Author Topic: just diagnosed in wisconsin  (Read 4789 times)

valleysniper

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just diagnosed in wisconsin
« on: September 25, 2011, 07:56:58 pm »
Hi,I have just been diagnosed with a 1.4 cm AN about 4 weeks agoI know that may not seem very big,but, To me any tumor is too big.I have been reading everything I can on this.From what I read,the outcome doesn't sound all that promising,It seems as nearly everyone has complications from the surgery.I am very concerned about the facial paralysis,or weakness , as I do a significant amount of public speaking in my line of work.Anyway,the Information that Is out there is very overwhelming,not to mention confusing to me. If anyone has any words of wisdom,I sure would appreciate it.I am going to the mayo clinic in Rochester for a second opinion. I just want to be sure of my options , as my first doctor--DR.Harvey from the Medical College of Wisconsin said that the gamma or cyber knife really wasn't a very viable option. I guess ,for now I'm in a holding pattern,Sure could use some advice.Sorry If I seem very down,but I have gone through ??? numerous surgeries in the past few years  ,everytime thinking that was the last one. I never thought , going for a hearing check would end up with me being told , "you have a brain tumor ".Thanks for any words of encouragement, Gary

Kaybo

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Re: just diagnosed in wisconsin
« Reply #1 on: September 25, 2011, 09:10:58 pm »
Gary-
Hi & Welcome! Know that we have all felt the way that you are feeling now - that's very normal!! I had surgery almost 16 years ago now (wow! That's a long time) and I did have a lot of "complications" THEN - I think that medicine has come a LONG way and that many of these things are either non-existent or temporary now. I can think of many more SUCCESS stories where people have gone on doing what they were doing before surgery. Then there are some of us who did have some complications, but still live a very active & full life now!  I know that someone else will be along soon to share more with you!
Keep your chin up - there are MUCH worse things than an acoustic neuroma!!

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CHD63

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Re: just diagnosed in wisconsin
« Reply #2 on: September 26, 2011, 07:23:56 am »
Hi Gary and welcome to this forum of caring and supportive friends .....

First of all, although hearing the words "you have a brain tumor" is a major shock, this forum exists to make this journey less stressful for those who are diagnosed with an acoustic neuroma.

Secondly, if you have done so already, send for the free informational materials from the ANA.  See:  http://www.anausa.org/index.php/contact-us/free-ana-information-packetĀ
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: just diagnosed in wisconsin
« Reply #3 on: September 26, 2011, 07:37:54 am »
Gary,   Finding out about having an AN is scary.     There is life after surgery though.   The forum looks like we may all have a harder time after surgery but many are on here and do fine in time and are off and back to their normal life.      There may be some adjustments but we do adjust.     The balance issue post op improves for most as does the facial issues.  There is some surgical help for those who may need it for the face or just facial therapy.      Many do not have facial weakness or paralysis.           Many do have the single sided deafness or SSD and there is some help for that also for some.        Tumor location and size plays a part in what damage one has and what it has done to nerves before even have treatment.       
   You might want to check into Univ of Iowa in Iowa City also for surgery if that is what you want.     Dr Bruce Gantz does more mid fossa to preserve hearing than Mayo's does.   UIHC does between 60-70 ANs a year.      This is where I go and have NF2 and have had 3 tumors.    There are many out of state people who go there.     
               We wish you well in your AN journey!                    Cheryl R
         
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

moe

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Re: just diagnosed in wisconsin
« Reply #4 on: September 26, 2011, 09:41:09 am »
Hi Gary and welcome to the forum,
Your tumor is on the small side and as mentioned, there are different options for you.
Most people on the forum have their surgery, do just fine and then leave the forum. Then there are those who just stick around and help support others.
I had a complicated AN which is not the norm, so don't let my signature scare you.
Everything will turn out all right, you will see. The hardest part is trying to make sense of all the information, and picking a doctor. You will have great peace of mind once you come to that decision, you'll see.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

valleysniper

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Re: just diagnosed in wisconsin
« Reply #5 on: September 26, 2011, 01:48:48 pm »
Thanks to all who replied,I am still a little unsure of all of this. I'm going to have to check out the different types of surgeries,and see what seems to be the best choice.As far as symptoms go,I have lost almost all my hearing in my right ear,am light headed and dizzy almost all the time,and my balance is bad enough that I don't even like going on a 6 ft stepladder anymore,I am wondering if anyone has had any issues with eye pain from this,I have diabetes and don't believe this pain is from that.Thanks for the help, Gary
                   

Jim Scott

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Re: just diagnosed in wisconsin
« Reply #6 on: September 26, 2011, 02:33:21 pm »
Hi, Gary ~

I'm sorry to be late with my response to your initial post but I did want to welcome you and let you know that there are quite a few of us who had fairly large tumors yet did not experience any of the complications you're concerned about i.e. facial immobility.  I had a 4.5 cm AN debulked via retrosigmoid surgery to approximately 2.5 cm  then radiated using the FSR approach.  I did not experience post-op facial weakness, headaches or other issues.  That was five years ago.  I remain symptom-free and have pretty much resumed my normal lifestyle, which isn't especially strenuous (I"m retired) but still relatively busy (church deacon).  I was SSD (single side deaf) prior to the surgery and remain that way.  It is an impediment but hardly a handicap for me.  I have one or two very minor 'reminders' of the AN surgery but nothing that is noticable or that impacts my quality of life in any way.  I state all this as the kind of encouragement you're seeking and an example of an AN patient that did not suffer a host of post-op complications.  I'm hardly a special case.  I would suggest that it is imperative to select a doctor that is well experienced in AN cases (mine had 30 years doing this kind of surgery) and, if possible, a doctor that will be concerned for your quality of life, post-op, rather than simply removing the tumor and little else.  I was blessed to find such a neurosurgeon and am the beneficiary of his experience, skill and caring attitude that, I believe, contributed greatly to my excellent outcome.  I hope you'll find a similar doctor.  They do exist in many places, including the famous House Ear Institute in Los Angeles, California.   Mine was closer to my home (Connecticut) but wherever you end up I trust that you'll have a similar AN surgery experience.

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

valleysniper

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Re: just diagnosed in wisconsin
« Reply #7 on: September 26, 2011, 02:45:50 pm »
Thanks Jim, I'm starting to feel a little better,when I was diagnose I felt like I was the only one in the world with this.My wife tries to be understanding and supportive ,but lets face it if you don't go through this it is very hard.I am also wondering ,does everyone end up using some kind of a device to help walk after surgery?If so for how long?I know lots of questions and Ill have even more I'm sure     Gary

Cheryl R

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Re: just diagnosed in wisconsin
« Reply #8 on: September 26, 2011, 04:11:47 pm »
Gary,  It sounds doubtful that you would be a candidate for mid fossa with your hearing loss.    The dizziness is from damage to the balance nerve from the tumor and your other side of the brain is trying to learn to compensate for the nerve and will in time.    The nerve with the tumor is severed with surgery but your body is already working on adjusting.         Patients past surgery receive steroid either just in the hospital or something orally at home.     They watch the blood sugars as it will be elevated with the steroid and give you insulin extra per what the blood sugar is.  The blood sugars will go back to what they usually are once off of it.     
Not everyone uses some device to help them walk.        I never did and know of many who have not.         Some do and are not on them for long.     One has to be active and keep at walking and the body adjusts.     You will be very tired for a time past surgery.       
     Good luck as you choose where to go and what is best for you.                  Cheryl R
       
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

CHD63

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Re: just diagnosed in wisconsin
« Reply #9 on: September 26, 2011, 04:19:06 pm »
Hi Gary .....

In regards to balance post-op, much depends on how much compensating your brain has already done before surgery.  It sounds like your tumor is already destroying your vestibular nerve (by the fact you are lightheaded/dizzy and have balance problems) and thus your brain has already begun compensating by the vestibular nerve on the other side taking over the job.  Often, for people in a similar situation, balance recovery afterwards is rather quick.  What happens before surgery is the brain does not know what to do with the erratic signals from the damaged vestibular nerve on your AN side.  Once it is removed during surgery, the brain knows to use only the remaining good vestibular nerve.

In my case ...... unbeknownst to me or my surgeon, I had only one working vestibular nerve, which was on the AN side.  Therefore, when I woke up post-up following my first surgery 3 1/2 yrs ago, I had no working vestibular system on either side (and now will remain that way forever).  This is a very unusual situation so do not expect this to happen.  I used a walker for about two weeks, graduated to a cane for several months, and with extensive vestibular rehab, now walk unassisted with little difficulty.  I had to learn to strengthen my redundant balance systems (vision and sensorineuro), as well as strengthen my overall core muscles.  Even the Ponto Pro bone-anchored hearing device I have is further assistance with my balance.  Now the only time I even think about it is in the dark, in nearly all white situations (snow or white shower curtains in white tubs), or walking on very uneven surfaces.  My case is really one of the "worst case scenarios," certainly not the norm.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JAndrews

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Re: just diagnosed in wisconsin
« Reply #10 on: September 26, 2011, 07:59:41 pm »
My advice is to go to House Ear in LA. I am fine. They are the true experts. I went to Mayo also--saw Link and Driscoll. Very nice surgeons--but after I did a ton of research--they were not getting near my brain.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

ksiwek

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Re: just diagnosed in wisconsin
« Reply #11 on: September 27, 2011, 09:17:03 pm »
Hi Gary,

I am almost 16 months post op and am also live in WI.  By the the time I was able to have my AN surgery, I had developed just about every AN symptom (I had a large AN).  For me it was at the point that I could barely walk on my own (I was at the end of my pregnancy) and needed to hold to someone to avoid falling.  My left eye also stopped moving so I couldn't see much either to figure out where I was going.  I was in rough shape balance-wise.  I started to think that I would be in a wheelchair or walker for long time post op.   To my amazement I rode a bike 10 weeks post op and just did my first half marathon a couple of weeks ago.  Go figure...it took me turning 30, having a baby and recovering from a large AN to believe that I could train for and complete 4 different races this summer.  This time last year, I would have never believed it.  Recovery does happen...but it takes time, patience, prayer and believing in yourself.  I also just started doing acupuncture and yoga and I think both have helped with the balance and dizziness.

There is an ANA support group meeting in Mequon coming up on 10/15 that I will be attending and sharing my story.  If you are in the greater Milwaukee area it would be a great chance for you to meet other AN folks.  I think there is also one coming up in Green Bay, too.

Best of luck,
Kris
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

schmidtkat

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Re: just diagnosed in wisconsin
« Reply #12 on: September 28, 2011, 10:44:28 am »
Hi Gary,
Sorry to hear of your diagnosis. You've found the right place for support. I still consider myself fairly new to this, so I don't have the expertise as some of the other ANers on here. My diagnosis came on  July 28th. I had surgery at the HEI on Sept. 2nd and am at home recovering. My tumor was 3+cm, just a bit smaller than a golf ball. The surgery was nearly 8 hours, and was a complete success. Dr. House and Schwartz told me their approach would be to aggressively go after the tumor but not at the risk of damaging the facial nerve. The results have been just that...100% removal of the tumor and no facial nerve damage. I couldn't be more pleased with the choice to have gone to LA (I'm from Iowa).
Your concerns with the things one can hear, read and research about the possible outcomes are not uncommon. My advice on this is to be sure you are getting information from credible sources, know that it's sometimes easier to find the squeeky wheel than than the positives and get multiple consults on your options. I too visited with Driscol and Link at Mayo and found them to be very informative and do not regret the time spent with them to help me make my decision.
To give you a positive outcome I'll share a little of my story. My surgery and recovery thus far seem to be amazing my doctors, family and friends. I do not have anything to compare it to, so I am just soaking in the compliments. I had been told to expect 12-14 days in LA. Instead, I was released from the hospital on day 4 and flying home on day 6 after my surgery. My incision site is healing well. I do have a few issues with balance and vision, but those are improving. I had some headaches shortly after surgery, but those are becoming less frequent and less severe. I am adjusting to the hearing loss and in the process finding ways to laugh at myself. It's certainly not all fun and games; I do have my pity pot moments. However, humor, positive attitude, support from family & friends (including those new ones I've met on this site) and lots of prayers are getting me through this. I wish the same for you!
Thoughts and prayers ~ Kathy

leapyrtwins

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Re: just diagnosed in wisconsin
« Reply #13 on: September 28, 2011, 07:19:31 pm »
Hi, Gary -

my AN was 1.5 cms when I was diagnosed (4+ years ago) and my outcome was very promising.  I had my surgery in the Chicago area with an excellent neurotologist who does both GK and surgery.

I don't know what part of Wisconsin you are located in, but I have referred folks with ANs who live in Wisconsin to him.

If you're interested in learning more about my doc, please PM me through the Forum.

Best,

Jan

Jan, had to remove your personal email but as you noted, folks can certainly PM/email you here through the forums :)
« Last Edit: September 29, 2011, 04:08:42 am by ppearl214 »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways