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Author Topic: Hello -- back again  (Read 8534 times)

CHD63

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Re: Hello -- back again
« Reply #15 on: March 21, 2011, 02:05:46 pm »
I learned the hard way to always pick up a copy (or copies) of the MRI CD right at the time of the MRI.  Also at the time, I ask when the report will be ready and go back and pick up a copy of it.  I had one too many experiences of not being given the information on the report in a timely fashion.  You have a right to all of the information as soon as it is available.  However, if you are going to be upset by any negative news, I would advise waiting to hear the report from your doctor.

Let us know what you find out.

Clarice
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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

arkansasfarmgirl

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Re: Hello -- back again
« Reply #16 on: March 22, 2011, 11:52:59 am »
Good luck!!  I have had periodic problems with fluid/swelling in my good ear as well.  Steroid nasal spray cleared it up for me.  I have allergies and small eustachian tubes...nice combo.  :-P  It goes from sounding like being in a barrel or underwater, to everything being robotic sounding and off-key.   I had these problems before, but it wasn't as bothersome with 2 ears to hear from.

I hope it turns out to be something minor and easily fixed!!!!

Vonda
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pfmarquez

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Re: Hello -- back again
« Reply #17 on: March 23, 2011, 07:45:32 am »
I'm happy to report the MRI came back negative and clean with no identification of any masses.  This was such a huge weight lifted from my shoulders, and I praise GOD for blessing me!  Yesterday, I had an ECOG & ABR test, and will go over it with the ENT on Thursday.  I have a free day today to not have to deal with any doctors or tests...looking forward to that.  This weekend I started to read up on Sudden Hearing Loss and called the ENT on-call and requested a dose of steroids.  So, I'm on a pretty high dose tapered off for 15 days.  My main symptoms were, 1) loss of high and low frequencies 2) pressure/fullness 3) some tinnitus (very little vertigo if any).  It seems as though I notice less symptoms when I am outside.  I spent most of the day outside yesterday which made me feel like the symptoms were almost gone, but they are still there.  At least the pressure has subsided some which was the most unbearable of the symptoms.  I still get some popping about 8 of 10 times I swallow.


I just wanted to Thank everyone for the kind comments, responses, and definitely prayers...you are all in my daily meditations.  I am still grieving from the loss of my father, and I now feel I can grieve in peace.  This setback has allowed me to re-focus on my life and the way I should be living..the husband, father, brother, son I should become.  I turned my back on this forum and put my AN issues behind me a long time ago.  I will not do that again.  I am here to stay to help all of those in need with this problematic issue as much as I am able.  I am going to start to look for a AN support group and continue to share with everyone's struggles.  I live in KC, MO - so if anybody knows of one, please let me know.

Thanks Again & God bless

Pablo





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Cheryl R

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Re: Hello -- back again
« Reply #18 on: March 23, 2011, 08:06:11 am »
Pablo,    I am very happy to hear of the good MRI.     The swallowing noise is eustachian tube related as I have had it since my last surgery and my neurotologist is not concerned.      Annoying but I ignore it now.     I hope you do get some more answers.      Right now is being a hard enough time.             We are thinking of you!                       Cheryl R
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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: Hello -- back again
« Reply #19 on: March 23, 2011, 08:13:38 am »
Pablo,
So glad the MRI came back clean! Enjoy your day.

(I grew up in Prairie Village, KS, a suburb of Overland Park~ family still lives there...I hope you find a support group.)

That is what is so nice about this forum. It is always there to come back to. So glad to hear that you are here to stay. Don't do the guilt thing about not staying on the forum, or "turning your back" on the forum. This IS a great place just "to be" as we all continue our "journey" in the post AN life that no one really gets :P
Cheers :D
Maureen
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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

Jim Scott

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Re: Hello -- back again
« Reply #20 on: March 23, 2011, 03:08:18 pm »
Pablo ~

Congratulations on the fabulous news!  Prayers were answered and I'm very happy for the positive outcome.  Enjoy your day off!

Jim
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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.

Brewers7

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Re: Hello -- back again
« Reply #21 on: March 23, 2011, 03:12:47 pm »
Pablo,
Great news.
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Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Kaybo

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Re: Hello -- back again
« Reply #22 on: March 24, 2011, 09:03:18 am »
WONDERFUL news, Pablo!!  ;D ;D

K   ;D
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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
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T3-3/08
Great life!

hendi51

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Re: Hello -- back again
« Reply #23 on: March 24, 2011, 09:28:26 am »
I'm so sorry for the loss of your father, Pablo. You got wonderful news and I hope everything continues to be good news.
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My husband had translab 3/15/2011 for 1.5 cm x 1.5 cm left side AN at
Methodist University Hospital in
Memphis, Tn

CHD63

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Re: Hello -- back again
« Reply #24 on: March 24, 2011, 09:54:27 am »
Whew!  What a relief to learn that your MRI was clean!  Perhaps this news and relief will now allow you to complete the grieving you need to do for your father.  It is not an easy time.

Both of my parents are now gone, but my father died first ..... unexpectedly at age 70 and I can still remember the emptiness I felt for a very long time.  Still wish I could talk with him and tell him all about his grandchildren (my kids), etc.  He would be so excited for them.

Many thoughts and prayers for you.

Clarice
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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

pfmarquez

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Re: Hello -- back again
« Reply #25 on: March 24, 2011, 12:09:50 pm »
Thanks Clarice - you know my pain...its a very empty feeling, I'd rather it be physical pain.  I miss him dearly.  Dealing with the anxiety of this latest auditory issues just added to the stress.  Its been a very difficult couple of weeks.

I went to the ENT today, and found that the results for the ABR and ECOG test were both negative.  So, from a grand scheme of things, the worst case scenario has been ruled out.  Thats a big relief and I'm so happy to be blessed. 

Unfortunately, I still am having the symptoms and its been 16 days now.  The pressure is the most annoying.  The ENT is treating it like Meniere's Disease.  So, he started me on some diuretics and wants me to cut down my sodium and caffeine intake.  I'm going to try this and hope the symptoms go away in a month or so.

Anybody here ever been diagnosed with Meniere's?  Are there any other tests that you know of that I should try?  Should I continue to be diligent and look for further answers?  Maybe see an Otologist?  I'm scheduled to see my AN ENT surgeon next Friday.  Maybe he can shed some further light on my issue.

Thanks again for the kind responses -- I am forever grateful -- you are all in my prayers daily.  GOD BLESS!

Pablo

 
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lauralynn

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Re: Hello -- back again
« Reply #26 on: April 10, 2011, 11:37:24 pm »
Hello Pablo,

So glad your recent MRI came back clear!  So sorry for the loss of your father.  How are you doing?  Hope your ear issues have improved.  Welcome back to the forum and please keep in touch.

God Bless,

Laura Lynn
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4 cm left AN/diagnosed 1/23/09
Translab 4/14/09
Cyberknife 7/09
Gold weight implant 8/09
Barrow Neurological Institute, Phoenix
Dr. Syms and Dr. Porter
Balance issues, 100% hearingl loss (left ear), tinnitus, facial numbness/pain,
chronic fatigue, weakness, eye issues

God Bless everyone

pfmarquez

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Re: Hello -- back again
« Reply #27 on: April 15, 2011, 09:45:05 am »
So, after seeing two different ENTs, they both concurred with a Meniere's Disease diagnosis.  This diagnosis is somewhat of a fall-back once everything else has been ruled out.  Although most sufferers of this disease have unbearable bouts of vertigo,  I have not experienced any vertigo.  My symptoms continue to this day 4/15 since 3/8 - so for about a month, and primarily include the pressure/fullness and a little tinnitus.  During my second ENT visit, an audiogram showed my hearing was back to normal range, so that was good news.  Perhaps (it might have been the steroids or the diuretic).  I don't feel my hearing has gotten any worse. 

Although Meniere's has no "cure".  There are several remedies that can help the symptoms which are primarily:  pressure/fullness, tinnitus, hearing loss (high/low frequencies), and vertigo.  The ENT started me on a diuretic and a low salt diet.  These helped relieve symptoms.  I'm done with the steroids at this point.  I'm simply taking the diuretic, trying to maintain a low sodium diet (<2500-3000), and taking certain vitamins and supplements.   

I know I've been incognito, but all my spare time is being spent on a similar forum - menieres.org - trying to soak up as much knowledge as I can.  I'm going to be in LA during June for work, and am planning on going to see someone at the House Ear Clinic.

Although I've found relief, it appears these symptoms may be with me for a long time if not ever. 

Thanks for your thoughts and responses - I appreciate them.  I hope everyone is well.

Pablo
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james e

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Re: Hello -- back again
« Reply #28 on: April 15, 2011, 12:27:43 pm »
Sorry about your Dad, but good news about your MRI. When my vertigo was at it worst (prior to my surgery) I took Zofran and it was like a miracle to me. There is a generic available. Zofran was $60.00 per tablet, so ask your doctor if this drug or its generic might benefit you. Good luck to you.

James
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