Brain Aneurysm Support Community

Would like to be your voice

Hey all! I’m heading to DC to talk with some folks about Brain Aneurysms for Lobby Day. I really want to be a voice for all of you. After all, that’s what lobbying is all about. I have permission to take boxes of #2 pencils - thank you Carol! If you’re not going, what would you want the folks in US Govt to know? Anything on living with a BA or rupture? Medical care? Disability? Give me some ideas please…

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First of all, thanks for your efforts, it's good to know that people will be made aware of this. Education is so important, I knew absolutely nothing about aneurysms until I was the unfortunate owner of one. I think what is important to me, as I look back on my experience, (craniotomy with clip in December 2015), is the way post-op care is handled. For me the first two months post-op went well, but the next four months have been difficult emotionally and mentally. It's like having PTSD, and not knowing where to turn. Contact with the neurosurgeon has been disappointing, he turned me loose at 6 weeks post op and said good luck, we're done with you. No follow up or communication after that, I am on my own. This website site has been great source of information and comfort, thanks to all. So, more advocacy for education and where to turn post op for help is important to me.

JT is spot on. I also had my craniotomy 12/2015 with ACOM and A1 clipping. After my 3 month follow up my surgeon told me the same thing. I felt abandoned. My follow up has been with my family practice and neurologist for all the side effects. This site has been the BEST source of information. Especially when it comes to the side effects of the craniotomy. There needs to be more education to include what helps with all the side effects. Like the crazy itchy sensation I get with my scalp. I washed my hair with Tar shampoo and it helped some to calm the nerves. I had chemotherapy in 2007 and when I lost my hair, I had crazy sensations. My doc told me to wash my baldness. Just because I look ok doesn’t mean I feel ok. It would be great to have a transition coordinator and counseling available for those days you feel like you are on the edge. I am so thankful my family practice doc has pulled me off the edge. Thank you for taking on this enormous task.

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I’m there with you, we must be our own advocates!

Remember, it’s not just me going there’s lots of folks. Well a few anyhow but I find its more important to tell other’s stories than my own. Last year Christina Buckley, Director of BAF showed our little group around with Tim the lawyer and Todd Helton who lost their 15 year old the beginning of school to a rupture.



When I speak to the Aides or my Congesssman they know my story and can hear I have been affected but to have folks like you both gives me a stronger platform to stand on when I plead for them to listen I thank you! Make sure you contact your Congressperson in the House of Representatives to get them to pass the bill! The Senate has already passed it, but we need the House as well

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One of the things that saved my life was my sister. She had a rupture 5 years earlier and when they discovered the aneurysm from my scan, I was in for surgery so quickly because of what happened to my sister. I always tell her that she saved my life. The thing is, my sister worked for 30 years for US Air and after 3 months she received a letter that her benefits were being severed. She had to go on disability and Medicaid so that she could continue to get medical coverage. Now her husband's insurance will only cover to a certain point and sometimes her meds cost over $500 a month out of pocket. The hospital and rehab bills hit them so hard that they are close to bankruptcy. It just stinks that you work your whole life and follow the rules and a debilitating illness can take your life away. I'm not sure what I am asking but just thought it was worth knowing how it does not just affect you physically.

I agree with JT. I had a triple clipping and it's the same thing JT said and even my neuro surgeon said, as far as the NS is concerned, I'm "perfect". When you talk to them they think you are crazy. They do not understand the issues with balance, cognitive issues, changes in personality, taste, or the debilitating fear we feel every time we get a headache. They think their job is done and move on to the next. That's why I told my NS that a study needs to be done on what we go through AFTER the surgery.

Knock 'em dead in DC! If I had known, I would have gone with you :)

Carol

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Thank you Mol and all those who will travel to DC to lobby on our behalf. I've another Aneurysm to fix so unable to be there too.

I want them to know we need to better educate the public & medical community about Brain Aneurysm's. Better diagnoses is needed!!! People also need to be aware it could happen to them!!! We all know about Cancer, Heart Disease and Diabetes, but who talks about Brain Aneurysm's.

I was not diagnosed correctly at the first ER I was brought to and this was a Trauma Center Hospital. I had classic sudden severe headache/eye pain and severe vomiting, but I was treated for a pain medicine reaction and sent home. They kept testing me for a stoke and I remember telling them, I'm not having a stoke, something is wrong in Head!!!

Two days later the horrible pain continued, my eye lid had closed, unable to open and when held open my eye was clearly abnormal, so this time I was taken to my Internist, who immediacy saw this was a brain issue and sent me to her hospital ER, where they immediately did Brain Scans, found the Aneurysm's and sent me by ambulance to Massachusetts General Hospital where I could be properly treated. Because of the delay in a correct diagnose it has taken a long time for my eye to heal and I hope it will heal completely.

I was fortunate my aneurysms did not rupture, but one was large and bulged pressing into my eye nerves causing the deficit. Now I am able to type this, but many others are not as fortunate. Something needs to be done to help them with medical costs and therapies as long as they need. Gaining Disability Benefits needs to be easier for them.

That is so true Starbirder. How many times you read here that people were sent home, or they thought they were drunk, etc. As important as it is to get this treated as quickly as possible you would think the medical community would automatically do a scan.

Carol

starbirder said:

Thank you Mol and all those who will travel to DC to lobby on our behalf. I've another Aneurysm to fix so unable to be there too.

I want them to know we need to better educate the public & medical community about Brain Aneurysm's. Better diagnoses is needed!!! People also need to be aware it could happen to them!!! We all know about Cancer, Heart Disease and Diabetes, but who talks about Brain Aneurysm's.

I was not diagnosed correctly at the first ER I was brought to and this was a Trauma Center Hospital. I had classic sudden severe headache/eye pain and severe vomiting, but I was treated for a pain medicine reaction and sent home. They kept testing me for a stoke and I remember telling them, I'm not having a stoke, something is wrong in Head!!!

Two days later the horrible pain continued, my eye lid had closed, unable to open and when held open my eye was clearly abnormal, so this time I was taken to my Internist, who immediacy saw this was a brain issue and sent me to her hospital ER, where they immediately did Brain Scans, found the Aneurysm's and sent me by ambulance to Massachusetts General Hospital where I could be properly treated. Because of the delay in a correct diagnose it has taken a long time for my eye to heal and I hope it will heal completely.

I was fortunate my aneurysms did not rupture, but one was large and bulged pressing into my eye nerves causing the deficit. Now I am able to type this, but many others are not as fortunate. Something needs to be done to help them with medical costs and therapies as long as they need. Gaining Disability Benefits needs to be easier for them.

Hey all! Thanks for the feedback. Carol, start making plans for next May :). I think there’s almost 70 folks here between the BAF and The Bee Foundation. We get three to five minutes each to speak. We have 8 offices scheduled, NC, KY, and TN. There are four in our group this year plus the lawyer and we get about 15-30 min to plead our case.

So my plan is to open with the pencil break when it’s my turn, stress the lack of follow up care especially in rural areas and lack of education within not just the medical community, but society as well, nobody knows what to do with us and we don’t know what to do for ourselves and due in part to lack of funding, no one is being trained in providing post care to those of us who need it which will fit in great with the phase 4 study NIH wants to do with the International Brain Aneurysm study

Now I need to do some research on the Congresspeople we are assigned to meet so I can try to make it personal for them

Another thing to procure funding is to study very long term outcome after aneurysm, craniotomy, hemorrhage. No one is studying the 20-40 year outcome. The surgeons think they are done after a year, and many of us have no contact with neurologists. Are we more at risk of dementia, Parkinson’s,or other neurological diseases or vision loss, hearing loss, or other loss of sense? What is the risk of a repeat bleed after 20 years? What are the long term cognitive issues is people who have had a good initial outcome? In a way it is a positive suggestion, because ours is the first generation of those who have survived well initially (recognizing that some have not been so lucky) but we are in uncharted territory because we do not know our long term risks. Thank you for being our voice. I’m a 21 year survivor of ruptured PCA aneurysm, craniotomy, seizure disorder, cranioplasty…

Way to go! You will do great and I'm am so glad you will be speaking for all of us. We are a lucky group because we all fight for each other without ever having met :)

Carol

Moltroub said:

Hey all! Thanks for the feedback. Carol, start making plans for next May :). I think there's almost 70 folks here between the BAF and The Bee Foundation. We get three to five minutes each to speak. We have 8 offices scheduled, NC, KY, and TN. There are four in our group this year plus the lawyer and we get about 15-30 min to plead our case.

So my plan is to open with the pencil break when it's my turn, stress the lack of follow up care especially in rural areas and lack of education within not just the medical community, but society as well, nobody knows what to do with us and we don't know what to do for ourselves and due in part to lack of funding, no one is being trained in providing post care to those of us who need it which will fit in great with the phase 4 study NIH wants to do with the International Brain Aneurysm study

Now I need to do some research on the Congresspeople we are assigned to meet so I can try to make it personal for them

The pencils were a big hit, sometimes a big emotional hit. We determined to start having them break two. At one meeting one of the pencils was so destroyed it was impossible to put back together. I shared “that was Ellie’s brain” as many of you know, Ellie was 14 when the aneurysm in her brain stem ruptured. When I’m feeling sorry for myself, I think of Todd and Karen and what their love for Ellie has become. They still remain a parents voice for their children, but they have also become a strong voice for all of us. If I can exemplify half their courage and compassion, I will consider this life revision successful.

I’m exhausted as I’m sure the others are as well. So many folks on The Hill have lost loved ones or have had someone diagnosed with either rupture or unruptured since we were there last May. So many people who could have not agreed to meet with us and yet they still did.

Oh and Carol, a Neuro NP is taking the pencil example to TN. She said it was one of the best (forgot the word) and will be using it with her patients!

Wow!Going through some discusions.I know was some time back but realize what a great support you have been to so many people.Thank you truly!:us::fireworks:

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This was prior to mine, but I would like to throw out there that the survivors should be given a disabled status, primarily for disabled plates. I know it was a year before I started being “ok” to walk to the store.

I am at 15+ months and can tell you that there are days my dizziness should have an advantage of not having to walk far, especially in this crazy StL heat/humidity

Ask any of your physicians, one of them may agree to do the paperwork. Be careful of getting a handicap tag. My parents used to live in Missouri and was advised against the tag, just use the hanger. It was for safety reasons. Apparently the permanent tag is an icon for folks with bad judgement to steal, mug, harm the disabled

Yes, I just thought the hanging one - just makes sense on the “off” days. Otherwise, I park far away

So I should simply ask the physician?

Bill McNabb

Yes, all you need to do is ask any of your doctors, the worse they can say is “No”. And they might check on what exactly is causing the dizziness. Cindy gets dizzy and the neurologist said it was some type of migraine, can’t remember which type. The cardiologist just did the nuclear test to make sure it’s not her heart as her PCP thought it might be. She can’t make any sudden changes in body position and she doesn’t have an aneurysm.

I hope somebody got Tom Massie. He’s a pleasant person to deal with and a good listener. Hal Rogers is a little gruff acting but it"s just his personality. Yarmouth, has no time for anybody who isn’t in his district. In my dictionary, Yarmouth’s picture is next to jerk.

In Ky the DMV has a form that needs to be completed then signed by the doctor. Then you need to take the form back to the DMV and sign it there in front of a notary. My neurosurgeon’s office said they don’t deal with the handicap placards. You might want to check with your DMV for their requirements.