Need advice and support - have no idea what to do

Hi. I am new to this group. I recently found out by accident (about 2 months ago) that I have a 5 mm aneurysm. I was scheduled to have an angiogram on Sept. 12th. Unfortunately, they called me that morning and said the angio room was down and they had to cancel my appointment. They said they were hoping to get me in the following Monday which would have been this past Monday and they would let me know. Did not hear from them all week. The office finally called on Friday, after I had left a couple of messages and said they still were not sure what day they could reschedule me for. Maybe the 22nd or the 27th. Here it is the 20th and I have not heard back from them. I am so surprised at the lack of communication. I feel like I should maybe reach out to a different neurosurgeon. I was referred to this one by the ER of another hospital.
I am so unsure of what to do at this point. I feel like I have a ticking time bomb in my head and everyone is just going in slow motion to get this taken care of. Does anyone have any advice or possibly know of a neurosurgeon in the Central New York area? I am having so much anxiety over this and am so scared. I have no idea what to expect. Any words of wisdom will help! Thank you!

Debbie, welcome!

Do you know what procedure you’re waiting for? MRI? Angiogram? Or something else?

We all completely get the ticking time bomb feeling: I think half of us have been there and it’s not nice. Rather than an aneurysm, I had an AVM which is a situation in which an artery is connected directly to a vein with no capillary bed in between: this means you have arterial pressure blood squirting at high pressure into a low pressure vessel: a similar chance of rupture to you.

When I was first diagnosed, I was sent for an “urgent” MRI (which took a month to happen) and a further month to read the results. I was then referred to a different hospital for neurosurgery, which took at least another month.

Once I was seen in neurosurgery, they decided that an embolisation was the best thing to do and so I was referred for surgery. Waiting for that surgery took from Nov 2016 until April 2017 – a further 5 months! Why did it take so long? Because there is limited capacity to undertake operations and, frankly, as someone who hadn’t had a bleed, I was better off – healthier – than a bunch of other people who were suddenly ahead of me each day, each week, in the queue.

So while we panic about neurosurgery and think “It’s got to be done tomorrow!” actually, in my case at any rate, they were simply balancing the needs of all of the patients in the queue. When I was waiting, I said to myself that I didn’t want to insist so much that I disrupted the queue order so much as to lead to anyone else not making it through but, obviously, I did want to make sure that they understood how I was doing and assess accurately where I should be in the queue (my AVM was getting more and more extensive over the months that I waited).

Now, I don’t know what’s causing the neuro team to delay what they want to do with you (and you seem to have better capacity in the US than on a free-at-point-of-need health system in the UK) but just because we look upon neurosurgery as urgent doesn’t actually mean that we are the most needy person on the list.

Stay on their case, do look out alternate practices but really you’re ok. It’s tough having to wait but there may well be other much less well people in front of you.

I hope sharing this experience of mine may help.

Very best wishes,

Richard

1 Like

Good Morning and Welcome again Debbie! What a nerve wracking situation you’re in, my goodness. My advice is for you to breathe. Take deep and slow breaths. Focus on one thing you love to see while your breathing may help. Take some walks and give yourself some elbow room where you’re not thinking about having a 5 mm aneurysm. I only allow myself to ponder my aneurysm a few minutes a day and it’s been repaired four times. Most days I don’t even give it a second thought though. My mindset is that I want to live my life as I see fit and not have a health issue control my decisions or feelings.

In my experience with a medical office that is lacking with communication, ask for their office manager. Office managers are sometimes have other titles but in the end they are responsible for everything and everyone, except the actual Doctors.

If the angio room is down, it may be that they are waiting on a part or a tech to fix things. The wait can be really long as it seems parts and pieces aren’t readily available, much less repair people. I would ask the office manager what the hold up is with fixing the machine and let the office manager know about the lack of communication, specifically the office not returning calls. If you’ve called three times in one day, that could be an issue. Try calling every second or third day. Give them 24 hours to return calls. Let them know you are scared.

In the USA, we have the ability to find other specialists. You can do that of course. However if you find another Neurosurgeon, they may be using the same angio machine, which would put you in the same place. So when your looking for another, try to find one that doesn’t use the same machine. I live in North Carolina and have never been to New York. I did find this group Neuroendovascular and Stroke Treatment | Department of Neurosurgery | SUNY Upstate Medical University which says they serve Central New York. I hope other members that are familiar with your area will share their experience.

As @DickD mentions, for those that have immediate needs -tumors, ruptures, TBI’s etc, they are put at the front as they should be. Where I go there are three Neurosurgeons and they share the same angio machine. I imagine Neurosurgeons in the Winston-Salem area that are not part of the teaching hospital may be able to use the same machine. There is also a limited number of beds in the NeuroICU (NSICU). I had my stent installed during the pandemic. The three Neurosurgeons had to decide which patient was going to have the elective procedure and they only had one bed. The scheduler called about a month later and told me what day I would have my procedure. During the wee morning hours, I had to be moved from NSICU to a trauma ICU because another patient had greater needs.

Hopefully, the surgeon’s office will contact you sooner rather than later. Remember we are all here for you, you’re not in this alone.

1 Like

Hi Sabbie, how wonderful they found this in the manner in which they did. My neurosurgeon once said it is really difficult to know how many people actually have unruptured brain aneurysms as it is not all that often we scan someone’s head.

I ruptured on my first but can tell you that another one was found in my yearly follow up’s and it was deemed worthy of fairly urgent surgery. Between the pandemic and other such nonsense it was 8 months before I actually got in for repair. I do understand the feeling of living with a time bomb in my head for certain but I guess at the same time I did indeed go that length of time without incident as well, so there is that.

Try to remember that nothing has really changed only that you have become aware of something that already existed.

3 Likes

Hi. Thank you so much for responding to me. It is so comforting to know that I am not alone. I was having a frustrated moment when I posted the other day. Thank you for making me feel better about the waiting. I completely understand that there are patients whose condition is worse than mine and I would never want to take their spot in line away from them. I am more just looking for the doctors office to give me an update of where we are. Whether it be a month from now or 4 months from now.
The place you mentioned Moltroub, SUNY Upstate, is the place where I will be getting my treatment done. And I think I will be staying with them, as I am sure the wait will be the same wherever I go. I was just talking to a retired nurse from a Cath Lab who says I should take comfort in the fact that the doctor is willing to let mine wait as that says he thinks I am good for now. And I will try and do just that. I am very thankful that this was found by accident. Now I just need to stay calm and hope for the best.
I want to thank you guys for your words of wisdom. I am glad that you all are doing well and you recovered from your aneurysms.

Any words of advice on how to prepare for my angiogram and what to expect? Thanks again!

3 Likes

@Sabbie11
There is a lot of wisdom to be found in this group, I’m glad you found us. You can do many things to prepare for your angiogram, but I don’t know how much time you have? Is it scheduled for tomorrow? Try to be well hydrated is what many people recommend. Make sure you have loose fitting/ soft trousers, like jogging pants when you got to the hospital. It’s very uncomfortable to wear jeans if they use your femoral artery which is the most common. Prepare some place where you can rest when you get home, the closer to your bathroom, the better. If you have more time, try to get your home in order, wash clothes, buy groceries and cook extra meals and put in the freezer so you don’t have to prepare it for the first couple of days. You have to have a driver and I think you need someone to stay with you for the first 24 hours after you get home. You will not be able to run errands for a few days, maybe a week or a little longer. I hope you have someone who can help you. Maybe download an app with some relaxing music or sounds. I found one that had sounds of waves that was very relaxing. Sunglasses to wear when you are in the car to get back home, many of us were sensitive to bright light in the beginning.
I hope this helps a little. I know how stressful it feels to wait for the angiogram, all of us has “been there done that “
It will be over before you know it. Try to think that this is what your doctor does several times a week and they know what they are doing. The RN’s that are prepping you for the procedure will do everything they can to make you feel comfortable.
Good luck and get back to us when you are ready.

2 Likes

I believe @oct20 has said it all! She’s really good at helping other members…Hydration is paramount as it helps the needles and catheter be put in place, it also helps our brains. If you have a yard, do yard work prior to going in as you won’t be mowing for a bit. @oct20 Is correct that you will have to have someone stay with you for 24 hours after the procedure and you won’t be allowed to drive.

I had to be pre-medicated the night before my angiograms due to allergies. I had what I referred to as my angiogram uniform which depending on the time of year could be sweatpants and a T-shirt. I also have some very light pants that are sort of like sweats but thinner material. Whatever you chose to wear, make it comfortable instead of showy. Don’t take jewelry as you’ll have to remove it all anyways. I give my ring to BH to wear until I get out of post surgery. Don’t wear make up or nail polish as the medical team needs to see your skin and nail beds. They should send you a list of the do’s and donut’s prior to your angiogram.

The day of rhe procedure, I sign in of course, wait to be called back to get the blood work drawn. IV line installed and started, a urine bag catheter inserted, the Anesthesiologist will go over the risks on their end, the Resident or Neurosurgeon comes in and goes over the risks on their end usually. I’ve had a few so I can just tell them. You will sign more paperwork saying you understand the risks.

I would be wheeled in the procedure room and transferred to the table. The RN Anesthetist will stay with you throughout the procedure in my experience, though sometimes I’ve had the actual Anesthesiologist or a Resident stay up by my head on the left side watching my vitals and me. You will see or hear a lot of activity from the team getting ready. They put your skull in a padded device so you can’t move it, it doesn’t hurt and they make sure you’re comfortable.

There’s another RN that stays right above my head. The Neurosurgeon comes in and talks to you whilst they’re putting in the catheter to run the camera through. I had the femoral artery used for everyone except the last. I started asking Dr. Q-W if she slept well, ate, and went to the bathroom prior to starting on me. The Resident used an ultrasound to see if they could use my radial artery and they could! As other members here told me, it’s a much shorter, easier recovery to use the radial artery. Once or twice I had to wait as an emergency came up with another patient. I recall one was a five year old that had to be operated on. When Dr. Q-W was able to come in, she explained why she was late and I asked if the child was ok. He was and I was happy as a lark. Dr. Q-W told her team “I told you so”:rofl:. Another time, a patient had ruptured and I was still in the waiting room. Just had to wait for the procedure room to be cleaned up so a few hours, with the patient who was operated on, no big deal - take your tablet or a book to while away the time.

The Neurosurgeon will tell you:” Don’t move, hold your breath, release, hold your breath, hold it, hold it, release” whilst navigating the catheter to your brain and once in it. This is easy to do, apparently I can even follow directions in my sleep though they like you to be semi alert. Where I have mine done, they have a room for all the students, to watch. I call it the peanut gallery. Also, my wonderful NP comes in and assures me all will be well. I just really like it when Ms. Ryann is in the procedure room, though she doesn’t have a job with me. Besides Dr. Quintero-Wolfe who’ve I known the longest, I know Ms Ryann has my back. It’s unsettling to me when the team changes as I don’t get to listen to the music I like and some can be more professional than I like - they won’t joke with me and that’s how I calm down. Had the same team for probably seven of my angiograms.

Dr. Q-W is short so she has a platform to stand on. She is always on my right side, doesn’t matter which femoral artery she uses. There’s a huge screen in front of her to help her and everyone else in the room except me to watch the catheter go through everything. I wish they had a small monitor for me to see. I can’t even watch it on my patient portal! One or two members have said they were able to watch, some prefer not to.

When she’s done, she always tells me I did a good job LOL. For the femoral artery, either a Resident or Dr. Q-W applies pressure on the closure device in the femoral artery. For the radial artery it’s an air device that goes around your wrist. Dependent on the artery used is what happens next. Either way, you’re sent to recovery until you’re alert and the post surgical unit contacts your surgeon.

You then get to be transferred to another room where another RN will monitor the site. If it’s a femoral artery, you get a weighted bag and have to lie still for several hours. If it’s the radial artery, you get to be slightly inclined, able to move your legs and the RN will gradually monitor the release of air. There’s a lot of RNs involved in this if you couldn’t tell.

Once you’re able to urinate on your own and eat a meal, you get to go home! There’s two things we have usually done when I’m scheduled for an angiogram, we go out to a really nice restaurant the night before to have as a treat. Most times we go to the tea shop afterwards so I can pick out some loose leaf tea, as we don’t have any in our small town. BH will usually stop at a drive thru for our evening meal as it’s a long day being an hour away from Winston-Salem for us.

I’ve only experienced three issues with an angiogram. Two were for the follow up after I ruptured, I think it was or the one after that. The Resident didn’t put enough pressure on my groin and Dr. Q-W literally threw him away and did a handstand on my femoral artery. The same Resident told the RN that called him for my delayed allergy attack that no one is allergic to gadolinium. I requested my Neurosurgeon after the poor RN called him three times. She had the Benadryl shot ready in the limited time that Dr. Q-W called and shot me whilst on the phone. I ended up with a fair sized hematoma and was limited for a lot longer because of it. I also received calls several times over the weekend to make sure I was ok from multiple Residents and RNs, just not the nitwit Resident. The third time was with my last angiogram and the Nurse Anesthetist didn’t give me the shot of dexamethasone I usually get before Dr. Q-W starts. I told her about it, I asked for it three times and she said she’d give it in the procedure room. She didn’t and I ended up with severe anaphylaxis. Fortunately I was able to tell Dr. Q-W we had a problem, she stopped and looked at me. Told the RN-Anesthetist to give me the shot, but it wasn’t in the room. She told the RN to go get it and asked about the Benadryl. She had the Benadryl and was ordered to give me that and go get the Dexamethasone. Dr. Q-W ordered an large push on my IV bag to clear out the dye and clear it out it did! I think the RN had to change out my IV bag three times in less than three hours. If you weigh the number of angiograms I’ve had with the two procedures that went a bit wrong, it’s really insignificant statistically speaking.

When you get home, you have to stay hydrated. It helps everything heal and is extremely important. My general rule was three of the large Gatorades and three times the amount of water due to my blood work and allergy to the dye. I also have to rest a lot and eat at least 90 gms of protein. There are weight limits and activities you can’t do dependent on the entry site. Which is why having everything done prior is the best idea.

Hi there. I am a 57 year old woman, with no underlying conditions. My doc found my 7-8mm aneurysm last Nov. They found a splenic aneurysm by chance a couple years ago when screening me for an aortic aneurysm (my aorta is just fine, but family history of them so got screened). Doc suggested a brain scan just to be rule that out, and whoops, found one. I will have a follow up angiogram this Nov, and will then have to decide whether to treat or watch and wait. But things have been fine for me over the past 11 months. Not sure what decision I will make after this next scan, but I so understand your anxiety. Hang in there, I hope you have days where you forget all about it.

1 Like

Hi Sabbie,
I’m in Western New York, and have been with UBNeuroSurgery and Gates Vascular Institute since my 5.8 mm x 3.7 basilar tip aneurysm was discovered last December. They have been absolutely wonderful and efficient through this whole ordeal. With the first angio that was scheduled within a month after my initial visit, the doc asked me to just stay overnight and he could do the web the next day. After 3 month check up angio, discovered the web hadn’t quite covered as much as was needed, and had coil/stent procedure in May. That recovery was a bit rougher, but latest angio just showed no changes since surgery and I’m looking forward to an MRA in 6 months. There’s a small bit left, because of its oblong shape, but it’s not a worry right now. I understand where you’re at, and want you to know you’ll get through it. The Neuro teams are top notch and I am so grateful. Btw, 5 procedures this year and I’ve never had a catheter. 4/5 times went radial artery. Finding this group really helped and I’m focusing on being grateful for every day. Wishing the best for you.

1 Like

@Sabbie11

My experience of angiograms is that hydration up to the point of being told to desist is important. I’ve had one combined angiogram and embolization that was done under general anaesthetic (that took a few days in hospital for me) and two done with just a local anaesthetic to have a look at the architecture.

I think the latter is the more normal approach. It is still a day’s operation but you go into theatre, the doc puts a local anaesthetic in, inserts the cannula or whatever the catheter passes through and you’re all ready. Then, they go and explore your arteries and take x-rays to see what’s going on by injecting contrast material through the catheter. The injection of the contrast can give weird and wonderful physical effects – sudden heat, tingling, dizziness, nausea (lovely!), flashing lights – for a few seconds as it supplants the normal blood flow past different parts of your brain. But it is just seconds at each shot. My favourite radiologist was the one who kept a running commentary on what to expect when and it went fine.

During the procedure, you do need to lie still and sometimes hold your breath but I think it is fascinating being able to see what’s going on. The team that looked after me were great.

Afterwards (and the worst part tbh) is he pressed down HARD on the femoral artery, to allow it to start to close and the local anesthetic has started to wear off by this stage, so honestly, it does hurt, but nothing you can’t get through perfectly well.

Then, if they’ve gone in via the femoral artery, you’ll need to lie still for a few hours. (Make sure you go to the loo immediately before going to theatre! Unless you’re under a general anaesthetic, you won’t get a urinary catheter fitted). Then you’ll need someone to get you home (no driving!)

Some people feel a bit rough post angio: the contrast material is a bit like just the hangover part of going out for a drink: but good hydration again will help. If you’re in for a long time, you might get some visual effects from the contrast material as well. Someone in another thread has mentioned flashing lights; I got scotomas on occasion for a few weeks after my embolisation and again post angiogram.

Hope this helps,

Richard