Author Topic: Not diagnosed, but thanks in advance!  (Read 21280 times)

CHD63

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Re: Not diagnosed, but thanks in advance!
« Reply #15 on: March 10, 2010, 12:40:38 pm »
Sybil .....

Adrienne has described trigeminal neuralgia perfectly.  14 years before my AN was diagnosed I had successful surgery (via retrosigmoid approach) for decompression of the 5th (trigeminal) cranial nerve at the brainstem on my right side.  Years later my AN was on the left side and blissfully I did not have trigeminal symptoms with my AN.  I suffered with the trigeminal neuralgia for over six months (many people suffer much longer before accurate diagnosis and definitive treatment) with sharp, stabbing pains.  Just prior to surgery I could not even stand to be in air conditioning because it would trigger an episode (I slept with a scarf around my head for months).  Diagnosis was made basically through my symptoms because the enlarged artery and veins at the brainstem, which were causing the symptoms, did not show on an MRI.  Fortunately my PCP and neurologist all took me seriously and I received treatment fairly quickly.

What you initially were describing is more like trigeminal nerve irritation, possibly caused by pressure from a neuroma.  I had no hearing issues with the trigeminal neuralgia.

Wishing you well on the MRI tomorrow.  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

leapyrtwins

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Re: Not diagnosed, but thanks in advance!
« Reply #16 on: March 10, 2010, 07:02:13 pm »
Sybil -

good luck with tomorrow's MRI.

Hope it's "clean".

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sybil

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Re: Not diagnosed, but thanks in advance!
« Reply #17 on: March 12, 2010, 03:57:14 pm »
Well, had the MRI with and without contrast. The radiology tech said that it would take two to three "working" days to read the results and send to my to my doctor. She also said that she didn't notice anything out of the ordinary. So, I guess I just wait for the final word.

Strangely, I have mixed feelings. A clear MRI would be good news, but at the same time, I'll still have no answers. What next?

Thank you all so much for your support and sharing your knowledge with me. This is a swell group of people!  ;D

Pooter

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Re: Not diagnosed, but thanks in advance!
« Reply #18 on: March 12, 2010, 04:39:59 pm »
Call them up and see if you can get a CD of the MRI and the Radiologist's report...  I think my location was able to give me the CD and report the next day.  That way you can see/read for yourself (even if you don't understand it all)..

Here's hoping you get some answers..

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/

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Jim Scott

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Re: Not diagnosed, but thanks in advance!
« Reply #19 on: March 12, 2010, 04:44:49 pm »
Sybil ~

To add to Brian's suggestion:
There are online medical dictionaries available (free) that you can use to decipher some of the medical argot in the MRI report.  Here's a link to just one of them http://www.online-medical-dictionary.org/.  Good luck!

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.

sybil

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Re: Not diagnosed, but thanks in advance!
« Reply #20 on: March 16, 2010, 08:07:22 pm »
Hello, everyone! Well, Tuesday has come and gone and still no word from my doctor on MRI results.  Is no news good news? 

How long do you think I should wait before I call him?

As always, thanks. You guys are the best!

Oh, yeah, new symtoms. The last week, it feels like it takes the bad ear side of my face longer to wake up than the good side. It's just a feeling. I looked in the mirror and both sides look the same. Sound crazy?
Also, I feel like someone has poured warm/hot liquid over my bad ear and that side of my face. It's not constant, it comes and goes. Any else?

leapyrtwins

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Re: Not diagnosed, but thanks in advance!
« Reply #21 on: March 16, 2010, 08:41:40 pm »
Sybil -

In my experience docs call PDQ when there is an "issue" with an MRI.

But you never know.

If you don't hear from your doc by Thursday morning, I'd call him.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

moe

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Re: Not diagnosed, but thanks in advance!
« Reply #22 on: March 16, 2010, 09:18:36 pm »
Yep, call on Monday.
Actually the radiology tech did a boo boo. They should NOT say anything.
Wow, think of some of the things they see......I know it's nerve wracking waiting. Heck call tomorrow!
Maureen
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

sybil

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Re: Not diagnosed, but thanks in advance!
« Reply #23 on: March 19, 2010, 12:56:40 pm »
Well, I still have no news. I am so frustrated!! >:( I have called my doctor's office, no return call.  The person answering said, "Hmm, it's been a week. We should have gotten that back by now. Let me look and the doctor will call you back."


I have called the hospital, first to make sure that the MRI was even sent to my doctor, and second to request a copy. All I get from the hospital is voice mail. I have left messages, and they don't call me back!

What in the world?!  I'm not sure I can handle another weekend of not knowing! The past week I have been waking up in the middle of the night and early in the morning with terrible headaches on my 'bad' side. I'm sure the stress of not knowing isn't helping!

Thanks for letting me vent.
Syb

Jim Scott

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Re: Not diagnosed, but thanks in advance!
« Reply #24 on: March 19, 2010, 02:53:22 pm »
Sybil ~

Venting is not only allowed here, in your case, it's encouraged!

In my opinion, your doctor is being quite insensitive.  This waiting is unnecessarily stressful.  I would consider calling his office every single day until you receive a proper response.  If the receptionist complains, tell her that this is critically important and you only need a few minutes of the doctor's oh-so valuable time.  After all, you are his patient and his giving you the results of your MRI scan is hardly a favor.  Meanwhile, know that we're all totally sympathetic and many of us will be praying for you.   

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.

sybil

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Re: Not diagnosed, but thanks in advance!
« Reply #25 on: March 19, 2010, 07:19:21 pm »
Looks like I will have to find another club to join.  Doctor called and said that my MRI looked fine to him. He said to find a neurologist and have my hearing checked again in three months. He then wanted to know if the pressure in my ear was gone. ?  No! It's been there for seven years!

Anyway, I guess I'm on my own now.  I certainly don't feel better, actually I feel worse. I am getting ready to start a new career, which means a new positive chapter in my life. Can't I do it and feel good?  No one wants to have a brain tumor, but dam*, I would like to know what is going on and not feel like I'm nuts.
 
One final question for this bunch;  It appears I have some neurology symptoms and obvious ear problems, any idea on a doctor I should look for? Neurologist or otoneurologist or neurotologist? I don't even know the differences in all the specialties. I am lost and confused and discouraged.

Thanks again to all of you. I wish you all peace, love, and good health. Please take care.
Syb

ombrerose4

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Re: Not diagnosed, but thanks in advance!
« Reply #26 on: March 19, 2010, 08:51:39 pm »
How stressful this must be for you! Was the doctor saying there was nothing on the mri? You definitely need to see someone else. The first doc I saw was a neurotologist.Then a neurosurgeon. You need to get some answers. I wish you luck! Keep us posted.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

leapyrtwins

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Re: Not diagnosed, but thanks in advance!
« Reply #27 on: March 20, 2010, 12:00:30 am »
Sybil -

congratulations on NOT have an Acoustic Neuroma.

I'm sorry to hear that your issues are still undiagnosed though.  This must be very frustrating.

If it were me, I'd consult with a neurotologist.  Here's a link that tells you what an otologist/neurotologist is http://www.umm.edu/otolaryngology/otolo_neuro.htm

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Doodlette

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Re: Not diagnosed, but thanks in advance!
« Reply #28 on: March 21, 2010, 05:10:47 pm »
Hi everybody,

I thought I'd piggyback on this thread, because I'm not diagnosed either. I *am* scheduled for an MRI mid week, and starting to panic a little bit.

Basically, I had hearing loss, my GP sent me to an audiologist at the hospital, and she said I need a hearing aid (one ear only), but first needed to see an ENT for a checkup. I had that checkup last week, and the doctor was very nice and asked a ton of questions. I think most of it was nice chit chat, but now I'm replaying things in my head and wondering if he was asking for symptoms.

So he said (and showed me a model of an ear and explained it) I needed to have an MRI to rule out this ear tumor thing that happens sometimes. I don't think he used the term acoustic neuroma, just ear tumor. LOL. And then I'm scheduled to see him in two weeks for the results. If there's no tumor, I go for a hearing aid.

At first, I dismissed the idea of an ear tumor and didn't worry a thing about it. Then I decided I was curious about it and googled, and ended up reading all about this. So I've worked myself into a bit of a state, and am wondering a few things...

First, do you think it's standard operating procedure to send a new patient who needs a hearing aid for an MRI? That seems kind of expensive. Do they do that for everyone, or is there something he wasn't telling me? I'm 50, female, in otherwise okay health.

But let's review the symptoms, which now are starting to form into a jello in my head (like yikes!):

--hearing loss in one ear, pretty much deaf in the higher frequencies. This has been going on for I don't know, a couple of years maybe. For the longest time I thought people were mumbling and I was just annoyed. Then I started having difficulty understanding *some* sentences on TV. No matter how loud I turn it I can't get certain things. I can hear it (I have a good ear), but it's garbled. So I occasionally turn on closed captioning and read it. I have DVR, and at first I tried to avoid closed captioning because I was afraid I would get a lazy ear and now I have. Then I started being unable to understand a thing when I'm in the back seat of a car. Everybody up front...mumbling. LOL.

It took me awhile to "get" that it's me, not the whole world with marbles in their mouths. Oops. That's my big symptom. But now I'm thinking of others that I have basically been poo poo'ing.

--dizziness...once in awhile I just get this attack of dizzy where the room feels like it's spinning. It's over in 30 seconds and I'm fine. And it maybe happens once a month, something like that. Not regularly.

--balance difficulties...Um, I'm a clutz and always falling over stuff. A month or so ago, my doctor gave me some trazadone for insomnia (I had taken it years ago and it helped and no side effects). It about killed me, and I think my doctor thought I was being dramatic. When I would walk down the hall, I was like a pinball, crash into the right wall, then that would send me bouncing and off to the left wall and back and forth, just crashing into the walls. It wasn't funny but yet it was because it was just so extreme and ridiculous. I would bend over to tie a shoe/fill the cat bowl/whatever and almost go into a somersault. I just would lose my head and start to fall over, but luckily caught myself with my hands before any damage. And until I got the drug out of my system, I stopped bending over.

My doctor couldn't understand how I could have such an extreme reaction to a drug many use, and esp. since I'd used it before without incident. Now it's got me wondering...

But I went off the trazadone and that got better. However, I still do stumble and kind of trip over my own feet sometimes. I keep thinking that the way I'm going to die is fall and break my neck and they'll find my cats eating me or something. Seriously, it's enough of a concern that I'm a little worried about taking a tumble and breaking something other than a vase.

--for the last few months, I've been getting an earache. It's a minor earache and it comes and goes (mostly goes), but it was enough that when I was in my GP's that day, I said do I have an ear infection? And she looked and said my ear was fine. When it hurts, if I tug on my earlobe, that increases the pain. I've never had an ear infection, even in childhood. So I don't know what that discomfort is about.

--here's the one that's got me scared - over the last several months, maybe a year, I've had some incidents where this side of my face just kind of goes numb. Mostly my cheek area. It's like it would itch, but then I'd kind of scratch it and couldn't feel myself scratching. When this has happened, it was creepy beyond all creep, and I wondered what the heck? You know that horrible feeling when your hand goes to sleep from sitting on it, and it takes a few minutes to wake up, and it's like bugs are crawling? It was kind of like that, but much less intense. No bugs crawling, just slight itch and couldn't scratch the itch. And a few minutes later, it was fine. Given what I've read about facial nerve involvement, you can probably understand why all of a sudden I'm thinking back to the numb face thing, and going OMG, was that *something* instead of nothing?

I think that's about it for my "symptoms."  I know, I know, wait for the MRI, and I really have no choice. But I'm one of those people who likes to worry any chance I get. ::sigh::

I have no idea if this contrast is to be used; the order just says inner auditory canal or something like that. I'm hoping they'll send me a copy of my MRIs and report so I can know the answer without having to wait for my dr appointment.

Thanks for listening, I know I'm a jabber.

Doodlette

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Re: Not diagnosed, but thanks in advance!
« Reply #29 on: March 21, 2010, 05:15:10 pm »
Oh I forgot to add I do have ringing in my ears. I don't know if it's one ear or both, and oddly, it doesn't really bother me. It comes and goes, and a lot of the time, it's there in the background, but I don't notice it unless I think of it. Then I hear it, but soon I tune it back out. I don't know how long I've had that, maybe a year or so. or maybe forever and I never noticed it.