CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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In 2004 I had that “snapping hip” syndrome. I had lost 40 lbs. on Atkins, and the only thing that would relieve it was holding on to something and swinging my leg till it stopped “catching.” Just about the time the swinging-leg remedy stopped working and I’d also recovered from a head cold, I suddenly developed a hearing disturbance: heard pitches 1/4 tone flatter in my L ear than in my R, recorded music sounded out-of-tune (vocals were fine, instrumentals flat), I had a “hollow” feeling in that ear and unamplified stringed instruments all sounded thin, watery and out of tune--even my best guitars sounded like cheap Wal-Mart electric guitars that weren’t plugged in. I was terrified. My ENT had no idea what was wrong (“must be something in your cochlea”). My ortho took X-rays and gasped (in front of his med students) “Holy shit!” The X-ray showed a chunk had broken off my iliac crest and was floating free--the tendon was catching on the jagged edge. He sent me for a nuclear bone scan, as I was too young for osteoporosis to explain it (and I hadn’t injured it, to the best of my recollection).
Meanwhile, I posted about my hearing anomaly on a couple of musician listservs, and a surprising number of people had the same thing--all after sinus infections. One gave me the phone number of her neurotologist in Seattle, who then referred me to a colleague in the N. suburbs who specialized in treating musicians. I called him, and found out he’d passed away the week before, so I saw his partner instead. The partner was a cold fish of a guy. He did a hearing test (up to only 8kHz) and said there was nothing wrong with my hearing: “you’re a musician, and you’re just too picky about pitch.” He reluctantly agreed to do an MRI. He then went on vacation. I had done some Internet searches and found an article in the Lancet about a similar “sudden sensorineural hearing loss” that was successfully treated with a combination of supplements and a prednisone dosepack--which had to be administered before the 28th day after onset. I even got a referral from my shrink to an “auditory psychologist” at the Cleveland Clinic, who gave me a variety of recordings to listen to while lying in different positions, in order to retrain my brain. I went to a musician-audiology clinic (Sensaphonics) which tested me up to 18kHz and confirmed loss above 13kHz--they made ear molds for me to insert protective filters for future use and perhaps to have personal monitors made to protect my hearing once I healed (which they told me I probably would to some extent).
What do these have to do with each other? When he ordered the MRI, I asked why, and the neurotologist replied, “We need to rule out a brain tumor or brain mets from bone cancer.” (And the nuclear bone scan was done to rule out bone cancer or bone mets from brain cancer). First I got the result of the bone scan: an area of inflammation over the fracture, but nothing indicating tumor activity. The ortho asked, “Say, didn’t my former partner do an open-reduction/internal-fixation on your tibia back in 1996, with a bone-graft harvest from your iliac crest?” I replied he had. The ortho replied, “Seems like he dug a little too deeply; the crest weakened and broke off, but your fat held it in place till your weight loss. But better he harvested too much rather than too little bone.” He went on to say that it’d probably resorb, but if it didn’t he could always go in with an arthroscope and fish it out. It resorbed.
Meanwhile, back at the brain-and-ear, the neurotologist returned from his vacation and pronounced my MRI was normal except that my L Eustachian tube was slightly “patulous” (stayed open wider than it should have at times it was supposed to stay closed). “Did you have a large sudden weight loss?” he asked. I replied “40 lbs.” “Aha,” he said, your natural fat was holding the tube closed and the loss caused it to open and be flabby. I can’t figure anything else out, or why that’d cause your pitch problems, so I’m gonna say you have atypical Meniere’s--atyplcal because of no vertigo or nausea. Give up salt, sugar, alcohol and any dark-colored beverages.” When I told him it was already Day 27 since onset, and mentioned the Lancet article, he reluctantly agreed to call in a scrip for the prednisone, which I began to take with vinpocetine, ALA, quercetin, Vit. E, and manganese. Within 3 days my hearing was back to normal!
So it’s interesting how things we think are related turn out to be coincidences, whereas one little thing like a weight loss or gain can occasionally have sudden and profound consequences on unrelated bodily systems. Especially since for a few days, I thought I was under a definite death sentence from my brain, bones or both.
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Also embarrassed to admit I’ve had a housekeeper, daily M-F since Gordy was a baby and she was his nanny. I’d always viewed the concept of having a cleaning lady as elitist and exploitive; we had a cleaning lady in first biweekly & then weekly--because my mom was willing to pay her a fair wage when her other clients--my aunts--treated her more like a slave--and my college friends made me feel very guilty about it. But Bob & I are terrible housekeepers--he’s always been too busy, I too lazy, both of us too inept; and my parents, when they came in for Gordy’s bris, decided I needed a baby-nurse for at least three weeks. Bob’s parents, though they didn’t fly in, contributed half. When the nurse had to go on to her next client, I tried going it alone, and postpartum depression kicked in big-time. The nurse suggested her daughter-in-law needed work, so we hired her. She never lived-in, but used to work 9-6 and alternate weekends. After Gordy got older, she went down to working 10-4 or 9-3 M-F, and she’s worth every penny. And she does deep cleaning. When Bob’s DD moved in with us, she was his weekday caregiver (despite several cultural clashes). He adored her till the day he died. She’s practically my personal assistant, and is family now. (Bob treats both her and her DH as his patients). She’s part of every celebration.
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And not to sound an alarm, but found this article today on GenomeWeb (one of the few important bc articles that doesn’t require a paid subscription):
Estrogen-Positive Breast Tumors Show Mutational Shifts Following Hormone Therapy
Aug 10, 2016 | a GenomeWeb staff reporter
https://www.genomeweb.com/sequencing/estrogen-posi...:%20Myriad's%20Q4%20Revenues,%20Forecast%20Fall%20Short%20of%20Expectations;%20Stock%20Tumbles%20-%2008/10/2016%2011:20:00%20AM
It shows that ER+ tumors can evolve after a long course of AI therapy to include a larger number of ER- cells. Caveats are that the study didn’t include Stage I women, only II and III, and that the only way to really tell was to do neoadjuvant AI therapy--once the tumors have been removed, they can’t mutate (only the cells left behind, which evade discovery, can). It not only shows the value of neoadjuvant AI therapy (at least in stage II & III patients), but also calls into question whether AI therapy >5 years (if even that long) may not be appropriate in certain patients. (Age, grade and Oncotype should also play a role). And it may also explain why OncotypeDX is a more accurate predictor of DFS in older women--and why chemo might still be worth the risk in younger (peri-and-premenopausal) ER+ women in the mid-low and low-intermediate ranges. (These last observations are strictly mine, not mentioned in the article).
BarredOwl, have you seen this? Thoughts?
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Sula.. Hi.. Good to see you, but sorry you are in CT...any aches and pain can put us there..
Poppy.. It's so hard to know what to do.. At first I was thinking along Ducky's lines that he may want to be with his girlfriend, and a good idea to invite her too.. But if she's away at the same time that's not the reason.. When my 3 were 18, 2 of them I would of been happy to let stay home.. The 3rd one I wouldn't of.. but for different reasons to you...she would of thrown the biggest party 🎉 ever while we were away.!!! 😱
I'm circling CT as well.. Have my blood test tomorrow, mammogram and scan on Monday, and Drs appointment Wednesday.. I'm a total wreck 😞
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ct for me, dentist tomorrow morn, then emergency Vist from plumber, then second opinion from nuerosurgeon on Friday
Can you say exciting life.?
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Waving to all. Slow you are the best for thinking of me.I have terrible sores from rads. I'm done but they are not.
This is the best town ever. I'm curled up on the porch.
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Iris, over the 29 years we’ve lived in this house, we practically put two of our plumber’s kids through college....and the younger one shoved his B.A. in a drawer and got his plumbing license!
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((((Sula)))) I hope everything continues to be clear. PoppyK, I wouldn't leave him home. The idea of one last family vacation is too sweet to pass up. I would explain to your son that it means a lot to both of you. Love you all so much.
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I saw that article, Sandy. It depressed the hell out of me.
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Poppy....my husband would have killed to be left alone while the parents were on vacay at that age...I have heard enough of the stories of the parties etc that went on in Westport with him and his friends when parents were away.Take him along. Can he get his own tent/room for privacy?
ChiSandy,
I'm not opening that article today..but it looks scarily fascinating
Thanks, Molly..now that I'm driving around crazy town the advil that I've taken actually seems to be working...of course it would probably help if I took the advil regularly as I'm supposed to...anyway dropping in here has done a lot of calm me down
Lucy, thanks for the good thoughts...
I have x-rays tomorrow morning at the hospital..then PT in the afternoon. You may be see me in my crazymobile touring around CT later this evening.
You guys are the best!
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Hi, everyone. Work has been crazy, but I wanted to pop in, and read up on what is happening. Hugs to everyone who is struggling.
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WavingHi to cubbie
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Waving to Cubbie also, and sending HUGS to all, especially to those who are square in CT! I've been off the Grid for almost a week: went to the Sierras to camp and clear my head, came home to work craziness....AND my cell phone died, though it seems to have partially restored itself.
So, today, my first day back on the job after the few days of vacation: I reach to turn on my computer on my desk...I have one of those Apple computers with the computer built into the screen (iMac)....it is big and heavy but generally just sits there and takes my pounding on it. Not today though: I reach to turn it on and before I even touch it, it falls over and hits me in the face! I am ok (cheek is a little bruised) but it was just weird. Especially with my cell phone going dead for no reason. Someone is trying to tell me something about whether I should be back at work!
Sula, I've really missed seeing you here. Sorry you are here for a sucky reason. Hope to see some of your food porn soon! I may be in Sonoma labor day weekend; if so, hoping that coffee on the square might work.
Slow, so nice to hear that you are working on eating well and being active! You are my inspiration! Thought of you as I did a bit of hiking up in the mountains. Gabe saw no other bears up there besides himself, so he was a happy camper. Miss you.
Love to all, including the quiet crazies...
Octogirl
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Evening Crazies!
Molly, Whenever you're ready for a girls lunch out, just let me know and we will come to you again. You've got enough at the moment. I would hate for you to have to make the drive. Poppy is a lovely driving partner and she helps put my GPS in its place when it gives us wrong directions. hahaha BTW...We love you too!
Iris, Get ready for your pocket party this week. I know you have many appointments, just remember we are all right there with you. I hope the 2nd opinion turns out well. I WANT A CLEANING LADY!!! I've had one come in once in awhile, the problem is I feel so guilty when she is cleaning away and I'm just sitting there. I think its the Italian/Catholic guilt. Glad to hear you got your plates.
Twinnie, Guess what? We live pretty close to the wineries. Perhaps we should go wine tasting when you're here!? We are jumping in your pocket for tomorrow. All good thoughts are coming your way.
Ducky, I was lucky. The lady that comes to clean my house every so often DOES my blinds and baseboards!! You crack me up!! I'm with you, once I get down on the floor there's no getting up. I remember around Christmastime, I got stuck on the floor setting up our train and was stuck there for a LONG time. I think I may have told that story here. haha
Sula, It's good to see you but not for the reason you're here. I'm sorry to hear about your hip. I hope it turns out to be something simple for you. Good luck tomorrow. We will all be in your pocket. Gentle hugs.
Poppy, One of the things my kids complained about was my DH and I were ALWAYS home. He worked from home when the kids were younger and they never had the opportunity to be home alone. It's your last trip together before your son starts college. Maybe you can use that as the reason you want him to come? Who knows how busy he will be in the future.
Blahndie, I don't think I've seen you on this thread before.
Welcome to Crazy Tow!. I'm glad you found us. I'm sure QM will be along soon to give you a welcome basket. She gives out the best baskets. Plus she's a hoot to boot. <--------- Hey that rhymes!!
Jan, It's always good to see you.
I miss you!!Rainy, I'm happy to hear that everyone thinks your DS's friend will recover. Pickled jalapeños sound yummy. I've got some experience with touching my eyes after handling one. It's not fun at all. Rubber gloves sound like an excellent idea.
Sandy, I'm glad the brains and bones didn't do you in. Good grief!
Val, I'm sorry the sores are still giving you trouble. I hope that resolves soon. Enjoy your rest on the porch and let us know if you want some snacks.
Cubbie! Wow that's weird. I was just thinking about you and wondering how you were. Good to see you and I hope you're feeling good.
Jumbled, I hope your bone scan and MRI went well. We are all in your pocket for your DR.s appointment on Fri. Please let us know how you're doing when you can.
Thinking of all the crazies tonight.
Love to all....quiet crazies too.
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Hey Octo! No fair sneaking in here while I'm typing away. Welcome home!!
OUCH! That sounds painful. More reasons to retire early!! I missed you too. I'm glad to hear Gabe survived the trip. I think you and Lucy will get along great when you visit. She likes wine too!! haha
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Good morning, crazies! Hot here and getting hotter.... Also there is a cat in heat, somewhere back of our building. It's been yowling and carrying on every night for a week.
Valstim, I'm sure your RO has said this, but sores from rads keep getting worse for a couple of weeks after the radiation ends. Then it takes a little while after that for them to heal. My recollection was that it was about a month after they ended that everything was healed up.
Octo, glad you went camping. If my computer behaved like that, I'd go off the grid a lot more.
MO appointment tomorrow, followed by Herceptin. At least it will be several hours of high-quality air-conditioning.
Made watermelon-lime popsicles yesterday. Sending 'em through the tubes to all who need them. Stay cool, everyone.
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Rainyc, that's what they told me. I'm so impatient, and now my energy is back, but I look iike a member of the Walking Dead Cast.
Hey Cubbie and Molly and Slow, octogirl Chisandy , hope your pocket is deep Sula, I'm jumping in. Iris sending gentle hugs.
I'll be on the porch, with a glass of dessert liqour from my travels to Curacao. A chocolate one today.
Hi to everyone.
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Building an extension to the CT porch, setting up pitchers of iced tea/margaritas/insert your favorite cool drink here, and plumping the cusions on the wicker furniture.
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ChiSandy..I know you have posted before and also on this thread about Oncotype being more accurate for older women. Can you explain why? My doctors have so much faith in that test even though I am young (39) and premenopausal. They keep mentioning the Taylorx rests to make me feel better
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Kathy, that was merely my speculation, since we older women have less time remaining in our lives for ER+ tumor cells to mutate after endocrine therapy.
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Hey Sula good luck with your tests! It is so good to see everyone else! Slow, it is especially good to see you! You have created such a safe and wonderful place. My pet scan showed a live node in my lung. I didn't even know you had nodes in the lung...It is off to the cat scan for me! I am following Slows lead and taking a road trip next week. My daughter and I are going to Yosemite, to a family wedding in Hollister (hot) then staying at Pismo Beach as we cruise down the coast! It will be really fun.
Queen Cat Mom thank you for the welcome basket. You are too funny and it turns out I needed that very much! Like one of our sisters Sugarplum says, keep calm and carry on
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oh dear, home with 2 newly replaced fillings, seems if you grind your teeth, overtime silver fillings Crack and need replacement but glad done. Got another one to fix next week, yikes. He was good and numbed me so no pain
Waiting for my plumberguy , yeah I do believe those guys do quite nicely, and a good career choice specially in an area with aging homes.
Tomorrow should be interesting, of course I freaked last night by Google ing my back thingie and will ask again if it could be cancer, the other guy said my back is too fragile to do a biopsy.
Lordie is this a crazy week
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Iris, feel better! Always a good thing to replace a crumbling filling--mine doesn’t remove amalgams just because of their mercury content; but when they fail, he replaces them with tooth-colored acrylics. Has your dentist discussed a mouth guard to prevent grinding?
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oh yeah, dentists in the past have alerted me and I would stop grinding ........then job related stress and lots of highway traffic driving
My teeth have hairline cracks so couple need help now, I really have good teeth and few fillings but the ones I have, oldies!
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Maybe it’s time to get some sealants over those cracks so they don’t turn into cavities or worse.
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Fraidycat... So sorry to hear about your lung nodes ... Your road trip sounds lots of fun.!
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Slow, I will text you early next week when I know if my drain is coming out. Oh heck, either way if you have time next week would be great for me. I really hope to return to work on the 22nd. We'll see if my doctors let me. Met my pcp this morning. Very pleasant woman. Got my blood work done as well for my BS appointment on Tuesday.
Iris, I am praying your back has nothing to do with the big C. Fraidycat, sorry about the lung nodule. Hopefully it turns out benign.
Octogirl, ouch!! Time to retire??
Sending hugs to Lucy. Rainny, ducky, QMC, Valstim and anyone I missed and the quiet crazies sending big hugs.
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ok, one more thing fixed, plumber just left so downstairs now working
Gonna stay positive about the thingie on my spine, this doc came to me as good referral so will see his opinion
Chicken thighs are simmering so dinner in work
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I’m the only one home for dinner tonight, and it’s too hot to light the grill (last thing I want to see in this heat is more heat), so dinner will probably be a light app at B’way Cellars, where I’ll pick up the wines we ordered. (Too hot to schlep them via cart, so will have to drive. Hope there’s parking despite street construction).
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hello crazies....
Iris... Good luck with the back thing any back pain etc sends me up the wall.
Fraidy,
Hope the lung node is no biggie and glad you are getting a nice trip. It's always surprising where they find these nodes etc on us!!!
Proud.. Glad the plumbing is working holding good thoughts on the back thing for you too!!
Octo...
Yes!!! I'm here in town so text me if you want to get together! That would be fun.
Just got my x-ray results back and everything is clear on my spine hip etc...since Advil seems to stop the pain and there are whole periods of time and positions without any meds where it doesn't hurt that according to the MOs office is a good sign .. So I'll talk to them tomorrow to see what they saybut it seems to be the piriformis muscle which is what she thought before. Also I am taking Advil which I wasn't doing since she said it relieves the muscle inflammation ... Totally helps.
I'm at physical therapy right now hooked up to a TENs machine
Take care everybody I'll be checking in again more regularly
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