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Author Topic: A GREAT BIG THANK YOU!!  (Read 8288 times)

butterflyhugzs

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A GREAT BIG THANK YOU!!
« on: September 07, 2006, 09:02:37 am »
Hi Everyone
I just want to thank everyone so much for all your help and kindness. When I first came across this Forum I felt nervous about posting here as I was under investigation for a AN and did not have a diagnosis, but did not know who else to talk to and you all welcomed me with open arms and gave me the support I so needed at the time. Well my results are in and I was told they are fine, I still have the symptoms and my scan was without contrast and only lasted 7 minutes.
I could ask for another scan with contrast, but as they were looking for a AN, and my symptoms are bad, I think something would have shown up. Plus I was told that in our local very large hospital they only see one person every three years with an AN that is how rare it is. I am going to plug on with the DR’s until they find out if my symptoms are caused by my fibromyalgia or something else. I just wanted to say a great big thank you, You are all so great and I don’t think I would have made it through all the anxiety without this group. God bless you all
Abbie
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pattibobatti

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Re: A GREAT BIG THANK YOU!!
« Reply #1 on: September 07, 2006, 11:20:15 am »
Hi Abby,

Would you still consider having an MRI with contrast?  The contrast material used is absorbed by a tumor which allows the radiologist to see it.  It is the 'contrast' between the tumor and other parts of the brain that helps with the diagnosis. 

With all that I know now, I would definetly have it done!!

Pattibobatti
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17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

   'Are we having fun yet?'

Gennysmom

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Re: A GREAT BIG THANK YOU!!
« Reply #2 on: September 07, 2006, 02:06:46 pm »
Abbie, I would reconsider....I remember reading that someone had a large AN that didn't show up without contrast...you really need contrast to see anything.  Some people with smaller tumors are way more symptomatic than I was at 3+ cm, so I thought I would have a small one when I was waiting for my MRI....boy was I wrong!  How symptomatic you are doesn't indicate how large the tumor is, just how your body reacts to it. 
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3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
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Cheryl R

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Re: A GREAT BIG THANK YOU!!
« Reply #3 on: September 07, 2006, 03:44:31 pm »
You really do need to get the MRI with contrast.    My original one with contrast  had a radiologist report of AN versus neuronitis.     I had a 1.2 cm AN.    It was all in the canal and I had lost all my hearing over 8 months prior.    Location is a biggie.                    This past spring I then had a facial neuroma which barely showed up a year ago and was approx 2 cm this year.    I had surgery again and a nerve graft done as the facial nerve was severed.         
                  Good luck to 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

amymeri

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Re: A GREAT BIG THANK YOU!!
« Reply #4 on: September 07, 2006, 05:16:43 pm »
I just want to chime in and agree that a MRI with contrast is essential and I can't think of a neuroradiologist or neurosurgeon or ENT what would be willing to say "no tumor" for sure without it.  Even tiny tumors can be hidden in that canal and cause huge problems and not show up without that contrast.  I have my MRIs on DVD with and without contrast and it is almost impossible to see without the constrast...and mine is extra-canal and 4cm!!

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Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

Sue

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Re: A GREAT BIG THANK YOU!!
« Reply #5 on: September 07, 2006, 05:30:48 pm »
Hi Abbie,

Well, this is all your decision, but I agree with everyone else that this doesn't seem like a good enough examination to have ruled out an AN completely.  My ENT says he diagnosises about 2 a year. That's one ENT.  How many ENT's in a good sized city?  It's not THAT rare, I don't think.  I'm rather new at all of this myself...I'm certainly not an expert nor have I been aware of acoustic neuroma's until recently - March 2006 is when I first heard the term, as far as I know.   Having said that...a 7 minute MRI?  But if your doctors can give you an explanation for this that makes sense and you are happy with it, then I guess it's okay with me! It's not that any of us WANT you to have an acoustic neuroma, but I guess we'd all be happier if they'd done the contrast.  We're a picky lot!! :)

Take care,

Sue in Vancouver
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Derek

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Re: A GREAT BIG THANK YOU!!
« Reply #6 on: September 08, 2006, 03:05:04 am »
Hi Abbie...

I think it adviseable that you insist on another MRI scan with contrast to be absolutely certain that you do not have an AN. If you are refused for no apparent good reason then I would seriously consider going private albeit it would cost you approx £350. IMO it would be money well spent in order that you could hopefully be 100% certain that you do not have one of these 'nasties' and can move on with your life.

Best Regards

Derek
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Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Pembo

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Re: A GREAT BIG THANK YOU!!
« Reply #7 on: September 08, 2006, 06:03:32 am »
My 4 cm tumor didn't show up on my MRI without contrast. I'd ask for one with contrast. If you're local hospital has only seen a few An's then they really don't know what they are looking for. Best of luck to you.......
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Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Obita

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Re: A GREAT BIG THANK YOU!!
« Reply #8 on: September 08, 2006, 06:24:41 am »
I know things are different in the UK when it comes to medical tests being done but..........if you are not 100% sure you are ok with the no AN results of the MRI without contrast, get one. 

Also, I live in Mpls./St. Paul area of Minnesota, population over 2 million.  There are many large hospitals but only one that does AN surgeries and only one other one in the state (Mayo Clinic) that can do them.  My ENT said he diagnoses about 20 a year..........they are not THAT rare I have found out, lucky me.

Best of luck,  Kathy
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Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

wind6

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Re: A GREAT BIG THANK YOU!!
« Reply #9 on: September 08, 2006, 10:11:18 am »
Chiming in to agree. I had a large tumor with hardly any symptoms!!! I do not think there is a common, typical way that these things are "always" found so better to be safe than sorry.
I currently am having a re-growth that "is" tiny......but the symptoms are kickin my butt...so who can tell without the MRI plus contrast. Good Luck to you Butterfly and please let us know how you are.
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2.5cm x 3.1cm facial nerve neuroma
removed 8-2-2005(retrosigmoid)
St.Johns Hospital-Springfield,Illinois
Dr.Michael McIlhany and Dr.Carol Bauer
Wait n' watch mode for 8 years.
Gamma Knife at Northwestern Memorial Hospital. Chicago,IL. Dr. James P. Chandler. July 10, 2013.

Captain Deb

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Re: A GREAT BIG THANK YOU!!
« Reply #10 on: September 08, 2006, 11:19:18 am »
I believe I see a pattern here!! Although we are not doctors, here, we have had experience with ANs and the consensus of opinion here is that they are often undetected in MRI's without contras and wait--that's not merely an opinion , it seems to be the result of the experience of several of us in our diagnosis. And a 7 mionute MRI?  Mine was at least 1/2 hr!  Are you sure you even had an MRI and not a CT scan?--quite a different thing entirely.
Capt Deb
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"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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butterflyhugzs

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Re: A GREAT BIG THANK YOU!!
« Reply #11 on: September 08, 2006, 12:24:21 pm »
Thank you everyone for your input, you have really got me thinking now!  ???What to do???? ??? Has anyone been misdiagnosed without contrast?
I am thinking about going back to the Dr’s maybe even printing off this forum and asking his opinion.
Thanks again Abbie
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Windsong

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Re: A GREAT BIG THANK YOU!!
« Reply #12 on: September 08, 2006, 09:02:51 pm »
short answer for me is yes , I was.....

windsong
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butterflyhugzs

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Re: A GREAT BIG THANK YOU!!
« Reply #13 on: September 09, 2006, 07:40:07 am »
Please can you give me more information it would be really helpful if you could?

Quote from: Windsong on September 08, 2006, 09:02:51 pm
short answer for me is yes , I was.....

windsong
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butterflyhugzs

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Re: A GREAT BIG THANK YOU!!
« Reply #14 on: September 09, 2006, 07:44:42 am »
Hi Deb, I was definatly an MRI scan, they were only scanning the area they needed, I think they do that to save money.It was in a portable scanning machine outside the hospital. I think 7 mins is a very short time and wondered if it would be enought time to find what they were looking for, but i just have to trust them.
Thanks again for advice
Abbie
Quote from: Captain Deb on September 08, 2006, 11:19:18 am
I believe I see a pattern here!! Although we are not doctors, here, we have had experience with ANs and the consensus of opinion here is that they are often undetected in MRI's without contras and wait--that's not merely an opinion , it seems to be the result of the experience of several of us in our diagnosis. And a 7 mionute MRI?  Mine was at least 1/2 hr!  Are you sure you even had an MRI and not a CT scan?--quite a different thing entirely.
Capt Deb
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