My stent has taken a holiday it seems

[Moltroub]

It seems by my latest imaging, my stent is gone off on vacation. At least the Radiologist didn’t mention it at all. He did mention the coils. Didn’t mention if the size of the neck has increased, didn’t mention it at all! He did mention blood flow being in the aneurysm. Just in case you didn’t know, my aneurysm was a 5mm multilobed with more than 24 daughter sacs. I get to say more simply because Dr. Q-W stopped counting😂 I started having bad brain days mid August, nothing new but they kept getting worse and not better. Some of it due most likely to one of my great nephews dying the Sunday of Labor Day weekend in a motorcycle accident and then a few days later a nitwit delivery driver came down the gravel driveway and almost ran over Ohana. I flew off into a rage, cussing with every word I knew and couldn’t stop. This upset the dogs who then got a bit more aggressive, fortunately I knew then I needed to stop and do my relaxation breathing. What fool drives 15-20 mph down a gravel driveway when they see or hear the dogs? We heard him because he lost traction up by the road where there’s no fines in the gravel which usually helps slow people down instead of speed up, just saying. Stress doesn’t help at all, not one tiny itty bitty iota, zilch.

Another week or two and had my appointment at the neurologist’s office and told my NP about the headache on top of my right side of my skull that burned like the dickens. What does the young man do? Thanks for asking! He presses a spot on my shoulder and I shot up, he shot back on his wheeled chair and BH was trying to get into the wall😂 yes as a matter of fact it did hurt and it started that headache all over again! So good to know it’s just the pinched nerve as that culprit and I just need to take the triZanidine for it. I’m not good at remembering to take the meds I can take whenever needed also known as PRNs. He also ordered the three images that day. So a six week wait and got them this week! The lady who admitted me said the long wait was because of the order for three, most folks don’t get that many. I said I have and never had to wait that long but it’s all good I’m still walking, talking and wiping my own arse. All this said because my stutter is increasingly worse and every trick I’ve learned helps a little but not nearly as much as they should. Worrisome is my relaxation breathing isn’t much of a help either. Bad brain days suck is what I’m saying. So now the findings…

Heck it’s just easier to copy and paste isn’t it? So here’s the MRI of my brain-

FINDINGS: The ventricles are normal in size. Signal void is seen in the left suprasellar region. This is consistent with prior coiling of an intracranial left internal carotid artery aneurysm. The coil pack is seen on a prior CT from 4/19/2018. Focal tissue loss involves the anterior body of the corpus callosum. Symmetric areas of T2 signal change are seen in the adjacent portions of both frontal lobes. These likely represent areas of gliosis. An acute infarct is not seen. Imaging of the pituitary gland was performed at the same time and will be reported separately. The pituitary gland is enlarged for age, this may represent an adenoma. No significant change is seen from the prior MRI of 6/4/2024.

This is the MRA-

FINDINGS: There is no intracranial arterial occlusion or stenosis. There has been prior coiling of a posterior projecting terminal left internal carotid artery aneurysm. There is partial patency of the aneurysm with flow seen in the aneurysm measuring 3.7 mm by 3.4 mm. No other aneurysms are seen. The area of patency is similar to that seen on the prior MRA from 6/4/2024.

MRI pituitary (it’s already been diagnosed years ago as an adenoma when I was in NSICU and still able to get contrast dye)

FINDINGS: The ventricles are normal in size. Signal void is seen in the left suprasellar region. This is consistent with prior coiling of an intracranial left internal carotid artery aneurysm. The coil pack is seen on a prior CT from 4/19/2018. Focal tissue loss involves the anterior body of the corpus callosum. Symmetric areas of T2 signal change are seen in the adjacent portions of both frontal lobes. These likely represent areas of gliosis. An acute infarct is not seen. Imaging of the pituitary gland was performed at the same time and will be reported separately. The pituitary gland is enlarged for age, this may represent an adenoma. No significant change is seen from the prior MRI of 6/4/2024.

Let me break these down and give some definitions because those Radiologists speak a different language because they’ve learned more words and more about the brain and imaging then we have. A pituitary adenoma is not cancerous but it can sure mess with hormones and other things like weight. I know the weight thing because I lost none in 26 days of NSICU and that’s the time they checked since I wasn’t eating much at all and got threatened with a feeding tube if I didn’t start eating about a week into my stay I think it was. I’m also gaining weight which is not a good thing at all but I blamed it on not being able to do much of anything since I’m an accident waiting to happen. I’m also weird because I don’t like to eat when I don’t feel good, bad brain days help me to not feel good, being a viscous circle. Don’t feel good, don’t eat, don’t eat, worse brain days and repeat. It’s what is known as a “hot mess” down here. So it is in fact an adenoma not just a possible one and at last MRI pit was 11 mm no clue to what it’s grown or reduced to, the thing changes size on every image for it.

Now for the rest - ventricles are this Neuroanatomy, Ventricular System - StatPearls - NCBI Bookshelf if you like YouTube videos better, try this https://youtu.be/P49ZJWpu06k?si=8_7shNVAlyyKl58Q

Focal tissue loss of corpus callosum is damage to the nerve bundle which tells the left and right hemispheres to talk to each other (communicate) and to get their act together (coordinate) mine doesn’t like to play well with each other since I ruptured. The partial patency bit means my aneurysm isn’t occluded and still getting blood flow despite the stent, suck a duck! Ok, we knew it wasn’t occluded from the last images but it sounds like it’s getting more in that little bugger. Where the heck is the neck size? Last one showed it had opened up a bit more and this guy doesn’t mention it nor the stent who must be on vacation/holiday. They’ve seen it before so makes me wonder… The T2 is radiology speak try this Mysteries of T2 FLAIR on MRI: A Comprehensive Guide The gliosis is most likely my brain responded with due to the SAH.

BH didn’t remember the term so reached out through my patient portal and sent a message to Dr. Q-W. Meanwhile I sent a note not to eloquent to my wonderful Sergey asking what the heck? Where’s my stent? Etc with some not so nice things about a Radiologist needing to go back and stay awake through the brain part of training, just saying. The stent was placed at the ACOm because my aneurysm isn’t occluded at the LICA bifurcation so she stuck it there. I know that because it’s in the medical records of that angiogram in Dec 2020 which the radiologist had access to, my new cardiologist had it a year or so ago.

Sergey didn’t respond Friday when I read the findings and sent him a message through my portal. He is a busy man, I get it and he even might have taken some time off since they were in the stressful process of building a home we talked about six months ago I think it was as we were commiserating on how expensive it was to bring soil in for land that’s less than level. I’d also sent a message to Dr. Q-W who you all know I like very much just to let her know they were in. Im not sure if y’all know but that office has had some changes. Used to be Ms. Ryann (like her too) would message me back and say she’d let the doc know. Easy smeasy!

Now I’ve got to get through a RN, who then tells it to Ms.Ryann who then talks to Dr. Q-W and then she or the RN gets back to me. It’s now like the telephone game we played in grade school where we all sat in a big circle being 35-40 of us, yes class size was big in the ‘60’s, one of us would start off with a little something the teacher wrote down and we would whisper it into the ear of the person sitting next to us. It would be hilarious by the time it got back to the student who started it because it was never, ever correct. Do you remember it?

Anyhow BH gets in my portal and sends a message to Dr. Q-W, the RN was short and curt saying I would have to wait for the ordering provider. Well let me tell you that got me all up in a dander in a New York minute when I read it. Quick to reply I told her I in fact had not written it she had replied to the wrong person and since she didn’t know us explained BH had to hear for 21 of my 26 day stay that I may not make it to the next. Also told her BH was just doing what Dr. Q-W said either of us could which was to contact her with ANY questions. I told her we always had Dr. Q-W for appoints until we met Ms Ryann and then we got her who also told us we could contact her with questions. So that’s what was being done. She didn’t reply, guess I didn’t make her day. I am assured that it was nice.

Yes my questions have dwindled since the beginning I used to have a lot because a lot was going on but I called and then Ms.Ryann taught me to use the portal. (Dr. Q-W met with the three of us until she was comfortable we were comfortable with Ms. Ryann) I am concerned that something happened to our wonderful relationship when I went into severe anaphylaxis with the diagnostic angiogram to check the stent. It’s really sad and I’ve got no way to ask what’s going on with that. Don’t want to sue the portal because it’s part of my medical record but something is going on or I’m just paranoid which would be a phenomenon in itself but may speak to something not right in the Houston area of my brain.

Thanks all for letting me share, I’ll update what Sergey says. I’m guessing he is reaching out to the radiologist for some clarification since he doesn’t get the images I don’t think, just the findings. I really want a kind med student or Resident to take some time, use their colored pencils they got back in their first anatomy class and color in my brain damage from one year to the next so I can see if it’s growing.

[DickD]

Hang in there, @Moltroub! You’ve got rather a lot going on! I’m not sure what the better answer is about the stent! I guess it would be best if it is still where it is supposed to be, though if there’s flow in the annie, I guess it is not doing the job you need it to.

We used to play the whispering game at school as well. In the UK we used to call it Chinese Whispers, though it has nothing to do with China or the Chinese so far as I know!

Very best wishes!

If you need us to take a bit of work away from you, you will say won’t you? I’m sure we can all look after each other.

Lots of love,

Richard

[Shinykai]

Thank you for keeping us updated @Moltroub sending lots of love and I hope you hear back from your care team soon.

[Moltroub]

Thank you so much @Shinykai and @DickD for your kindness! And yes Mr. Richard if I start struggling here, I will let you know.

[darlysaar]

@Moltroub, I’m sad to read about your nephew. Sending condolences to you and your family.

You’re so attentive to all of us here that I find myself occasionally forgetting that you’re also navigating your own brain woes on the daily. I’m sorry to hear about the adenoma, your bad brain days, and the blood flow into your aneurysm around or through the (presumably vacationing) stent. I hope you get a little more insight into the situation soon.

The game of telephone sounds like (no) fun. Good thing you know how to set folks straight with the quickness. That’s a skill! I recently had a question about my blood thinners, so I called a number on a past visit note. I expected to A) leave a message or B) speak to a receptionist who might eventually get me to a neuro nurse. Turns out I called my neurosurgeon’s direct line, and when he answered I was so caught off guard that I stumbled my way through a paragraph of gibberish before I collected myself enough to ask a logical question. I’m sure he thought I was having a stroke!

I admire you so much and appreciate the support you give all of us. I’ll be hoping for better days for you.

[oct20]

@Moltroub

I’m really hoping that you get a better answer soon and that the stent is still in place. You have a lot going on with your health. Please take care.

[Moltroub]

Thank you @darlysaar and @oct20! Wow the direct line!?! I always talk gibberish so that wouldn’t be a shocker for me

So Sergey did reach out yesterday on my portal, he thinks nothing’s much has changed but told me to ask my Neurosurgeon team to review the images. He’s pretty good about not guessing and has a way as most medical folks do in avoiding head on confrontation especially when I ask explicitly direct questions about other medical professionals. Guess there’s a fine line between full disclosure.

I imagine that sweet young man as taking a deep breath when I ask how the heck can you tell the adenoma hasn’t changed from the last time when he doesn’t mention a size much less know that it’s already been diagnosed as an adenoma? The last time it was a bit over 11mm with that Radiologist suggesting that it appeared to be growing. I don’t get the MRI pit very often and I think it started out as a 3mm, to an 8 then back down to 5 and up again to the 11. It’s non cancerous, thus adenoma, but it sure is a yo-yo.

So of course I got on the portal and sent a message to Dr. Q-W yesterday and waiting for Brittany to tell Ms. Ryann to tell Dr. Q-W and waiting for an answer back. But this time I suggested I would in fact be willing to make an appointment with the Doc but if she wanted to see me, I’d have to confer with my chauffeur (aka BH) for a date or do one of those zoom calls. Not sure what the hospital calls them but hopefully they know what I mean.

Y’all do remember me saying a time or two that it takes patience to be a patient, right? This is what I mean. They’re not trying mine, but they sure are getting on BH’s last nerve🤪. BH doesn’t like to do relaxation breathing, so sometimes I practice avoidance behavior and read a book or piddle around. We learn lots of coping strategies don’t we?

Hoping to get in update from my Neurosurgery team as Sergey calls them within the next week or two.

[Moltroub]

Last update​:joy: The stent is where it’s supposed to be, up in the ACOM which is a bit confusing since the aneurysm is in the LICA bifurcation but that’s where she had room for it I guess. At least it’s not in my big toe.. This is what they say

“The stent helped prevent the aneurysm from regrowing and re-rupturing. Damage after the stroke occurs regardless of the stent being placed (since it was to help the aneurysm and not because of another reason).

Although there may not be a clear-cut answer to why you are having more challenges with cognition, if your work-up from your PCP and neurology have ruled out other possibilities (changes in medications, updated lab work, addressing lifestyle modifications), then we know that there are also long term effects of a stroke (aneurysm rupture) which can cause delayed cognitive changes, including challenges with memory, attention and issues with staying on task or being able to problem solve/plan, etc. We can try getting back in for cognitive therapy if you are interested.

Additionally, to optimize brain health and function, Dr. Wolfe and I recommend:

1. Minimize sugar intake. Abstaining from processed sugars is very helpful to brain health and reduces craving of sweets.

2. 30 min of aerobic exercise (best outside, such as a brisk walk) at least 5 times per week.

3. At least 7.5 or 9 hours of sleep every night. The sleep cycle is around 90 minutes, so sleeping in 90 min increments is important.

• Going to bed and waking up at the same time each day

• Doing a quiet activity until drowsy if unable to fall asleep within 20 minutes

• Training the body to associate the bed with sleep. In other words, using the bed solely for sleep and intimacy: do not watch television, listen to music, read, or use/talk on the phone while in bed

• Developing a relaxing nighttime routine

• Creating a good sleeping environment (e.g., dark enough, quiet enough, right temperature)

• Engaging in regular physician-approved exercise, but not in the two hours before bed

• Avoiding clock watching

• Refraining from caffeine at least six hours before bedtime

4. No alcohol or tobacco use”

I think these are mostly doable for me since I do most of them anyhow. I have never, ever been one to go to bed and fall asleep for as long as I can remember. I have always read except for a year or two after rupture. We don’t have a tv in the bedroom, never have. There are a couple I’m still working on but hopefully their suggestions will help others. Ms Ryann also offered to write a prescription for CBT but we don’t have one in an area I’m comfortable driving to, I don’t think. I’ll have to look again.

[Karla]

Glad they found the stent! Thanks for sharing those tips from Dr W, @Moltroub. I’ve been on a “mostly” Keto diet for the past two months in an attempt to lose some of the ~18 lbs that I gained last year (I believe the weight started after my calcium channel blocker, Amlodipine, dosage increased to 10mg). I have since lost about 7-8 lbs and cut out “most” sugars (within reason) and substitute with Monk Fruit sugar, which is surprisingly sweet! I was stricter about carbs the first month, but allow a “treat” or two on the weekends now that may include a chocolate croissant or baguette .

I’ve managed to stop the Gabapentin at night, which I was prescribed to help me to stay asleep - I was waking 2-3 times a night and feeling miserable in the morning. I’ll see if I need to start back after this angio.

[oct20]

@Moltroub Finally a good answer! Yay! The stent is still in place!

My neurosurgeon told me after the angiogram checkup that my stent had moved but it was still doing its job. Last ear, after my MRA/ MRI checkup he said that the stent was embedded in the artery and that is how it is supposed to be.

Take a walk, breathe some fresh air and relax.

[Moltroub]

@Karla thanks for the suggestions! I was on Gabapentin for spinal issues for a few years before I met Dr.Q-W and was changed to Lyrica. Sergey suggested a tweak on how I take it as taking 3 at one time made me goofy. My downfall isn’t sweet, I like savory mostly but dang do I like carbs so I’ll definitely have to watch them. And I do need to be aware that I’m supposed to eat. I forget to eat when I’m busy or don’t feel good. I’m also not allowed to cook unsupervised so meals have to be easy which means sandwiches, salads in the warmer months or something in the microwave or the air fryer that turns itself off when done which relates to processed foods.

The white oak acorns are coming down and the deer love them. The deer turn on the motion light at the garage, light comes in to the bedroom. I know they’ll learn to avoid that part of the driveway they do every year. When it gets dry enough for the tractor, I’ll move the acorns over to where they can access them and not be up at the house.

Sometimes, Miss Barks-a-lot aka Nina will wake up between 0100-0430 either because she’s heard something or needs to go. She has some urinary issues, special diet, drinks more water I’m the one that gets out of bed. I figure since I didn’t like being able to not go when I needed to when I worked, I wouldn’t do that to anyone or anything else even though it apparently helped my bladder get stronger and not weaker. But if it’s closer to the 0430 time, I just stay up. BH will tell her it’s not tie, to get up, go lay down. Sleeping as long as they suggest has never been in my skill set unless I’m sick or had a lot of physical activity and am dog dead tired. I’m usually good with 6-61/2 hours which has always been my norm since I was wee little. I don’t know how to change that pattern so I’ll have to do some research.

Dumb me stopped taking walk abouts in the yard. I was really sick when Winter went into Spring took four rounds of antibiotics. When I started feeling better and the weather warmed up I started back on getting rebar out of the timbers and ended up causing a significant tear as the Sports Medicine doc said between the two bones on my left wrist along with a couple minor ones. I dealt with the tears in my right shoulder and pinched nerve in my neck from the year before which are still healing but healed enough for me to increase my activity level. With my wrist issues, I wasn’t allowed to pick up more than a cup for several months. When I do my walkabouts, I pick up sticks and limbs that fall out of the trees. I have to learn to just walk for 30 minutes. My plan today is to blow the leaves and acorns off and then do my 30 minute walk. We’ve got some limbs down from all the rain we’ve had this week so I’ll need to add those to the do list. Apparently my chore list isn’t aerobic exercise😂

@oct20 Thanks! I had thought stents were to occlude our aneurysms. Has your stent occluded your aneurysm? I’ve sent a question to my Neuro team because I’m confused. My thinking is if blood is still flowing into the little bugger it’s obviously not occluded so how is the stent doing its job? My aneurysm didn’t grow before the stent, the coils just kept compacting. BH says my aneurysm is just like me, stubborn and bull headed .

I’ve looked online, there’s no CBT in an area I can drive to, so I’ll be reaching out to my Medicare carrier and ask what they have available. I haven’t known of a referral needed to see a therapist but that may be the way things are done now.

[oct20]

Good morning @Moltroub

My neurosurgeon told me that my aneurysm was occluded so it is definitely doing its job. A walk outside is always nice. I think I am going to stay indoors today, it’s raining a LOT ! I will use my indoor bike instead, we bought it before I had my rupture and it has helped me in my recovery, when the weather is either too hot or too windy, rainy or cold I just bike while I’m listening to music. Take care

[Judi]

So sorry I haven’t been on for a while and missed what’s been happening with you. I had a longer response but I’m having a bad brain night and dont know if I’ve retained all I’ve read, so I deleted it until tomorrow when I can reread this amd respond appropriately! But until then, thinking of you and glad you’re finally getting some answers.

Judi

[Moltroub]

@Judi thank you! We all certainly get having bad brain moments, hopefully yours resolves itself with some sleep.

Britany the RN of the team sent message that Dr.Q-W will see me in three years which I think means she will reorder imaging and not actually a face to face. I haven’t seen her since the angiogram in 2021. Sergey seems not to like to wait more than a year between images. The previous set had put Ms.Ryann suggesting images every two years instead of five. So we’ll see who wins.

[Judi]

I’ve had company and so little sleep! I love the list you posted on brain health. I need to address a few of those items I typically insist I don’t need to do and I’m sure I’d do better.

There seems to be an epidemic of rushed reads these days from radiology. And no one will say anything to the radiologist. The patient is left to worry and question their health. On my MRA this year the radiologist commented on the right side of my brain with 3 flow diverters, but gave no dimensions for my residual. I was waiting anxiously for that number I never received. He also made NO mention of the left side which also has a flow diverter. He closes with “no new aneurysm”, but can I really trust someone that didn’t seem to notice a metal foreign object slinking through an artery? Luckily I called an got an appointment with the neurosurgeon who reviewed and discussed it with us. We endured the same thing with an MRI my husband had for different health issue. We has to wait a year for re-imaging and a better read.

I sincerely believe aneurysm patients deserve two reads from different radiologists, but who am I to say?

On the subject of stents occluding aneurysms, I recall when I was first diagnosed learning than a flow diverter is a type of stent, but all stents aren’t flow diverters. In SAC, stent assisted coiling, the function of the stent is often just to hold in coils so they are of a looser weave than a flow diverter. If the coils remain in place reducing pressure and flow against the aneurysm wall, then the stent is considered to be working. So your aneurysm may not “occlude”, but the treatment is still successful. I dont know if that is what they used for you of course, and my interpretation is not worth much because last I checked, there are no embossed degrees on my wall from esteemed medical institutions!

For everyone that ever questions interpretations of a radiologist, there are places that do second reads for a flat fee (self pay). I searched for some online for a different issue and was thinking of doing it once, but on that occassion my pcp ordered another test that resolved the issue. I dont know if they do anything for folks like us. We’re a bit complicated.

Again, so sorry Moltroub I’m late to comment and send support your way. I need to keep up!

[Moltroub]

Thanks for the explanation on the SAC, finally something I understand! Now it makes perfect sense, wish my team had explained it the same way. If I’m remembering correctly, she couldn’t use the more popular ones because of the location and type I have and my arteries are tortuous (squiggly) I was reading up on different stents a couple of months ago and it seems there’s a new one out specifically created for the type I have and for bifurcation location. I hope folks who need it get it and it works for them! Nope can’t remember the name.

Before my DM diagnosis, I had some imaging done for a patch on my rib cage that hurt like the dickens. Radiologist said “suspicious of” so off to the first GI doc I can get into, mine was a 3 month wait so we reached out to Baptist. I learned that those words mean they don’t know what they’re seeing but think it’s something and needs further evaluation. I had also been referred to a dermatologist so the GI doc told me to tell the derm PA something which led to my biopsy and diagnosis but he didn’t do the blood work, dumped me on the Rheum who was 3 months out. I have since learned it’s the Derm who treats DM not a Rheum but I’m sticking with my Rheum. I also could call the office of the group of Radiologists and ask what the heck they meant and they’d get someone to call back and dumb it down. I think my argument to get a more understandable diagnosis was I paid for it so I need to understand it. But I’ve got no clue how to get to the new group where we live now.

I’ve learned too that some PCPs take the findings as fact even if the recommendations are for further imaging. So treatment decisions can be flawed a bit. Radiologists also don’t like to be challenged apparently from my initial experience. Unfortunately that one experience has made me distrust the whole lot of them. This last one didn’t help. I do need to get Atrium to send me an email instead of calling and pushing buttons on the facility and techs. I’ve noticed on the phone survey, if I use the word Radiologist or imaging the computer hangs up on me😂. I don’t think it’s a glitch, just something in the program.

Any time they image my brain I always ask for my Neurosurgeon to review it, she not only knows my brain better than anyone else but she teaches the class, at least she used to. Besides that Sergey is going to tell me to reach out to her, he always does. He definitely wasn’t happy with the latest Radiologist’s findings from what he replied when I asked him where the heck was my stent.

I have the Neuroform atlas stent and more coils. The numerous daughter sacs are problematic, my theory is simple physics at play and the coils are reseeding into the little sacs. She’s certainly stuffed enough in. She actually told us she stuffed the coils in with the ballon assist I had, told the Resident to keep them coming when he thought there was enough. I also have a theory that most Radiologists don’t read cerebral images a lot and aren’t as well versed in looking at them other than perhaps TBI’s. We are a complex different group aren’t we?

Thanks again for your clarity! It totally make sense to me, no matter what’s hanging on your walls!

[LauraE]

Just a short note, Moltroub, to say I am thinking about you as I catch up on your story here. I am glad you seem to be making headway and take care of yourself!

[Moltroub]

Thank you! I’m trying

[ladydawg]

Holy moly @Moltroub I’m so sorry about your nephew and personally, I think you should’ve kicked the delivery person’s behonkas but that’s just me. You have sure been through the wringer and the some. I rarely have time to post - still taking care of mom but I do try to keep up with reading. Keeping you in my prayers and sending positive thoughts

[Nancy12]

Moltroub, I am praying for you!