Author Topic: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms  (Read 9096 times)

Islander

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Hi there,

  My Tinnitus in both ears started about a week ago, It's generally low level that can usually be ignored. Occasionally it will flare up for different reasons. Being a big believer in catching things early I did some research online and decided to see an ENT. He sent me to an audiologist that tested my ears. Both ears hear in the normal range. My left ear showed a slight drop in hearing response compared to my right ear. My left ear was also slightly abnormal when it came to the middle ear test. So I did my follow up with the ENT today and he reccomended I get an MRI to rule out AN. I have no other obvious symptoms besides my Tinnitus. I was wondering what symptoms you all experienced if any, before getting diagnosis? Also, specifically if you thought you heard Tinnitus in both ears beforehand?

   I was looking through the postings and just wanted to say that you guys all seem like a wonderful group. If nothing else this may help prepare me for the worst. Thanks for your time!


Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #1 on: June 19, 2009, 11:33:25 am »
Oh I did forget to mention that it seems like I've been popping my ears more often, from "airplane ears"...

CHD63

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #2 on: June 19, 2009, 11:34:39 am »
Greetings, Islander!

Let's just say, I certainly hope your MRI does not reveal an AN, but if it does we are here to be of any support we can be.

Each of us have had different pre-diagnoses experiences so it is difficult to know if you have an AN until you see the results of your MRI.  Be sure it is ordered with contrast, as that is the most reliable way to determine an AN.

In my case, I had dis-orientation (balance) issues and 20% sudden hearing loss (via an audiogram) and that was all ..... virtually no tinnitus until post-surgery.  Others have had headaches, facial numbness, etc.

Be sure to let us know what you find out.

Clarice
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

ppearl214

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #3 on: June 19, 2009, 11:35:16 am »
Hi Islander and welcome. 

Oh, I wish I had a dime for each time I've noted to folks not to "self diagnose" as it can be so dangerous... very stressful...  and most of all... can be incorrect.

There are so many different reasons why hearing loss and tinnitus can occur... my mom perferated her eardrum as a child.. hence, her tinnitus and hearing loss...yet, as you found us... AN's can do it as well.

As you are having an MRI on Tuesday to rule out any AN or such, make sure they use "contrast" dye during the MRI since an AN will "light up" (show up) much clearer due to the constrast.

My hope is that you don't have an AN... and if you do, we are here. Let's hope your MRI shows "nothing" (take that in a good way) and just hang  in there until the test is done.

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

Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #4 on: June 19, 2009, 11:57:13 am »
Thank you both for your quick replies! I am trying to remain as calm as possible given the circumstances. It's nice to see that life does go on.

I did indicate "contrast" with the MRI for more accurate results, Good to know that is the better way to go. I will post back to let you know what I find out. Hope you both have a good Friday and a wonderful weekend!

mandy721

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #5 on: June 19, 2009, 01:24:26 pm »
Hello,

Good for you in getting this checked out.  My husband has been having symptoms for the past 6+ years - partial numbness of the lip and tongue.  That was it  He thought it was more of an annoyance than anything else and it never raised an alarm when he mentioned the symptoms to the doctor or dentist.   He had also  noticed a low grade hearing loss, but thought that was the result of lots of loud music and age.  He  finally had his hearing tested last month.  That started the ball rolling and he was diagnosed with a large AN earlier this month. 

 I also hope that the MRI results are routine.

Miranda
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #6 on: June 19, 2009, 02:37:16 pm »
Thanks for the well wishes Miranda! I'm sorry to hear about your husband, unfortunately fear of the unknown keeps people from doing the right thing sometimes and I try to do my best to avoid that. From what I can tell so far this is a great place for information and support! I pray things go as well as possible for your husband!

Jeepers

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #7 on: June 19, 2009, 04:35:39 pm »
Hello Islander,

Welcome! You sound frazzled and I just want to tell you that is very common when you first start testing and/or receive a diagnosis.

I started having ringing in my ears 6 yrs ago and once in a while a little balance problem only when I got out of bed in the morning. I actually couldn't tell if the ringing was in one or both ears. It was probably a good month or so before I mentioned it to my doc during a visit for something else. He gave me an antiobiotic (I think) and when the ringing persisted, we scheduled an appt with an ENT. From there took a hearing test that showed a pattern of minor hearing loss consistent with an AN. I then proceeded to the MRI and rec'd my diagnosis. I, too, freaked - of course reading everything I could online and unfortunately many of the sites I viisted back then were telling the worse-case scenarios which was even scarier. This place is a Godsend for both information and positive support, so I'm glad you landed here!

Once I had my diagnosis - a small right side AN - I went and talked in depth to two different neurotologists. I also knew radiation was an option, but frankly, because of the pros and cons of ANY treatment, I decided (and both surgeons concurred) that I would just wait-and-see. ANs are typically slow growing, so, I thought, why jump into a procedure sooner than necessary? The panic I felt soon subsided and I became very comfortable with yearly MRIs and wait and see.

It was only this year - 6 yrs later - that my MRI showed a bit of growth. Along with that were balance issues that I had been noticing over the past couple of months. The docs now said I should probably consider making a decision - surg or radiation. Surgery is my choice because I was advised I would probably have a better chance at rehabbing my balance with surg than with radiation (and this was based on MY situation and symptoms ... not all folks with a certain size tumor have the same symptoms). I'm also doing traditional surgery. I recall reading about endoscopic 6 yrs back so I really can't comment about its success rate vs traditional. You might want to visit the House Clinic (in Calif) website, as they are definitely the "premier" go-to place for ANs. Many folks travel to be treated there, but many just use their resources as a guide to educating themselves.

I hope your MRI is negative for AN, but while I know how worried one can get during the early stages of diagnosis, I can assure you the anxiety will calm down (oh it comes and goes, of course, but to me the worst was right at the beginning when I first got the news).

Your ear-popping reminds me of one strange "noise" I hear in my ear every so often .... it sounds like a big metal spring has sprung ... like BOING inside my head. I've often wondered if anyone else heard anything similar.

Good luck to you, Islander. Hopefully, your MRI will come up clean as a whistle!

Jeepers



Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #8 on: June 19, 2009, 04:51:33 pm »
Jeepers,

Thanks a bunch for the info. I really am frazzled today, I've had the day off work and i've been doing research online regarding Tinnitus and Acoustic Neuromas. From the little reading I've done, it seems like the endoscopic procedure at SBI in California would be the way to go if I did end up in that worst case scenario.

I'm not sure what type of audiogram showing a hearing loss between the ears is typical for AN. Looking at my data I didn't think that the difference between the two ears what that significant, but apparently my ENT thought otherwise... ditto for my middle ear exam data. I have noticed a touch of vertigo if I lean my head back and pop it up.. not sure if that is normal or not.

Have you given any thought to the type of procedure you would like to proceed with? Good luck with everything and keep us posted on how things go! :)

btw. what is your tinnitus like? does it vary during the day? do certain foods make it worse? Thanks again for your time!

Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #9 on: June 19, 2009, 04:55:08 pm »
Now that you mention it I really can't tell if the ringing is coming from one ear or another. It almost seems like at different times one ear may be slightly louder than the other and vice versa. Of course when I plug both ears it sounds like it's coming from the center of my head...

Cheryl R

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #10 on: June 19, 2009, 05:28:40 pm »
We hope you get good news from your MRI as it is a scary thought of what if it is a tumor.        The forum may sound like one always ends up with  terrible problems.            One does not always realize that many who have surgery are here for a time and recover and go back to the normal life.     There may be some adjustments for some but the loss of hearing on one side is can be adjusted too for most people easier than they think it would be.            I had pretty much lost mine and didn't realize it.     
There are several of us here in the midwest who have went to Univ of Iowa for surgery with good results.           
Getting the  info you need will come in time and we are able to help.                   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

Jeepers

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #11 on: June 19, 2009, 06:14:42 pm »
I only notice the ringing gets worse when I'm very near a loud noise ... blowing my hair dry, mowing the lawn ... things like that.

I'm going with the translab approach and am on the calendar for July 9. I chose translab because it offers the best exposure to the tumor and no brain retraction. While I will definintely lose the hearing in that ear, that's ok with me, cause my hearing is only at 16% at this point anyway.

It's good you're doing your homework, but don't feel the need (nor is it possible) to make any decisions at this point. Only when the tumors are extremely large is there urgency to treat. If this does turn out to be an AN, you need to talk to at least a couple of neurotologists to let everything sink in and be sure of what you are hearing from them. Take someone with you if you can - as you may not remember all that's being told.

Try to calm down. It'll be ok. The different options and approaches will be explained to you - each one having it's pros and cons.

Cheryl's right ... "Getting the info you need will come in time and we are able to help."

 :)
Diagnosed 2003-right side-1cm AN
Wait and watch for 6 yrs; 2009 showed growth w/balance issues
Translab 7/9/09 - Drs. Battista/Kazan (Hinsdale IL); SSD
Recovering well!

Islander

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #12 on: June 19, 2009, 06:29:27 pm »
Jeepers and Cheryl,

This forum and it's members have really been a godsend to me today. I appreciate all your info and feedback. I will post and let you guys know how it turns out :)

suboo73

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #13 on: June 21, 2009, 05:48:48 am »
Hi Islander! 

I will be thinking of you on Tuesday and your MRI. 
I hope you find out was is going on and pray it is not an AN.
But, if it is, we are here for you! 
And, since ANs are slow growing, you have lots of time to research treatment options.

Please post your update on the results.  Another great thing to do is to ask for a copy of the MRI - report and pictures.
The last one i had, they made a copy of the pictures on a CD right after i was finished, then sent me the written report after that.
This will be good to have if you decide to consult with other docs.

Sincerely,
Sue



suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Kathy M

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Re: MRI coming up Tuesday... Trying to gage your pre diagnosis symptoms
« Reply #14 on: June 21, 2009, 09:35:44 am »
Hi Islander!

I'm glad to see that you are taking such a proactive approach on your health.  My symptoms were ignored by my family doctors for at least 6 - 7 years and I was far too complacent for my own good.   Looking back, I should have insisted that further testing be done - if I had been more "in control" of my own destiny, I think my AN would have been detected much earlier.  BUT...everything turned out ok in the end and I was very well taken care of by the best surgeons, family, and friends.

I had only a very slight hearing loss prior to surgery.  My noticeable and bothersome symptoms were around balance.  Very unsteady gait, difficulty navigating at night, and those kinds of things. 

My only caution to you is that there is a line you can cross with researching too much.  If your MRI is scheduled, I might suggest that you rest up a bit on the research and see what you find out.  Then let the results of that guide your path to a more targeted research.  I ended up reading way too much and spent much needless energy worrying about things that were not necessary.  BUT...believe me...I understand the need to find every shred of information possible!!!

Good luck to you and I sure hope you find that you don't' have an AN at all!!!  If so, though, there is much support here and life is good!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!