ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: thornapple on January 02, 2008, 09:50:21 pm
-
;D You know the wait thing. It will be two to three weeks until they read it, write the report and get it to my doctor.
My AN is supposedly inside the cochlea. Very tiny, lots of symptoms.
There is a new specialist across the state who is in my HMO, and he trained at House; I will be able to drag this new MRI and my test results to him, and see what he thinks.
The symptoms are getting pretty bad. I am having pain in addition to all the noise, balance issues and hearing loss.
Well, we'll see.
-
HUGS to you... The waiting is just the worst! >:( I hope that you get the answers that will lead you to the correct corse of action for you......hang in there.
-
OMG - where are you that it takes that long to get results? I do medical transcription and have done radiology - there is usually a 24-hour turn-a-round. An x-boss of mine is a neuroradiologist and when we have our head MRI's done (hubby and I both have brain tumors), we have a message with the results waiting on our answering machine before we get home from having the test. I guess we are lucky in having "connections" but really two to three weeks is not fair.
-
Try to call the Doctor and explain how this is affecting you and get your results now. If you are in pain that is just unreasonable. I'm assuming this is an ENT, so if you have to call your primary Dr to see if you can get the results from him/her. Good luck and let us know how this turns out. 16
-
Nobody here is in any hurry because mine is INSIDE the cochlea and nobody intends to do anything about it. I have an HMO that is really stubborn about insisting I see their "experts" (no AN experts in their entire roster of "experts"), and it wasn't until just a few weeks ago that they acquired a whole new glom of medical practice on the other side of the state, where there is a guy who studied at House. Thank GOD. So maybe he will be helpful, or at least give me empathy for my suffering, which is more than I get from the people I have seen so far.
I was told if they did GK on it, it would murder my vestibular nerves anyway.
Prednisone makes it better, but I can't stay on it forever. But as soon as I have the DVD in my hot little hands, I can go see him.
I guess I said most of this already; I have been in a major depression the last year because it seems nobody is going to do anything, not even help me with this pain and inflammation.
It reminds me of a friend of mine, who was told she was dying of breast cancer, and they sent her home and she almost sat at home and died with nobody from her doctor's office lifting a finger. She was too ill to do anything about it, a single mom with three young kids. One of the kids called a friend and asked for help...the friend ran right over and called hospice in. but the doctors did nothing at all.
And neither are mine. They send me home with a shrug and some steroids to snuff up my nose, like that is going to do squat. and squat it does. and of course I am going progressively deafer as this goes on, but the hearing aides I got irritate my ear. It's really inflamed in there...I have a very unhappy ear.
-
Seriously...it's time to stir the pot! Demand results, change Doctors/health plans, and fire anyone not reacting!! This is your life and your health! When my son was diagnosed with a lifelong illness and the Doc was unsympathetic, uncaring and basically stuck him on steroids, I fired her and went searching for the best... Knock on wood, his disease is in remission and for all intensive purposes appears to have disappeared! Have the will and there is a way.
I am thinking about you and praying for positive results...don't go to the dungeon of depression...take control, and get what you deserve - good healthcare.
This is a strong network of people - lean on all of us...we'll help you through. I am going through an evaluation of a second procedure - my CK didn't work (I am one of the very few). My AN is growing and now I'm faced with determining a second strategy - unless I find out some other option, I am headed to surgery. The people on this site are great providers of information, insight and support... I'm not sure how I would get through this without their wisdom and support...
Wishing you only the best,
Deb
-
Hey, you were right, I needed to stir the pot!
I went back to my family doc practice because I was so miserable, and they figured out I was having a migraine (one of several weeks duration) that was making my ear worse, which was triggering more migraine, which was making my ear worse, etc....sort of a spiral effect. So they shot me up with Imitrex and gave me these MARVY pain pills which start with a DOL...what the heck are they? DOLGIC. anyway, this is the first time in months that I have not hurt! The relief is incredible, and my ear is hushing up.
AND, they are going to track down my MRI report for me. Ahhhhhhh......I feel a zillion times better. Life is good.
-
That is great! I am so happy to hear you are pain free and life is good right now. I've never heard of Dolgic but it sounds like that and the imitrex are a good combo for a migraine that has lasted several weeks (wow). Hopefully you will hear about your MRI soon. Now go tuck yourself in and get a good nights sleep. Kiss to your forehead 16
-
Hopefully you will hear about the MRI soon. Hubby was put on Zomig for real bad headaches and Fioricet for bad headaches. Hasn't needed the Zomig yet but was diagnosed with cluster headaches. He has a recurrent benign meningioma and had Cyberknife on 10/1/07 and I am a "wait and watch" 9th cranial nerve schwannoma person - after 41 years we believe in doing things together - even having brain tumors :o
-
Im in Canada and i wait a lonnnnnnnnnnng time for results...last year it was almost 2 months...
This year they told me there has been major improvement and it should be two weeks..to be safe a left a three week period in between my test and my doctors appt.
The waiting kills me and for three weeks I wonder and have all kinds of crazy thoughts..
-
I had to bug the snot out of them (nicely, of course) two more times to find out that the result is "no change".
That is good to know, but that is not what I was after. In spite of "no change" the ear is getting worse and it is very unpleasant.
I wanted to know>>>
1. Is the MRI report completed?
2. If the report is completed, this means I now can order a DVD/CD and take the dratted thing to the new doctor my HMO will let me see who actually trained at House. Once I have it, can you get me a referral?
3. Will the specialist be able to "see" the unseeable 2 mm AN that so far only the radiologist claims is there?
So I will let you know how this comes out. I am sure they will give me the referral; I just hope this new specialist is not unbearably arrogant. Kindness would be so unusual; I think I would be shocked. The last otoneurologist I saw pretty much said "nothing to do...get used to it...have an MRI in a year...go back to your family doctor and don't bother me again."
In the meantime, I had a rebound migraine from the miracle drug and ended up in the emergency room where they gave me the same drug in an IV, and this time I was lucky they gave it to me in the emergency room because I had a really bad reaction to it. they gave me so much benedryl to stop the horrible effects of this drug, I was crosseyed for two days and missed 2 days of work. But at least I am still ALIVE. I am about sick of migraine, Little ear tumors, and grrrrrrrr. But I am still in pretty good shape, anyway, in spite of adversity.
-
Hi, folks...
Has anyone found a successful way of dealing with the ear pressure, intense tinnitus, and neck pain? I have a lot of inflammation in the tumor area and it seems to be taking over and spreading down my neck.
I wondered why the docs were not helping me with this and I think actually that they just don't know what to do. Does anyone else?
Things are not going well...they put me on a medrol pack and I had an allergic reaction to it. Now I am afraid to take anything. Still waiting for my allergy symptoms to calm down and seeing another doc today at 4.
I would settle for feeling semi-normal; right now, I feel like I have a pulsing hot marshmallow inside my ear and a marble in my throat. I've tried benedryl, meditation, valium...carry an epipen....
They tried me on an antidepressant and I was allergic to that, too. I swelled up like a balloon. What's left?
If I can't have my life back, I want a better one than this.
-
hugs................. found nothing really. Mine comes and goes...... lately has been ringing louder than usual and YES throat pain! I didn't realize this was due to my AN. I was all scarred it was throat cancer or something as I then to be on the paranoid side........ I have a buldging disc in my neck though that I think contributes to my headaches and the like... I usually can take a Motrin and it temporarily helps the headach but ear pain and tinitus, sorry... nothing yet. I hope someone can be more helpful than I.............. hang in there
-
When I get a stabbing pain in my ear, I usually drink a ton of water- also, for neck pain I take advil. sounds dumb but it seems to work- also I am spending way to much time at the computer so frequent breaks relieves the neck stress. I'm so sorry to offering such lame advise to you... perhaps massage therapy might help?
I'm also trying hard to monitor caffiene and sodium- to much seems to add to symptons.
Take care, Annie
-
I like the idea of massage therapy. ;D ;D ;D I think I will lie right down on that.
I went to my doc and he thought I had some major gastric reflux going on in addition to everything else, and he put me on prilosec. HE WAD RIGHT. The marble in the throat thing is gone!!!! What a relief! Just removing that problem has made me feel TONS better in only three days. Really, I had no idea; it never occurred to me that it was GERD because so much else is going on.
Now all I have is a roaring ear and wonky balance and a sore neck and migraines! ROFLMAO
Hey, I'm still on the planet!
-
Now the insurance company is trying to talk me out of another consult, now that I have the MRI in hand. Their position is that if nobody can do anything, I can just go on with my life and "ignore it", since it is a chronic condition.
I am not convinced.
And as I said, I would pay just for empathy at this point. It is hard to ignore the pain, noise, loss of hearing, loss of balance, and nobody can see this tumor...I want to see the guy who studied at House.
Of course, with my luck he will be an arrogant wazoo who tells me to go away and stop wasting his precious valuable time.
But I'd still like to check.
-
I am currently watch and wait approaching my 2nd mri for AN. So far so good just with the same symptoms as before not much change. I recently have been trying nuromonics for tinnitus. I`m feeling pretty optomistic going into my second month. Takes about 6 months for the whole procedure to really make the difference. I`ll keep posting my results and hope to have something here which will make tinnitus bearable for us all. I just stated to post here, stay in touch,Mickey
-
Mickey: Thanks for posting about Neuromonics - this is the 1st I'm hearing about it.
I'm glad you're 'testing' it for us. I'm so tired of the 'years' of tinnitus. (I checked the site - very interesting)
How much is it costing you? (always the $ factor).
I'm very interested to know how this pans out - please keep us informed, & thanks !!
Always good thoughts, Nancy
-
Hi Nancy, I`m trying to get the knack of posting here. Anyhow it is expensive, about $5,000. They are starting to get recognized by some insurances. My insurance covers 60%. I`m sure hoping this will all pan out. Of course I have to hope my little friend stays dormant. I`ve had the tinnitus for close to 30 yrs. I found the AN by an unrelated trip to the ENT who sugested an MRI in Aug. 07. I have had the same symptoms so long I figure might has well just monitor it cause god only know how long its been there. approx. 1cm. Spoke to 1 fellow in AN New Jersey who had his for 15+ years watch and wait. I`m glad to have found the site to communicate. Talk soon, God Bless, Mickey
-
So, this is where I wake up from my dream of being independently wealthy - $5.000? - glad to hear your ins. paid 60%.
Welll, at what price is too much to get rid of the tinnitus?
Please let me know how it goes - hopefully my insurance will foot some of the bill too!!
Thanks for pioneering this for us, always good thoughts, Nancy
ps: I had the surgery & the tinnitus is primarily on the deaf side, do you know if it will work if there's no nerve conduction
on the operated side??
-
Hi Nancy, I`m not sure but do know that sound is placed thru the headphones along with music. There are different stages to the process which right now I`m in the beginning. End of March I go back for stage 2 and will inquire on if some one with loss of hearing will be able to get this treatment. Talk soon, Mickey
-
I am curious, too...but I can't imagine anything doing anything for my tinnitus.
I have chiming pulsatile tinnitus...
Hissing pulsing tinnitus....
Audio feedback tinnitus....
Riding in a jet plane tinnitus....
all at the same time. It drowns out what little I CAN hear in that ear.
If you find a recording of a fetal heartbeat, that is about what I listen to every second of every day if you add musical chimes and a sound like a furnace running and occasional odd banshee shrieks. The wacky beats from my mitral valve prolapse are amplified in my ear. I have learned to keep busy and pay attention to other things, but:
I am not "used to it" (been years, and that is the stupidest thing I hear in doctors offices--either "get used to it" or "you must be used to it"----I always tell them "yeah, like you would get used to driving on two flat tires, or walking without a foot, or having a 24 hour grade 8 headache. Do I have a choice? No. I am used to not having a choice").
-
Just got my 2nd MRI report and things are stable. I was happy to hear that. Will be getting into 2nd phase of neuromonics soon but thats supposed to take a few months before you really can tell . One step at a time one day at a time! Will keep all posted in future of final outcome. As for right now so far so good! Mike
-
that's good! may some things stay the same.
I found out the lump in the throat thing is : Cricopharyngeal spasm, not GERD.
http://www.voicedoctor.net/therapy/cps.html