CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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sandy, when the twin towers fell I confess one of my memories is of buying blackberries from street vendors parked in from of the towers, a good part of tbose days
Ran down to urologist to go over urine tests, this study is very picky about things and even though they did urinalysis at the cancer center, they felt my urologist should be part of the treatment plan. Dont ask, juxt to confuse little old me!
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WooHoo...so pleased to see the new pink site replaced with blue 💙👏👍
Iris ..How did you go at the urologist ?
It's good to see more restrictions easing here ..just hope cases stay low..
We've been doing more socially though ..have been having 7 people over each week for lunch and table tennis 🏓🏓..It's been great fun , but hoping they open our venue back up soon where we normally go 3 times a week ..65 if us play there...I'm missing everyone !
Hugs
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Major scanxiety today: have a brain MRI (to check for eustachian tube anomalies and/or--gulp--tumor on the auditory nerve) tonight and brain MRA (arteriogram) & MRV (veins) Fri. night. I'd been having pulsatile tinnitus in my L ear since mid-Jan., and tried to get an ENT appt. But the ENT dept. at my health system insisted I see an audiologist first, so I saw her in early Feb. and she found some mild-to-moderate high frequency hearing loss in the L ear. She referred me to the ENT, whose first available appt. was mid-Feb. But her ofc. called and said she was scheduled to do surgery that day, and moved the appt. to the next week. Unfortunately, that turned out to be the day of a funeral for a family friend, to which I had to drive to S. Bend, IN in a snowstorm. So this time I had to be the one to postpone...till mid-March. Of course, the pandemic shutdown intervened and all the ENTs were working from home, and could not perform the necessary exams over the phone or online. Next appt. was late Apr...but still under lockdown.
Finally saw her last week--she examined my ears and they looked fine, so she scheduled the brain MRs. She suspects the cause is vascular (a narrowed vein on the L side of my brain, an arteriovenous malformation, aka AVM--the latter unlikely since it's usually congenital and didn't show up on a 2004 brain MRI--or a blood vessel attached or too close to my eardrum) or a Eustachian tube that doesn't close properly (when I swallow, I get the normal "crackle" only on the R side). Outside chance there could be an "acoustic neuroma" (benign) or other type of tumor impinging on my L auditory nerve. If all my scans turn out normal, then the next step is a neuro-ophthalmologist to check my papilledema (eyeball pressure) to see if I have a cerebrospinal fluid (CSF) leak from somewhere in my spine, either cervical or lumbar. It's a possibility, since I have age-related degenerative changes on my "facet joints" (bones between the discs) including some bone-spurring. But I don't wanna go there just yet.
If the problem turns out to be a malfunctioning eustachian tube or a blood vessel too close to the eardrum, there's nothing that can be--or need be--done, and I'll just keep on learning to live with it. But if it's an AVM it'd have to be clipped off;; if a narrowed vein or artery, it'd need to be stented (they go through the groin); if a CSF leak my spine would have to be tapped (ouch) and plugged (if cervical, they go through the nose--eeuw; if further down, via a lumbar puncture and catheter threaded into the leak with an injection of either my own blood to form a clot or an artificial polymer gel that would harden into a patch--which might cause headaches). Doing nothing if the cause is vascular or CSF leak may be very risky: if vascular, the vessel could either occlude and cause an ischemic stroke or tear (dissect) and cause a hemorrhagic stroke; an untreated CSF leak could eventually risk meningitis or stroke. Question is, at my age, how long is "eventually?" Might make sense to roll the dice and keep an eye on it unless and until I develop other characteristic symptoms (headaches, dizziness, double vision). I do have to squint or even close one eye to read--but that's due to a "lazy" left eyeball I've had since childhood.
So I'm gonna wear something with pockets tonight & Fri., in case anyone here wants in.
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Sandy ...Sending love and prayers for you ...definately save me a spot in that pocket !
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Sandy, in your pocket! Please keep us informed. I've got all the digits I can cross crossed for good news for you.
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Sandy, I am also in your pocket!!! Having gone through MRIs for what turned out to be a tumor on the optic nerve, I can definitely relate. (and FWIW the surgery to fix it, done through the nose, was easy....though of course I was knocked out. But recovery was really easy. Much easier than my lx, actually. ) Anyway, I hope it is nothing but that whatever it is, they figure it out and do something! As you know, the waiting can be the hardest part! You need a plan... Sending virtual Covid-safe hugs and keep us posted!
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Thanks, you guys--you're the best. Tonight was the non-contrast MRI of the ears, then contrast of the brain. Fri night will be the MRa and then contrast MRV. Was a bit nervous about the orderly who escorted me from Radiology reception down to the MRI "bunker," because he was wearing his mask below his nose. But they let me wear my cloth one (w/o the wire).
But the scary part was the drive home. Was wondering what a WGN-TV mobile unit was doing a couple of cars ahead of me in Evanston. Rounded Sheridan Rd. at the lake from Evanston into Chicago--and not even a mile in the mobile unit parked and I had to detour to a maze of side streets: police had cordoned off a 3x3 block section of Sheridan. One of those side streets (which had no business being 2-way) was so narrow that my R side mirror folded back. Got home and found out it was a drive-by shooting--2 people injured when someone pulled up beside them, fired into their car, and sped off. The victim lost control and smashed into a parked car. Amazingly, the victims are in good condition at St. Francis Hosp. But no license plate or description of the perps or their car.
Think I'll take an alternate route home from Evanston Hosp. Fri. night--East Rogers Park is getting skeevier day by day.
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Sandy, it was actually nice in the middle pocket. Had room to activate all my magic charms to bring you through with the best of results. Have it saved for Friday too. PTSD scan anxiety is a horror- the intense nervousness of it.
When I worked for JCE in the 80’s I did many home visits in East Rogers Park.Many old people- younger than I am now- alone in their deserted apartment buildings- younger, often transients, off at work, or wherever. Some drug dealing going on. We were told to make the visits early in the morning before the druggies we’re awake. East Rogers Park could be tricky back then as now. I was often afraid of the stairwells. But scananxiety is worse. The only good part is the massive flooding relief we’ll all is well
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oh dear sandy , hoping all goes well in the end. Hate this thing of watch and wait. Dealt with that during my hydrocephalus business , crazy town is going to be busy. Had a cat scan yesterday, guy was in.a hurry and the position on the table plus putting my arms over my head, my did not like it.fortunately not long but had a awful headache when I got home.
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Sandy - In your pocket for the tests, as well. Sorry to hear about E Rogers Park area - that was where DD lived in Chicago.
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Iris ...in your pocket too while waiting for great scan results !
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Iris, jumping into your pocket too.
Judy, the far northeast part of E. RP (Juneway & Jonquil just w. of the alley w. of Sheridan) used to be known as the "Juneway Jungle" because back in the day it was an actual "hobo jungle" (due to all the rail yards). Of course, the name has since taken on a decidedly socially-insensitive connotation. I have a friend who recently bought a condo there, and though he dismisses my concern, I fear for his safety. Where Sheridan Rd. curves between the lake & Calvary Cemetery and reaches the city line at a large condo building (formerly the site of a Shell station), there's a traffic light at the intersection of Sheridan & Juneway (the w. 1/4 block of which has large and handsome brick single-family homes). In all my years of taking that route, I had never missed that light--until last night. I sat and waited with trepidation for it to turn green. Little did I know what awaited half a mile south! (And on one of the N-S alternate routes I had considered--Ashland--there was a hostage standoff right around the time I would have turned on to it). Ridge is boring, but safer...I hope.
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Sandy I want to let you know that my S I L had an AVM a very long time ago and has lived a long and happy 20 + years since then, After surgery to repair it. I had an acoustic neuroma in 2010, had a craniotomy and had an excellent recovery. Whatever it is, I am in your pocket. I have had your Scan-xiety for sure. Even had an MRI in The winter to rule out brain Mets Due to consistent headaches after returning from our family vacation last august. If it isn’t one thing it’s another. Please know I aM thinking of you and crossing every finger for you.
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Thanks, Molliefish! You have calmed me down considerably.
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I can’t believe the country music world has lost Charlie Daniels at 83.He was an icon. Got to see him once performing at a fair. Loved his music.
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I have a CT scan today to assess how the cancer is responding to.the meds in my clinical trial.
Was so anxious yesterday & last night I felt like an elephant was sitting on my chest.
This morning my dh oh so NOT helpfully read out loud to me the instructions the clinic had left which he'd dutifully copied out from the voicemail. I bit my tongue so hard. I added them up - this is going to be my 6th CT since Feb. I don't need the instructions for heavens sake! 😕
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"In your pocket" for the scan, moth. Hope the tumor's shrinking.
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back to report that indeed the tumors are shrinking! All except for 1 stubborn small met which grew a bit but the overall math is shrinkage and a positive report. Thx for hanging out crazytown waiting room peeps 😊
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So happy for you! I pray for continued positive results for you. 🙂
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Moth, good news!!!😀
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Moth, congrats over CrazyTown getting a lot saner for you!
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moth - Happy for the good results. May they continue.
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moth ..yay for great results !!!!
Iris ..How are you ????
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ChiSandy, thinking of you. And thanks to you and other folks who remembered me. Monday my brother went to the Adult Family Home and he seems pretty HAPPY THERE. Of course they are serving all the salty food he loves. With his heart failure that doesn't bode well for his longevity but I have to let this roll out and not micromanage. Four months of caring for him took everything out of me and my husband as well...for those who don't know my brother has mosaic down's, pervasive developmental disorder (a kind of autism), schizophrenia and now afib and heart failure...anyhow, getting ready for my hysterectomy on Wednesday. When I went to the pre-op appointment they for some reason had only planned to remove my uterus and not the one remaining ovary I have that has been giving me so much pain off and on for more than a year. Wild! All along my complaint is left side pain but because ultrasound showed nothing wrong with the ovary, they decided they should leave it in. Doh! Hope they remember to take it out as my uterus isn't that much trouble! I thought about backing out and then had another pain attack and so that has given me some backbone. Can't wait to be done, I hope it works! Hope it will be my last surgery ever.
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In your pocket for your hysterectomy, eggroll! Hope they at least eyeball the ovary before deciding to leave it in.
So I gave the rundown in some other threads, but not here. Brain and vascular scans were all negative. But the IAC (internal ear canal) scan showed an extra blood vessel ("of unknown, possibly fetal, etiology") adjacent to my internal ear canal on both sides but much closer on the left. So I AM actually hearing my own pulse--but the flow itself is normal, not turbulent. ENT says keep on doing whatever I've been able to cope with it in order to be able to sleep. The knowledge that it's nothing that can kill me is comforting.
But the other day I suddenly got a huge threadlike floater in my L eye (like a mutant fruit fly that flips direction when I move my eye and pay attention to it). Knowing its suddenness might mean a retinal detachment, Bob had me see our family friend who is a vitreo-retinologist. He found a normal "aging" vitreous--the jellylike protein stuff inside the eyeball that shrinks starting in middle age; floaters are bits of the protein precipitating out. But he noticed a small blob at the bottom of my R eye, in the choroid (lining) just behind the bottom edge of the iris. He said because I'm very fair-skinned melanoma is not out of the question, and because I had breast cancer we need to rule out mets. He mentioned an ocular oncologist at UIC (Illinois Eye & Ear Infirmary).
I asked my MO (who has been "out of office" since late March, not even answering patient portal messages) and her colleague answered back that in 39 years treating breast cancer exclusively, he's seen only 3 ocular mets--all in patients with more agressive tumors than mine. He used the phrase "extraordinarily unlikely," but said I'd still be wise to get it checked out. Retinologist faxed the consult notes last night. Spoke to him today and he said that except for size, it had none of the hallmarks of ocular melanoma. He is contacting the ocular oncologist and will pull strings to try to have him squeeze me in this week. So he basically talked me down off the ledge and back in through the open window.
I'm more worried about my MO, though, since she's been incommunicado for so long. Hope she hasn't caught COVID. (It already killed my primary care doc, at a different hospital system). The colleague is constrained by HIPAA not to tell me, but I will still casually ask whether he thinks I need to switch to him for my Oct. checkup.
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oh dear, hope everyone comes through their surgeries.
Well i had my port removed as it looked strange, surgeon thought it was basically a lot of use, cool. So then on sat i had my new chemo done in a vein. Then next friday they will put in a new port. Crazy.
My immunotherapy therapy failed big time and I had serious progression so off the trial.
New chem drug is naveline, it is a short infusion but very dangerous if it leaks out a vein. Nurse said it is usually done by port and she was very concerned about delivery thru a vein. But she was a pro and we worked together, i know what it feels like if it breaks through a vein.
Wicked day, ac is not working and utility guy is still trying to fix it, apparently it needs a part..
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Iris ...so sorry to hear that the immunotherapy wasn't a success...and all the troubles you've had with the port ..I hope you get great results with the new drug .
Eggroll ..it's good news your brother has settled in well...you've certainly had your hands full ! I'd be insisting the ovary goes ..! When I had my hysterectomy for the start of a prolapse happening they took everything..including 2 normal ovaries ..
Sandy ...hope you can see the doctor can squeeze you in ..awful having to wait and worry ..
Hugs to all
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Iris, so sorry about the immunotherapy not working--hope the new drug can be safely administered and does the trick!
Jackie, in your pocket for your upcoming surgery as well!
The "crazy" is on hold around here--after yesterday, I'm a lot calmer about my R eye than I was on Wed. And Dr. Merkel messaged me back that my MO will "definitely" see me in Oct. (I wonder if she simply--wisely--got the heck outta Dodge and up into the country for awhile; or was pressed into service elsewhere in the NorthShore system or beyond. She is an active member of Doctors Without Borders).
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Went for an overdue eye exam today. All good. No changes from last year. I really like my eye doctor as they use a Clarifye machine to check/verify prescription & retinal imaging - no refraction required. Glad to hear no changes to my blue blocking computer glasses & prescription sunglasses. Even though cataract surgery corrected my distance vision so it is legal to drive without glasses, I use prescription sunglasses with a little bit of distance correction.
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I wear progressives (one pair of Transitions, one with very dark sunglass lenses). They're 18 mos. old. I had computer progressives made 2-1/2 years ago (blue-blocking); but I'm finding that for offline reading (and working crosswords), 2-yr-old Warby Parker prescription readers work best. My retinologist suggested that because my distance vision was much sharper when looking through a pinhole (corresponding to squinting), I might want to look into getting some single-vision distance glasses for driving too. (Will look at Zenni or Warby online for frames with which I'm familiar).
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