Support please

Two and a half weeks ago I was diagnosed with 2mm unruptured aneurysm—an incidental finding. I experienced so much anxiety, I could do little more than roll in a ball while I was attempting to carry out my usual animal-related responsibilities, including for my horse. My state of mind was probably made worse by my neurologist who, while supposedly expert in his field, is extremely, busy, has a thick foreign accent, and is available only for FaceTime conversations. I’ve only spoken to him once—to get the diagnosis and directions. I had to give a list of my follow up questions to his office manager the following day. To date I have not heard back. Though I live in a large Ca metro area, I am told there are no good neurologists to transfer to, so if I change docs, it would be to one at Stanford, 30 miles away. Fortunately, I’ve been able to get more info from both my family doc and a vascular surgeon I consulted about the 70% closure in my carotid artery—which turns out not to be in my neck as I had originally understood, but also in my brain, and not treatable except with baby aspirin. Another reason to roll in a ball. I’m probably depressed, because I am sleeping way more than usual, but that change may be due to new medications for BP, cholesterol, and yes, anxiety. As time is going by, I find I’m focusing less on the possibility of a rupture—which is a blessing. I’m definitely finding comfort from Moltroub who is active on this site, and whom many of you must know. It is helpful not to have to do much explaining, and just to know someone else here already “knows”. Moltroub suggested that I start a new topic to connect with others who have been down this road, so here I am. I am hoping this period of withdrawal and anxiety, and having no interest in the small talk of others, will pass. I am interested in how it has been for you all. In perusing the posts of others, I feel humbled that my aneurysm is comparatively small, and that I have not personally experienced a burst. I hope that my relatively insignificant drama will nonetheless interest you in sharing any advice, observations and/or personal experiences you wish. Thank you in advance, my friends.

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Ms. Meggie,

You did it! I’m very proud of you! For folks that don’t know, a 30 mile drive in a large metro area can be upwards of a couple hours in a vehicle during rush hour. Yikes!

It sounds like the carotid artery could be the external or internal rather than the common carotid artery. Here’s an easy diagram to view Abnormalities of the head and neck arteries (Cerebrovascular Abnormalities) | Children's Wisconsin. The Circle of Willis as I understand it, is fed by the internal carotid arteries, though I can be incorrect. It’s been decades since my bio psych classes in which I learned about these things. Though I clearly remember “I’d rather have a bottle in front of me, than a frontal lobotomy” in my abnormal psych class LOL

Please remember the advice Merl gave about dealing with doctors. You are the consumer, customer, person paying the bill, tell them you don’t understand the medical language professionals often fall to and they are speaking too fast. It’s okay to tell them you are not accustomed to their accent and it takes a bit of time to process what they’re saying. They should have the courtesy and professionalism to slow down, ensuring you understand them. You are paying the bill after all. I’ve reminded one or two of this fact myself.

Take notes, if you’re engaged in an appointment be it FaceTime or physical presence, this can be difficult, have someone there with you. Each appointment I went to since rupture, I asked my loved ones if they had any questions for my Neurosurgeon. I would put them all into Notes on my phone and Dr. Quintero-Wolfe would go through them one by one. Eventually, I just handed her my phone. It was hilarious! She answered yes, no, might be, etc and we couldn’t follow her as she had my phone. I had to say “wait, wait wait”, everything was in 3’s back then. Dr. Quintero-Wolfe looked a bit confused and asked what the problem was, I couldn’t remember my questions. ROFLOL. She suggested we put the questions on BH’s phone and follow along. She is one smart cookie!

Make sure the person you have can take good notes. It’s faster to write them down then to type them most times. My BH isn’t so great at taking notes and we were often confounded by what was written, I threatened to fire BH in note taking. In one of my Child Psych classes we had to write down everything a child did in 15 min span of time, I learned to take good notes.

High cholesterol is the culprit I believe in blocking arteries. Besides the 81 mg aspirin, sounds like the vascular guy has you on meds to lower the culprit. I’m guessing they also discussed diet. Blocked arteries are the culprit for ischemic strokes, the ones most folks are familiar with, ruptures are often referred to as hemorrhagic strokes. Both result in blood not getting to a part of the brain.

Stretch out of the ball, enjoy life to its fullest. We are here but a short time and need to see the sun come up, the birds sing and the flowers bloom. Take a ride on that mare of yours so you can both enjoy what the Universe offers.

Hugs,
Moltroub

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Thank you dear friend for everything here. But what, pray, is BH? So far, my only conversation with the doc was at the barn with all its ambient horsey noise, wind and me trying to seek some privacy. It was not an appointment time, apparently just when it worked for his busy schedule to call me. No one at the barn but my trainer knows about my situation, and she cannot be my note taker. It’s not a good situation with the neurologist. Sometime beginning of April I need to change.

Yes, I am trying to focus on beauty in general, in addition to the sound of birds, sunshine, flowers and mostly, the touch, smell and sight of my mare. Riding is a gift, but not possible at the moment due to an outbreak of equine herpes at the ranch. In another week, maybe.
Hugs,
Meggie

Hey Meggie,
I can assure you your anxiety is normal. Those stresses are real. But in saying that a 2mm annie is highly unlikely to be deemed a high risk for rupture. Often with annies less than 10mm a ‘Wait and watch’ approach is suggested but that can depend on the annie location, if, within that ‘wait’ time, there is a noticeable expansion of the annie, a neuro may suggest intervention.
BUT
If neurosurgery can be avoided I would STRONGLY recommend it. I have had the ‘joy’ (Not) of enduring a few neurosurgeries and the recoveries were nasty with the subsequent outcome being less than desired.

Merl from the Modsupport Team
P.S. I don’t have a BH… …I am the ‘Better Half’ :rofl: :innocent: (But don’t tell her I said that :smile:)

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Dear Merl,
Thank you very much for supporting my anxiety, encouraging me to consider my annie (I’m starting to sound like an old hand) low risk for rupture, and advising against surgical intervention. That is a lot to be grateful for already. I just cannot tell you how much I appreciate the discovery of this website—through Google, NOT my neuro, who actually told me there were no suport groups! Knowing NASC is there is already a gift.

Hey Meggie,

Back when I started this neurosurgical journey, I can tell you, I was a mess. I was an absolute ball of stress. The internet was all fairly new back then and supports were very limited. Trying to get information from fellow patients was near on impossible, so I was left to stew in my own thoughts. Anxiety just doesn’t come close to explaining my mindset at the time. You have us, we know because we’ve lived it too.

I wouldn’t say I’m ‘advising against surgical intervention’. I’m certainly not a Dr and this is something that only a fully qualified neurologist or neurosurgeon can advise you on. There are a few different things that need to be taken into consideration by your medical team and in consultation with your medical reports in planning any path forward.

For some people (and I must admit I’ve been guilty of this) they go along to the medical appointments with the fixed idea that surgery is the only answer. Then when they get advised to ‘Wait and Watch’ things can get a little frustrating (OK, OK, so I got a little frustrated). They said ‘wait and watch’ :astonished. In my view ‘I have this timebomb in my head and you want me to WAIT? WHY???’

Some people can come through the neurosurgical journey relatively well, and initially I did fairly OK. It took me a while to recover but I got back to some sort of normal, I returned to work. Then they operated again… …again… …and again. The long term impacts of surgeries for me have been life changing. But the fact of the matter was I had no choice. The surgeon was very blunt when I asked “We could leave it all alone. Your symptoms could get progressively worse and eventually cause paralysis and death OR we can manage it with surgery” so my choices were fairly limited. Surgery OR Paralysis/Death.

Merl from the Modsupport Team

Good Morning Meggie! Merl said it! BH is Better Half. I had forgotten about the virus plaguing the barns where your beloved mare resides. I truly hope she comes out untouched and unscathed by it. To speak to a neurologist at a barn is quite difficult, if not impossible, especially if the barn is busy. The only time I can remember any barn I worked at being still was in the Summer heat of the CA afternoon. That’s a temperature and time when no beast is wanting to work, much less a human. I believe it is why the Hispanic Community so intelligently have siestas.

I’ve been thinking about your vascular surgeon saying your carotid artery cannot be fixed. Ask him/her to look into the Neuroform Atlas Stent. This is what was used to stabilize my little 5mm aneurysm this past December. My Neurosurgeon said Wake Forest Baptist Health had already put 100 in for ischemic stroke patients who have blocked arteries. It’s relatively new, having been approved by the FDA in 2019. Your surgeon may not yet be aware of it. She will do an angiogram this Summer, June or July, to ensure it’s placement, etc.

Hugs to you my new friend!
Moltroub

Hi
I’m new to this community My husband suffered an unruptured aneurysm on March 8th in NYC he has had over 6 surgeries and or procedures. He had stents put in 2x a trachea a feeding tube a brain drainage. The doctors keep telling me to be patient and I pray a lot. It’s scary reading all these stories I feel part of a family one that I may not necessarily had chosen but nonetheless am happy to have in our corner. Today he has yet another MRI ( I can’t tell you how many CT Scans and MRI he has had). Hoping the brain drain he has may be removed today or tomorrow and that yet another stent is not needed.

Iris, I’m new here too, and I don’t have personal experience with what you describe, but I’d like you to know that I will keep you and your husband in my prayers. For myself, I have discontinued reading the scary stories. They only increase my anxiety. Sending you thoughts of peace and comfort.

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Thank you for the tip, my friend. I will talk to him about it next visit. Maybe he meant that he personally doesn’t do stents in the brain. Also, Merl did not recommend brain surgeries in general. Do you agree?
Also do annies tend to grow? And if you have one, are you likely to develop another—as you did?
Meggie

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Hi again Merl,

Thank you for clarifying about surgeries. Certainly, if it is a matter of life and death, there is no question. Of course you proceed. I guess I’m wondering about pre-emptive surgeries to reduce anxiety. What do you think about that? The option hasn’t been offered to me—as I said earlier, I still waiting for a reply from my neurologist to questions I sent him weeks ago.
Meggie

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Thank you completely understand I will also pray for you. It’s just nice to hear from others that are going through this and can shed some light. I continue to pray for all.
:pray:

Welcome @Dabairis1 to our world wide community! It’s bitter sweet to have to join as we all realize, but we are here for you and your husband. You may want to start a new topic under the General tab so your story doesn’t get lost. Read the New User Help section to help you figure it out. If you’re still having difficulties reach out to myself or Mod Support. Those folks are the best!

@Meggie remember I am not a doctor, nor in the medical field. I just like research still and when I was able to work, I was gifted with cases that were complicated medical issues and since every case that rose to the level of CPS (Child Protective Services) had the potential of ending up in court, I wanted to be knowledgeable enough to sit on the witness stand and testify. That being said, I’ve only had one aneurysm but with four procedures to stabilize it. My aneurysm is 5mm on the LICA (left internal carotid artery) bifurcation. It’s at the top of the Circle of Willis. Bifurcation means where an artery splits. It is also a multilobed aneurysm. Instead of looking like a blueberry, it looks like a blackberry. According to my neurosurgeon this type is very rare. The outgrowths are often referred to as daughter sacs. My Neurosurgeon stopped counting at 24. As it ruptured, I had no choice on surgery. If I had known about aneurysms, I may have elected to just watch it if possible. I actually asked Dr. Quintero Wolfe one time and I believe she said with it being multilobed she would have wanted to coil it, that plus the location. It all has to do with size, location and experience of the surgeon if they offer a repair, other factors are age and health of the patient. Brain surgery has its risks, anesthesia has many risks, all of them are high. Don’t let anyone fool you into believing it’s a walk in the park just to get anesthesia. I have corrected a few Residents to the delight of my Neurosurgeon as well as an Anesthesiologist or two. Dr. Quintero-Wolfe taught me so well she would have me recite the dangers to the Residents.

We have a multitude of members that are on the Watch and Wait list. Would I avoid brain surgery, yes ma’am, I would if I could. One time, one of her Residents didn’t put enough pressure on my groin after an angiogram. I thought I had urinated all over the brand new table. I was apologizing profusely to Dr. Singh, a wonderful Neurosurgeon, (now in Washington State) for it and he said I was on a catheter. He looked and it was blood. He called Dr. Q-W back to the table and she literally threw the Resident away and did what I refer to as a handstand on the site. I was sent to the Cancer ward as it was empty that day. I went into anaphylaxis and the same Resident said no one is allergic to gadolinium. My throat was visibly swelling, breathing labored despite the relaxation breathing I was doing. The RN tried two more times to get the Benadryl shot ordered by the nitwit, whose name I won’t mention, and then I asked for my neurosurgeon. The RN was giving me the shot as soon as she heard yes. She literally saved my life that day. RNs are often the forgotten ones that do a great deal of work to make sure we survive. I now get pre-medicated and a Benadryl shot before and after. She also has the RN anesthetist keep one handy during any procedure. I’m allergic to both the Prednisone and Gadolinium and I am allergic to Iodine.

My last repair was due to my level of activity. I still move cinder block and timber occasionally, but the activity that pushed her to do it in December rather than wait for Spring may have had to do with gardening. We were expecting a hobby building to be built, so I moved the vegetable and herb garden to the front of the house. I had to take out the old landscaping and put in the new, mostly by hand and hand tools. She asked if I had a garden and I explained what I did. She said see you as soon as I can get a room in ICU. She didn’t have to do the angiogram prior to the repair as the MRA told her everything she needed to know. The neck had opened up and the coils compacted. The pandemic has limited the number of beds the neurosurgeons can have for elective surgeries, they have to keep many open for emergencies. I believe they also use some of the Neuro ICU beds for those with the virus as the rooms are isolated.

As far as do aneurysms grow, yes they can. That’s why folks with small aneurysms are put on the W&W list. Many times a Neurosurgeon will do an angiogram to see the walls of the little bugger, but not always. It falls back to their experience and knowledge as well as what literature they have read and if they agree with it.

Can we develop more than one aneurysm, yes ma’am that is also a risk. If I recall the material I’ve read correctly, it’s a greater risk for those of us who have ruptured. Though I’m not remembering why. It probably has to do with the weakness of the artery walls.

All the best,
Moltroub

Dear Moltroub,
Wow, you are an invaluable fund of information, especially for those of us who have a virtually inaccessible neurologist. Also, as I understand it, it isn’t a neurosurgeon who performs these corrective annie surgeries around here—it is a radiologist! As I said before, I’ll wait til he consults with said radiologist, then find a doc at Stanford who hopefully will be more accessible. Meanwhile, I’m storing for future reference all these amazing responses from both you and Merl.
Big Hugs,
Meggie

Hang in there, Dabairis1. I’m holding you and your husband in my prayers.

Hey Ms. Meggie, it might be a NeuroRadiologist.is my guess. I found this Endovascular Neurosurgery and Interventional Neuroradiology | Johns Hopkins Medicine Hopefully it helps.

I also did a quick internet search and you have a bunch in your area Best Neurosurgeons in San Jose, CA - Brain Surgeons | Healthgrades

But I’d probably pick Stanford. Stanford Neurosurgery | Neurosurgery | Stanford Medicine

They sure of a great rating. U.S. News & World Report: Stanford Hospital ranks 13th in nation - Climate Online

Hi Meggie,

and welcome! I know that feeling. I found mine , 3.5 mm. by accident also. about 11 years ago. I can say to you that try not to worry, and yes follow your doctor’s advice. Try to enjoy every second of your life and just continue monitor. ( well that is what I am doing). I do feel support here, knowing that I am not the only one dealing with this difficult medical issue. I do monitor my bp, I do not to smoke and do not drink. I think that helps. please feel free to reply to us for support.

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Hey Meggie,
It is my belief (and experience) that finding a neuro who will ‘pre-emptively’ operate is VERY rare, especially when you are non-symptomatic. Some people can be lucky enough to live their whole lives having a small annie without even knowing or like yourself, the finding is incidental via a dental scan or the such like.
One of the issues with pre-emptive is that the surgery may ‘fix’ the annie, but depending on the surgical procedure, it can have it’s own risks, and I mean serious risks. The surgeon needs to make an assessment of the risks vs benefits and if the risks are too great or more than the benefit, is it worth the risk?? And presently I think the view is that at 2mm, the surgery is too risky.

Now, as I stated earlier, I’m not a Dr, but at 2mm with minimal symptoms and an incidental find, you are most likely at minimal risk of rupture. I would suggest a ‘wait and watch’ approach is a very good option. BUT, if you ever have a sudden excruciating headache, one like you’ve never had before, the type that knocks you off your feet. Don’t mess around. Act immediately.

Merl from the Modsupport Team

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Merl, I cannot thank you enough for your kind response. I feel myself breathing just a bit easier. I may have mentioned I had brain surgery in 1975 for a meningioma, another incidental finding. Then as now, I am asking where is the gift, what am I supposed to learn? So far, this time I realize so-called “brainy” pursuits are a kind of pride, a source of ego strength—but ultimately something that stands in the way of love and service to others—if for no other reason than the time they require. The care and support from you and Moltroub—and the time taken to communicate them—are perfect examples of what I aspire to.

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First, I am glad you found this forum. You’re going to receive lots if support❤

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