Seeking opinions on postponing upcoming Flow Diverter surgery, please

General
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Looking for opinions, please. I’m scheduled to get a flow diverter in a couple weeks, and I’m considering rescheduling, but I desperately need opinions from people who know what I’m going through.

Background: I had a SAH of a 5mm aneurysm in 2001, which was coiled. In 2006, it was discovered that the coils weren’t staying in place, and that aneurysm was then clipped. I had diagnostic testing for the past 14 years without any changes or findings, until this summer. In June I received an MRI for unrelated reasons, but that MRI showed a possible new aneurysm. A CTA confirmed it, and because of my history and other reasons, we decided to clip it. I had a craniotomy the first week of September. The surgeon discovered 3 more small aneurysms during surgery, and clipped those as well. (7 clips total for 4 new aneurysms).

Additionally, the pre-op angiography revealed that my old, original coiled and clipped aneurysm was now recurring and needs intervention (particularly because it has already ruptured once). They couldn’t address it during the clipping due to its location, and said I should come back in 6 months and get a flow diverter. I believed I was losing my insurance next year, and asked if I could get it done this year; they said that was no problem.

My flow diverter surgery is scheduled for less than 3 weeks from now. In general, I feel pretty good considering it’s only been 10 weeks since my craniotomy. But I am definitely not the best, healthiest version of myself. Surgery (and meds) have kicked my butt, and I am only partially healed physically and mentally. Both my husband and I are in higher risk categories for COVID. We are afraid to fly to surgery, so it’s a 3 day drive (each way) through states where little is being done to stop the spread. Even without the virus concern, I have an uneasy feeling about the flow diverter, both in general, and in regards to how not-ready I feel for another procedure, no matter how less invasive than the last.

Now, it looks like I just might keep my insurance into next year, so I could postpone surgery until the Spring, in the hopes that the virus is much more under control, and that my body and brain are much healthier and resilient. But there’s also an argument to be made that now is the perfect time so that I can roll the two recovery periods together and not have to feel so lousy twice. It will cost a lot less this year too, since I’ve already met my deductible and out-of-pocket. Not to mention, my “live” aneurysm is dangerous. The list goes on: there are numerous pros and cons for both choices.

I’m going to ask my surgeons if they think it’s very safe for me to wait a few months (I assume they’ll say yes), and then make a decision. But I don’t know what the right choice is. Am I fooling myself and just trying to stall the inevitable, while also making myself worry about it rupturing for months; or are these valid concerns and I’d be crazy to embark across a COVID-spiking country in the midst of holiday season to check into an Arizona hospital? I’m curious if anyone has any thoughts that might be helpful to me? I’m interested in people’s experiences with flow diverters/stents as well. Thanks!

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Welcome to our group mgm! Wow, decisions are tough now days, aren’t they? It sounds like you’ve made a list of pros and cons, as well as discussed it with your husband. I think those are excellent, good job!

My first reaction was to do what you feel your body is ready to do. But then I kept reading.

I certainly wouldn’t want to drive a three day journey and have to sleep in hotels. Our neighbor works in a hotel in housekeeping and she often complains about the guests and other housekeepers. That hotel is not changing the bedcover after every guest which is a usual practice.

I’m thinking that with the airlines taking temps, requiring masks, etc it may be safer to fly especially if you have to stay in hotels and eat at all the various restaurants. Many restaurants in our county have employees that are not wearing masks or if they are, they don’t wear them correctly. So between the two methods of travel, I personally would fly. We just had this conversation yesterday, and I was debating the risk of recycled air in an airplane. Guess I have swung the other way today.

Insurance is definitely a huge factor. It sounds as if your really uncertain still if you will have it next year and if you do, will you have it the entire year? If you lose it, you may end up paying COBRA which is outrageously expensive, at least it was for me. Having met your deductible this year is a really good argument to have the next procedure done this year.

With you and I having multiple procedures, we certainly know that healing takes months if not longer. (You trump me in the type of procedures by the way.). I’m not sure if I would be any more ready in the Spring. But I do know that my reactions to just the anesthesia and dye are not good cognitively speaking. The more procedures I have, the longer it takes to get over them. My surgeon is using less anesthesia now which helps.

I have discussed your concerns with my BH. We are both in agreement that we would fly and not drive. BH came up with a good argument on insurance. If you think the company you work for is “wobbly”, meaning they may shut their doors next year, do your procedure this year. Our biggest concern is that you be mentally prepared to have the procedure this year. Our mental attitude going in to any procedure, is what gets us through it. And the most important thing is trusting your doctor.

Sorry if this hasn’t helped, I hope members with flow diverters will come and share their experiences. Best of luck. Please keep in touch!

Moltroub

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Hello mgm,

I echo Moltroub’s opinion. I would fly instead of drive. Wear an N95 or comparable good quality mask and eye protection while flying(this is what a neurosurgeon advised me when we were thinking of flying out across the country). Carry disinfectant wipes to wipe down your surface and use plenty of hand sanitizer. Though you have been through a lot already, I certainly would not kick the can down the road due to the unknown risk of rupture.

My husband was clipped for an unruptured aneurysm last month and the surgeon found it was very thin walled and could have ruptured anytime.

I understand your fear but I don’t think you should wait any longer due to your previous history.

Good luck,
CatTreats

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mgm, Was wondering what you decided. I too am going in for a stent soon. Dr. Quintero-Wolfe has assured me that WFBH in Winston is doing phenomenal measures to combat infection of COVID-19. I will have to be tested for COVID, quarantine for a week and then have my procedure. It’s not an emergency, but I need to be able to do things. I think I told her I needed to be able to move the cinder block and lumber. Apparently my choice in activities was one thing that helped her to determine to go ahead and do it. She even asked if I had a garden this year! LOL

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Hi mgm!

I totally get your situation. Thank you for taking the time to really spell out what is going on and your concerns.

I had a blood flow diverter installed in 2014 in my cerebral carotid artery. I do not recommend this procedure except in serious cases. Honestly, the blood flow diverter would have probably been the better solution for you from the start. Your tendency to blood vessel weakness would lead me to think clips just made it worse.

One thing that I would want you to explore is why the surgeries are sooo hard on you. They are hard on everybody…but I suspect that your recovery times are longer than for most people. They are for me, so maybe that is why I am picking up on this from your story. Turns out, I am allergic to the chemical contrast used in angiography. I am allergic to cobalt and nickel and should not have had the blood flow diverter installed, but my surgeon told me not to worry about it. “If it gets bad, we’ll put you on steroids.” I was showing allergic reactions with every angiogram and one time a nurse whispered in my ear to take benedryl when I got home. I kid you not.

My first recommendation is that you get tested for allergies to the chemicals and metals that might be hurting you every time you have a surgery. I was in bed for a solid four weeks after the pipeline was installed, so I know what I a talking about.

It sounds like you feel pretty rotten these days, and having another set of brain surgeries right away is probably not going to make you feel better. Every time that they snake that catheter up into your head and inject contrast is a brain surgery with potential toxic or fatal consequences. Don’t let anybody minimize the risks just because it isn’t a craniotomy. I would hope you could spend some time to heal in the coming months and look for perhaps a late spring or early summer procedure…but only you can weigh all the factors and assess your risks.

One thing I did not see, maybe I missed it, was that I did not see that you are complaining of chronic or acute pain from the area of the problem aneurysm. If I had significant pain there, that would make me lean toward getting the procedure sooner. That’s just me.

I don’t like any of your travel options. The other folks did a good job covering those risks. Oddly, I am going to have to add a counterpoint, though. I get viral infections from flying much more frequently than I do from driving. I also wonder if air pressure changes would make your head hurt.

Whatever you decide requires courage and patience. What am I saying? Our lives require that all the time!

Good luck and keep us informed.

Mary

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Interesting Ms. Mary that they didn’t figure out from your first angiogram that you’re allergic to contrast dye. I recall my first angiogram after being released from ICU and having a pretty serious reaction. The Resident on duty actually said to the RN that no one is allergic to gadolinium! Here I was with my face swelling, speaking like Mickey Mouse. She called him twice, the second time she told me to request my Neurosurgeon if he again refused to give the order. I did and she had the benedryl shot ready and was putting it in as my Neurosurgeon said of course! He was the same Resident that was in the procedure room who was supposed to put pressure on the closure device to stop the bleeding when the catheter was removed. My little Neurosurgeon literally picked that man up and threw him. She did a hand stand on my groin, blood was going everywhere and I thought I’d wet the new table. And I had an allergic reaction on that table that caused me to get a shot.

Now I am premedicated with Prednisone, take a Benedryl right before any contrast dye and then one after. My last MRI, I had to take 50 mg of Atarax to stop the allergic reaction. The techs had me wait two hours before doing my imaging. The tech in charge said most folks aren’t allergic to gadolinium. Really? With it on my chart? When I came out to BH, my face was beet red. As soon as we got to the car, I took the atarax.

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Wow, that is quite a story. The first time I had an angiogram, they ran the catheter up one side of my brain, injected the contrast in three places. I saw clouds of different colors. The third time was at the back of my head. Immediately, my body was slammed a complete 180 degrees on the table and then back…but I was the only one in the room knew it.

They pulled the catheter back out of my brain, neck, when it was deep in my torso I couldn’t feel it, but still felt their hands moving on my thigh. I asked if they were done. They said, “what, why?” I told them I could feel them taking it out. They said, “YOU CAN FEEL THAT?”

They gave me anesthetic via the port in my wrist, I guess they just forgot it before. Then they did the second side of my brain. They didn’t repeat the scan in back, just did two. As they wheeled me out, they showed me the screen with a picture of my aneurysm. They hadn’t found any others. After that, the anesthesia kicked in and I was out of it.

This was at St. Louis Barnes-Jewish. One of the leading neurosurgery centers in the world.

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It is an odd feeling to feel the catheter isn’t it? My first experience with angiograms was with a cardiologist. When I told him where the catheter was, he immediately gave me more anesthesia. Apparently one is not to feel it.

With my neurosurgeon, I’ve only felt it once, above my groin and the Nurse Anesthetist gave me more “juice”. I used to fall asleep when Dr. Quintero-Wolfe was doing my angiograms or coilings. Luckily, I talk in my sleep so could follow her directions. The last couple of times, I’ve had less anesthesia and was able to stay awake like one is supposed to. I recover from the anesthesia quite quickly.

The last time I was coiled, the RN in recovery was upset and said I shouldn’t be awake yet. He was asked to help some other RNs with a patient who was in crisis and refused. I told him to go ahead. He still refused. The nitwit (my favorite word for this year) ended up bruising my wrist horribly taking my pulse. I told him repeatedly to ease off and he refused. I requested my BH about a dozen times and he refused. He also didn’t notify Dr. Quintero-Wolfe when I woke up. I called him RN Refused. LOL

When all this was told to Dr. Wolfe in ICU, she wasn’t happy. She was very riled with the bruise on my wrist, it was bad. I really hope I don’t see him again on the 18th, but I probably wouldn’t recognize him. I do know from the last time, I am to request Dr. Wolfe as soon as I wake up. Apparently they can’t refuse a patient requesting their surgeon!

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About the bruising, I had the same problem at JH. No excuse, even with the blood thinners that put us on.

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I’m not sure if anyone who responded to my original post will see this, but thank you all for your help and opinions. I DID postpone the surgery because of COVID concerns, with the blessing of both of my neurosurgeons (the regular neurosurgeon and the interventional surgeon who will be doing the procedure). I’m really sorry I never answered anyone, and feel guilty and embarrassed that you all took the time to answer me and then I essentially ghosted everyone. :frowning: I was totally freaked out, and couldn’t really face the reality of what I was dealing with. My brain has just been through so much and I can easily work myself up into quite a state of anxiety and hypertension (which are of course terrible for my weak vessels).

My flow diverter surgery is now scheduled for the first week of May (I will be fully COVID vaccinated by then). I am, of course, scared to death. This is going to sound terribly superstitious, but I think the reason I am most scared is because EVERYONE tells me how easy this will be compared to my craniotomy. As many of you know, there is no such thing as “easy” brain surgery, and although I 100% know that everyone is being sweet and kind, I wish they’d quit it. I’d much prefer they sympathized with my terror instead of downplaying it. As I stated in my original post, I ruptured this aneurysm in 2001 (vessel failure 1) and had it coiled. Coils failed 5 years later (failure 2) and I was given a clip and pronounced “cured” (honestly! “cured”). At my Sept surgery for my new aneurysms, they discovered that now that clip has failed (failure 3 - 15 years later) and I need the flow diverter. Obviously that vessel/area is really problematic, and I have little confidence that the stent will stay put. I’m going to do it anyway (my other options are do nothing or have another craniotomy), but frankly, I’m not feeling confident about the efficacy of the stent.

That’s all. I want to ask the community some more questions, but I’ll do that in a new thread. Thank you all again, and sorry again for blowing you off these past months. I hope you are all well.

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@mgm No worries! We are here for you in whichever way you need. That’s what this support group is all about after all. There’s not a member in this group who doesn’t understand the anxiety and fears you’re going through. It is what it is. I’m glad you and your team made a decision together on what is best for you. Dr. Wolfe has never told me that I’m cured. I couldn’t imagine how that would feel and then find out years later it wasn’t the correct answer. The closest she has said something is with the Neuroform Atlas Stent and she told us that night she feels very confident she’s got it this time.

Looking forward to your new topics,
All the best
Moltroub

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Thank you.

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So there are 2 of us!! I had a craniotomy for a blister aneurysm in 2016 and told it was obliterated. You will see a post “Blister aneurysm survivor, wide neck residual”…that’s me. Well, guess what? I have a residual that is double the size of the original one!! I am going in Monday for a flow diverter called FRED (Flow Re-Direction endoluminal device). I am very good friends with someone who works for a company that makes aneurysm coils and she keeps saying the same thing “this will be a walk in the park after a craniotomy”. Ok. A. You haven’t had either one. B. This is NOT HELPFUL! C. The risks with blister aneurysms are still high even without a craniotomy.

Please do not feel like you are alone. I am super anxious too. I cry, I am short-tempered at times. I can’t focus. I am scared.

I am going to come back to you after it’s all over and tell you how it was. I promise to be honest and tell you anything I didn’t do that I wish I would have or visa versa.

You are not alone!!!

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@phoenix33, thank you so much for your reply! I hope you read this before your procedure tomorrow because now you can add one more person to the team of people rooting for your surgery and recovery to be quick and uneventful! Like so many people here, I understand and empathize with your fear, which hopefully, come tomorrow afternoon, you’ll be on the other side of!

I read your story and it is pretty amazing. My SAH happened in Boston, so my original clipping was at Massachusetts General (36 hours after my rupture because the first hospital sent me home). I moved out West from Boston and ended up at Barrow with Dr. Spetzler, who did my first craniotomy five years after the clipping. I loved Dr. Spetzler; he and I had great rapport (even if he did tell me I was cured!) Spetzler later did both my mother’s and aunt’s craniotomies as well. He is fairly legendary in our family. I’m still at Barrow (which is now 2,000 miles from my home), and though I like Dr. Lawton just fine (he did my recent clipping in Sept), I’ve yet to develop a relationship with him like I had with “Spetz.”

I believe that my upcoming flow diverter is also a FRED, so of course I will be eager to hear about your experience, and am so grateful for your willingness to share. It has been difficult not to feel alone in this, even with a super understanding personal support system. I can’t thank you enough for your validation of what sometimes feel like neurosis! I cry every time I’m on this website, but I’m never sorry I came here.

I will be sending good vibes your way all day tomorrow! Good luck, hang in, and be kind to yourself. Thanks again for taking the time to write, you and @Moltroub have made my day. Big hugs, stranger. :slight_smile:

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Spetz!! I called him that too! LOL…

He is the nicest man and a truly good guy. I agree with you that Lawton is not Robert and he never will be. I have heard some things that I do not like, and I have been around him at social events and he is just an odd duck so to speak. He posts some crazy things on IG and I someone should proof read them first. He’s trying to “beat” Spetzler IMO. You probably know that Spetzler counted every single aneurysm clipping. I was around 6075 or something close to that. There is a documentary called “Kill Me To Cure Me” that you can find on google. It’s a patient undergoing hypothermic cardiac standstill, and it is our guy as calm as ever…

Thank you for all of your support too! We are having a little bit of a hiccup though. I found out during pre op that Mayo uses CRNA and that each anesthesiologist runs 3 rooms simultaneously. The MD only does the intubation and extubation and the CRNA runs the case. I am NOT ok with this. At Barrow I had a neuroanesthesiologist and her chief resident. If we cannot fix this issue, I am prepared to walk out. My husband is a physician and will be the one that does the talking tomorrow morning. I don’t even want to be taken back to pre op until we know who will be in that room. They say how you go into a procedure is how you come out. I am not comfortable and I am now even more stressed. Mayo charges so much money…and they use CRNA and PA as first assists. Seriously? I hope this works out because if we have to leave tomorrow it will be a very unsettling situation. I hate I am spending my time worrying about this…

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Aw geez. That’s not cool. I’m so sorry that you’re finding this out now, and I totally agree with your assessment. I’d be uncomfortable too, especially with the notion of 3 rooms simultaneously. I want my anesthesiologist to have eyes for no one but me while I’m under their care. Anything short of that seems imprudent in my opinion. I don’t know if you know Dr. Albuquerque at Barrow, but he’s my interventional surgeon over there and has been doing my angios for 15 years (and some of my family members’ coilings). I trust him explicitly, which is why I’m willing to travel 2,000 miles to have him do the surgery. If you end up bailing on the Mayo, though I know you’re not necessarily happy with Barrow, I would recommend Dr. Albuquerque without hesitation. I’m not sure I want to go lurking around Lawton’s IG, but now I won’t be able to help myself! For what it’s worth, I’m one of the few people I know who is less than impressed with the Mayo. I guess we all have our stories.

It is great that you have your husband to help you navigate this, and I hope the two of you can get exactly what you need tomorrow. It’s clear to me that you’ve got a very solid handle on it all, so don’t doubt yourself, and try to find some peace in the hours you have left before this thing comes to a head. I don’t envy your position right now, but it is obvious to even this total outsider that you and your husband are going to do what’s best no matter what. You have the courage of your convictions, and that is worth so, so much. Whatever comes to pass tomorrow, I’ll still be sending those good thoughts your way. Please do let me know how it all shakes out, and I wish you the very, very best.
Melissa

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