Caverous sinus aneurysm

General
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After having a coil in 12 26 07 , I need your help. When my Annie was done not much was out there. You were pretty much on your own.I made thru the dents in side of head , pins coming lose with the plate and which was removed best thing ever.
Had an appt last week which it’s been many years to chech to see if all was well specially if I was moving I did not hear what the dr was saying to me about my scan. I was staring at the picture how large the Annie had grown in my face after all these years. I never head my dr talking to me and explains things,

I came home and cried for 2 days not because I was scared but just having back surgery in Jan and knee replacement in April. I need still needed heart surgery caught a heart virus .
I just decided to place my house up for sale it’s getting harder to take care of so I was placing it
on the market and take a trip down south looking for a new home or I was considering buying a camper that was going to be my home until. I wanted to travel until, until, I couldn’t any more. My dreams just went out the window. My dreams for me I just turned 68 a few days ago.My dreams , are important ,considering not have the surgery and enjoy time I have left , I am starting to feel the pressure in my eye and slight headaches.
I would need to be around for a year or so and I wouldn’t be able to fix the heart virus need a pace maker and a defoliators I would no longer able to have emergency mri if I needed one Hopefully the market on homes will be so high still. I would make quite a bit of money and if I traveled I would be fine I would see our beautiful USA.
So -please if anyone had this sugery contact me . I don’t know what to do . My family isn’t there for me I’m all alone no one to talk to or share my thoughts so it’s my decision . I could use any help .Thanks everyone.annie122607

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@Plain_Jane wow girl you have a lot on your plate! What has the surgeon recommended? Have you thought of seeking a second opinion? I know my neurosurgeon has removed at least one brain tumor of a friend’s friend. And yes it was a successful surgery. I’m pretty sure she has done it before. Her name is Dr. Stacey Quintero Wolfe and she is at WFBH Provider Index | Wake Forest Baptist Health She is on the Brain Tumor Specialty Team as you can see. Just have your images sent to her for an opinion. She is one of those rare specialists who not only smart as the dickens, has an excellent bedside manner, in my opinion.

Dreams are very important, dreams and goals make up who we are I believe. Don’t let go of them ever. They keep us focused and help us with strengthening our will to live, otherwise neither of us would be here. I had made a promise to BH about 30 years ago that we would dance in the streets when we are 80. Charlotte had a wonderful Jazz Festival back then and most everyone there was dancing in the streets. I believe it was Holly Hofmann that we listened to for a very long time. Holly Hofmann plays 'Close Your Eyes' - YouTube. We sorta camped out for several hours listening to her sets. It was the second thing I answered for the Neurosurgeons after my first coiling. Some of my then favorite jazz artists I can no longer listen to, my brain can’t tolerate it, but Holly Hofmann is a mainstay to this day.

I do hope you can travel and see the States. We live in an absolute beautiful vast country with many things to see and experience. I hope you get to dip your toes in both oceans and the Gulf, see the majesty of the Rockies and Sierra Nevada’s, feel the heat in the desert and their cold nights…

We are hear to listen and provide support whenever you need us
Moltroub

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Have a great nureo surgeon in Boston who has the hands of god. But I would like to know how many people have had the surgery.
Dreamed again looking at campers over week end so tempted but where I live in Mass the septic has to be checked for a title 5 if doesn’t pass has to be put in for about 30,000 and I have a beautiful yard.which
. Your right at a certain time in our lives we deserve a dream and take a little for us mine it is now . Do I gamble with a few years collect 500000 for selling my house then when life gets shitty do a thelma and Louise. While listening to I am a woman .Thank you for your reply back I really need to hear from people even though I have family which is nothing because theyarent part of my life now. Ive had 365 hand surgeries because I have bad osterarthis just had my back3 fusions done rleft me with nerve damage never was told. Had my knee replacement
all in 5 months now this.
Im more afraid of the stroke part. I was never this upset when they did my brain, but of course back 2007 didn’t know much about therm just heard the word scared you. Now I can sit and watch them do the operation.
I just have to gamble with a lot of decisions. I really would like to talk with someone who had the operation. Not much around on this subject. Sell a home 45 years belonging gone ,many physical problems. Or have the cancerous grow and cause blindness or palsy of the face etc.
A lot of ifs.

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@Plain_Jane , I don’t recall anyone here saying they have had that type of surgery, doesn’t mean they haven’t. I hope if any member has, they reply to you. I’m glad you like your surgeon, it’s always a positive, I like mine as well. You had mentioned wanting to travel to the South and Winston-Salem where Dr. Quintero-Wolfe fit the bill

Septic tanks are a pain. We just had ours replaced. We want a hobby shop with a bathroom and Environmental Health (EH) decided that the existing septic wasn’t to code for the house. It also had a couple cracks up near where the pipe comes into the tank. It was 50 years old and concrete doesn’t last forever. I was surprised with all the large trees, no roots had gotten into it. EH and I battled over them wanting to put the lids under ground which would’ve meant every time the seton tank pumpers came, they would have to dig up the lids. We get it cleaned out every five years and I didn’t want the yard screwed up and have to pay the extra costs. EH also made the septic company add another drain field which takes up a lot more yard and nothing but grass can be planted over it. Septic tank replacement, new drain field linked to existing and rough grading was $8,000, could not imagine paying $30,000, yikes!

Hang in there, perhaps another member will have better insight on the same type of cancer surgery you need.

All the best,
Moltroub

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I’m in Massachusetts too! I had my surgery in 2013. Everything is great so far! Is your doctor at Beth Israel? Or MGH?

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8 000 sounds a lot better what happens they come no upgrade the tank to a 1500 gallon one instead of 1000. Yea about 30,000 ha to be paid up front or t closing.
To much on my mind. Still haven’t heard any responses about cancerous annersyums reading on the subject is very limited but there must had been someone somewhere with one.
I’m 50 miles away from Boston so I have the best medical to choose from. Dr. Ogilvy is known being a wonderful neurosurgeon I got to know him through the years he’s a really nice guy with hands of god. He’s funny and the first day I meet him you could see he was nice I told him he wasn’t a snot. I feel safe in his hands just want to know about this Annie.

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Was it also was cancerous sinus Annie? I had my first one done at mgh then Dr Ogilvy moved to Beth Iseral and started a floor for annie victims . That one was quite different than this one. You’ve had no problems with blood thinners for strokes ?
I was shocked to see that this one had grown to about. 9 ml. It’s been the same for so many years and now was not the time. I was just ready to sign papers to sell and move. This has stopped me in my tracks .
I wish you the best Was this your first? Take care I never wanted to see the head trauma of mgh again but they were great.

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Thank you for your kindness no I don’t ask even neighbors of 45 years everyone lives there own life sad it was always that way that’s why I want to sell or get a camper
I would be happy just seeing people I live in a neigh hood has no traffic just people who live on street
I think that’s why so many physical alignments I’ve always done men’s things because I had to I was young having my first house at 23 put a lot of sweat in this place I do know I would help any one I’m not like my neigbors sad everyone keeps to their selves but always been like that
my shoulders are to heavy now but this last blow just sent me over with all my plans
Can’t change what’s there just like I caught a virus which attacked my heat it’s there and I’m at total peace cause I know I’m a good person with a heart even though it’s shot
Thank you for your kindness towards me it means a lot to me to know nice people are still out there in this crazy world you are one of them

Kdyd
September 28

Susan,

I’m sorry you are facing so much agony and alone. It would make anyone fearful, anxious, angry and confused. Know that you are not alone in having no family. I’m the same, family detached long ago. it is scarey, exhausting and difficult, and often a mystery why it happens. You deserve more help and kindness.

Know that folks here will listen, support, and offer blessings, positive thoughtfulness and kindness that will help you and is not so available and is too rare in non BAF world.

I’m worried you have so much hitting you at once. Do you have supports off line in real time? To talk to…or to help with any needs or your daily routines?

Are your medical, nurse, social work, helpers or others aware of your needs?

Sometimes saying it gets the attention to what is not obvious to some.

This is helpful to some, perhaps a church with a parish nurse organization or hospital with visiting nurse volunteers, or Faith in Action program would help you manage problems coming up.

Nurses are great caretakers, and quite good at planning and organizing to get practical things done.

I’m not very good at the practical, or specific, but hope that this might give you a bit of a map of ways to find helpful reliable folks in your area. And those you can talk to about you important next steps and decisions, as well as your doubts, your losses, your hopes and hesitations,

Blessings to you,
Be safe, Best wishes ahead!

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Plain_Jane,

You have been on my mind constantly since I read your post yesterday. I am so very sorry to read about the many challenges that you have.

This morning, I searched for guidance on prioritizing medical treatments. I’d like to share what I learned in the hope that it may help you. I don’t know if this was your diagnosis but it’s my best guess. Please see this website if you haven’t already. Cavernous Sinus Aneurysm - StatPearls - NCBI Bookshelf

An important takeaway from this article is “ Small asymptomatic cavernous sinus aneurysms less than 12 mm do not need emergent treatment. Most small aneurysms have a benign history and a very low risk of rupture. Lesions that are observed should be followed with serial CT scans or MRI imaging…… However, if the lesion is unstable, appears to be growing, or the patient is symptomatic, these patients need to be treated.”

“ The diagnosis and management of cavernous sinus aneurysms are best done with an interprofessional team that includes a neurologist, neurosurgeon, invasive radiologist, ophthalmologist, neurosurgical nurses, and rehab specialists.”

Also, several websites that I checked emphasized that treatment of heart issues come before cancer treatment. Because you have both of these concerns your interprofessional team will likely also need a cardiologist and an oncologist.

There was not much that explicitly said that an aneurysm should be treated first but, I did read an article on a collaboration between doctors for a patient that needed heart surgery and who also had a brain aneurysm. In that case, the doctors agreed to do the heart surgery first and for the neurosurgeon to be in the room just in case the patient experienced a bleed.

Since you mentioned your age, do you by chance have a Medicare Advantage policy? You may be entitled to some medical counseling / assistance with understanding your issues, choices, prioritization and finding doctors. They maybe also be able to assist you with putting together your team.

I’m a very practical person, so I suggest that you:

a. Take care of the septic tank issue and get it off your plate of things to worry about as soon as it is possible to do so.

b. RA is very challenging. Take care of as many of your physical issues that you can through therapy, exercise and eating well.

I’m also a praying person, so I encourage you to PRAY and to write in a journal, note book, tablet every morning to reduce your stress and to gain mental clarity around all that you face. The writing also provides an opportunity to face your fears and anger.

A good set of questions about the choices you need to make is:

  1. What do I need to know that I already know?
  2. What do I need to know that I don’t already know? Then go find the answers.

Keep updating your dream list. :blush:

May God bless you with healing and peace.

Carole

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Carole
Thank you so much for caring and such a nice letter. This year alone since dec 3 fusions in my back knee surgery in April , last summer I was in a hand cast for 12 weeks. Who gets a virus in their heart to. Now this Annie has blown me away it’s so new to do only 1 percent of people have them I knew I had it when my first one was done 122607 . It just started to grow . Can’t do much about it.
I’ve searched and searched found one person who had it done waiting for her to get back. I had some questions. What bothers me is the blood thinners for strokes. That you have to be on for months.
Still playing in my yard, but I got Lyme and banosios so I’ve been down for 4 weeks. I usually get a dear ticke bite every year and get Lyme certainly doesn’t help my osteoarthritis first place it hits. Thank you for being such a caring person it was nice you did the research and looked things up for me. Thank you so much your a wonderful kind caring woman.

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Since you are in the same boat with no family people can’t imagine what it’s like handling all crap alone. I don’t share my life with any one where I’ve lived for 45 years .
Back fusions 3 of them in Jan knee surgery in April now I got Lyme and babeisos again. That has rocked me for at lest 6 weeks. Who get heart virus that destroys their heart 25 to 35 hand surgeries. I’m suppose to smile no I’m miserable I hate my life I need to get out of here . I was selling my house when I found out canverous sinus Annie has grown . So I have to put on hold.until spring… hope prices stay high.
I just want to get away from here and all the bad memories I rather be by my self near the ocean. I like airstream campers small one and just keep driving and see this beautiful country .thanks for understanding wish you all lived by and we could laugh .
Thank you

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Could you help me and explain what they did. How long on blood thinners? Being done in November thankyou so much

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@Plain_Jane, Have you called Dr. Ogilvey and asked his RN? I imagine his staff will know what blood thinner you will be put on and for how long. I wasn’t put on any blood thinners for my coilings but was for the stent and coils. Realizing I have a different location, it was Plavix, for about 3 months, then 325mg aspirin for about 3 months until my follow up angiogram, and now 81 mg aspirin for the rest of my life.

Hope you get an answer, but I would call his office, every doctor has their own way of doing things.
Moltroub