ANA Discussion Forum
General Category => AN Issues => Topic started by: Hexe on February 28, 2009, 09:05:06 pm
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I find I think of more and more questions as time goes on.
(I also forget many things as well).
First, I feel very lucky to have received the good care I did.
My tumor was small and my doctor told me he got everything out.
I am totally deaf on my left side, balance is still not much better, dizziness is only when I stand up or turn around quickly.
I now have tintinitis when I stretch (sounds like a michine running; loud humming sound but stops when I relax).
Still tire easilly.
Is this all pretty common?
Does anyone know when I can color my hair again, and if so, with which products?
I am not overly hungry, but everything I eat tastes very good!
I forget many simple words and know that I know them but can't recall them.
Does anyone have anyexperince with bi-cros?
I have two hearing aides (one of which is usless, of course). Can it be changed to a bi-cros machine?
What do bi-cros machines cost?
Can anyone explain just what, exactly happens during the operation?
I had a trans-lab procedure.
I have double vision, with left eye weaker than the right, left eye looking higher than the right.
This is a great place to visit, looking forward to your replies.
Hexe
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Hi Hexe: sounds like you're progressing nicely to me. I can't help with the hair dye or hearing aids...
Continued healing my friend, Always good thoughts, Nancy
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Hexe,
I can't help you much with all of your questions, I didn't have any dizziness, but with balance you can have slight problems for months. Four weeks after surgery I thought I had no balance problems until the Dr told me to close my eyes and put my arms out in front of me, I almost feel over. Tinnitus was also much louder after surgery and is still 18 months later. I have 50% hearing loss in AN side. I had some double vision AN side for 2 months and then I had to get new reading glasses and the double vision went away pretty fast. I've never colored my hair so I'm also no help there. Forgetting words also lasted for a few months, but I think it was more because I was always so tired. It sounds like you are recovering normally, and I'm sure you will get alot of help with your questions here.
I have to ask, do you know what Hexe means in german?
Dan in Germany
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Hi Hexe,
Congratulations --it sounds like you are having a wonderful recovery. Fatigue is very normal at this stage, tinnitus may or may not get better that's kind of tricky, dizzyness and imbalance will probably improve with time. Are you going for physical therapy and/or doing vestibular exercises? This would help with your balance issues. Double vision should also improve with time. As for coloring your hair, I would check with your doc, but most will tell you to wait at least eight weeks. I can't help you with regard to bi-cross, but I'm sure someone else will be able to provide that information.
Best wishes for continued good healing,
Wendy
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Hhhhmmm, now I'm very curious. Just what does "Hexe" mean in German, Dan?
As for the hair dye, once your head has healed sufficiently Hexe it's a go. The definition of sufficiently should come from your doctor. Everyone heals at a different pace; he/she should have the final word.
Jan
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Jan,
Hexe in german means "witch", which I'm sure Hexe isn't.
Dan in Germany
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Good morning everyone.
thanks to all who have responded.
This is a great site!
It feels so good to know there are others out there who have had similar experiences to mine.
I think I will contact my local doc and request PT. That way I will have to go and be more motivated to learn and do balance exercises.
My doube vision is worse when I am tired and mostly distance, watching TV.
Reading doesn't seem to be much of a bother until I get really tired.
This next one for Dan: Ja, natuerlich weiss ich was Hexe bedeutet in Deutsch! Aber, sagt es keinen anderan!
I wrote: of course, I know what Hexe means, but don't tell anyone else. My spelling is not so great and probably worse since my operation. But I try. Seven years ago I adopted a cute little black, female puppy from the pound and named her Hexe. Several years later I got my computer and use 'Hexe' often as my ID on line.
I lived in Germany for 25 years before returning here. and now live in the frozen wilds of northern Michigan.
Again, thaks for all you replyies,
Hexe
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Guten Morgen und Wilkommen, Hexe!
In vier Wochen, werden Sie normalerweise voran, denke ich. (In four weeks, it seems to me you are doing well.)
My doctor said 8 weeks before I could color my hair, although there were many differing opinions on this site. My tinnitus was terrible but settled down after a while, hopefully yours will as well. When in doubt, call the docs!
Sorgen Sie für sich selbst betrachtet, (take good care of yourself)
Marci
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I was told to wait 3 months before coloring my hair.
Samantha
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Thanks for all the replies. Hate the idea of having to wait 3 months, but it is sure a little problem compaired to averything else that could go wrong, be difficult, etc.
Now I have anothter question. I would like to work out, preferable a "Curves". Anyone know if this is possible, with modifications, or not at all?
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Hexe~
Remind me again how far out you are from surgery? That would have a HUGE impact on what you do. Have you been released from your Dr. to lift?
K
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I'm about 4-5 weeks out. I don't remembering my doctor saying anything about releasing me from anything or allowing me to lift... Guess I should call him...
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I think that would be the best...specifically ask if you can do weights and resistance...
K
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I started running a bit at four weeks, preceded by walking and run/walking at 2 weeks. I didn't lift anything though, but I'm all for getting moving. I'm pretty sure it helped me to recover at a brisk pace. (no pun) ;D
M
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Hi again Hexe,
I noticed when I looked at your post again you were curious about what happens during surgery. I discussed this with one of my docs and to the best of my recollection, this is a pretty accurate description of the surgery. After your head is shaved and cleaned with Betadine, an incision is made behind your ear. The mastoid bone and muscles around it are exposed and the mastoid bone is drilled away. This exposes the semisurcular canals, venous sinus and dura (the dura covers the brain) and cerbral spinal fluid. The semicurcular canals are removed (drilled away I think) to expose teh internal auditory canal. The dura is opened and the tumor is exposed. The trigeminal nerve is retracted and the tumor capsule is opened. The inside of the tumor is removed and the capsule collapses and is then dissected from the nerve. The vestibular nerve is removed. Fat is harvasted from the abdomen and used the fill the cavilty that's been created by the surgery which helps prevent CSF leaks. The surgical site is closed following the mediculous steps iin reverse. A scar is born!
Wendy
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I also forgot to mention that before closing the skin, many doctors, mine included will place titanium mesh and/or plates over the cavity and secure them with with titanium straps and screws. This replaces the mastoid bone and places constant pressure on the surgical site, which also helps prevent CSF leaks.
Wendy
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Wow! The docs did all that during my surgery! :o
Thanks for the detailed explanation of the surgery. Although I read my operative reports, they certainly weren't as clear as that.
And "a scar is born" :D Very cute, Wendy!
Jan
. . . sorry for the hijack, Phyl ;)
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Jan,
I think they also stopped to clear the cobwebs out of your head while they were in there. :D They may have missed a few!
Lori
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Gee thanks for the compliment, Lori.
I know I can always count on you!! :D
OH NO!!! A double hijack - Phyl is going to kill us :o
Jan
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Hi Jan --
I'm glad you liked my description of the translab approach. I'm sure I left some things out, it's been a while since I discussed thsi with my doc and I know some I left out some of the details. I actually remember reading about the retrosigmond approach which I found equally interesting although I don't remember it as clearly. I remember that while there were some similarities although it was a little different, starting with the incision being a little further back. If you're interested, I'll send it to you. All in all, I'm pretty sure I remembered the general jist of what my doc told me about translab though. I thought my "a scar is born" was rather clever too so I'm glad you liked that too! ;D I haven't yet gotten a copy of my operative report but plan to ask for a copy eventually. I really find this stuff very interesting.
Hexe --
Sorry for yet another hijack! ;D I hope my explanation answered most of your questions.
Lori -- Cobwebs huh? They must have been hanging out in the arachnoid meatus (somewhere around the dura I think -- do I sound like I know what I'm talking about?). :P
Phyl - Forgive my sidesteps, just trying to cover all the bases!
Wendy
Sorry Phyl
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Ok guys, thanks for all the information, support, and insider jokes. (in side'r head jokes?)
I love your scar is born too!
Do all the Dr.s put in all that metal stuff?
How do I get a copy of my operative report? just ask for it? I find this stuff very interesting too.
I don't get ''hijacks" jokes... Who you saying "hi"to? Jack? ..... I'm lost....
So, they made a C shaped incision behind my ear, then peeled my ear back?,....driilled a hole in my head...how big?...and then took a very small amount of belly fat (I told them to take lots more but they didn't listen)?...so do I still have a hole in my head? will it grow together again?...
I give up, all this info makes me dizzy!
Hexe
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tsk, tsk, tsk... didn't think I'd find this eh? ;) Back on topic folks... thanks!
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Hi Hexe,
A hijack is when you ask another question or answer someone else's question on a thread originated by another person. It can also be joking around too.
Not all docs use titanium mesh and plates and people who don't have this eventually form an indentation behind their ear since there is no bone to put back when the translab approach is used and the bone that's been drilled away doesn't grow back. There is nothing wrong with this and is standard procedure for some docs. I think most docs put the bone plate back for retrosigmoid and some will also use titanium mesh and straps to suppor it and apply pressure to the operative site. I remember my doc saying that pretty much everyone puts the bone plate back for middle fossa. He didn't mention anyone using titanium mesh or plates for this approach either. Only your doctor can tell you if you have titanium mesh and/or plates. If you'd like a copy of your operative report you can ask you doc and I'm sure he will provide you with a copy. I don't know if there is a standard size for the operative site. I remember when I got statements from my insurance company my doctors both mentioned the repair of a six centimeter defect in my skull, so I assume this is the size/area of the hole that was drilled in my skull. I seem to also remember someone mentioning that their doc used some kind of plastic instead of titanium. Maybe someone else will have something to say about this.
Wendy
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Yeah, I had something like spackle. Or at least in my drugged haze that's the explanation I remember. I will ask at my next follow-up.
Best,
M
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Hi Hexe!
I see you have a good sense of humor! You'll fit in well around here!
I had translab and have no spackle or mesh or bungee cords or anything else fancy. Just a hole in my skull. My doctor doesn't (or at least didn't in my case) put the piece of bone back - just filled it in with the abdominal fat (he didn't take enough of that either, if you ask me!). There is an indent there, but it's completely behind my ear so you don't see it. I like to think that I not only got free liposuction, but I probably lost a few ounces with that hunk of bone gone now. :D I like to try to put a positive spin on things!
As far as your operative report, just ask your doc for it. Or more likely, the nurse that will be doing the photocopying.
Lori
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Damn, Phyl found us faster than I thought she would ::)
Hexe -
I have "all that metal stuff" in my head, plus a BAHA implant (a titanium rod sunken into my skull). Lori and Wendy have the implant, too.
I am also a fat-head - which means I had the fat graft from my abdomen.
My operative reports were somewhat over my head (lots of medical terminology) but I found them fascinating.
Jan