44 - Neurosurgery (1st appt) Tomorrow!

Hi friends -

My name is Jen. 44 yo female, USA.

History: Suspected TIA at 37 yo. Husband and I were in a movie and I had sudden numbness left side, extreme issues finding words - just kept saying over and over “something is very wrong” slowly. Husband is a medic so he drove me to Stanford (we were at the movie theater near Google). They did not activate stroke protocol because “I was too young.”

For months afterward I had trouble with word finding and was tired, especially in the afternoons (usually would lie down for a bit - I was lucky enough to work from home). I took low dose aspirin for two years after, and had annual CTs (dry) which showed no lasting effects from whatever-it-was (from an imaging perspective). At two years we took me off the aspirin and all normal on executive function.

At about 42 yo I started having migraines and peri menopause symptoms including “fire hands” hot flashes. After trying a combo of meds, I went onto a tri-cyclic BCP and Gabapentin combo which makes my PCP nervous given the suspected TIA, but has allowed me to work ‘normally’ (high stress engineering job) because it reduces symptoms mainly the hot flashes and migraines.

About a month ago, migraines started getting worse and increasing in frequency, breaking through outside my cycle. We doubled my Sumatriptan, then doubled it again. My vision also started worsening, getting pretty blurry at times, especially with fatigue. We chalked it up to the stress of my job.

Last Thursday, I had an early morning migraine and treated with my rescue med as prescribed. Later that afternoon, I had a visual disturbance in my left eye I initially thought was my first migraine aura - I was working at the computer and all of a sudden part of my vision in that eye just kind of blurred and melted. It was a little like looking through a windshield with water running down. I messaged my PCP, who told me if it lasted longer than 60 mins, given my history, go to the ER to rule out another TIA. It lasted 40 mins almost exactly. Whew.

But Monday, I had the weird visual disturbance again, this time in my right eye, with no accompany headache. Messaged PCP, headed to ER. Arrived at 10:34am. Montgomery Medical Center in Olney MD activated stroke protocol. BP was high but all other vitals normal. Passed the physical neuro exam (push on my hands etc).

They drew labs and ordered imaging: CT (dry), and CTA at 11:34am. At 2:30pm they came to take me for imaging. I didn’t know until after imaging reports that the orders were STAT and we’d been lost in the daily ER/radiology shuffle. Whoops :).

CTA showed “Mild tortuosity of the right intracranial ICA. There is a focal out pouching at the right cavernous/clinoid ICA measuring 4mm x 3mm directed medially.” All other results normal so far. Referred to neurosurgery for follow up, and my appointment is 10am tomorrow.

I’ve had a nonstop headache since Monday but can’t take Sumatriptan so going for tons of water and plenty of sleep, lower stress work activities like a training module, and have had no additional vision changes other than the now-normal blurriness (can’t see the kitchen microwave clock from the other counter). That’s happened so gradually I keep saying things like “I really need to go get my eyes checked/my glasses Rx updated” but haven’t done it yet.

The neurosurgeon I’m seeing tomorrow is Dr. Daniel Feldman, MedStar Neuroscience Center, Washington Hospital Center. Daniel Roque Felbaum, MD| Neurosurgery, Vascular Neurosurgery | MedStar Health
Feedback welcome!

Risk factors:
-Familial hypercholesterolemia (40mg atorvastatin calcium)
-Familial history of aneurysms - grandfather and mom = abdominal aortic (both enraptured)
-Familial history of TIAs - both grandmothers
-Vision changes

Pluses:
-the thing is small (yay)
-excellent cardiac health overall
-supportive family and friends
-excellent specialists in the MD/DC/VA region here
-willingness to go with whatever gives me the best longer term prognosis

No kids, but I’m the primary earner in my household of three (mom, husband, self) and support my mom (retired early last year with memory issues starting relatively young). I ride my young green Arabian horse Rafiki for fun/stress relief.

I’m feeling ok/philosophical about all this so far other than honestly being scared about the vision changes - mostly grateful for great insurance/healthcare and strong patient advocacy (worked as a patient advocate in my local hospital ER in college, and had a car accident when I was 20 that crushed my right leg - I’ve had a bunch of surgeries on that over the years and have had wonderful outcomes - VERY lucky).

What’s surprising me a bit is how my family is reacting. Not unusual - “Unruptured Aneurysm” is the medical equivalent of a horror film or something - but they’re taking it really hard. I’ve shared this page and a recent webinar with them, and I’m updating my Advance Directive today. I have had life insurance for years, and optional short term disability and hospital insurance through my employer, so lucky there too. In bad or worst case scenarios, the practical aspects of things are taken care of. But I’m not sure how to help the fear/concern/anger/grief. Like guys! It’s small! We found it! I haven’t died yet! :slight_smile:

I’m making light of it, but this is a scary situation given my history. I’m terrified of losing my horse-riding privileges - Rafiki and I often take off on rides/handwalks solo, or drive to friends houses/riding events several hours away. Before the car accident, I was a cross country runner, but since I hurt my leg in the car accident I can’t do that anymore. Trail/endurance riding is my way to get back out there and I don’t want to lose it. After my grandmother started having TIAs, she increased her swimming, a half mile to a mile a day. So my dad, who is also a swimmer, is looking up pools for me to join, as that’s a moderate, low impact/no impact activity I can take up regardless of what’s happening with this thing. But I don’t want to lose the one thing in my life I have to myself that brings me extreme joy (along with challenges - because horses lol).

This has become a much longer post than I anticipated, because there is a lot I’d like to say, but I don’t want to lay it all on my family on top of how they’re trying to deal with what’s happening right now.

So things I’d love feedback on:

  1. If you had a cavernous/clinoid small aneurysm, please tell me about your treatment choices?
  2. If you horseback ride, have you gotten back to it? Why/why not?
  3. Any other recommended resources for family/friends who are supportive but really scared?
  4. Experiences with MedStar, Georgetown Hospital, Washington Hospital Center, and/or Dr. Feldman for procedures/care?
  5. Did you name your aneurysm? I feel weird calling it “the aneurysm”…
  6. How did you talk about this with your boss, work colleagues (if at all)?
  7. If you participate in higher risk sports like endurance riding, do you inform people at rides? Did you stop doing these activities solo?

Thank you so much! I’m so relieved to have found BAF and this community!

  • J (and unnamed aneurysm)

You make me laugh Jen, even though this is serious. It was getting lost in the shuffle for CT, had the same thing done to me when I was in NSICU and the transportation aide came to the rescue, yay him!

I used to have an Anglo Arab (Blu) in my younger days, we also did endurance rides. One of my favorites was crossing the desert in California. I paid $5 for her papers and all, she was but 3 years old and already trained in dressage. Kicked her young owner in the head and was headed to the dog food company. First horse was a grade mare, we were hit by a drunk driver, lost the mare and unborn foal (bred to triple A blue roan Quarter, unproven so breeding was free) dislocated 18 vertebrae and split my sternum. My Dad had Morabs, his mare’s lineage was quite spectacular in endurance racing with both her sire and grandsire winning the big one in Idaho many times. He always bred her to Arabians. So I get it when you say you don’t want to lose this love! When I got into the step down unit the first time, one of the charge nurses told me I couldn’t be around horses anymore. Apparently I was talking about an upcoming race with Blu. She had to be put down in the ‘late 80’s. I was extremely upset even though I hadn’t owned a horse for years, some of our friends have horses and now they won’t let me even close to their barns. A year or so after my rupture my Neurosurgeon said I can do anything I want. Still can’t get them to let me at least clean a stall.

Enough about horses, since you’re asking a lot of good questions. I posted a site on one of your replies, maybe it will help. I’m in NC so can’t help with feedback on Dr. Feldman, hopefully other members can.

[quote=“meaniffer, post:1, topic:18508”]
Mild tortuosity of the right intracranial ICA
[/quote] just means it’s a bit squiggly as my Neurosurgeon says, apparently most if not all my arteries are tortuous, some more so than others. I like to keep her on her toes.

Try some preservative free eye drops to see if it reduces the blurriness. I saw my Ophthalmologist on Monday, was complaining about it and he said to make sure I use it several times a day. Something about the number of times we are supposed to blink and what we actually do when we are looking at a screen which he says we blink the least amount of times.

It’s good you’re getting everything done with insurance, etc. I put it in the getting my house and House in order. Should never ignore the important things, we never know when that Mac truck is going to hit us.

I quit riding solo after I got hit by the Ford Ranchero, was by myself then, going from my best friend’s place to ours. She lived one street over. I look at horseback riding same as scuba diving or hiking, best to have a buddy if you can. Never know when a horse will spook and off you go, especially a green horse. When Blu was still green to trails, she’d spook at boulders and hated to cross a very small stream so she jumped over them. She could jump high and long lol. She’d swim a river though with no hesitation, go figure. Horses right? I see you’re smarter than I was, you’re wearing a helmet! I remember being in the mountains riding with a handful of friends and a horse in full tack came running up to us. We were able to catch the horse, but it took well over an hour to find the injured rider. All of us were trained in First Aid, no cell phones back then and were we were high up in the Sierras.

We have many members who have named their aneurysms, it’s part of acknowledging and owning it I think. I don’t have a name exactly, I just call mine the “damn little shit” in my brain to family and friends.

For family and friends, I think knowledge is helpful. After you see the doctor today, you’ll have a better understanding of your aneurysm and what the next steps will be. We can’t control how others feel as you probably already know. But speaking with them and letting them talk about their feelings will help, don’t forget to share yours as well. Some of my family members just like chaos and don’t get it, never will. Others have been able to process and have done better. My motto after I ruptured became “I walk, I talk, I wipe my own arse, life is good”.

Let us know what the doctor says today when you get time, please and thank you!

2 Likes

Thank you so much Moltraub!

I am so so sorry to hear about Blu, good grief what a horse! I appreciate you sharing those wonderful memories of adventures with me - I can close my eyes and see some of your and Blu’s story. My first and heart horse Odin was a BLM Mustang. I lost him last year and didn’t think I’d survive the grief. So I can totally imagine waking up and asking for him.

And an endurance rider! Ahhh, so you know the life :slight_smile: - we’re crazy huh? My best horse friends are definitely weirded out by this, so now I’m being very selective about who I tell.

I’ll type up my notes today and share, but have some decisions to make on next steps…

Overall will continue down path of getting a second opinion at Johns Hopkins (scheduling with Dr. Luis Fernando Gonzalez if anyone has worked with him).

Washington Hospital Center (MEDSTAR system) visit 6.6:
Dr. Feldbaum’s recommendation was to go for ‘least invasive’ next step - ie an MRI - unless I am the kind of person that “needs to know” in which case go angio, but he noted challenges with that approach (MRI) even though it is less invasive than an angiogram (he does go in through the radial/wrist approach whenever possible with angio), namely:

  1. Bony occlusions that made it difficult to determine if the aneurysm is in the extradural or intradural space (or both, ie is it cavernous, clinoid, or both) will also make it difficult to satisfactorily answer this question via MRI
  2. He also made the point that the radiologist would be likely to support previous findings on the CTA given they’re in the same system and will want to avoid risk of malpractice, so the likelihood that the MRI results show us anything different/new than the CTA is very low

Sounds like the MRI is sort of not that useful to me, and the real next decision is whether to proceed with angio.

Dr. Feldbaum was blunt and refreshingly honest. He said he’d be included to NOT intervene unless this aneurysm is intradural and/or oddly shaped (he drew a half a heart shape protruding from the wall and said these do not play by the rules, given location if this is one of those, he would be more inclined to recommend intervention). Again, only way to tell either of these is with angio.

The intervention (if needed at any point) he recommended is Endovascular insertion of a nylon/metal mesh stent and stated this is the only approach he would try given the location which makes access complex. Blood thinners (anticoagulant) and aspirin for life.

He said annual CTA with movement to every 2 and 5 years if aneurysm, which we’ve named Pazuzu (x), is stable.

He stated that while angiograms are “the gold standard” for definitively knowing what we are dealing with, he only tends to recommend them if he is seriously considering an intervention.

The risk math he cited:

  • PHASES calculation of risk of rupture: 0.4%
  • Angio risk of minor event/minor stroke: 1/10,000 or 0.01%
  • Endovascular approach risk of stroke (lifelong): 1-2%

If this were to rupture and is extradural:

  • lose eye
  • stroke
  • death

If this were to rupture and is intradural:

  • stroke
  • death

Overall, using the PHASES calculator, my risk of rupture seems very very low (sub 1%). That tool doesn’t ask for info on some of the particulars mentioned for CCAs in the medical literature though, which I’m having a hard time wrapping my head around.

I don’t feel comfortable doing nothing, nor do I really think an MRI is that valuable, so again, feel like the decision is whether or not to angio.

This study on cavernous carotid aneurysms is particularly interesting: Cavernous Carotid Aneurysms: To Do or Not To Do? - PMC

" These aneurysms are known to have an overall low risk of rupture and life-altering complications. Being enclosed in safe venous pouch, the cavernous sinus, these aneurysms tend to grow from large to giant size before they manifest clinically. In the ISUIA study, the 5-year cumulative rupture rate of unruptured CCAs was 0% for aneurysms with size ≤12 mm, 3% for aneurysms of size 13–24 mm and 6.4% for aneurysms >5 mm.[7] Similarly, risk prediction for bleed based on the PHASES score remains high for these aneurysms as the majority of these aneurysms tend to be giant.[8] However, for some reason, the common predictors of bleed for an incidental aneurysm such as hypertension, age, sex, and previous bleeds, do not apply strictly for CCAs There are several published series on successful conservative management of cavernous segment aneurysms the largest being by Stiebel-Kalish et al.[9] In their series of 132 aneurysms followed up for 4 years, 39 patients improved 21 remained unchanged, eight patients worsened and two died, suggesting a rather benign course compared to other aneurysms. The need for any prophylactic intervention purely based on the size of the aneurysm, thus, remains debatable.

Intervention for an asymptomatic aneurysm is justified in three situations. Aneurysms with an intradural component carry a risk of subarachnoid hemorrhage and need to be promptly excluded from the circulation. Such intradural components are often missed if not looked for specifically. Appropriate imaging of the dural rings is, therefore, mandatory for all CCAs. Similarly, an expanding aneurysm can result in sphenoid bone erosion, which can eventually result in fatal epistaxis. The presence of sphenoid bone erosion on bone window scans is the second indication for prophylactic intervention in an asymptomatic aneurysm. The third instance for preemptive treatment for a CCA would be an aneurysm seen to have increased in size on serial angiograms, especially in a young individual."

So it seems CCAs are on of those categories that don’t play by all the rules, and that imaging that can accurately depict shape + dural ring is recommended (ie angio, maybe bone scan?). I can respect that, but it makes me hesitant to just not get a better look at this thing again for a year.

This is another good study:

“Aneurysms involving the anterior genu of the ICA were considered cavernous if the neck was clearly located proximal to the origin of the ophthalmic artery. In aneurysms greater than 5 mm in diameter, catheter angiography was performed to establish unequivocally the location of the aneurysm if doubts existed based on axial noninvasive imaging studies about a potential intradural location of the aneurysm.”

So mine appears to be ~4mm.

“In general, patients with very small cavernous ICA aneurysms (< 4 mm) had imaging studies recommended at 3-year intervals after diagnosis and, if aneurysm size remained stable, again after 5 years. For patients with aneurysms larger than 6 mm, follow-up imaging studies were recommended after 1 year and then after variable intervals depending on presence or lack of growth. Some patients with minor mass-effect symptoms (headache, retroorbital pain, numbness in the distribution of the ophthalmic and maxillary branches of cranial nerve V [V1/V2], intermittent diplopia, or diplopia only with extreme position of gaze), “fixed” long-standing symptoms, and/or significant comorbidities were managed conservatively despite the presence of symptoms. Aneurysm growth at follow-up was evaluated by comparing data between similar imaging modalities. Main outcomes measured were incidence of aneurysm growth and risk factors for growth.”

This study data demonstrates that while growth is possible in these aneurysms, the risk of rupture IS VERY VERY low:

“During a total follow-up of 432.5 patient-years, 32 (32/120; 26.7%) aneurysms grew, demonstrating an overall 7.4% (95% CI 5.3–10.3) risk of growth per patient-year. Large/giant aneurysms (≥ 12 mm) were at the highest risk of growth (19.2% per patient-year [95% CI 11.6–30.1]). One (1/120; 0.8%) aneurysm ruptured during 432.5 patient-years of follow-up, demonstrating an overall 0.2% risk of rupture per patient-year in untreated patients.”

" Univariate analysis found risk factors for aneurysm growth to be aneurysm size (19.2% per patient-year for large and giant, 10.1% per patient-year for medium, 7.4% per patient-year for small, and 1.2% per patient-year for very small; p < 0.001) to be the most important factor. Sex, family history of aneurysm, hypertension, and smoking history were not statistically associated with higher risk of aneurysm growth. Risk factors for aneurysm growth are summarized in Table 3."

Once adjusted, risk of growth is also very low for my size: ~1.2% (yayyy!)

" Because of the benign natural history of these aneurysms (risk of rupture: 0.2% per patient-year) compared to other sites, management of a growing but still asymptomatic cavernous ICA aneurysm is controversial. Asymptomatic growth per se should not necessarily trigger treatment. Many of these patients are elderly with significant comorbidities, in which case further observation may be a valid choice. In younger, otherwise healthy patients with large or growing aneurysms, treatment with flow diversion is currently an excellent therapeutic strategy with a high efficacy and safety.2,6"

And CCA treatment may well be a case of cure being worse than the disease per se:
“When mass-effect symptoms do occur, successful treatment of the aneurysm can result in symptom improvement, but not necessarily resolution. Additionally, persistence or worsening of symptoms can also occur after successful treatment, and rates range from 10% to 39% in the literature.5,8

Hi Jen,

I’m no expert but i would agree that your decision now is whether to do an angiogram. An MRI/MRA likely won’t contribute much to the process. I know it’s easier said than done, but I don’t think I’d try to decide anything until you meet with Johns Hopkins. I’m a firm believer in multiple opinions. Right now I’d be working on securing opinion number 3 to be (hopefully) the tiebreaker.

That’s a whole new dilemna - where to go? Here’s a link to the US News list of top hospitals which you can sort by various means: Best Hospitals for Neurology & Neurosurgery | US News Rankings That’s also a pretty personal decision and I know of people that have flown far to reach the best with great results. I personally chose someone within driving distance due to COVID at the time, and I’m glad I did. I was not one of the lucky “once and done” people with minimal periodic follow up. In fact, I have an angiogram this week - number 7 if you exclude when I’m put under for flow diverters, 10 if you count those. I consider them routine now and don’t really think much of it. I’m here against the odds and I’m good with that. I’m also NOT the norm, so don’t let my interventional procedures scare you. By the time I reached intervention, my arteries were diseased, and my aneurysms were ready to blow. I had an extracranial internal carotid aneurysm at the cavernous junction that was of lesser concern that actually ruptured during the procedure. I also had tortuosity that almost prevented placement on the larger one that HAD to get fixed, but open surgery was very high risk so I’m glad they finally managed to get it covered. My surgeon had the tenacity of a pit bull and I wouldn’t have it any other way.

I will say that the first neurosurgeon I saw (who left me reassured and I almost stopped there) reviewed my imaging and was recommending only a repeat MRA in a year, but yielded to 6 months at my request. My second and third opinions wanted better studies (CTA and/or Angiogram). It was the angiogram that revealed the true urgency of the situation so I will never regret going with the surgeon most anxious to know everything we could. I don’t think I would have made it a year had I waited, but my risky one was far larger than yours and in a different location, so don’t let that scare you as we’re not talking apples and apples here. If you keep hearing an angiogram is optional from multiple sources, I’d be comfortable with that. But I’d want to hear it more than once before I even start decision-making.

So I recommend you choose your locations with care, just in case it becomes your home away from home for a little while. But if you do want to just log a 3rd opinion, any major institution will help you upload your imaging and set you up with a virtual consult. As a former DC resident, I think you’re doing great and have chosen wisely so far, but I don’t know those individual names, just the institutions they represent.

I had more to say but I can’t remember where I was going next… I’m so sorry you’re joining us in this very stressful journey, but you’re going to get through it just fine. I can already tell you’re taking control in every way you can, and as we all know, knowledge is power. Any questions, ask, ask, ask. There’s a great community here in your corner and we’ll do all we can to help. And remember, KNOWING it is there and being in front of it is a win. Your’e already way ahead of a person who finds out AFTER it blows that it’s been lurking there all along. YOU are in control, not the other way around. It may not feel like it now, but that in itself is a victory.

Keep us posted,
Judi

1 Like

Thank you so much Judi!!!

I was going to do the virtual Barrow second opinion thing as my Plan C, but you’re giving excellent feedback. I’ll pick one that smells good from the US News list. Maybe just the top of the pile in New York if they’ll have me.

Hopkins appointment (Plan B) is scheduled for next Thursday June 13. Everyone is getting me in fast which I really appreciate - hate waiting :).

I need to go tell my horse Rafiki tomorrow. I talk to him out loud - I have with all my horses. Helps reduce fear and anxiety when we are out there alone together, and I swear they understand 80% of what I’m trying to communicate, maybe more.

Got on the list for the Baltimore BAF support group and am in email contact with the coordinator Terry. Very happy about that. I’ll miss the next meeting as mom and I are going camping on Chincoteague Island VA, where my love of horses blossomed. So I can’t miss this trip!

Over the last 3 days I’ve read something insane like 100+ studies. Brain awash with a large amount of info and a very small amount of aneurysm. I’m so grateful for the BAF YouTube channel - those videos are *amazing.

Turns out we may be one of those families aneurysms run in - mom will be next to get scanned and sister is working on it. Dad is terrified but history on his mom’s side as well. His choice of course but I hope he goes for it.

You are absolutely right that digesting all this info and taking control of the course of treatment feels incredibly empowering - also incredibly necessary.

Family members will take turns going with me to the support group: first husband, then mom, then sister - in order corresponding to them as my health agents.

I feel like I am in the best position I could possibly be in finding this group. To the family I’m my normal sarcastic goofy self, but I’m scared as hell of course. It’s a huge relief to be able to come here and get such amazing advice and that pivotal feeling of ah - I’m not alone. :heart:

1 Like

I think we are a bit different than others when we enjoy endurance🤣. I remember running in our hills with the Boxer my sister gave me after Spice was put down, a mere 5 miles, give or take. (You know how it is -we have to keep in shape just like our horses.)That is until we started being tracked by a pack of coyotes. Zugar started that low deep growl and kept pushing into me. Thank God for the guys who were out trail riding or we would have been in hot water. You should have seen them come barreling down on us. We had a couple coyotes above and one below with the rest of the pack coming as fast as their horses. The guys surrounded us and got us back to the old Chevy pickup safe and sound. Another reason not to do things by yourself…

When you do your research stay with the more recent studies. I remember the ISUIA saying that people with small aneurysms don’t rupture but then along came the ISAT that said oh yes they do. Seems there were a lot of politically based papers on who was correct. Personally, I went with the ISAT since my small aneurysm did indeed rupture. I tend to stay with the research that’s no older than five years. It’s amazing how much the field changes in a very short time.

Angiograms have always been “the gold standard” in seeing an aneurysm. The risk starts with the anesthesia and continues on. I have a stent, I was on Plavix for a very short time, but 81 mg aspirin for life. Some members get 325 mg aspirin for life but I don’t remember any member being on both types of blood thinners for life due to a stent. There may be some though. We have a lot of members who have a stent, some get more than one depending on location.

I didn’t tolerate the Plavix well and looked like someone beat me with a baseball bat. I also bled a lot. I bumped into the exam table at the Vet’s and they had a time trying to get the bleeding to stop. I ended up buying a case of Vet wrap from our beloved Vet😂.

You have a lot to figure out. I hope your next opinion helps to clarify matters. I love a doctor who is blunt and honest, for me it gains my trust. When doctors beat around the bush, it confuses me with all their back tracking. Keep us posted, we are always here.

1 Like

Hi friends -

Ok so update. Headache consistent with some variation since last Monday. Responds to my rescue med Sumatriptan (50mg/12 hours). No vision changes, BP normal throughout since last Monday’s hospital visit.

I’ll be getting 4 opinions on initial CTA results (and some follow up imaging) in the following order:

1st Opinion, Washington DC (local): MEDSTAR Washington Hospital Center Neurosurgery Dr. Daniel Felbaum (I misspelled his name above sorry!) - next step = MRA w/out contrast scheduled for July 12th. Dr. Felbaum recommends against intervention/treatment at this time, but we talk again after MRA. I was against the MRA because I felt it wouldn’t show us much more than the CTA, but more reading on cavernous/clinoid and ‘transitional’ aneurysms does mention that sometimes the MRA show morphology findings that are helpful in planning care, so what the hell. Let’s do it. I HATE the MRI machine (mildly claustrophobic) but they have headphones that play music and I’ll be in a “bigger machine” supposedly so bring it on. WHC does not have open MRIs, and even though we do have centers in the area that have them, Dr. Felbaum will not refer outside the MEDSTAR system. Sigh.

2nd Opinion, Baltimore MD (local): Johns Hopkins Neuroscience appointment this Thursday June 13th with Dr. Fernando Gonzalez. Mom and husband both coming with. I’m excited for this one, if that’s the right term, because I’ve heard GREAT things about Hopkins. They’re also very close to me, and if we have any control in a worst case scenario, I’d ask to be flown to Hopkins.

3rd Opinion, Boston MA (virtual): Beth Israel Deaconess MC ‘conference’ review this Thursday June 13th with Dr. Christopher Ogilvy’s team. This is a cool virtual consult option where for $500 you send your results and overnight a copy of your imaging and they review during weekly neuroscience conference. Then Dr. Ogilvy calls you with recommendations/results of the review that same Thursday or following day, Friday. Jumping on this one as BIDMC is so involved with the BAF webinars and super impressed by their team particularly for small/complicated aneurysms. They also have a Cavernous Malformation center (!).

4th Opinion, Charleston SC (TBD): Seeking to schedule with Dr. Alejandro Spiotta at Medical University of South Carolina. Waiting call back to get info on virtual vs. F2F options as we aren’t local. Me and mom have been so impressed by Dr. Spiotta and the MUSC team’s information shared on BAF webinars (lots of great links on the BAF YouTube channel, which I 10/10 recommend) that this is one I hope we can pull together.

And that should give me a top-notch round of feedback to assess in planning next steps. I think it’s likely that one or more of these docs will request/recommend angio, but not entirely sure.

I’m really hoping to hear that ‘click’ with one of these docs, but I sure don’t feel like it’s the first one we saw at WHC. So fingers crossed for rest of the appointments/interactions.

What a great site! Had my first ride back on my horse Rafiki yesterday, super calm at the walk. I rode with a friend, and told her what’s up. She’s my most frequent riding buddy at the barn, so now someone knows and has my back. I don’t believe I’ll be doing solo riding as much anymore because if there’s anything more risky than an unruptured aneurysm it’s riding an Arabian (lol!!!), but we’ll see.

Trying not to make any big decisions and take it day by day. Know my risk is very low, but I did watch a few ‘what happens in a rupture’ videos this weekend and that is *terrifying. A rupture would put my professional career, earnings, and ability to support my family as primary wage-earner at serious risk. It’s a lot to think about.

2 Likes

Jen,
I have somewhat the same issues. The BEST advice I can give is: Go out and live your BEST life! Sometimes you have to walk away from things to survive! Keep fighting! Keep asking questions! Don’t feel your getting the right answer, move on! Make every moment count! Please remember, you always have friends here! …and the most important Hero in your story is you! With love and admiration… Tim

2 Likes

Hi friends here’s the latest -

Headache that’s been hanging around like a bad habit finally GTFO’d. Normal migraine? Aneurysm forming? (We know it’s new in last five years as I had follow up CTs for 2 years post TIA from 37-39) reaction from contrast used during CTA? Who knows?

But feels like I got a get out of jail free card.

Spoke with Morgan, Dr. Spiotta’s nurse, on Wednesday. She is AMAZING. They would go for intervention, also flow diverter, and use Medtronic Pipeline device. I’m to call her back and get a chart going with referral from my primary care after checking insurance for out of state coverage if I want to work with them. They clinic on Mondays and then would schedule angio for Tuesday. Then I’d go home for a bit and come back for the Embolization. Plan for one night in Neuro ICU and discharge next day. She says they do aneurysms as small as 2MM regularly, treat 5-15 of these a week, treat cavernous and paraclinoid ICAs all the time, and haven’t had someone not go home next day in 8 years (my age range).

Now a bit about the flow diverter…Research on that device including the 2021 recalls led me on a fast road to nowhere good emotionally.

But I did finish researching complication rates with all the flow diverters currently in use, looked up and found the Medtronic Neurovasculae factory address in Irvine CA where they are made, and then found out that factory is only like 30 mins from Disneyland.

So, new plan - if I pick intervention, I’ll take the nephew on his Disneyland trip AND try to get a factory visit where my stent will have been born. Yep. I’m a nerd :joy:.

Also happening…

Today we go see Dr. Fernando Gonzalez at Johns Hopkins in person. Mom and husband joining. Everyone a little skittish. That appointment is at 12:15pm EST.

Also today - virtual review of case at neuro conference at Beth Israel Deaconess (Harvard) at their weekly meetup in Boston. Then Dr. Ogilvy will call me later today or early tomorrow with results of that review and recommendations.

So by end of this week I’ll have:

  1. WHC Dr. Felbaum
  2. MUSC Dr. Spiotta
  3. Hopkins Dr. Gonzalez
  4. BIDMC Dr. Ogilvy

Family knows if something happens spontaneously I want them to get me to Hopkins, so I feel like we are all on the same page about what to do in an emergent situation, which is weirdly reassuring.

Then it’ll be decision time. Still feeling pretty ambivalent about picking a direction (intervention vs. watch and wait).

Life slowed way down this week as I digested all this (and was slow from the headache). It was pretty much only work and medical stuff, which I hear is normal.

Overall feeling is nerves combined with this overwhelming sense of gratitude that I have choices at all.

J

2 Likes

Jen, you’re all over this. If you ever want an alternate career path, you could help less adept navigators of the healthcare system get all their ducks in a row to make more informed decisions. And I’m totally serious… i think there’s in a void in our healthcare system for serious afflications such as cancer care, AVMs, aneurysms, stroke care, autoimmune disease, and others.

Glad you’re making headway and talking to the experts. You may emerge with an obvious path that takes away indecision. I’m anxious to Hopkins and BIDMC’s’ opinion of your case.

3 Likes

What a lovely thing to say Judi, thank you.

I was a Patient Advocate night shifts in my local hospital ER Junior and Senior year in college, and loved it. With a mom nurse, NP mom in law, EMT husband, and a bunch of leg surgeries, it’s definitely something that runs in our family, which I am also so grateful for, as that is CERTAINLY not everyone’s experience with the system. I completely agree with you there’s such a need for better navigation assistance. Something else to think about :slight_smile:

I’ll report back today!
J

1 Like

Well Hopkins today was interesting.

Dr. Gonzalez and team are top-notch.

All of my accident/leg care has also been in Baltimore but at University of Maryland Medical Center. Hopkins was a new experience, and a good one.

We got there early to scope out the cafeteria seating and coffee situation. Good selection, and a full Starbucks if that’s your thing. If your family is around quite a bit you’d be surprised how much of an impact decent food and the availability of good hot coffee can have on mood. Also a lovely outdoor seating area. Enough on the scenery…

Neuro is on the 5th floor of the Outpatient building, and checkin was fast and efficient. Followed next by a vitals check and intake interview, where they uploaded my CTA images from a CD. Note to self - always get extras of your imaging especially if you plan to seek multiple opinions before choosing your care team.

Then Dr. Gonzalez’ temp PA Jill came to get us - she’s filling in until his FT PA returns from her maternity leave. She asked about my history - somehow the TIA was a surprise. Dug in there a bit then she handed us over to the doc - we met Dr. Gonzalez.

He answered all our questions and described a split decision - if cavernous he recommends watch and wait as those “are generally benign.” If transitional or clinoid he recommends intervention “given how young you are.” No hesitation based on Pazuzu’s size.

He dug in DEEP on the vision changes that led to ER visit a week and an half ago and then dug in deep again on the TIA symptoms. He’s the first doc to really dig into what’s been happening to me and then make decisions and form an opinion based on that. His demeanor is professional and calm. He is a very neat and orderly person. In equestrian sport we would call it a good turnout :).

As we talked about that, he focused in on the fact that imaging from that time (2017) came back clear. Can we get those images to compare? Because if they’re clear that would be another indication to embolize. Verbatim comment: “They’re not supposed to grow that fast!” Uh oh.

He said we need another CTA or angio and recommended angio. Walked us through the risks - all of them. And just like that, looks like we’re to schedule angio for sometime in the next 2 weeks. Yikes. This train is catching some speed.

When we got home, I called Stanford and got a My Chart activated. Sure enough, the MRI (I was wrong in my remembrance that it was a CT) was there. Findings: clear. Specifically the team of three radiologists call out no aneurysms present. Then I opened the MRI images. Wow. The brain is a beautiful thing no? And the arteries lit up? Spectacular. Sure enough, no outpouching in any of the 20 beautiful images from Stanford. Huh.

So yep. Proceeding to angio at Hopkins most likely, but I don’t want to do an angiogram with a neurosurgeon unnecessarily - the doc that I want to treat should do that.

Haven’t heard back from BIDMC yet but that’s the last opinion I need to make a care team selection.

When I do pick we’ll talk more about whether i can wait until after Disney.

May also get a tee shirt or some other swag to announce care team selection like they do draft picks, because when I can’t find the humor in this that’s when I’ll be in real trouble :joy:.

2 Likes

Sounds excellent (from a care etc point of view) :heart: Obviously less excellent if there’s a bit of change going on.

1 Like