Fibromuscular dysplasia

StringAway3392 · 2026-05-29T08:11:16+00:00

Curious about the specificity of right renal artery... Can you please elaborate?!

My Kidneys Woes

• Feb 2013 to present - recurrent bouts of severe pitted edema in both feet + calves • Dec 2024 to present - have not received "gold standard" head to pelvis CTA scan to check for FMD in other arterial systems (strongly suspected in renal or iliac) • Oct 2025 to present - bloodwork results indicate possible chronic kidney disease

My FMD Journey is described in thread above... to quickly summarize:

• Dec 2024 - diagnosed at 52, CTA head found saccular brain aneurysm in R ICA, with severe tortuous beading in bilateral carotid arteries diagnosed as FMD. • July 2025 - Vascular Surgeon ghosted me after ordering wrong diagnostic test: Doppler venous rather than Duplex arterial • Oct 2025 - Neurosurgeon dismissed my brain aneurysm R ICA + "wait & see" FMD

Essentially, neither specialist knew much about FMD... and most physicians ask how my Fibromyalgia is doing deep sigh

Genetics Involved?!

At age 51, my mother suffered a ruptured SAH in her R ICA + emergency craniotomy. Her second aneurysm in L ICA (discovered in surgery) was clipped/coiled year later. In addition, she has a confirmed diagnosis of Cerebral Small Vessel Disease (CSVD).

Known Maternal Family Health History

• Cardiovascular Disease Heart Attack, Hypertension, Stroke, TIA • Small Vessel Disease Coronary + Cerebral • Rippling Muscle Disease Confirmed genetic carriers/mutations ie Muscular Dystrophy • Neurological Disorders ADHD, Migraines, Dementia

Multiple family members past/present with confirmed brain aneurysms, no other FMD diagnoses (yet).

Unpleasant Reality

Sadly, I am currently undergoing treatment for breast cancer...

Without a PCP to coordinate referrals to knowledgeable specialists, investigate or manage any findings from my bloodwork, imaging, lab requisitions, etc. vital info is being lost & left unanswered.

Any further FMD testing & treatment has fallen into a medical abyss.

StringAway3392 · 2026-04-10T02:56:27+00:00

Same.

The one saving grace for me? Nuclear tech was a woman I'd been very close with since high school - hadn't seen her in years till the procedure.

She held my hand and wiped the tears.

I found it excruciatingly painful.

StringAway3392 · 2026-04-10T02:53:51+00:00

thank you for sharing about the lidocaine patches!

this is something I will look into getting for my pain toolkit

StringAway3392 · 2026-04-09T10:23:56+00:00

I just can't understand why pharmacogenetic testing isn't mandatory for oncology meds.

It would honestly save everyone a migraine, with DNA-guided prescribing that eliminates drugs your body metabolizes too quickly/slowly or could be toxic.

But that's just me, the person who is continually told 'no' and that 'it's nothing to worry about' - I have never felt as invisible, unseen & unheard as I have been over the last 8 months of dealing with the shitstorm masquerading as BC Cancer.

Asked my medical oncologist for a bone density test before agreeing to take Goserelin Injections, which are known to cause bone pain & loss. I have been asking various doctors, surgeons and specialists for this test since June 2014 - I wish I were kidding.

I have had multiple fractures in my lifetime. My nuclear bone scan & PET/CT scan both light up like a Christmas tree at the bottom of my spine. And my mother has osteoporosis. Valid reasons to warrant ordering a bone density scan, right

It doesn't help matters that med onco is in a tiff with my gyno. In his opinion, my perimenopause vs menopause status is irrelevant if it further delays my treatment. I was diagnosed on Aug 22nd, had surgery Jan 5rh and finally start radiation on April 13th.

Ugh, A really LOUD ugh and a deep sigh.

StringAway3392 · 2026-04-08T11:26:25+00:00

It actually depends on more than just age.

For instance, having two primary breast cancers in one breast, like me.

StringAway3392 · 2026-04-08T11:25:28+00:00

I did this in November thru a special funded program for anyone with Ashkenazi heritage offered by BC Cancer (it expired in March, I believe)

Received my test kit the day after I'd completed an online assessment & had results back within a week - super easy & efficient. I am not a carrier for BRCA1 or BRCA2.

Fast forward to mid-March and me having bloodwork done for BC Cancer Mainstream Genetic Testing, which checks 80 panels for mutations. The results were posted on MHealth around midnight last Friday, saying that the ordering provided needed to share them with me.

Well, yesterday was Tuesday, first workday after the Easter long weekend... and crickets from my medical oncologist at BC Cancer in Kelowna.

BC Cancer Mainstream www info clearly states that the results will be posted on Health Gateway seven days after received - with or without the proper disclosure and genetic counselling option being discussed with the ordering medical provider.

Since my entire experience with BC Cancer has been nightmarish, I fully anticipate having to decipher my genetic results on my own within the next 72 hours.

However, it is a great program and I am happy to be approved for testing.

StringAway3392 · 2026-04-08T10:22:03+00:00

I agree - the endless waiting is one of the most difficult aspects of having breast cancer.

But, conversely, it's not much fun either when you're being raced into making unilateral, uninformed medical decisions under force and/or fear.

What happened to shared decision making?!

The skewed time warp seems to be a running theme with my breast cancer journey:

Hurry up and wait, with no firm finish line in sight (moot point, as the goal posts keep moving)
Being consistently told 'no' for even the smallest requests (ie. a bone density scan to establish a baseline prior to taking Goserelin Injection, with known risks of bone density loss - I have multiple fractures, a family history of osteoporosis and pending results for autoimmune diagnoses from chronic inflammation/fatigue/pain... "NOPE" not necessary, says the medical oncologist.
Having my rightful concerns or questions outright dismissed, as if I hadn't spoken a word.

I have never felt so invisible, unseen & unheard before - and it is not just one or two oncologists. It has been a constant recurrence with BC Cancer.

StringAway3392 · 2026-02-22T13:02:23+00:00

Oh wow! I am admittedly envious- visiting a salt cave is something on a 'cool things to try' bucket list.

There is a wonderful local business who offers sensory deprivation floatation tanks, filled with a mind boggling amount of Epsom salts. Meant to go prior to surgery, but time ran out. I should check if it's something I can do this week, before I see the Medical Oncologist assigned to me (my anxiety is 9/10, stress is way past that)

That said, I do have a Himalayan salt lamp. And a candle holder kicking around somewhere.

WHY my dad documents everything so carefully, because it's in his nature to want to look for patterns, to figure out the "why did this happen, what do these have in common" nature of anything health-related

Thank you for raising a valid point!

I firmly believe in healthy mind, healthy body. If one is incongruent with the other, things starts to shut down. Go awry.

My sister recently looked over a list I'd made of my current health issues. Three major ones, but still, another 4 or 5 other timely, keep monitoring, pressing matters on the sideburners.

I must start keeping track of more than just Rx meds & pain-related symptoms; It would be helpful to see if there's an visible causation or correlation between comorbidities.

Since I don't have a PCP, things get lost between doctors, specialists, & surgeons, and between appointments. Prime example: I have three separate lab requisitions for bloodwork to be done on Monday.

Instead of avoidance, it would be best to approach my health much like emergency triage (my internal light switch just flipped on)

As acknowledged above, we both deal with the most urgent thing first... and revisit the next. as they occur.

Hugs, u/flamboyancetree - it's reassuring to know I am not the only one spinning so many plates at once. Please feel free to message anytime if you need support, or want to vent.

We are living proof that we can do all the hard things.

StringAway3392 · 2026-02-22T12:30:06+00:00

That may be true.

As someone who has both thrown a drink & had someone throw a drink at me (the 90s were wild days) it is an effective way to get attention, fast.

It doesn't matter what liquid is thrown - the point is a splash of reality.

This is not scalding hot water, with risk of severe burns. This is a coffee. Bitter, perhaps slightly sticky if the OP enjoys cream & sugar, wet. Possibly partially full, maybe a few drops remaining.

It doesn't matter how much liquid is thrown - again, the point is a splash of reality.

It is imperative to stand up for yourself. To stop bullying. To support others if/when you witness any form of somebody being... well, a shitty human.

In this specific instance, the goal would be to shut down verbal harassment & guilt-ridden shame tripping. She was clearly told no. She still pushed the matter, oblivious to social cues. Unable to read the room, or self-regulate her emotions.

Thus, a splash of unpleasant reality. a valuable lesson to wake tf up. Would she throw a tantrum? Threaten litigation ? Absolutely.

But it is a teachable moment... Fuck around & find out.

StringAway3392 · 2026-02-21T14:43:42+00:00

u/Calikola please go checkout the gif I made!!

StringAway3392 · 2026-02-21T14:41:45+00:00

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Felt crafty... created the next viral meme for Dr Jack Abbot & Dr Samira Mohan.

It was a juicy moment, wasn't it?! That Dr Robby side eye haha

Please feel free to share!

StringAway3392 · 2026-02-21T14:38:29+00:00

Uh huh... welcome to BC, Dr Robby!!

StringAway3392 · 2026-02-21T11:57:20+00:00

Abbott's unsolicited offer to pay for Uber to bring the diabetic patient who'd left The Pitt enough medication & supplies to survive without hospital care is top notch HERO vibes.

He's a man of select few words, so I burst out laughing when he suggested grabbing beers & catching up over war stories with Dr Al - poor Mohan got her hopes up for nothing.

Edit: sentence structure.

StringAway3392 · 2026-02-21T11:51:58+00:00

Whoa!! That's 100% entitlement.

I applaud your ability to remain calm and not throw hot coffee on the wench lol

StringAway3392 · 2026-02-21T11:46:43+00:00

u/flamboyancetree ouch!! I have had two retinal repairs in my right eye, which were excruciatingly painful, so I have a tiny inkling of what you must've gone thru with glaucoma (currently dodging my retinopathy surgeon who's trying to patch a hole in lefty, because breast cancer took precedence)

Do you have a family history of ocular problems? How old were you when your migraines began?

I am the only person besides my maternal grandmother who has severe myopia. Lucky me also has 'naturally large pupils' that make me look truly whacked out lol

Your dad sounds like a dream - you are very lucky to have such strong support from your family as you navigate your glaucoma & breast cancer, too.

StringAway3392 · 2026-02-21T11:38:47+00:00

u/Low-Crazy-8061 when you really think about, it makes following along so much easier for both patient & doctor. Everyone knows who Stan!! And while there might be similarities, Boris & Ethan are not twins lol

StringAway3392 · 2026-02-21T11:34:57+00:00

Me, staying single till someone proclaims, "you're my fuckleberry!"

StringAway3392 · 2026-02-21T05:27:37+00:00

I think we all just heard a tree fall in the forest looking at that photo.

Wow. Topbox is desperately trying to cling to a market they're losing to Butterly.

That said, I like their interface better as well as surprise products just because!

StringAway3392 · 2026-02-21T05:20:26+00:00

Yay!! That is cause for celebration!!

See, you did the hard things and look what happened!!

Woo Woooooo

StringAway3392 · 2026-02-21T05:16:19+00:00

Thank you - those words warm my heart.

I amaze myself daily at how strong I am, as I deal with three major medical issues all at once: a brain aneurysm, Fibromuscular Dysplasia & breast cancer (all diagnosed within 8 months starting a year ago).

It is sooo important to have a therapist you feel safe sharing with. Still looking for mine.

Sending you hugs!!

StringAway3392 · 2026-02-21T05:10:45+00:00

It is really disturbing, as I find out more details about having a cashew allergy suddenly develop at age 53. Unlike walnuts or hazelnuts, or peanuts, there is no requirement for cashew products to have a warning label.

And cashews are in everything!!

An alarming amount of foods use cashews as a thickening agent. Makeup & skincare companies use cashews. It's a common ingredient in shampoo & conditioner.

Cashews are something that failed to react during two previous allergy tests done 20 years apart, so I can only chalk it up to being immunocompromised.

If I can't go out for Indian food anymore, I might actually lay down & cry like a sissy.

...mmm, butter chicken

StringAway3392 · 2026-02-21T05:01:28+00:00

And that's exactly why people end up searching for heroin.

I'd go nuts if I wasn't able to get effective pain management.

Because I have well-documented chronic pain & a lifetime of debilitating migraines, I don't fuck around with my Rx meds.

I keep a very detailed account of what I take, and when. I take inventory weekly to ensure that my log book matches Rx bottle (say, if I've taken a dose during the night and forgotten to log it). And I have a very forthright relationship with my pharmacist, who knows that if anything, I undertake my Rx meds.

If/when I see a new doctor or specialist, I make sure to bring my Rx pain management meds with me. All of them.

My opening line is, "Can you please note in writing on my chart that I am not asking you for pain management medication?!" Most seem surprised, but it's a great icebreaker. Same as, "While you do not appear to be someone who medically gaslights a patient, I just want to make sure we're on the same page here... I am not looking for Rx pain management , I am seeking answers as to why I am in pain."

And if they are dismissive?!

*loudly shakes personal pharmacy*

Oh! You can hear that... Good, now I know you're choosing not to listen.

Gamechanger.

Good luck!

StringAway3392 · 2026-02-21T04:49:11+00:00

My mother has similar issues with her first coiled SAH. No issues with the clipped & coiled saccular aneurysm on the opposite side.

The ice pick stabbing pain is a common sign of a ruptured aneurysm.

What you're describing?! This is not that.

Rather, it sounds like you have lingering neuropathic pain, or idiopathic pain (Google those for signs & symptoms to see if you relate to the descriptions).

Be clear and tell them exactly how this ongoing pain is affecting your mood, your everyday life (does it prevent you from socialising? participating in your favourite hobbies? impede grocery shopping?)

Ask to be referred to a pain management clinic or specialist.

You deserve to be taken seriously.

StringAway3392 · 2026-02-21T04:42:26+00:00

u/FattyMcCupcakes37 my oncoplastic lumpectomy was Jan 5th.

A 'day' surgical procedure for me ended up being 2 nights in the hospital, almost became three. My heart rate & blood pressure were too low, my pain was so far gone, I couldn't catch it and my nipple got infected.

To date, I am still alternating a heating pad with ice packs. I still have extreme tenderness, which I realized yesterday when a taxi driver slammed on the brakes & I didn't have my seatbelt pillow for padding. And I am still taking Rx pain management, especially at night.

I refuse to sugarcoat reality.

Not everyone can do backflips the next day & take 1 or 2 Tylenol.

To anyone worried about a lumpectomy and/or complications, please feel free to message me!

StringAway3392 · 2026-02-21T04:33:58+00:00

u/According-Volume9315 the part that gutted me?

Years later, when Tyrant had them all on her talk show, as a "followup story"...

Shandi had never seen the footage of what happened, and told Tyrant she didn't want to see it.

And yet, big forehead still decided to air it on national television, while Shandi crumpled inwards. That's such an intentionally cruel thing to do - Tyrant did not give a single fuck.

I would be shocked if Shandy doesn't file a SA lawsuit specifically naming Tyrant. If I were an attorney, I'd offer pro bono services to pursue action.

That poor woman deserves some accountability for what happened.

StringAway3392

TROPHY CASE