Author Topic: Not looking for answers, just wanted to share. 1yr followup MRI  (Read 2092 times)

waypoint

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Not looking for answers, just wanted to share. 1yr followup MRI
« on: November 07, 2008, 10:59:47 am »
Its amazing. Its been 1 year and 1 month since the surgery. I finally went in for my annual MRI. Wasn't really looking forward to it, but I need to put it behind me. They will send the repor to the Doctor, but I did ask for the films. I would take those to the doctore myself, when he calls to schdule my followup.

My biggest fears were if remenants of the AN were still around. So last night, I pulled out the films and looked. Well, I didn't see anything on the contrast films like when the AN was there. Of course, that was hard to miss back then.  Now, I'm just not sure what I'm looking at.  I can't tell if what is on the film is normal or not.....Its very confusing and making heads or tails of the MRI is fustrating.

I guess I'll just wait till the doctor's office to call and hear from them.

2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

wendysig

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #1 on: November 07, 2008, 11:11:24 am »
Good luck with your follow-up visit.  Hopefully your doc will give you good news.  Please let us know what he says.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Pembo

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #2 on: November 07, 2008, 01:52:42 pm »
I did the same thing with my follow-up films. I remembered how bright white the AN was on the original films, I figured if there was no bright white, I was ok and I was. Stay strong......
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Jim Scott

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #3 on: November 07, 2008, 04:43:50 pm »
Waypoint:

The first post-op MRI is always a bit stressful.  I gave up trying to 'read' those films a long time ago.  Try not to worry and yes, wait until you see the doctor to receive the good news I'm sure is coming your way.  :)

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.

sgerrard

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #4 on: November 08, 2008, 12:50:30 am »
Hi Waypoint,

Hope you are doing well, and that your recovery continues to go well. I'm sure the MRI result will be fine.

Any more trips to Hawaii planned?  8)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

waypoint

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #5 on: November 21, 2008, 10:44:43 pm »
I got a call from the triage nurse at the doctors office today wanting me to schedule an appointment to come in to see Dr. Chang to go over the results. The nurse said that there was someting on the report but said the doctor would discuss when I came in. Now I'm worried. All kinds of senarios are running through my mind. What do I tell my wife and family.  So I called to make an appointment and the earliest date for me to come in to see the doc was Dec 19th... What the hell do I do now. Its almost a freaking month away. So this week I called the triage nurse back to see if there was anything earlier. She calls me back and saying that there is nothing earlier, but the doctor says that its ok and not urgent, thus I can keep the original schedule on Dec 19th.  What bothers me is the report did find something albiet small (probably remenants of the AN) and that there was something small on the right side now. Good grief... The right side wasn't the AN affected side.  I didn't really notice much when I looked at the MRI's.

I distinctly remember Doctor Alp saying after my initial surgery a year ago they got all of it and then he said that their was a potential for a very small piece of it still there as a result of trying to preserve my facilal nerves. He said that it should die off on its own if there's anyting at all. My baseline MRI after the surgery showed nothing. But this one 1 year later must show a little something. Now I have all Thanksgiving and then some to worry and fret over something I'm not even sure about. So while I wait, I figured I would asked some questions. I know I don't want to go through surgery again. If its very small leftovers, then maybe CK or FSR will work better for me this time around. Does anyone know of a recommended AN specialist in Houston doing CK or FSR?  I've already lost my hearing on my left ear, I can't imagine losing the right ear now. 

I know, some of you are saying just wait till I see the doctor...but now I have too much time to ponder.



2.4cm AN removed, Retrosigmoid, 10/1/07
Memorial Hermann, Dr. Chang & Dr. Alp
lost hearing Lt side, paralysis Lt side hopefully temporary
recovered from the balance issues at about 4-6months

Pooter

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #6 on: November 21, 2008, 11:05:02 pm »
I don't know if my Dr does CK or FSR, but I remember him telling me that they might debulk the tumor and they would radiate later.  I took that to mean that my Dr would do it, or perhaps he knows someone that does.  It's Dr Vrabec at Baylor College of Medicine.  Give his office a call and talk to him.  He's very knowledgeable and calming.

I wish you luck in finding answers before 12/19.  I know I couldn't wait that long to talk to SOMEONE about what was found.

Since you have your films, perhaps you could send them to House Ear Institute in LA and get a consultation over the phone about what they see.  Just a thought.

Regards,

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

wendysig

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #7 on: November 22, 2008, 01:11:20 am »
In my opinion, if there is any problem, urgent or not, the doctor should have to come in right away to discuss it, even if it means squeezing you in -- otherwise, nothing should have been said over the phone that would cause you this much stress -- doctors and nurses can be such unfeeling idiots sometimes.    If this is not doable, at the very least he should be williing to talk to you on the phone to alleviate some of your fears -- I would push this if I were you.

Hoping whatever is going on is not as bad as you imagine,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

RosemaryL

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #8 on: November 22, 2008, 09:50:16 am »
Your MRI should have been read by a radiologist, and the radiologist should have written a report.  You could ask the MRI Center for a copy of the report.  If you have copies of the earlier MRIs, you might be able to find some commonalities.  And if something really bad showed up, it should be in the report.

Don't know your age, but by the time folks get to my age, most of us have a few random oddities show up in our MRIs.  And many of those oddities don't mean anything unless there are a lot of them.  I think that if you had a serious problem, the doctor would have found a way to work you in.  So the Dec 19 date could be a good indicator, and frankly even if you had a good report, the doctor should go over it with you.

There used to be a wonderful older lady (80s) living next door to me.  She said worrying was just shoveling smoke.  It's far more productive to shovel snow or leaves (depending on your weather) or enjoy Thanksgiving dinner with family and friends or go shopping for holiday gifts or to watch funny movies. 

Good luck.
Rosemary
1.5 cm right side AN removed by retrosigmoid approach, 12/1/98
Laligam Sekhar and Sanjay Prasad, George Washington Univ Hosp
deaf on right side, facial feeling and function fully recovered

cheza

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Re: Not looking for answers, just wanted to share. 1yr followup MRI
« Reply #9 on: November 23, 2008, 07:11:49 am »

I had a follow up scan just 2 months after my surgery, It showed that I have a small fragment left on my facial nerve, I've been told its nothing to worry about, I'll just have to be looked after for the rest of my life, a small price to pay i think!

But if the docs say there is a little bit of tumour left don't panic, they may say you have a "small enhancing area" thats what I was told in the form of a letter, I paniced big time, didn't know what that ment, but i put a post on here and within hours I'd got loads of replies telling me what it ment and not to worry, so I'm telling you in advance so you don't ARRRRRRRR PANIC PANIC PANIC PANIC PANIC PANIC PAINC PANIC PANIC
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.