Hi I'm Suzanne

[Suzanne]

This is my first day on this wonderful, amazing and very helpful site and I am so happy and impressed with the sharing and support!
I had a craniotomy this past December at New York Presbyterian Hospital for a 8mm long neck anterior carotid artery aneurysm with daughter aneurysms on top. It started dissecting on the operating table and the two endoneurovascular surgeons working on me saved my life. Therefore, my surgery time doubled. I thought at first that my memory issues was from 7 hours of anesthesia than from the surgery. Actually, my doctors say it is from both.

I scheduled a 4 hour memory test by a neuropsychologist four months after my surgery to get a baseline of what I knew was some memory loss which the test showed that I did. The psychologist said that it would be a year to a year and a half before my short term, spelling and word retrieval would recover to my presurgical state. He encouraged me to keep the stress level down, sleep well, take college courses, exercise and eat as healthy as possible. I consider it a small price to pay for a successful surgery.

I also have noticed a slight personality change. Less tolerant of small talk and anything that is crowded or noisy or too busy. I am in hopes that some of this will calm down over time as well.
I have a wonderful therapist that has experience in brain trauma that is helping me in many ways to navigate this new life.

I do know that I am far more aware that everyday is far more precious and I am grateful to have found a supportive community to learn and grow with!

[Moltroub]

Welcome! What a wonderful message of self advocating! Finding the right professionals to help us in recovery is no easy feat, good for you. I’m wondering if we need to split this topic, so you have your own. @DickD what do you think?

It does take a long time to get back to where we want to be and patience is the key here. Hydration and increased protein will be extremely beneficial, ask your doc how much of each.

College classes! Whoopi! I loved college, always had a class a semester that was not in my major, but something I just wanted to study. One of my favorites was American Revolution, I was the first Dev Psych major that ever took the class . I hope you enjoy college as much as I did.

[DickD]

Yes, I’ve moved @Suzanne to her own topic. Quite different lines of conversation.

[Suzanne]

Good morning!

Great idea to put this conversation into its on topic. Thank you for your kind response and sharing the recovery information and what college courses you have enjoyed!

I am a retired university professor and will find it far less stressful to be on the other side of the desk!

I will review the instructions on how to navigate this most beneficial site.

Yesterday was the first time I have seen the audiologist who recommended that I get an MRI and saved my life.
She informed me that the apparently “louder” noises and “brighter” lights that seem uncomfortable at times is something called Hyperacusis.

She works at a VA hospital and has many patients with traumatic brain injuries that often experience these symptoms. She also said that she has several patients that have had both clippings and coils/stents that experience these sensations.

What to do about it? Remove my hearing aids during the day when I am by myself to help reduce external stimuli. Since I can hear without the aids this will work out.
Also she sent me home with some serious earplugs that will be of help when I am in a noisy situation and do not need to converse.
Oops! Looks like this reply should be under my topic page.

Thanks again for the support and wonderful suggestions!
Suzanne

[Moltroub]

Quite😂

[Moltroub]

If you run into problems with the site, please feel free to reach out to either myself or @ModSupport. I’m always asking them for help😂

I worked under one Professor who was deathly afraid of rats. Her work around was to tell the class what to do and leave the room before the rats were brought into the lab, then I took over. One day this snarky student brought his rat in before she left, it didn’t go over well at all. I do believe he was told to find another major🤣

Sounds like your Audiologist is the best ever! My hearing vastly improved after rupture. The dog and I would both turn our heads towards a noise that no one else heard. I’ve worked diligently to overcome it and lights. I’ve never read here about any other member receiving ear plugs from their Audiologist. Thank you so much for sharing this information, I’m sure it will help many of us!

[ChrisC]

Thanks for sharing this info. I’ve been struggling with this for about a week, at least that’s when I noticed the ringing in my ears. This gives me a new path to follow upon my return home. You mentioned “serious earplugs” can you elaborate on this? Thanks again for taking the time to share more of your story.

And big thanks @Moltroub for pointing me in this direction! You rock!

[Suzanne]

Greetings, Friends and fellow Survivors!

Please pardon my absence as I have been accompanying my 65 yro sister to first an MRI and next day MRA with and without contrast, to check for any aneurysms since I have several ICAs on both right and left side.

The first MRI for my sister showed:
Small left anterior choroidal artery origin aneurysm measuring up to 3mm.

Small right posterior communicating artery origin infundibulum
versus aneurysm measuring up to 2 mm. (not sure what that means)

No symptoms just related to me, managed hypertension, former smoker and our maternal uncle who had a ruptured ICA and passed at 53.
Second MRA with and without contrast showed the same diagnosis.

I will accompany her to the local (South Carolina) neurosurgeon for an opinion then on to Duke University to see Neurosurgeon Dr.Hauck.

Dr.Hauck is also one of my consulting Neurosurgeons and much closer in location for my in between NYC yearly exams.

Dr.Sander Connelly and Dr.Shawn Levine from New York Presbyterian Hospital performed and saved my life this pass December with the craniotomy on my 8mm long neck ICA with two daughter aneurysms on top.

I traveled to NYC from SC to see Drs. Connelly and Levine because they were/are considered to be in the list of the top brain aneurysms docs on the East Coast. And in my opinion they are. The 8mm long neck with daughter aneurysms started dissenting mid surgery and they both saved my life.

My sister is also sending her MRA images and reports to Drs.Connelly and Levine at NY Presbyterian Cornell for their opinion.

Please highly encourage any first and second degree generation relatives to get “their heads checked” my 46 year old son had an MRI and thankfully no ICAs but his carotid outside his cranium has a “loop” in it. I was advised to encourage all first and second generation relatives to continue to have MRIs every five years. Now my sister will have to have her adult children do the same.

As for the serious ear plugs, they are from the military hospital where my angel audiologist practices. They are for the recruits on the fireing range. It helps to wear them instead of my hearing aids in loud situations. The hearing aids have been miraculous with tricking my brain not to pay attention with the tinnitus.

Be well and thanks to all if you for sharing! I don’t feel like I am just floating all alone in outer space anymore!

[Suzanne]

That is too funny about the rat being brought into the classroom! Not so funny for the Professor I am sure!

[Moltroub]

I hear Duke is pretty good ROFLOL. I think I’ll stay at WFBH, it’s closer to us and I will most likely remain loyal to Dr. Quintero-Wolfe until she retires or I stop requiring a Neurosurgeon. Name dropping is a wonderful thing here for all of us! I think of it as networking…so thank you for supplying several names on the East Coast!

I think the first time BH and I met Dr. Q-W together may have been the first or second week of NSICU. She told us to contact family as well, she wanted them to have images right away. BH did that for me. One niece was told the next time she had a migraine, they would scan her, a nephew blew it off as unrelated to him. Another niece told her son’s neurologist and they had him scanned the next week. He has some other issues with his brain and I was relieved to hear no aneurysms. But the neurologist there in TX set up scans for her and her other sons. I think some see family history as important, others not so much. Then there’s the question of insurance apparently as this is what the oldest niece was told which is why she has to wait.

I wonder why your sister didn’t get the MRI and MRA back to back instead of having to return the next day…did someone not convey the order correctly?

[DickD]

@Suzanne

Small right posterior communicating artery origin infundibulum
versus aneurysm measuring up to 2 mm. (not sure what that means)

I think this means that the feature that can be seen on scan is not perfectly clear whether it is an aneurysm or an infundibulum. The difference is whether an artery branches off the peak of the apparent sac or from the side or adjacent to it. The infundibulum is where the branch is from the peak (and I think lower risk).

Likely the doc will want an angiogram to look at it closely enough to see one way v other.

[Suzanne]

Good morning!

I agree with you. It doesn’t hurt to include neurosurgeon recommendations that members in this community we well as nationally have had success with. And I think it is also a good idea to mention not necessarily by name, experiences that were not so successful. That’s how we gather more information to make the best decisions possible to handle our own unique neurological situations.

Recently, I had an experience with a local neurosurgeon for a consultation to see if I could get my diagnostic angiogram, due in December, for NY Presbyterian closer to home and not have to make the longer to trip Duke.
I will not state here what this neurosurgeon said and wanted to do, but I would have made a HUGE mistake if I had listened to him.

I believe in second and sometimes third opinions and I did just that before deciding on the two neurosurgeons that saved my life.
That is why my sister is going to have several neuro opinions as well.

Genetics does play a role I have been told by every neurosurgeon I have spoken with. It’s just that some of us get chosen and some of us don’t. I am glad to hear that your family has been checked and everyone is ok.

Here is another reason for an MRI, hearing loss more so in one ear than the other. Sometimes it is not an acoustic neuroma and it is a good reason to have an MRI such as it was in my case. Without the audiologist mentioning this to me, I would have never known about the freeloaders in my brain.

Loved your comment about “when you would not need a neurosurgeon”.

I am grateful to have yours and the supportive community here. This is still all new to me. December will be a year since my surgery and don’t you know I am going to celebrate!

Be well and all the best!
Suzanne

[Suzanne]

Thank you, Dick, for making this term more understandable to me. I will pass this on to my sister.
I really appreciate all of you and can’t thank y’all enough for your support!

[Moltroub]

@Suzanne

December will be a year since my surgery and don’t you know I am going to celebrate!

We have a dinner party every year in November to thank all of those folks that help support us throughout the year. When the pandemic hit and we couldn’t meet with those vey special people, we did other things to thank them. Sometimes as recipients of a rupture or not, we tend to think we’re in it all by ourselves. But we aren’t! We have this excellent group and with a little sight we have those in our lives that do seemingly little things for us that are really a big deal. Even our Veterinarian had her assistants put the dogs in their wash tub at the clinic because I couldn’t bend over to give them a bath at home. That’s a huge deal for me as I’m not keen on a dirty dog😂

[Suzanne]

What a lovely idea to celebrate with those gracious friends that helped during recovery! I love that and just may have to borrow your
Thoughtful gesture.
I hope your recovery is still going well and all scans are clear. I wish I had received a list of written instructions upon being released from the hospital about what not to do as I don’t remember all that was said.

Looks like i have started growing a couple small aneurysms one on each side of the clipping according to the latest angiogram. I suppose that makes sense that the integrity of the carotid artery where the long neck aneurysm was would have the possibility of issues as well. Anyone else experience a reoccurrence of aneurysms so soon after surgery?

[Moltroub]

Yes ma’am recovery still moves ahead, it’s a long, slow process in which we need o be patient and kind with ourselves. Easier said then done for me, personally as I always tend to push the bar😂

The only rules I can remember from being released after rupture, pretty much stayed the same for each procedure until the last one. (My aneurysm wasn’t stabilized until procedure four). Stiff neck, nausea or vomiting, headache I had to go to the ER. A lot of visits for the first three years as I wasn’t accustomed to migraines. There’s the 40 pound weight limit which I have trouble with following. And of course the rest, hydration and protein intake rules; which were three 32 ounce Gatorade with twice the water each day. The protein is 90 gms minimum. I can still have neurological effects rear up if I don’t follow the hydration and protein rules.

After procedure 3, I forgot my rules and had a very difficult time with everything, I reached out to the wonderful triage RN that was assigned to Dr. Q-W but she was on maternity leave and I had another wonderful RN that knew me as they cover each other when needed. She tried to get the NP to make an appointment and stressed she had never heard me so bad. She told me she was more than concerned. So I called the appointment desk and told them “I no play with NP no more”. I actually said that, though I used her name . My words were really, really bad. The wonderful woman at the appointment desk also knew me well, bypassed the NP and spoke to Dr. Q-W. We agreed I would see another NP as an appointment with Dr Q-W was weeks away and close to when I was scheduled anyhow.

Can you imagine our surprise that an NP whom we had never seen actually read my chart! She was great! She reminded me of my rules, I wrote them down and posted them on the refrigerator to remember to hydrate, rest, eat protein, hydrate some more and rest. Dr. Q-W has a fantastic NP now that she was allowed to actually be part of the hiring process. Reach out through your portal and they’ll tell you your rules!

[Suzanne]

Thank you! Such important information to follow. I suppose we all are going to have different healing needs, however, those post op instructions you shared probably apply to us all. I am not sure what gave me the idea that having brain aneurysms were most likely a “one and done” process. It sounds like you have had four? procedures. Yikes. That’s a lot of stress both mentally and physically. None of us know what the future will hold for us in terms of our brain health. But we can certainly make the very best of each day and try and keep the “what if’s” at bay! My life has changed in many ways since this almost one year since the aneurysms were discovered. I see my NYC surgeons in November for the one year anniversary appointment and hear what they have to say about the latest angiogram results. Thinking about how I want to use your idea about throwing a celebration! Love that idea!

I find the support and information here valuable and look forward to reading the posts. It helps to know that one is not on this BA island by themselves.
Y’all be well!
Suzanne

[Suzanne]

ps. Have I officially signed in as a new member? I just saw the list and there is another Suzanne who had her clipping surgery the same day I did. I am from Greenville, SC.
I may have skipped that sign in part? who knows?!

[DickD]

@Suzanne

You joined back in December last year and @Moltroub was trying to welcome people individually last year but it got a bit out of hand, so I set up the New Member Introductions area and she started welcoming people on a weekly basis instead. I’m afraid you were one of the people who got missed!

However, Ms @Moltroub is pretty darned faithful because the new members in my forum don’t get a welcome at all!! If they want a welcome, they have to write it themselves. So M looks after you Aneurysm people like royalty.

A very warm, if belated, welcome to you!

Richard
Volunteer moderator at www.avmsurvivors.org

[Moltroub]

Yes ma’am 4 procedures for one 5 mm multilobed LICA aneurysm. It started with my rupture in Nov 2013 where she stopped counting at 24 daughter sacs so I’m not really sure how many it had, a bunch…and ended with the Neuroform Atlas Stent in Dec 2020. It was really great to hear Dr. Quintero-Wolfe say she was very confident she got it fixed.

I can honestly say it wasn’t mentally a bother as I had little or no affect (emotions) for years, so that was a gift in my book when it comes to having another repair. BH felt all the emotions… All the angiograms that came with them set me back neurologically and physically. It’s like falling off a horse which I have done a few times, brush off your pants, catch the horse, and get right back on. Never give up!

@DickD, I call him Mr. Richard, is correct, I had difficulties welcoming each new member individually, which was our rule for moderators back when I started. I would have to relearn how to navigate the site, that seemed to change a good bit and could never remember where to welcome people. It was frustrating to say the least. Mr. Richard was the one who set me up a specific welcome area so I could find it. Someone said I just needed to do it weekly which is much easier for me. The folks @ModSupport -Ms. Sharon, Merl and Mr. Richard for awhile now are extremely helpful and kind to me to say the least. They understand and have seen that I’m not as together as many people think I am😂