ANA Discussion Forum
General Category => AN Issues => Topic started by: LisaB on April 03, 2008, 03:36:58 pm
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Hello all...
I’ve been perusing the site now for a couple months...finally decided to “speak� up. I was diagnosed in Jan 08 with a left side AN the size of a lima bean (1.3x.6x.9cm) I have always hated lima beans! Anyway my only symptom was a sudden onset of dizziness in the first week of January that has gotten tolerable since then, but still debilitating. It took about two weeks to get a diagnosis and all my doctor kept saying was, “this is a very complex case.� I have significant conductive hearing loss in my right ear (30-40%) and my AN is my “good� hearing ear.
I too, have spoken with 4 different doctors and gotten 4 different treatment plans. I am leaning towards surgery (Middle Fossa @ HEI w/ Dr. Brackman), against the recommendation of my local doctor in Colorado. Which is not easy for me as I tend to be a “people pleaser.�
So, to my points (only two). First for those of you who have had dizziness symptoms before surgery, did you get relief or did it get worse after the initial surgery recovery. Now I realize it is different for everyone...just wanting to get some feedback.
Secondly, I went to my vestibular therapist today and after two months of therapy my “balance� function is completely normal.... BUT, I still feel dizzy. I am currently on Klonopin, which really helps take the edge off the dizziness, but if I am late in taking it, I can start to feel that unstable feeling in my head. For me there is a real difference between the feeling dizzy and having balance issues...do you agree? I did have both, but now am only feeling the dizzy when I am pushing it too hard (two kids 16, &12) or when the medication is wearing off.
Bottom line is that I know God is in total control of this situation and I am extremely grateful and I do find rest and comfort in that!!!
Hope this isn’t too long...thanks for reading!
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Lisa~
I did have a lot of balance issues before I was diagnosed -- I don't really remember a difference between "balance" and "dizzy" -- I guess I was a "DIZZY BLONDE" or is that "Ditzy"?? I still have balance issues now, but I think they would've been MUCH worse had I not had the surgery. Yes, I do still have balance problems, but think they are much better now...
Kind of rambling...sorry...just had more surgery...please contact me later & I hope I can be of more help!
K
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Hi Lisa
Prior to surgery I was having issues with dizziness. I attributed it to old age until my ENT told me 59 isn't old. Sometimes when I would stand after lying down my head would be spinning. I don't know if I had problems with balance -- I think I did -- nothing major like following over -- just a shorter stride and care when I was going down steps. But the balance issue I had then is nothing compared to the balance issue I have now 4 months post-op.
I'm not fond of Lima Beans either unless they're in a Veggie soup.
Best wishes.
David
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Hi Lisa,
I agree there is a difference between dizziness and balance issues. I define dizziness as vertigo and spinning and balance is more like listing to one side and finding difficulty doing things that previously weren't an issue..like walking down the stairs...more like bounding down the stairs.
Dr. Brackman told me that your other side learns to compensate for the nonfunctioning side. It seems to be true in my case. My balance actually leveled out prior to my surgery. The only time I notice anything is when I am extremely tired. I did not get vertigo.
That being said, I remember watching Sherry's Story from the Medical Diary series. She was dizzy prior to surgery and not so after.
The truth of it is that we all react differently and although there are common patterns, there is always the exceptions. I am sure it depends on the location of the dang lima bean too.
Dr. Brackman is excellent. You will be in good hands if you choose him. This is the time to pick the best surgeon in the short term to try to get the best long term outcome. I don't know your Colorado doctor, but this is one time you want to be protective of your decision and do what is right for you and not to worry about pleasing another one. They won't be with you living your life afterword.
All the best,
Kate
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Hi Lisa,
We have some things in common. :) I was also diagnosed in January 08 and also told my AN was the size of a lima bean. (I'm not particularly fond of them either) I know what you mean about a difference between balance and dizziness. I have dizziness, especially if I get up or turn my head too fast. I haven't had any balance issues. My symptoms that led to my finding the AN were tinnitus, fullness and hearing loss. The dizziness I have isn't constant.
I am also a "people pleaser" and find it hard to go against a local dr but am now following the recommendations of Dr DeLaCruz at HEI. He is the Dr that called me after I sent my MRI to House. We are waiting to do a second MRI in July (6 months). He said that my AN is deep in the canal and he doesn't think we can preserve the hearing so we will wait to see if it is growing. As I am in the same boat as you and have not had surgery yet, I can't help you with what the experiences are afterwards. Having read posts and spending many hours on this forum, it seems that everyone is different. There doesn't seem to be a specific answer. I think the position of the AN has alot to do with it.
I do agree with you 100% that God is in control, in that we can find comfort! Please stay in touch so we can follow your progress, as your situation is so similar to mine I look forward to seeing how you are doing.
Wishing you the very best!
Glenda
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Hi, Lisa:
Welcome! I'm glad you decided to 'speak up'. :)
An acoustic neuroma will subject each patient to slightly different symptoms, although they'll all be similar, with imbalance being a primary symptom. I had balance problems pre-diagnosis but I didn't suffer with vertigo. My imbalance issues subsided post-surgery although it took many months to completely regain my normal balance. Regarding equilibrium, I'm probably about 90% of where I was before my AN manifested itself in late 2005 and early 2006. I can walk down a flight of stairs without needing a handrail, walk backwards without stumbling and generally navigate as well as I always did, if not quite as fast or smoothly as when I was younger. ;)
I wholeheartedly agree that God is ultimately in control and we just have to pray, do our part and trust Him. I did. The result was quite gratifying. :) I wish you a similar outcome.
Jim
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Hi Lisa, you are right there is a differance between balance and the dizziness.
I had what they called nystagmis [sp ?] and that has to do with your eyes which falls into the vestibular area.
If you are in vestibular therapy "stick with it " re-training those eyes will do wonders for you.
I had balance and vestibular issues,when keeping my head still and looking as far left and right as I could my right eye would bounce
back and forth,and my AN was on the left side [strange] I could not look left or right when walking because the dizzy spells were to much to deal with.After vestibular therapy I no longer have those issues,so it really does work.
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Thank you all for your responses!
We’ll I’m penciled in for surgery with Dr. Brackmann on April 24th...we are now just working through insurance “stuff.� I am weaning off Klonopin today in preparation for surgery. It really did help so, I hoping I don’t feel too bad. I really want to make it to my daughter’s track meet tomorrow...we’ll see.
Kate B...how funny...an Ice Cream Cone? So, much more appealing than a lima bean! By the way, I am the one that called you on the phone from Colorado a couple of weeks ago. Thanks again!
For all that replied with the dizziness, there is one thing consistent, that no two people are the same! I am VERY grateful not to have vertigo (although I have had it in the past)...just the fullness and lightheadedness in my head along with the sensory overload.
My vestibular therapist told me yesterday that in the next few weeks prior to sugery I need to continue my exercises, do lots of “crunchies� and a few yoga poses to get that core strong for the recovery. So...I guess I better get to that.
I am grateful for this site and for all of you!
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We’ll I’m penciled in for surgery with Dr. Brackmann on April 24th...
Lisa -
don't forget to "visit" our ANA calendar and list your procedure so we can all remember to pray for you and wish you well. There is a link under the ANA Community section; I can't think of the exact subject title, but I believe it was started by Phyl.
Jan
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Lisa
The link Jan was referring to in in the ANA Community section under "Phyl's Column" that was stared by Brendalu -- last page.
I'm wondering if the calendar should be given its own Link to make it easier to find.
David
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Lisa
The link Jan was referring to in in the ANA Community section under "Phyl's Column" that was stared by Brendalu -- last page.
I'm wondering if the calendar should be given its own Link to make it easier to find.
David
David -
thanks for correcting me.
I think this is a good idea. Anyone know how to do that?
Jan
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Hi,
I am sorry you have been diagnosed but this is a fantastic site and lots of help and support is here. I am curious who your doctor is here in Colorado. I may know them. There are only one or two I would listen to.
Robyn
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Hi Lisa,
I. too am a Newby, just diagnosed a couple of weeks ago.
I have the dizziness and balance issues. I have some hearing loss, full feeling in my ears and the ringing noise all the time. I am greatful right now I did have those symptoms since it caused me to get the diagnosis while it was till still small. The dizziness, occasional nausea and imbalance issues bother me. It sometimes affects how I do or do not do things. It has come on over the last few months.
So I too am interested in knowing if people have gotten better with time and learning how to deal with this. I have a balance test session Wednesday that I am dreading. I hate nausea and not being in control of my balance. I can deal with pain fine. Also, has anyone been through the balance testing?? How was is??
Take care, Lisa!!!!!!!!!
Mary
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By the way, I am more garbanzo bean length ;)
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Hi Lisa-
As you can see from my signature, I am awaiting surgery (24 days to go!) so can't comment on post surgical balance issues. I can, however, tell you that for the last year I'd noticed that I seemed to be a little less steady than usual. I chalked it up to being over 50, although it did seem strange to me that it was so sudden. Ha - little did I know that Ethel was growning in my head and messing with my balance!
I have only done the quickly balance tests in the surgeons office - enough to prove that I can easily fail a field sobriety test whiel stone cold sober! It was a little daunting, to tell the truth. The good news is that the brain does seem to be able to adjust quite well.
I'll be happy to let you know how my balance is after surgery.
Debbi - counting down in NJ...
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Hi Lisa,
The only symptom I had was vertigo and dizzyness too. And I agree...they are different. I had surgery April 14th, 2005 (almost 3 years!) with Dr. Brackmann (Middle Fossa). After my surgery for a year or so, when I ran....the earth moved with me. Playing softball is very difficult as I can't run and see the ball at the same time. Now after a few years it's a little better playing ball. Life in general is ok. I have balance issues, but not vertigo or dizzyness. My main problem is not balance, but forgetfullness...I feel so dumb sometimes that I can't remember simple things.
Kristin
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HI Lisa,
I know both of your doctors. I spoke with Dr. Hagarty in Colorado Springs. He did not think he could do my son's tumor and recomended our Doctors at University of Colorado. I really appreciated his candor. I know he did someone elses tumor on this board years ago and I like him but I would not have him do a surgical procedure for AN because I don't think his experience is up there with CU Hospital and House.
Dr. Cass is a doctor at CU Hospital and he does surgery with our DR. Lillihei. I would be surprised that either one of these doctors would come right out and disagree with another doctor but then again Dr Brackman came right out and disagreed with our Doctor so I asked them the difference and really it was helpful for me to decide the differences. I did not like that Dr. Brackman was so adamant about our doctors decisions either. I do know that many doctors have a preference as to what way they like to do it. And our neurologist felt more comfortable with R/S.
I think any doctor will want you to do what you want to do. Anyway, that is the information I have for you about those two doctors. Dr. Cass and Lillihei are fantastic. And when you go with your docs at house you will probably have to transfer your post op care with someone here. They would be a good choice for that too. Good luck. I hope that helps.
Here is Cass's info. Even though I know you have made your decision. You absolutely have to go with what you feel best with. No one can change that for you.
http://www.uchsc.edu/otolaryngology/faculty/Cass.html
And one more thing I would not ever have the docs at Swedish do surgery for AN. They are not experienced enough. I know that is blunt but I really, really feel it is true. THat is why I asked. :)
Robyn
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I had lots of dizziness before surgery. I remember a test in the surgeon's office where I had to walk in place with my eyes closed. I was amazed at how much I moved when I thought I had stood still. The dizziness was constant for me and made me nauseous. Somedays I could hardly get out of bed. (hard to do with 3 small kids).
I'm very happy to report that the dizziness is all gone after surgery. I had some vestibular issues right after surgery but they were expected as the brain learns to compensate for one nerve. I was given exercises and things improved. Today, almost 4 years later, I have no dizziness issues. My balance is alright but I don't think it was that great way before surgery. ;)