Newbie...I hate lima beans!

[LisaB]

Hello all...

I’ve been perusing the site now for a couple months...finally decided to “speakâ€? 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.â€?  I have significant conductive hearing loss in my right ear (30-40%) and my AN is my “goodâ€? 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.â€?

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 “balanceâ€? 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!

[Kaybo]

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

[LADavid]

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

[Kate B]

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

[Glenda]

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

[Jim Scott]

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

 

[satman]

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.

[LisaB]

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.â€?  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 “crunchiesâ€? 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!

[leapyrtwins]

 
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

[LADavid]

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

[leapyrtwins]

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

[robynabc]

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

[MaryBKAriz]

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

[MaryBKAriz]

By the way, I am more garbanzo bean length

[Debbi]

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...