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Topic: Tinnitus, blurred vision..other weird symptoms

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Nov 4, 2017 03:57PM

swg wrote:

Right around the time I was diagnosed, I got a UTI. My dr. gave me Bactrim. I switched to Macrobid because it seemed to cause all kinds of problems, including Tinnitus.

Well, the tinnitus has gotten worse. And now my vision is very blurry, and my eyes are very irritated. And I have a weird twitching in my lip, as well as the feeling I'm being poked, from time to time, on various areas of my skin.

Of course now that I have BC I'm paranoid the cancer has spread to my brain or something. UGH.

I don't even know if any of this stuff is related to each other..or related to the cancer.

I haven't seen an oncologist yet and I'm supposed to get my pre-surgery tests-blood, EKG etc. soon so maybe I should just tell the dr who does those tests.

Anyone had any weird symptoms like this that turned out to be related to cancer?

thx

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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Feb 23, 2018 08:27PM sas-schatzi wrote:

swg here's the link. Don't even try to catch up. They'res 1450 pages. truly aa nice group. Give it a look :)

https://community.breastcancer.org/forum/102/topics/767259?page=1461#idx_43803


Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 20, 2018 04:53PM QuinnCat wrote:

I just did a search on tinnitus on this board and found myself here. I recently went to two different ENTs (the first without an in-house audiologist, so went for the second one that my MO referred me to). Ostensibly for now seemingly permanent, rather than occasional, tinnitus. Had a large sound impact to my tinnitus ear in 2005. Around XMAS, tinnitus became constant at the same time that the only thing I'm allergic to in the plant world - Incense Cedar - came on strong (so I also took Zyrtec and/or Benadryl daily). I assumed the tinnitus was fluid in my ear from the Incense Cedar. That allergy usually goes away early February, but the tinnitus has not!!!

I have notice hearing loss in this year (since 2005), but the only place I notice that it seems worse, lately, and I can't tell you when lately started, is when I sleep on my good ear and I have to turn up my XM radio to hear it. Then I roll over and have to turn it down! My hearing test showed little difference between each ear - both losing some hi-frequency sounds. I did bear on word reputation in my bad ear. The ENT seemed to put more significance into my perception of my hearing than the hearing test.

Ok, so here is where I went off the deep end The first ENT didn't mention anything more than I have tinnitus, but would wait for a tone-matching hearing test (no way was I going to wait 6 weeks for that appointment). The second ENT, and if judged by facility, doctor reviews, number of doctors and audiologist and the fact that my wonderful MO referred to him, and mostly, by his calm informative attitude, was the better of two ENTs gave me two options for dx:

1) Acoustic Neuroma (MRI, and if there is one, surgery at UCSF)

2) Autoimmune hearing loss

I thought, oh, ok. Went home then used Dr. Google and realized neither option was good. Not good at all.

Gave me prednisone. I was so freaked out the night before I started the prednisone, I slept one hour. Lucky there was a Royal Wedding to entertain and distract me that night. The night after taking prednisone, per my fitbit, I had the best night of sleep ever. - Go figure and just being pre-occupied with the tinnitus (which I swear got louder after the audiologist pocked around in there) and a brain tumor, or losing my hearing in both ears (or having to take chemo again for the immune thingy), I couldn't eat. The opposite effects of steroids!

Yes it is one-sided, but I did have a huge noise insult in 2005 in that ear and have had at least some hearing loss in that ear since.


Is there hope that these two options are the remote options?


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May 20, 2018 05:28PM - edited May 20, 2018 05:30PM by sas-schatzi

Hi Quinn, Tinnitus is not my forte, but I will share the little bit I know.

Yes, ear trauma can be a source of tinnitus

Drugs can be a source of hearing loss with resultant tinnitus.

Contact Chevyboy here on BCO. Her tinnitus was caused from one of the AI's. I forget which one. She had to find her own diagnosis on the net which was later confirmed by testing. If I remember correctly the drug caused a stroke of the audiovestibular cranial nerve on one side. She has permanent hearing loss and now has hearing aides.

The in's and outs of how the corticosteroids affect all the structures of the hearing system--outer, middle, and inner ear is known, but whether it can have any affect on the nerve, I've not been able to get an answer too. I raised the question after I had a craniotomy in 2012. I was given dexamethasone post op. Dex and prednisone are in the same corticosteroid family.

After the crani while on the Dex, my hearing improved dramatically with a concurrent reduction in the tinnitus. The dramatic affect could actually be measured by the audio bar on the TV.

Pre dex and post dex completion |---------------------------------------------------------------------------|

................................................lowest..................................................................................Highest

.............................................................................................................................................my range...

My range on dex............................. X

Phone call, I will finish later



Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 20, 2018 05:43PM Meow13 wrote:

I still have tinnitus in one ear after taking AI drugs but it is much better after discontinuing the drugs. I had a sinus MRI they didn't see anything. The ear nose throat doctor was a real jerk. I told him since I was diagnosed with bc that my oncologist insists I get this checked out. He tried to make me feel foolish for getting an MRI, real jerk.

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May 20, 2018 06:01PM QuinnCat wrote:

I have read that steroids will show improvement anywhere from 5 days to (double digit number longer than the 10 days Rx I got). So far no change at day 2. Do you know the mechanism for how it improves hearing? Does it help tinnitus or do those two things go hand and hand.

The ENT seemed to indicate the steroids would help whether it was an acoustic neuroma or auto immune issue.

I’m stumped why he gave such two crappy possible dx’s without even mentioning any other possibility! I assume it is it’s one-sided nature, but I would assume that 2005 noise event could also play into it’s one-sided nature.

Interesting on chevyboy. I’m in my 6th year of Exemestane, too fearful to stop. Have an appointment at UCSF in August to ask about that. I hope I don’t end up there earlier for brain surgery LOL





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May 21, 2018 10:35AM swg wrote:

FYI I still have the tinnitus but I just try to ignore it. I am too busy trying to pay off all the credit card charges I ran up, making my medical copays..ugghhh

The neurologist will have to wait :(

PS health care in the US sucks

Dx 9/11/17. IDC grade 2, stage 1. 1.2cm. in right breast. ER+/PR+, HER2- 2nd tumor in right breast found 10/22/17. Dx 9/11/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Dx 10/23/2017, DCIS/IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 11/28/2017 Mastectomy; Reconstruction (right): Tissue expander placement
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May 21, 2018 07:27PM - edited May 21, 2018 07:29PM by Georgia1

Hi there QuinnCat and all. I too am going down the tinnitus rabbit hole so here's what I know so far after two ENT visits:

The most likely cause of tinnitus is hearing loss. In a subset of people, our brains hear the silence, think something is wrong, and make up some fake noise to fill the void.

An uncommon cause is a benign mass in the ear canal - these tumors are very, very unlikely to be malignant. To rule this out/in, I have an MRI scheduled in early June. (Hey, I was getting my boobs scanned anyway, so why not throw in the ear canal?)

Estrogen loss makes hearing loss worse and tinnitus more likely. According to one ENT, everyone knows this but it is rarely discussed with breast cancer patients since "breast cancer can kill you and tinnitus can't." Progesterone, in particular, is important and is why women in general develop hearing loss later than men. Plus some chemo drugs cause tinnitus independently.

There's really no cure for tinnitus and I will have to ask my third ENT (yes, I am on that much of a rampage) about steroids. No one has mentioned that yet. Most treatment consists of tricking the brain into ignoring the sound with sound machines and the like - or getting hearing aids with a sound masking feature.

Happy to post with more info. as I get it because this is a super annoying side effect!!

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 22, 2018 11:02AM sas-schatzi wrote:

OH Georgia so glad you are into researching and rampaging. That makes a good combo for finding the most up to date info on a subject. Whoohooohhhhhhhhhooo. A big part of my excitement that you are researching is, I'm slowing down in that area after being a life long learning sponge.

Back to what happened when I was on the Dex. I didn't notice it till possibly the 4th(5th?) day after crani. WE sat down to watch TV. You can see from the audio bar above, I'm usually at the max. I had to keep turning it down. I was in the bottom 25th percent of the audio bar. My brother who was here to care for me had brought earplugs b/c he was used to how loud I had to have the TV. I took a decreasing dose of DEX for around ten days. As the dex effect wore off, I had to increase the volume. Not sure how long it took, but in time I was back to maximum volume for the TV.

My hearing loss has been life long. The Tinnitus started with a virus. First both sides, then one sided. ENT ordered the MRI. The ENT gave me mostly the same description of the absence of sound with the brain filling in the space with a noise. My unanswered question is: If I had life long hearing loss, why did the tinnutus only occur when it did?

Georgia & Quinn appreciate you looking for most recent info.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 22, 2018 02:07PM QuinnCat wrote:

An uncommon cause is a benign mass in the ear canal - these tumors are very, very unlikely to be malignant. To rule this out/in, I have an MRI scheduled in early June. (Hey, I was getting my boobs scanned anyway, so why not throw in the ear canal?)

Georgia - let's just say that "benign mass" is not so benign. Sure not cancer, but an acoustic neuroma surgery rarely has good outcomes. Most end up watching and waiting until it actually presses on the brain stem (which would cause paralysis and death) because unless a combo of being small (less than 1 cm), great surgeon, location, one will probably lose all hearing in that ear, though not always, perhaps damage to the trigeminal nerve (not pretty), lifelong headaches, possibly lifelong balance issues, nausea, still with tinnitus, etc.. Of course, one would want to go to the best surgical center for this ...on the West Coast, seems like brain surgery issues go to UCSF. That's where my ENT mentioned. It's a gamble versus don't have a choice situation. The result percentages also are a mix of good and not so good surgeons, so I suspect UCSF, or places like, will have better outcomes than the average.

Estrogen loss makes hearing loss worse and tinnitus more likely. According to one ENT, everyone knows this but it is rarely discussed with breast cancer patients since "breast cancer can kill you and tinnitus can't." Progesterone, in particular, is important and is why women in general develop hearing loss later than men. Plus some chemo drugs cause tinnitus independently.

Oh crap! Everyone knew this? Should I stop now?? My MO says it will only give me 1% more to go year 5-10. That's certainly not worth it if it gives me tinnitus as part of the package. I was going to UCSF anyway, in August, to gets some advice on that. I've been on it for 5 years and 9 months, so certainly could take that choice.

On my 4th day of steroids. Can't say my hearing was that bad to start with (my main complaint is tinnitus)...certainly not on max volume on the tv as you describe Sas!! There is a slight difference in the ears since 2005 after getting that sound insult one night at an INXS concert. I think the recent full-time tinnitus in right ear has made me perceive the bigger difference in hearing and it didn't really register on the audiologist test last week. I'm so confused about why the ENT chose to take my 30% figure difference over the graph the audiologist generated?? I'm hoping this led him to believe that I had a sudden hearing loss (sensioneural in one ear) and what alarmed him and gave me these two possibly crappy dx's, but in actuality, I have no difference in hearing from what I had after that one concert in 2005 and it's only the tinnitus that makes me think that (as I said before, lying on either side, head smashed against pillow, listening to XM radio is where I noticed that bigger difference since the tinnitus started in earnest, XMAS 2017).

Still waiting for the MRI people to call.

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May 22, 2018 05:23PM sas-schatzi wrote:

Quinn, sometimes the crappy diagnosis or a scary diagnosis is to get insurance approvals. Sounds nuts but true.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 22, 2018 07:40PM Georgia1 wrote:

Sas-schatzi and QuinnCat, thanks for the info and the encouragement to keep looking into this. Yes, it's interesting to get out of the orbit of breast cancer world, where the doctors only care about breast cancer, and get a fuller picture of what estrogen loss really means.

QuinnCat, let's hope both our MRIs are clean. Whew. I need another health issue to deal with like I need a hole in the head. But in my case the ENT noticed a lack of sound quality, in addition to hearing loss and tinnitus, in the right ear only. So she wants the MRI just to rule out a "mechanical" issue and confirm it is the sensorineural "brain filling in the sound void" thing. I totally support you having a serious conversation with your MO and GP (and OB/GYN and ENT) about the pros and cons of staying on Tamoxifen for more than five years. The risk of tinnitus seems quite real.

Sas-schatzi, I wish I had an answer for you on who gets tinnitus, when, and why. All I'm getting right now is "it's mysterious" and "it's hereditary" and "crap we don't really know anything because the neurologists are all researching much more interesting things." Hugely annoying but I have one more ENT to pester and will post more as I learn it. So far I've found there is some evidence that magnesium and taurine can help with hearing issues and tinnitus, and sound masking is another approach.

Meow13, I'm glad you saw improvement after going off the AI. It would be nice to think tinnitus is temporary.

swg, yes, our health care system is just awful. I feel lucky to have such good insurance and will return to share all the info. I can.


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 22, 2018 08:28PM sas-schatzi wrote:

It's approximately 20 years since my Tinnitus started. The first year was awful. It was like the roaring of an angry surf in a hurricane. But as time went on it got softer. For the last few years no two days are alike. Mostly I can block it out during concentration on other stuff.

Over the 20 years they're has been a few moments or hours where it is not present. The "sounds of silence". When this has happened, I try to figure out what was different. No identifiable connection.

BUT you are going to think me nuts. Just in writing and thinking about the past, I remember something. It's been so long since I had to do it, I had forgotten it. I think the original reading was called something like "Resetting your Tinnitus".

It was for resetting the noise level. For example, when the noise level was high, (by direction of the article) I would turn a noise level up to just above my tinnitus level, capturing my brains --sensory interest and then I would turn the noise down slowly. Then I would sleep with the noise(music) at a lower level. In the morning the tinnitus level would be lower. As I say, it's been so long since I have had to do it, I'm hoping I'm describing it well. If I remember any more details, I will post.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 23, 2018 12:44AM QuinnCat wrote:

Sas - the insurance aspect makes sense! And what doctor would not want to find such a dx early because he didn't order an MRI. I wish he had known I had great insurance that never turns me down for anything, though just for self-protection he probably ordered one, but he might have qualified the gravity a bit.

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May 23, 2018 12:45AM QuinnCat wrote:

Do you both think your tinnitus is louder at night? Maybe it's just because I'm not so active at night...sitting quietly or trying to sleep!??


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May 23, 2018 01:51AM sas-schatzi wrote:

Quinn in quiet times it is greater b/c we have no distraction. The Concentration on something else takes away the noise.

The Resetting research is important. I used to do it. Not sure if I posted on this thread about it before. But it's strong memory now. It did make a difference.

If you can reset it lower that is a GREAT thing. The "Capture " idea has an analogy to rapid heart rates. A pacer machine would be turned up to a rate just higher than the heart rate ---caputure the pacing ---then bring it down. This is an old concept. Prior to drugs that could do it. It was a short use treatment. It was called Over Dive Pacing. No clue if it fell out of favor as treatment. When I read about the Raising the noise to above the present noise level, I was familar with the concept of Over Drive Pacing. Ergo, tried it. For me it worked.

Not sure where I was on AI's in the period I used resetting or anything about the scenario.. Just a memory that is there, with holes. Enough memory that it worked and I had a plan.

To add another conundrum--puzzle to the story: When I take opioid pain medicine that affects pain brain receptors, my hearing loss gets way worse AND the tinnitus gets way low. As a nurse giving pain meds for 40 some years, I never once had a patient complain of hearing loss with pain meds. Any doc I ever brought this puzzle too, just schrugged it off. i.e. they haven't a clue.

Another memory just surfaced, after the crani, I woke up and couldn't hear well and my jaw was frozen b/c I had a TMJ problem from a 19y/o time of 4 wisdom teeth removal and the jaw froze. Bad and funny stories about that for many years, but some research about TMJ and Tinnitus maybe a link. Worth a google.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 3, 2018 08:01PM QuinnCat wrote:

have an MRI scheduled for 6/13. My tinnitus still full time and I swear much worse since the audiologist poking around in there getting a seal to see if my ear drum flexible

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Jun 3, 2018 08:34PM - edited Jun 3, 2018 08:36PM by sas-schatzi

Quinn, Hate it when the treatment/testing seems to make it worse. Google "resetting tinnitus" It was long ago that I read about it. Not even sure if I descried it correctly in last post. Music was involved, but there was something else. Used it when the things would get to a roar. It would bring it down. Never took it away, but made it less horrible. The advantage now is it brought back the memory while talking about it here.

Today was a bad hearing day due to weather. Tinnitus varies on bad hearing days due to weather. Today was bad enough I stopped about 50 some miles from home at a pharmacy. Talked to the RHD. Sinus drainage, swelling,hearing all an issue. She suggested Flonase which is now OTC. Now home and it's been 3 hours. It's a steroid. Now swelling is better, this helps with drainage. Posterior pharynx swelling less---no way perfect--but better. No tinnitus right ear. Summer's eve crickets in left ear. That's a very nice shift.

Tomorrow going to try mucinex along with the flonase. I hate adding drugs, but I was desperate.

Not every "trick" works for others, but we never know what we share may work for someone else.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 4, 2018 03:08AM - edited Jun 4, 2018 03:08AM by Meow13

I was prescribed flonase, I use it occasionally. It makes my sinuses feel better not sure if it helps the ringing ear. Sometimes the ringing gets worse at night not sure why.

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Jun 4, 2018 10:35AM - edited Jun 4, 2018 10:36AM by QuinnCat

Meow-I have read tinnitus louder at night for many. I didn't say “worse" as I have it full time now and that implies better...never better. I know it is worse for me in the evenings. The reason I read cited it is quieter, generally at night. Not sure I buy that, but for sure lying in bed that could be true.

I'm so suspicious of fluid in the ear, though neither ENT saw any. The doctor's asst mentioned it as a possibility when I called last week, implying they couldn't see everything, but maybe she was just trying to talk me off the AN ledge. Maybe Flonase worth a try? (I never have sinus issues, but further demonstrating my lack ofcommand of head anatomy, I seem to recall with my earaches in youth, small Eustachian tubes, but a child's memory combined with the lack of one as an adult should be viewed with suspicion). But this did all start with a normal allergy (my only one) to the conifer tree Incense Cedar (which normally goes from late December to early February).

Recently I've been waking with a slight headache. This is new.

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Jun 4, 2018 11:38AM pupmom wrote:

My husband and I both have tinnitus. I was diagnosed with cancer, he never has been. I believe we have this condition because of listening to so much loud music throughout our youth.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jun 4, 2018 12:08PM QuinnCat wrote:

Sas - going to look up "resetting tinnitus" during my next free time period (my life is in time blocks now). Next one is a hike in the woods!

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Jun 5, 2018 02:20PM sas-schatzi wrote:

Quinn, So, recognize the life block thing. Laughed at your comment about childhood and adult memory. .....Mucinex was a disaster. It dried the secretion so that it was like a dried lava flow in the pharyxn.(sic aand I don't care ugh). Eustachian tube swelling in one of my issue's. The steroid flonase caused the left ear to pop in about ten minutes. After I used it, I leaned my head back and to the side to let it flow over the opening. then sprayed again and did the same in the opposite direction. Today's tinnutis is right sided with the left quiet. Opposite of Sunday's. Mine changes frequently.

I swear in relating history, it takes minutes to get passed the neck to describe problems. Memory, Tinnitus, optic migraines, Vertigo, Wet macular right, cataracts bilat. Can't see, taste , smell, or hear.. That last sentence is being dramatic. They are all impaired and need to be at very high threshold for all. TMJ. Chronic lava flow sinus drainage left. Obstructive apnea (on CPAP). Thyroid (post cancer). Chronic pain post surgery and biopsies of anterior neck---low level, but still a distraction. Cervical stenosis. So from the neck up, I'm a mess

Quinn, morning headaches can have many origins. If it starts to be an issue. I'd first think sleep issues. An odd way to check this out, is use a flat untucked sheet to sleep on. Use a sheet that is at least one sheet size larger than the bed. If you are struggling in your sleep, the sheet at the head will be messed up in the morning. That could be from many origins. Breathing disruption from sleep apnea, blocked nares, pain...If there are issues of the rest of the body where you are tossing and turning other portions of the sheet will be messed up. For example, if it's just the lower portion that would make me think the legs are "restless'. You won't see this suggestion in any textbook. Long story as to why I came up with the observation.

I know we with BC are attuned to new symptoms b/c we know only to well the worry about MBC. But your new symptom of morning headache could just be a new or existing allergy misbehaving.

Looking forward to what you find on resetting

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 5, 2018 02:27PM sas-schatzi wrote:

Pupmom, No question tinnitus can have an origin to loud music, but they're is a laundry list of other causes. The only one off hand that may be correctable is from drugs. For example, high dose aspirin can cause tinnitus which can be reversible with reducing the dosage or discontinuation of the drug. In an older time when aspirin was a mainstay drug for arthritis this was a common issue.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 5, 2018 02:30PM Meow13 wrote:

My oncologist believes it is connected with anastrozole I took. Been off AI 2 years now, ringing getting better but some days it flares up at night. But overall is better.

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Jun 5, 2018 03:55PM sas-schatzi wrote:

Meow, "Oh what a relief it is". Not sure if there is anything out in the internet nether world that would describe if "when tinnitus starts is it always loud" and "what percentage of tinnitus folks describe that it gets softer over time". Mine was a roar in the beginning. Then became progressively softer over the first year. It never returned to as bad as the first few months. I don't think I would have survived if it had stayed at the same level as the first 1-2 months.

I do now that my initial study described that people had it so severe they committed suicide. My ENT doc standardly says to new tinnitus patients " This problem is not my fault, I can't cure it, please, don't kill me" I asked why he would say such a thing about killing him. He related that not long before that, a patient killed his ENT doc b/c he blamed him. Sometime years ago there was a famous actor that gave up acting b/c he couldn't work with the noise.

At least what it seems like here, we are coping. But it sucks.

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 5, 2018 05:03PM Meow13 wrote:

Mine is more a sensation like vibration sound.

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Jun 10, 2018 03:56PM QuinnCat wrote:

Update - tinnitus in one ear (right) still going strong. It has changed from the the type of noise one ears sitting on a commercial airliner to that plus a whistling noise. It is really only noticeable if I'm noticing it (during the day when not involved with activities) or at night and especially when head meets pillow. I have not tried the resetting yet. I am acting as if it is going to go away eventually!! My brain MRI is this Wednesday. In the meantime I have been so busy with a sick cat (who was dx'd with either IBD or cancer) that just getting her squared away has been a process. Turns out I changed her food in early April and she was suffering some sort of reaction to that. $1000 later...oy vey.

Funny how life sometimes is just about perspective. With the headaches I started thinking brain mets and then to have a dying cat - what's a little Acoustic Neuroma? I'll take that any day and the headaches are gone (I would have made a mess of that top sheet Sas on any day of the week!) After reading some very discouraging things about AN, I am more recently encouraged by some good outcomes (though hearing preservation isn't necessarily one of them). Not all good outcomes, but a lot dependent on the doctor one chooses. Luckily, family and friend wise, I'm very lucky to have a good logistical relationship with UCSF, which seems to be a good choice for anything brain, though funny, I'm going there anyway, for a second opinion, on continuing on with hormone blockers in August. Sadly, I could not get into to see Dr. Hope Rugo for that (only taking Stage IV patients), but was referred to a doctor specializing in BC Survivorship.

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Jun 10, 2018 08:22PM Georgia1 wrote:

Hi there QuinnCat. I had my MRI on Thursday and should have results to share soon. Hope your darling cat improves.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 10, 2018 08:40PM - edited Jun 10, 2018 08:41PM by QuinnCat

Georgia - please let us know what you find out! Is your tinnitus in one ear or both? Mine is only in one ear, so I got Acoustic Neuroma and Auto-immune disease as my two differential diagnoses. What did they suggest for you?

Can you tell me about the MRI?? I've had many of course, with BC, but I do not do well. This time I have some valium to take, but curious why one friend said she went in head first up to her shoulders but the imaging place said I'd go in feet first for a brain scan! Did the woman I spoke with really know?

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Jun 10, 2018 08:54PM - edited Jun 10, 2018 08:59PM by Georgia1

My tinnitus is in my right ear; it could be a benign tumor or more likely it is just age + my mild hearing loss + Tamoxifen. And the MRI - yuk. Hate to tell you, but it was worse than the BC MRI because they had me face up and with a Hannibal Lecter-type mask on to keep my head still! And I went in head first, not feet first, which was fine, but ugh - the BC MRIs were always lying face down which was much better. I think the duration was 12 minutes without contrast then 8 minutes with contrast. Yay for valium and good luck!


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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