good Luck, you'll be recovering b4 u know it.
Cheers,
Steve
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After Translab...How did I feel?...
I don't recall any stuffiness or emptiness in my head. My right face felt a little numb. My tongue tingled or felt as if it was burned. My ear lobe ached for a short time. I heard ;D some weired thundering inside my head a few times. The fat pack felt spongy soft behind my ear. My incision stitches were awesome to look at. They didn't hurt. My hair was shaved off in a small crescent. The whole ear lobe felt numb for a month or so. My skull has a dent behind the ear instead of a tight crack like it had before surgery.
Emotionally, the most profound sensations were deafness in the ear and exhilaration that the event was over. I did grieve for my hearing for a few days early on and I got over it by talking with my family. Turning up permanently deaf in one ear has remained an enigma to my friends. Acquaintances still ask if the nerve will grow back. My 84 year old Mom can't grasp it. I am a stronger person now than I was pre AN. My family and I are humbled by the fantastic opportunities life offers us.
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Justin,
When I was diagnosed two years ago, I was at 90% hearing loss in my left ear, I had already adjusted to not hearing very well on my left side. The transition to permanent deafness in my left ear after my translab surgery was not that noticeable to me. I agree with Arushi about the earplug, the total silence is really nice sometimes!
Good Luck in May.
Denise
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Thanks for the replies all. Well, I woke up this morning with even MORE hearing loss...I can barely even hear the dial tone anymore. On a positive note I am getting used to the lack of hearing in the one ear so the change shouldn't be as drastic for me after surgery, I hope.
I am starting to notice that when I talk i can almost hear a reverbation (right word?) in my voice on the "bad side" ... not painful just annoying..i hope this goes away now or after surgery..hmmm! Any thoughts?
Justin
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Justin,
That reverb, went away afte surgery for me, I just replied to you PM, I think that yu will see that althugh many of us had the same surgeries or experienced the same side affects, your experience may be uniique in ways good, bad, inconsequential. You have your age and athletic personality in your corner for sure, look around there are some 20 somethings on here, I thought I was young at 40 but I am probably close to average age. Hang in there, the waiting will seem excrutiating at times but you'll find some peace in yur determination, here's something, I did morning f surgery, I asked my wife to bring a picture of the family to the ICU and she taped it to the side of my bed where my AN was, my Neurosurgeon told me that I would have to stretch my muscles that way t recover faster, but it sure gave me incentive to mve my head.
Cheers,
Steve
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Steve,
Now there is incentive...I will be taking that advice, thank your wife for the great idea.
cheers,
J
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Undecided
I am considering this approach and am concerned with the cognitive issues. My job is very cognitive in nature ( I am an electircal designer/engineer and I do CAD drafting and basically work with my brain rather than my brawn). I'm wondering how long before I can return to work and function properly.
My bosses and co-workers are very understanding as I'm the queen of "weird" medical issues and they have always been extremely supportive!!! They now understand why I'm always saying.......Is that my phone ringing? or Huh?, Pardon, I'm sorry, What?........etc., and don't look at me weird when I ask them to stand or sit on my "good" side!!!
Will educating everyone be enough or will I not be able to do my job?????
Thanks to all you forum folks. This place is extremely helpful to me.
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If your tumor is not large, the mild cognitive issues will not be an issue after a few months. Recovery from surgery and anesthesia will require a few weeks of good rest. You will notice a big improvement in cogntion after that. Most of the problems we experience after a surgery is integration of the sensory, balance, movement, and spatial knowledge that we have about our own bodies. If you are facing SSD then you should look into the best hearing aid option.
Actually my thinking and problem solving processes were okay post op, but I needed a little more time and quieter spaces to do my thinking in than I had pre op. I use a lot of graphics, handle textiles, and work in the visual arts now at 16 months post op and just as well as I worked pre op. One third of my day is spent at a keyboard and monitor screen. I want to stress the importance and value a bone conduction hearing aid will have for you, especially in a work place.
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I had my surgery 20 years ago and don't remember details but i can tell you that I have adjusted well to hearing out of 1 ear. You learn to postion yourself, tilt your head so you can hear. It can be frustrating at times, especially at parties or noisy restaurants. I think the best strategy is to tell people you are deaf in 1 ear.
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Going Mono and leaving Stereo has been tough for me, I need to pay attention to speech articulation allot (family therapist)-My 2nd language is Spanish too, and I find myself having to say Disculpa-repita please more often than not.
Listening to Music has been the most difficult adjustment though for me since it was such an important "support" in my life. :-\
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Hey all,
Haven't visited in a while..been busy with my pre-op this week. I am having translab on May 1...only a few days away. Surprisingly I am quite excited and looking forward to getting this over with. My doctors expect a full recovery. We'll see...:)
Wish me luck, i'll let ya know how it goes.
Justin
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Justin,
Good luck with your surgery and I share your excitement because I just scheduled my second surgery for a recurrence today. Hopefully, it will be the end of our tumors without major consequences! wishing you a speedy recovery.
Eve
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Hi Justin, I am 3 months post translab, my AN was 3cm. I am growing accustomed to the ssd, have a bit of an "ocean roar" after having been in noisy places, but the only cognitive symptoms I experienced were having trouble reading because the words would jump a bit on the page, and I only watched TV with the volume turned off. It was as though my mind was overwhelmed with both picture and sound. Sometimes I would look at the just the pictures in a magazine. It lasted about a week. My head doesn't feel any different becuse of the fat pack. Just kinda dead and numb around and behind the ear. My doc says this will get better over time. At 3 mos, I'm probably 98% normal:-) Best wishes, Yvette
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Hi Justin,
You are in my thoughts and prayers for a great outcome and a speedy recovery.
Take care,
Lynn
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I'll be thinking about you Justin on May 1st. Try to relax and it will soon be over. Look forward to hearing from you when you are ready to update us on your recovery. Bless you and your doctors.
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Yes Justin Good luck. You are and will be in my prayers for a speedy recovery. I will also be anxious to hear from you post-op and to hear your successful recovery. ~ Sharon