Author Topic: I know this is gross.....but I need an opinion...  (Read 7820 times)

Kaybo

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Re: I know this is gross.....but I need an opinion...
« Reply #30 on: April 13, 2009, 06:40:09 am »
oh Melissa!
I hope that this situation can get resolved soon WITHOUT surgery!  Let us know what you find out!  I will send up some prayers for you!


K :D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

jazzfunkanne

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Re: I know this is gross.....but I need an opinion...
« Reply #31 on: April 13, 2009, 07:56:33 am »
hi melissa, did you get my PM, i go on wed to see about my sinus, i have had polys removed twice in the past, i used to get a nasel spray to shrink them in the past , did they offer this too you?
over 4.5cm AN removed dec 06

leapyrtwins

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Re: I know this is gross.....but I need an opinion...
« Reply #32 on: April 13, 2009, 06:14:06 pm »
Ah, Melissa -  I wish things were better.

But remember there is a light at the end of the tunnel and you'll get there in time.

Good luck with the CT and the ENT.  I'll be thinking of you and hoping for the best possible outcome.

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

LADavid

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Re: I know this is gross.....but I need an opinion...
« Reply #33 on: April 13, 2009, 11:08:26 pm »
Melissa!!!!!  I just realized that the "this is gross" thread is still around and that you are still dealing with issues.  I am so sorry to hear that.  I chuckled at your first post -- I'm not anymore.  I hope this soon improves.  I'm praying for you. I think you're coming up on your first year anniversary.  May the second year be the best.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Jim Scott

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Re: I know this is gross.....but I need an opinion...
« Reply #34 on: April 14, 2009, 02:57:07 pm »
Melissa ~

I'm so sorry to learn that you're still struggling with the same issues as well as others - and getting discouraged from all of it.  Who wouldn't?  Many people are thinking of and praying for you to have these issues resolved.  Your spirit is resilient and will get you through these days.  May there be better ones ahead.  :)

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.

Melissa778

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Re: I know this is gross.....but I need an opinion...
« Reply #35 on: April 17, 2009, 12:54:59 pm »
Ok, so I had my CT scan today......of course no results yet and I don't see the doc untilt he 29th.....but I found this alarming.....

The CT tech after my scan said "are you taking medication for your infection" I of course explained my many rounds of antibiotics and that yes, I was still taking meds....and her response was"you'd never know you were taking medication".....So I guess my assumption is that my scan does not look good. :(  I suppose I shouldn't think the worst yet......I just really do not want another surgery.  And from what I hear sinus surgery really isn't pleasant.....not that any surgery is pleasant, but you get what I mean :)  Maybe that's not what the tech meant at all.....but I wish she had never said anything I guess.... :)

Still blowing my stinky nose.....

Melissa

1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

leapyrtwins

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Re: I know this is gross.....but I need an opinion...
« Reply #36 on: April 17, 2009, 05:31:49 pm »
Melissa, I hate to say it, but I don't think the news is going to be good either based on the technician's comments.

I thought all medical technicians were taught not to give away the results of tests like ultrasounds, MRIs, CT scans, etc. since that is the doctor's job.

But on the bright side, maybe the technician was totally incorrect - so maybe the doc will have good news on the 29th.

Whatever the news turns out to be you'll get through it.  Heck, you've had AN surgery - and GK - you're definitely strong.

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

suboo73

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Re: I know this is gross.....but I need an opinion...
« Reply #37 on: April 17, 2009, 06:36:32 pm »
Melissa,
Hi!  I am so sorry you are feeling poorly with this continuing sinus issue... :(
Hope you get your CT results soon.  Me, i would be on the phone tomorrow, asking for the results asap.

I had a similar experience with a technician - i realized in my case that the pictures were shocking and the technician was probably as upset as we were.

So please - stay strong, you can fight this, just like Jan said!
My thoughts and prayers are with you.
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

Kaybo

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Re: I know this is gross.....but I need an opinion...
« Reply #38 on: April 18, 2009, 09:28:37 am »
Melissa~
Sorry that you are having to deal with all this and now a wait on top of it all...keep us posted....& we will keep you in our thoughts and prayers!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Alice Rapunzel

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Re: I know this is gross.....but I need an opinion...
« Reply #39 on: April 18, 2009, 01:14:24 pm »
Melissa,First, I've had the CT guided endoscopic sinus surgery and was absolutely astounded at the ease of recovery.  Mine was totally enclosed in all but the rear ethmoid and sphenoid sinuses and so dense in the maxillary sinus there was the possibilityaof a tumor. They had to break a bone under my eye to "chunk it out." No tumor in the sinus. I had no bruising -- none, zero, zip. Very little pain -- eensy, teensy -- barely a blip. The grossest part for me was doing the nasal lavage to keep the gunk cleared for a few weeks (?) but it wasn't any big deal after the first few times, other than the gross factor. Oh, bless the heart of my sinus surgeon, I was freaked some (we had to clear the sinus problem before the facial tumor surgery which they scheduled for about six weeks later) so even though it an outpatient procedure, I stayed overnight at the hospital on one of those 23 hour deals and was one of the first to enjoy (truly!) the hospital food as they had just recently changed providers.So sorry you are going through this. I am stunned at the amount of time you've dealt with it. My facial nerve tumor was actually discovered after trying to clear a chronic sinus infection. Because any surgery carries risks (as we all know), they tend to keep trying to clear it before even suggesting surgery.I'm not sure if it a blessing or a curse for you because I was absolutely clueless. I'd gone for an MRI due to my psychologist referring me to a neurologist after my first visit. I'd gone to see him to discuss strengths and weaknesses for a career change. He put together my 10 year hearing loss, 50 year facial paralysis and about 3 years of stumbling like a drunken ballerina.The radiologist, as seems to be his customary practice, checked to see if I had any other radiographs in the system to compare. He pulled up a 3 year old CT scan (from when my PC wanted to rule out stroke after yet another bout of "Bell's Palsy") and noted that all of the sinuses that were blocked on the old CT were still blocked.After trying to clear up the sinus infection, we did another CT scan specific for the sinuses, and that's when the facial nerve tumor showed up as a mass in my middle ear.My sinuses have remained clear the past 20 months. They also took care of my deviated septum.I was so freaked out by the sinuses, and on its heels, the facial nerve tumor, that I did pretty extensive research and also asked the surgeon to see if there is a connection between the cranial nerves. To the best of my knowledge and his information, there is no connection.The only "gooey" problem I've had (was/is) the "nervous dog, drippy nose" that occurs in copious quantities whenever I am active or the weather is warm. This happened AFTER the facial nerve resection NOT the sinuses. I dug out the information on this one after a hint of info from an ER doctor regarding how microscopically small and twined together so many of these cranial nerves are. So while I don't have sinus problems, I do have "Pseudo-Cerebral Spinal Fluid Rhinorrhea."And for such a big fancy name, and the oopy-goopiness to it, it is easily managed with a prescription for Atrovent nasal spray -- it's available as a generic (yay!).Sorry to have prattled so, but I'm new to this list and guess I'm having a case of newby-itis.Melissa, truly, after I told a good friend of mine in another state about how great the sinus surgery was, she went ahead and had hers done (she'd been fighting with problems for years) and she told me her general health is better since she had them rotor rootered. <g>Anyway, I'll head back to lurk. Best.Claudia
Claudia - aka Alice Rapunzel for "wonky head" & spatial "Alice Through the Looking Glass" cognitive issues + preference for cool, dark and quiet rooms (variation on Rapunzel's Tower)
Facial Paralysis since age 2 
Facial Nerve Neurofibroma resection -brainstem/IAC/middle ear  w/auricular graft 2007

Alice Rapunzel

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Re: I know this is gross.....but I need an opinion...
« Reply #40 on: April 18, 2009, 01:40:48 pm »
Melissa,

As far as the CT tech is concerned, they should blow it out the...mselves!!!

When I had the CT done to see if my sinuses had cleared, I asked the CT tech and of course she couldn't tell me anything. But having seen the actual scan (I have all of my CTs and MRIs on CD) I can tell you for a fact that if you look at the side of your head where you know it is clear -- and look at the side your infection is on, all you would be able to see is the light/dark difference.

Until the radiologist actually compares your old CT with the new one, even they wouldn't be able to say if the infection is clearing or had remained unchanged.

I used to be a very laid back person until this head crud/tumor stuff. I started going to the radiology records a few days after the scans and picking up a copy of the report as the stress of waiting for the information was worse (for me) than getting information I might not clearly understand. But, by skippy, burning up the internet for information Until that next appointment was (again, for me) a much preferred distraction that sitting and going out of my mind with anxiety bordering on panic attacks waiting for news.

Again, my experience (and that of my friend in another state) found the surgery to be a (relative) piece of cake. And that's not even factoring in the facial nerve resection (neurofibroma, brain stem to parotid).

Dr. Han at Eastern Virginia Medical School (EVMS) did the computer aided endoscopic (up your nose) sinus surgery.

Fix yourself a nice cup of tea, settle into the couch with some soothing music, and imagine yourself kicking that inconsiderate, unprofessional tech from here to the hereafter -- that should bring a smile back to your face!

Hugs,
Claudia
Claudia - aka Alice Rapunzel for "wonky head" & spatial "Alice Through the Looking Glass" cognitive issues + preference for cool, dark and quiet rooms (variation on Rapunzel's Tower)
Facial Paralysis since age 2 
Facial Nerve Neurofibroma resection -brainstem/IAC/middle ear  w/auricular graft 2007