Author Topic: Hope and Inspiration for the Newly Diagnosed  (Read 35364 times)

ANdroid

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #45 on: January 15, 2007, 06:22:59 pm »
Hi; here is one I'd like to throw out to the experienced members of our group. I have been suffering from vertigo and odd head pain [tightness in the forehead on AN side and wieerd scalp pain like someone was pulling my hair on the AN side]. The neurologist attributed this to my head injury following a faint and collision with the bathroom sink, wall, and floor. Could all of these things, including the faint, possibly be from the AN?

Obita

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #46 on: January 15, 2007, 07:31:20 pm »
I do not know the answer to that one ANdroid.  I did not feel anything like that.

Anyone else?
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

nancyann

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #47 on: January 16, 2007, 07:28:35 am »
Nope, hadn't had any problems like those. 
Does sound like colliding with the sink, wall and floor could do it though.
Jeez louise !!!
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.

Windsong

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #48 on: January 16, 2007, 09:49:50 am »
I get "faint" almost passing out moments now and then. I'm trying to find out why too. I have some heart issues though.

Nancy ann, that's a nice pic. You look like someone i knew out west up in here in the great white north quite some time ago. Did you ever live there? Could it possiby be you? If it is, she was a wonderful person lol...

Cheers,
windsong

nancyann

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #49 on: January 16, 2007, 01:13:31 pm »
Hi Windsong: I e-mailed you back, but me and computers, well....
I lived up north for 5 years, but in Maine, a little town called Amherst,
about 30 miles east of Bangor.
I've got one of those faces that remind people of someone else.....
(NO ONE EVER WANTS ME !!!!!  lol)
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.

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #50 on: February 05, 2007, 01:48:04 pm »
WOW, this thread has been viewed 5,000 times!  If even one person who is struggling with a new diagnosis has been comforted by the stories here,  I would be incredibly happy :).  Thank you to all who have shared their stories and have given help and hope to others in need. 

Please, if you haven't written yet, and have had a positive treatment experience or outcome, take a few minutes to tell others about it.  If you can offer support and information, or are willing to be contacted by newly diagnosed patients or their families...write a note here.  PAY IT FORWARD...


Wishing you all peace & happiness,

Lisa
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

Boppie

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #51 on: February 05, 2007, 03:51:37 pm »
Hello Newbies,
I am posting to add encouragement to "maturing" folks who might be faced with an AN situation.  I chose translab because I wanted the "uninvited guest" out of my head, and hopefully permanently.  I knew the risks and benfits of both surgery and radiation.  I went with translab...had only 65% of my hearing left on the AN side pre-op.  my surgery was about 10 hours long, spent 24 hours in ICU, and went home easily on the fifth morning.  At home I develped "late onset facial numbness" that cleared up by 10 weeks.  I recovered my balance quickly was and back to routine at 3 months post op.   Aside from some tongue and taste issues that hung on for another 5 months, I had nothing to complain about.  I am a happy, still healthy Grandma, and fill my days doing everything I did pre-op.  Actually I take fewer naps now than I took pre op.  But, in South Texas a siesta always refreshes.  :D  I have been posting here since October 2005.  Write any time, if I can help you out.
« Last Edit: February 05, 2007, 03:56:14 pm by Boppie »

LarryS

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #52 on: February 13, 2007, 08:56:00 pm »
I had worked for the railroad for 35 years and always had a yearly physical and audiology testing with my job. I was on the verge of being able to retire. In April, 2004, I started to notice that I could not hear as well with my left ear, thinking it was from my job or that I was just tired. In April, 2004, my family physician sent me to an ENT specialist who did a battery of tests and sent me for a MRI scan. While having the MRI scan, I passed out but attributed this more to the anxiety of having the test than the actual test. Anyway, I found myself being taken to the nearest Emergency Room by EMS. While in the ER, I had a CT scan and in a few minutes, a doctor walked in and said, "Oh, you know you have a brain tumor?" That is how I found out about this AN.

From the ENT physician, I was referred to Dr. Joseph Chang, an ENT physician in Houston. He told me that the tumor was slow-growing and that the options were surgery or Gamma Knife. He referred me to Dr. Volmer who did the GK on June 30, 2004. I went in at 6:30 and had a metal cage bolted to my skull. Finally at 2:30 p.m., I received my GK treatment. There had only been two patients ahead of me and my treatment was over within minutes. Anyway, they were going to send me home despite my asking them to keep me overnight as I was getting nauseated, and I lived 250 miles from Houston. By the time I got half way home, I started vomiting. I spent the next three days in the local hospital too weak to do anything. When I got home, I could barely get from the bed to the recliner for weeks. I had facial tingling, could not close my eye, moderate to severe headaches, and finally my local physician started me on Neurontin which did help with pain. It took until November, 2004, for my symptoms to minimize. I lost my sense of taste for awhile, had ringing in the ears, and had completely lost the hearing on the left side. I had drooling from the left side of my mouth. It was difficult for me to swallow and I lost over 30 lbs. All the while, they told me these symptoms were not from the GK.

Later on, Dr. Mehmet Alp came on the scene. He is a surgeon with expertise in these types of tumors. We took a watch and wait type approach, having MRI scans every six months, until he told me that the tumor was growing and needed to be removed within a year. On November 06, 2006, he removed 80% of the tumor. It was a rather large tumor and had a tail that was bulging into my brain stem. With every turn of my head, it bulged a little farther and one day I would have dropped and that would have been it for me. My surgery was 8-1/2 hours long, not the 15 that I had been prepared for. They took fat from my abdomen and placed it in the hole where the tumor had been. I was up and walking around the day after surgery. Not just a few steps, but the entire length of the hallway with a couple of stair steps. Now that my hair has grown out, you cannot see the large C scar that is behind my left ear.

My recovery from the surgery was nothing compared to what I experienced after having the GK. I spent one night in ICU and my family was able to visit me every two hours. Dr. Alp and his physician's assistant, Mike, were very good at keeping my family informed. The next day I was moved to the NICU so they could watch me on telemetry and on Friday I was moved to a postop floor that was more quiet and I got a good night's sleep. I was discharged on Saturday.

Within two weeks after surgery, I was back to driving. I still have a little difficulty closing my left eye and my face is a little numb. My throat had been sore but this was from the anesthesiologist using too large a tube during my surgery. I am pretty much back to normal except for these little symptoms. I am back to driving and playing with my grandkids. I am off all the medications I was taking before the surgery.

I am just so glad that I went ahead with the surgery. By the way, both Dr. Chang and Dr. Alp stated that the symptoms I had before were caused by the Gamma Knife procedure and not by the tumor itself. Of course, everybody is different and it all depends on the size and location of your tumor.

When we all received this diagnosis, we were all pretty scared. I tried to read everything I could find on the internet and then found this site which helped the most.  Just place your faith in God and he will carry you through all of this.

Larry in Texas, age 60. 
Doctors were Dr. Joseph Chang, ENT and skull based surgery,  and Dr. Mehmet Alp, neurosurgeon.

jerseygirl

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #53 on: February 13, 2007, 09:10:04 pm »
Larry,

Thank you for sharing your story because it illustrates that ANY form of treatment can have serious side effects. After surgery, you know exacly where you stand but it is not so clear after radiation treatment because the side effects can be attributed to something else or can occur much later. We can't see, smell or taste radiation but nevertheless have to remember that it can be just as damaging as any surgical tool.

                                      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.

LarryS

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #54 on: February 14, 2007, 05:46:28 pm »
I had one doctor tell me that some of my symptoms were not from the tumor. The last doctor told me that all of the symptoms certainly could be from the tumor. I would think that the vertigo could be from the tumor. I had something like spasms in my face. One doctor called them fasciculations. Later on I had trigeminal neuralgia which is some of the worst pain known to man. These were all controlled with Neurontin 300 mg. Ask your doctor about it.
LarryS

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #55 on: July 12, 2007, 06:24:28 am »
Hi all!  I'm back on the board more regularly again after the birth of my 5th child a year ago.  As some of you know, my daughter Bridget was born with Down syndrome and was in the hospital for a month right after she was born.  Today, she is happy and healthy we've had a great first year with her.  She is amazing!  I also recently celebrated the third anniversary of my surgery, which is why I am posting here.  A recent follow-up MRI was completely clear...no enhancement of any kind.  Life is as good as ever, and I am still just as interested in helping others dealing with AN.  If you also have a "good news" story to share, please post it here...I know there are lots of people who could use a strong dose of HOPE right about now...
« Last Edit: February 15, 2008, 08:18:55 am by Lisa Peele »
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

Sheba

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #56 on: June 07, 2016, 06:21:36 pm »
Hi. Bumping this older post, has lots of good outcome stories that are helping me feel more calm as my # days til surgery dwindles !
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

Sheba

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #57 on: June 08, 2016, 09:27:00 pm »

Hi Cityview -

surgery will be in Dallas @ Medical City (we live nearby)

all the docs that I talked to said only Retrosig approach makes sense for mine, since it is mostly in the CPA area, and my hearing is still pretty good

Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

 


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