Author Topic: One large unilateral tumor- later the other one appears? Am I Nf2? Help.  (Read 21409 times)

nancyann

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #15 on: September 02, 2009, 04:00:27 pm »
DHM:  I am so sorry to hear of this news.   I have gotten tinnitus in my good ear on & off, but never constant as I have in the AN ear.

Hearing in my good ear is also super sensitive - I think the left side is trying to compensate for no hearing in the right.

I hope the MRI will be negative,  you're in my thoughts & prayers.
BIG CYBER HUGS (wish I could do it like Phyll).

Let's all keep good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Omaschwannoma

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #16 on: September 07, 2009, 08:55:21 am »
I would like to "chime" in on this thread to say I for one can totally understand how you are feeling and thinking.  I am very interested in your results and will be checking in from time to time for your answer.  I do hope they have an answer to all your issues plus ways to solve your problems! 

As I stated, I have identical problems going on with my good ear with a severe drop in balance and increase of visual bouncing with low/bass tones.  My daughter saw this first-hand while we we were walking down the street and three motorcyles passed by.  I swerved to my right, my knees buckled underneath me and she grabbed my arm to keep me from planting my knees into the pavement.  She was shocked and I made some sort of comment to the like of business as usual for me. 

My doctor is aware of my ongoing issues, decrease in hearing and with the most recent MRI showing "nada".  He has given me three diagnosis' of another tumor too small to detect, superior canal dehishence (not seen on MRI), or hydrops.  He suggested I go see doctors at John's Hopkins for "fresh ideas" as he's unable to help me at this time.  I have decided to save the money involved and let time and more symptoms reveal what my course will be.  I live a quiet lifestyle now, using my earplug whenever I will be around low-tone noise, I do not go out to restaurants, movies or parties.  Life has changed dramatically for me.   Not really happy about it, but doing the best with what I've got. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

4cm in Pacific Northwest

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #17 on: September 07, 2009, 09:12:02 am »
HUGS to you Karen.

DHM :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

4cm in Pacific Northwest

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #18 on: September 18, 2009, 10:01:07 am »
UPDATE

SO the lost MRI order from California saga never resolved... Sooh I went to see my ENT, in Oregon, for hearing tests etc. The ENT ordered the MRI instead and just contacted my surgeon to find out the detailed specs. I get the scans done, pick up the CD and radiologist report from the local imaging place... then yesterday I FINALLY get a call from Stanford "I have the Dr's order here..." (Gee took them long enough!!   ::)) What a fiasco!!

SO the good news is I still have perfect hearing in the good ear (whew). NO additional AN tumors (schwannomas) evident in the radiologist report (I collected just yesterday) ... although I have not heard from the either doctors yet.  SO… no NF2 (whew- I was so worried about subjecting my youngest child to testing etc.) Please know my heart goes out to many of you with affected family members that go through this.

So the bad new on the report was "Para-nasal sinus disease"...  ??? I googled it and it could be a number of things ... that can be treated with medications or in severe cases- surgery (Oh not again!  ::) I am sooh done with hospitals, anesthesia, constipating pain meds.) Interesting that hyperacusis and finding “listening to one’s own voice painful” …can be a symptom (which I have had since I woke from AN surgery)

So there has been a mucus drain issue there for sometime. Wouldn’t it be cool if something can actually be done to get rid of my hyperacusis?  8) I have suffered with these last 2 years... :-[

Thanks to all for your input.   :-* :) The last month of wondering if I had another tumor in the hearing ear and if I was an Nf2 candidate has been VERY frightening- especially when I had the diminished hearing in the good ear (which appears to be from mucus build up in the Para nasal sinus area).

You folks are SOOH tremendously supportive and I am so forever thankful to you-all. The ANA is such a fabulous organization- isn’t it?

Pre follow-up MRI anxiety is now behind me... now to figure out the "para-nasal" stuff... an plan of action.

DHM :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

moe

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #19 on: September 18, 2009, 10:48:41 am »
SO happy to hear that it is not an AN and you are not NF2. Whew what a relief.
So what if you have para-nasal sinus disease? To me sounds  like "chronic build up around the nasal passageways". Hopefully a piece of cake to address and treat compared to the AN thing.
Just some medicine to clear away the mucous???? Trying to think simple!
Happy for you. Hope to see you tomorrow in Portland.
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

Jackie

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #20 on: September 18, 2009, 11:32:07 am »
Oh DMH,

I am so very very happy for you that your biggest worry and nightmare is not what you thought! Oh happy day!!! Now if you are able with meds to clear up the sinus thing and if that alleviates the highpercussis thing, wow, won't that be a huge blessing!!! I really think you have suffered enough! Thank-you so very much that during all of your suffering you have truly been a blessing and inspiration to so many of us!!! See you tomorrow, and I'll be collecting a big hug!!!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Cheryl R

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #21 on: September 18, 2009, 11:53:37 am »
DHM, I am thrilled for your good news.            I had a feeling it was not NF2 but it is hard not to worry when unusual things are going on.              I do hope the sinus can be helped in an easy way.                           I never had a sinus infection till I got married.     I found out in time that I am allergic to grain dust and my husband works at a grain elevator.               I still have a occ problem with sinus.     Medication has been all I have needed luckily.                         Good luck and hope it clears up all problems!
                                                                     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

Jim Scott

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #22 on: September 18, 2009, 12:09:05 pm »
DHM ~

Thanks for your positive update.  I'm one of many who've followed this thread with interest and I just wanted to submit my congratulations on your long-awaited MRI report and the fabulous news that you do not have NF-2.  Although our sympathy for those who suffer with NF-2 is unrelenting, it's still good to find that you're not going to have to deal with that particular challenge.  'Para-nasal sinus disease" doesn't seem to be all that daunting and yes, treating it might just alleviate your hyperacusis.  I hope it will!  

Jim
« Last Edit: September 18, 2009, 03:19:09 pm by Jim Scott »
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.

4cm in Pacific Northwest

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #23 on: September 18, 2009, 02:42:08 pm »
I never had a sinus infection till I got married.     I found out in time that I am allergic to grain dust and my husband works at a grain elevator.              

Interesting as this year we had our farmer plant a wheat crop for the first time since we lived here and bought the acreage. He harvested the week I became sick and the house, cars, everything was covered in wheat dust. All the other local dry field (IE no irrigation rights) farms switched to wheat this year (better cash crop) so wheat dust is everywhere in our valley. (Hey but we have more beautiful sunsets this fall!)

I have no problem eating wheat- but wheat dust may be a different issue. My youngest child is really suffering with sinusitis. We actually switched away from Timothy Hay crop because of her grass-seed-pollen allergies. Seems we cannot win. SO much of healthier-country-living air... :-\

Interesting comment about wheat. Thanks for sharing.

DHM
« Last Edit: September 18, 2009, 02:44:29 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Cheryl R

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #24 on: September 18, 2009, 03:13:04 pm »
My actual dusts that I am exposed as am in Iowa are corn and soybeans.    I bet wheat could be one that is part of my allergies too as was just told grain dust.            I actually am some better with getting infections since have all the nose running with my eating and activity.     Nothing gets time to sit around on the inner tissues and cause problems.                 
Very interesting with your situitation and bet it could be part of your sinus problems and your family.       Worth asking about anyway.               My allergy testing was done for another reason even and not the sinus problems.    We were looking for food allergies.          Among others I am also allerigic to cats.      I have grandkitties but they don't seem to cause too much problems.   
                                                                Cheryl
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

Kaybo

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #25 on: September 18, 2009, 03:19:38 pm »
DHM~
So glad that you got good news!!  So now you are just "snotty"??   ::)

Cheryl!
I thought that you were going to say that you were allergic to your hubby!  :o

;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!

Cheryl R

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #26 on: September 18, 2009, 04:20:24 pm »
Kaybo,  I do think I have said that more than once to him!     Probably didn't go over too well!
                                                     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

ppearl214

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #27 on: September 18, 2009, 05:58:25 pm »
OH, my dazy hazy mazy! GREAT news and a major sigh of relief!  You hang in there..... ya hear me?  Ok, at least one ear hears me, right? ;)

xoxoxoxoxoxxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

jerseygirl

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #28 on: September 18, 2009, 06:46:48 pm »
Congratulations on a clean MRI report! It must be an incredible relief!

          Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Omaschwannoma

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Re: One large unilateral tumor- later the other one appears? Am I Nf2? Help.
« Reply #29 on: September 19, 2009, 04:54:13 pm »
Excellent news DHM--I'm very relieved for you.  Now I'm going to look up this para nasal sinus disease.  All my best to you and hope your doctor can remedy your sinus issues in "pill form" rather than pokin around in there!   :D

Karen
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

 


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