Author Topic: Unexpected  (Read 8164 times)

Wlo_Bmanspouse

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Unexpected
« on: November 03, 2011, 10:58:04 am »
Hello,
     I am new here. My husband was diagnosed Oct 17th with an Acoustic Neuroma tumor 3.1 x 2.2 x 2.5. First reaction was different for us. My husband , Buster , was like " Ok " , I on the other hand was more stunned and in semi-panic mode realizing this is going to be major. So our first couple days we were not on the same page but we are now and that is a good thing.
     It's been a roller coaster ever since, between feeling of unknowns and frustrations to panic and relief. I am thankful to find this outlet and am just reaching out at the moment. I just received word on our possible surgery date Nov 16th , 2011 , not sure if I can express the multitude of emotions going on right now.
     I will return later today, Thank you , Keeping hanging on     Wlo   

CHD63

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Re: Unexpected
« Reply #1 on: November 03, 2011, 03:06:29 pm »
Wlo and Buster .....

Welcome to this forum.  Sorry it took the diagnosis of an acoustic neuroma to find us, but we are very much here and active to support you along the way.  If you have specific questions, ask away and you are certain to have several responses as to the experiences of the forum members.

It is so normal to have the emotions of fears of the unknown, frustration, and panic.  If we are totally honest, all AN patients have gone through these emotions.

Tell us a little bit more about Buster's symptoms that led him to have an MRI.

Many thoughts and prayers during these next couple of weeks especially!

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

Wlo_Bmanspouse

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Re: Unexpected
« Reply #2 on: November 04, 2011, 12:42:13 am »
Thank you Clarice for responding,
     As for symptoms, Buster started losing his hearing over 2yrs ago, when tested then it was down to 30 % in his right ear. For the past 6-8 mo , gradually increasing complaints, of dizziness and losing his balance just walking.
     Guessing because he left his job in Feb, it was mutual agreement between him and his job, I began noticing lots of little things. Things that led me in a different direction, like memory and confusion. Since we share the same primary doctor, which at this point seems to have been , honestly God sent , I took it upon myself to voice my observations to the doctor. He in turn sent us to a Neurologist who ask some questions but truly feel on my persistence that something was not right went ahead and order the MRI to be safe.
     Then we got the phone call from that doctor he wanted to see us to discuss the results. He could not give us much info other than what it was , where it was and that it was beyond his expertise and they got the appointment for us with the specialist.
     So basically in my opinion it really was a fluke or definitely Divine intervention and am thanking my blessings. Buster is relieved to know why he has been feeling the way he has but now that he is getting the idea of the whole scope of this is getting nervous and anxious.
     Seems to me the first lesson learned here and wish i could broadcast this to ppl is when you see the doctor don't just give him one symptom at a time. My husband philosophy on this is changing , he always just wanted to give the doctor one thing to work on at a time, and tried to ignore a lot , i.e. including frequent headaches, trouble swallowing.
     We are now waiting for part of the "team" to call about setting up evaluation of his health for surgery and I am hoping this will give us more info on things to do before surgery and what to expect after. This could not have hit us at the most vulunerable time for us. Buster decided to take early retirement since he is already retired for the military and thought his SS check would start in Oct , but it does not til Dec. He did work seasonally for H&R Block which will be out of the question next year. I just don't know what all he will need after surgery. I don't know what to try to plan for financially. Guessing that the part with the "team" calling will help in that direction. The God send thing is that he is retired military and at the moment don't seem to be having any problems with the insurance part, so am praying that keeps holding up.
     I am also Thankful for my daughter and son-in-law who have been most supportive and some close friends in the neighborhood, at least we know we will not go hungry.
    Well sorry for typing you eyes off, will check back again and Thanks again for responding it helps to know there are others out there. If there is anything anyone knows that maybe I should expect and/or need to know I would be most grateful.

                                                                                                                            Sincerely , Wendy - Wlo
 

CHD63

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Re: Unexpected
« Reply #3 on: November 04, 2011, 08:09:24 am »
Wendy .....

Thanks for sharing some more about Buster's situation.  Did they give you the size of Buster's acoustic neuroma?  It sounds as though it may be medium to large in size with all of his symptoms.  Your primary care physician was absolutely right that an acoustic neuroma is beyond most general physicians expertise.  This is one condition where you want the doctors with the most experience dealing with ANs treating you.  If Buster is not in an urgent situation, I would urge you to seek more than one opinion, even from specialists.

In my case, I flew across nearly the entire United States to have my surgery done at House Ear Institute in Los Angeles, where I had excellent results.  There are other good physicians in the country, that was just my personal decision.  Many excellent medical facilities will give free evaluations if you mail his MRI CD and audiogram to them.  That's what I did before going to HEI.

If you have not already done so, I would strongly urge you to send for the free ANA-USA information.  There is a wealth of information in the materials.  See:  http://www.anausa.org/index.php/contact-us

Many thoughts and prayers.

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

Cindyswart

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Re: Unexpected
« Reply #4 on: November 04, 2011, 08:24:25 am »
Wendy, I noticed that you husband was military, I am in North Carolina and my husband is Civil Service. We have BCBS of NC FED program, and the insurance situation has been wonderful. I hope that it goes that way for you, it's enough to have to deal with this thing in the head, not to mention the money thing. PM me if you have any other questions!

You both are in my prayers!
Cindy
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

Wlo_Bmanspouse

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Re: Unexpected
« Reply #5 on: November 04, 2011, 02:49:24 pm »
Thank You Cindy,
    We are under Tricare Standard and so far so good. Will know apparently more on this on the 10 th of Nov , this is Busters Pre-Admissions Assestment Day. If I have more question i will pm you , I appreciate the offer. This outlet for me is keeping me on an even keel and I can't seem to Thank you all enough.

                                                                                          Sincerely , Wendy - Wlo

Wlo_Bmanspouse

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Re: Unexpected
« Reply #6 on: November 04, 2011, 03:13:21 pm »
Hi again,

     Thank You Clarice, again, as I mentioned the MRI report suggest the tumor is 3.5 cm x 2.2 cm x 2.5 cm , I don't know what that relates to other than it's not small. They definitely seem to acting pretty quick. My husband is not known for being a patient man so a second opinion is pretty much out of the question at this time.
     We are working with a Team in Nashville , TN , Howell-Allen Clinic. Dr. Abram is our lead specialist from this group. The treatment plan is to do surgery to diminish the tumor then follow-up with static radiotherapy to break it up. I hope this helps with some of the questions you had for me. If it had not been for our research online and this site , we would have been totally lost on the appointment with Dr. Abram. The gest I got from this direction is to be as less invasive as possible as to not cause more damage.
      There is something that has popped up a couple of times lately with my research and that is regrowth. Is this common on benign tumors? The Dr. did only give it a 70% of being benign instead of the seemingly 100% normal , is that correct ? or is the Dr. maybe just being cautious? These are the little things that creep up on me at times if I let my mind wonder too much so I try to keep myself busy.
     Well that's all from me for now and Thank all of you Again !! can't Thank you enough.

                                                                                                                                       Wendy - Wlo

CHD63

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Re: Unexpected
« Reply #7 on: November 04, 2011, 03:50:53 pm »
Wendy .....

Sorry ..... I did not look back at your first post for the AN size.  Yes, it is in the medium to large category.  However, normally ANs only grow 1 to 2 mm per year ..... sometimes not at all and sometimes they have much more rapid growth.

Regrowth is very uncommon ..... only 5 - 9% on retrosigmoid approach surgeries ...... even less with translab or mid fossa surgeries.  Not sure why his doctor is saying 70% chance of it being benign when the statistics indicate acoustic neuromas as being 90+% of the time benign.   I guess there is the possibility they are not sure if it is another type of neuroma or a meningioma.  Sometimes doctors like to give worst case scenarios so patients cannot come back and say they were not told this or that could happen.

Gather your questions and email the doctor and/or take to his next visit.

Thoughts and prayers.

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

leapyrtwins

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Re: Unexpected
« Reply #8 on: November 13, 2011, 10:07:17 pm »
Regrowth is very uncommon ..... only 5 - 9% on retrosigmoid approach surgeries ......

As Clarice said, regrowth is very uncommon.  I'm not sure where her 5-9% statistic came from though.  I had retrosigmoid approach surgery and my odds of regrowth are 1-2%.

Acoustic neuromas are 99.9% benign.

Jan
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