Check up yesterday and all is good!

We headed to Baptist yesterday to get my images and see Dr. Quintero-Wolfe for my two year follow up after the last angiogram. Can you believe I was in a new MR machine at Davie Medical Center that only took 15 minutes? Wowza! They did both the MRI and MRA in 15 minutes! I still can’t believe it and I was there. The very kind tech said it’s the newest machine. It was new, all clean and bright with a mirror so I could see them in their room. We didn’t know what to do with the hours left to us and we decided to go to a museum. Wouldn’t you know it, all the ones we looked up in Winston-Salem are closed on Monday😂

We stopped at a coffee shop inside a grocery store, did a bit of shopping, they had fruit on sale, and I do love fruit of all types. Picked up a couple thank you cards and it was almost time to head to Baptist. But of course I had to change directions as something overcame me and we headed to a club store to pick up some snacks for Dr. Q-W and Ms. Ryann and their crew. I was still in the fruit mood and picked up fruit, nuts and some Korean jerky which I have a fondness for. BH said I could keep the jerky, BH doesn’t like it, any jerky, but I was insistent that it go to them. Off to Baptist we went…

Baptist is under construction again and we opted for valet parking which isn’t that much more than trying to park, pay for the time spent we park the car which we usually do but the construction has closed some parking decks and it was a hot mess. We made it in time to get checked in and there we were with fruit, nuts and jerky in tow.

Saw Ms. Ryan first after my vitals, BP was up a bit but understandably so and of course hugs. She and Dr. Q-W reviewed my questions prior to me coming in and we got to tag team with the answers. And I was allowed some time to get a few pictures off the computer screen! Thank y’all for teaching me that!

Here’s my rupture image (all the white is the blood that escaped my little bugger)

Here’s my stent and all the coils (the three dots are part of it that goes into the LACA from the LICA)

And here’s the results, they have new software!

How cool is that! As you can see, I’m a bit torturous (squiggly). All my arteries are so it’s a good thing she’s an expert with AVMs

We went over the symptoms I’ve been having, apparently all stress and doing too much related which we pretty much had figured out. I do believe Ms. Ryan may have rolled her eyes when I asked why I was having more issues moving 6”x6”x12’ treated timbers then I did 20 or 30 years ago when I could have picked one up with no problems😂. She suggested I be more aware of what I’m doing though, I think. I was excited y’all and I’m sticking to it for memory lapse. They hadn’t had time for a lunch break, there was a women waiting for surgery.

Call it what you will, Divine Intervention or the Universe watching out for them but they hadn’t eaten.

Hugs again and a short wait for Dr. Quintero-Wolfe. Did y’all know how much we love these women? Dr. Q-W and I go back to 11/8/2013 when she stopped the bleeding and I’ve seen her a time or two as y’all know. She mentioned the need to get to the OR asked about the fruit etc and I said you need to practice what your preach hydration, protein and rest. A good laugh that I remembered.

She caught me up on what’s been happening in her world of Neurosurgery - she won three grants! I will start its own topic because I’m simply amazed with where they’re heading and I think y’all will be too! The stent is working perfectly and has stayed where she put it despite what I do. Can you tell I’m still excited?

She had to get to the OR to hopefully fix a patient whose aneurysm ruptured and the woman had already been through some other brain vessel issues. So I said see you in five years which is what I have to do for my pituitary adenoma. She said sooner than that.

She quickly explained there was a new RN of 20 years or so who’s been hired for a new position and Dr. Q-W wants me to help her! So I will be getting a call. The best I can remember is the RN is going to help develop a course of action for patients that rupture on how to get more help quicker. The wait time for cognitive behavior therapy in Winston Salem is nine months out! Dr. Q-W knows that there were none for me when I ruptured in my county. She shared that as a surgeon, she had the mindset that her job was done when she finished and because of some of her patients learned that isn’t how it is for us. She’s been rethinking her mindset and is changing it to help us who’ve ruptured get along better after release.

We did discuss networking with Wake Voice for a minute as an alternative to get something started sooner. My first thought was for the RN to make up a list of what the patient needed for follow up in the city they live in that could be given to their PCP. After all, a PCP should know what their area services are, better than a hospital we are flown to that is far from where we live. I also shared what @Suszanne has been wanting up in Canada! So I said get the patient evaluated by PT, OT, ST before they leave ICU.

So for me, great news and I’m really happy! So here’s a thought- next time you have to see your Neurosurgeon start a fire under them to help change they way they view things, challenge them if need be, what ever it takes. Remind them that we have problems that go on long after the rupture and we need help to navigate those issues. Be nice about it but stick to it like a dog with a bone. Who knows, your Neurosurgeon may be as good as mine!

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@Moltroub Well I definitely am fighting for that. Christine has put her name down to support what I said in my letter to our minister of health. Deidre at Beth Israel is looking over and hopefully adding a few more names. I was involved with the conference last Friday to talk about domain and definitions . I let them know that I believed that if you received rehab in hospital (all resources) that carried out after discharge that we would be close to making a full recovery.( even . "Judy Huang M.D. from Johns Hopkins Department of Neurosurgery stated that with rapid, expert treatment, patients can often recover fully.” That is awesome news @Moltroub. Way to advocate for the resources and help make changes! And way to go to your RN who is helping to change the way rehab plans are set up and administered. You also might add a neuropsychologist and counsellor in there too! I am so happy for you!! :+1: :100: :partying_face:

@Moltroub
Congratulations! I’m so happy to hear about the great news! It must be a wonderful feeling for you.
I’m impressed by the way you tries to make the aftercare better for people with ruptured aneurysms. You have helped so many people in this community and now you are spreading your knowledge about this topic to the healthcare professionals.

Good for you! We really do need to advocate for proper help. I think, but do not know, that one of the difficulties for us in the States is we are often on private insurance when we rupture. They have their own set of rules for how much they will pay, when and what for.

The other issues would be available services in the area we actually reside in and the knowledge to obtain those service away from the hospital we were sent to. I was really lucky because of working in my field and being a frequent flier to PT, I knew I needed several services, many people wouldn’t know. The PCP I had actually told me he didn’t know what to do with me and said I needed a new Neurosurgeon. So I got a new PCP, I also couldn’t drive that far and the one that was closer is fantastic. Fortunately, I was still seeing Dr. Q-W a lot and would ask her to get me what I needed and I’d give her the name and numbers to things like PT and ST. I think she was pretty frustrated as well with my PCP, but never asked her. But she would send in the prescription for me. We had no OTs other than one at the hospital and many rehab/convalescent facilities that worked with adults. I didn’t qualify for placement in a rehab per my insurance. There were none that I could see for help.

There was no way for my Doc to know what was available 60 miles away much less in another State. She would make suggestions or her PA at the time would suggest different services, Neurologist was one. I had no cause to work with one prior so wasn’t really familiar with the field. Dr Yapundich, Neurologist, wanted me to do some biometrics and work with a therapist. Well I knew most of the therapists because of my field and that wouldn’t have been good. We actually went through all of them in his office and I would tell him different clients I had sent to them and staffed with them. Most people won’t have that hurdle. We decided Dr. Indenbaum neuropsychologist was my best bet and I wanted testing. I knew my brain wasn’t working correctly :joy:. Dr. Gary and I worked with several clients but I had never met him in person, just a lot of phone calls over the years. I lucked out again and he extended his hours so he could fit me in. He worked a bit with me and he had BH come. We saw online the other day he has added CBT to his list of what he can do so I imagine his CEUs were focused on Cognitive Behavioral Therapy.

Baptist where I was flown to gets a lot of people from Virginia and some from South Carolina. So if we can start with baby steps and fill the gap between us getting help from a therapist trained in brain trauma and get assessments for the patient before release is a start. Having the neurosurgeons write a note to the PCP so they’re not in the “I don’t know what to do with you” mindset is a start, I’m hoping.

I applaud you on everything you’re doing and I hope Canada gets it. Here in the States, our government seems to be a bit slower in that they have never passed Ellie’s Law which wouldn’t do what we are both asking for but it would put a few dollars into researching brain aneurysms. I believe it’s only $10 million over the course of a few years. For us, that may seem like a lot, it does to me. But in the federal funding, it’s practically nothing. Lobbying is exhausting and when I developed DM, I couldn’t hardly walk so I haven’t been back. I do write to my Congressman and Senators every year, we just need more folks to do that. Oh my, I’ve gotten on my soap box and need to stop! But don’t you stop, keep up your awesome work!

Thank you so much! Since you’ve joined you have been an inspiration to me and many others. I worked with a lot of ED and PED RNs back in the day and have nothing but the highest regard for RNs. The awesome thing about this RN, is she’s been a family member of someone who ruptured and knows the aftermath personally. I can’t wait to meet her!

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I am glad you got good news !! I love looking at the images Its rather crazy I thought when I first saw mine just to see your brain is amazing <3 I have to check when my next follow up is hopefully the fourth one that could not be operated on is not growing and the other three where they put the pipeline diverter in is still doing ok !! Sounds like you have amazing care and I love my Drs and due to other health issues I see 6 specialist and having good ones are the most important part of health issues !! Wishing you continued good health

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Oh my six specialists! Hopefully you don’t have to see them all the time. It’s really nice when we can stop seeing one, I always do a happy dance😂

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It is exhausting !! Pancreatic Specialist for chronic pancreatic, Gastroenterologist for Gerds I had reflux surgery twice. Endrocronologist for Graves disease, Neurologist for Chronic Migraines 30 plus years for them !! Dermatologist ! Urologist ! Brain Doctor !! And of course my OBGYN and Primary …I think I have them all :rofl:

Congrats on the good test results. What a relief for you and BH🙂.

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Sounds like it! I am down to Neurosurgeon who won’t be seeing me as a patient for five years, Rheum, Neurologist NP, Dermatologist PA who I don’t see unless needed, he dumped everything on to the Rheumatologist, PCP of course and she does my gyn stuff. Have a GI but I don’t see her very often though I did have to go to a different one when the ultrasound came back as suspicious of cancer and my PCP didn’t want me to wait the six months to get into my regular GI doc. It was all because of the DM, thankfully. He said I have a “surprisingly healthy upper GI for someone my age”, my older friends that it was an insult I didn’t take it that way at all. Just saw the Urologist for the yearly check up and she said don’t come back unless you need me! And I was able to get down to yearly visits to the allergist, no more shots!

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@Moltroub Well I received a letter from the premier of BC and he was also going to pass my letter to a whole bunch of other ministers and take into consideration we need for rehab and continuing care. Sometimes I feel like they are just placating but I will continue letting them know that is super important and they need to listen! You are seeing the fighter in me! :women_wrestling: I heard from the minister of health and it was a fluffy letter ( a letter that has really no content and says a lot of fluff). I will be writing back again with a little bit more insistance!

Keep at them! In the States, our government runs a bit different but seems that we also feel like we are banging our heads against a wall trying to get a bill passed. What makes sense to us, doesn’t always compute with them. Sometimes in lobbying with the BAF and The Bee Foundation we would meet with whomever held the office for whatever Senate or House of Representatives (don’t call them Representatives they prefer Congressman) for a district or State. Many times the Congressman of a district, would meet with the small group, most times for the Senate we met with whomever was over their health issues.

Todd Helton lost his daughter, Ellie when she was 15 to a ruptured aneurysm. Todd has a friend, Kevin who is quite adept at knowing how our government works and they drafted what is called Ellie’s Law. It’s an “ask” as Kevin taught us to call it in having our government set aside a small amount $5 million USD for a course of five years in research. $5 million isn’t that much for a government though to us as individuals it’s a heck of a lot. It either gets stuck in committee or the House votes for it and the Senate does not or the Senate does and the House does not. I think they’re in cahoots​:crazy_face::rofl:.

Really I think that if all the special interest groups for aneurysms could put aside their differences and work together so the government is bombarded with hundreds preferably thousands of individuals they would listen. It would be improbable for all those people to get to D.C. on Lobby Day, but the way around that is to get constituents (voters) to write letters to their respective politicians. The more letters a politician receives the more they seem to take notice. Kevin explained that a small ask can lead to the big asks. So in asking for a small one, if it gets passed, it’s much easier to say ok now let’s do this…. Perhaps if you were able to get more people behind you, Canadian politicians would sit up and take notice. Another thing would be to find out how many Canadians have ruptured and present that to your Ministers. By the way, I was also told not to call them politicians either.:crazy_face::joy:

Hello,
Wish you all health and happiness. I have 2 mm unruptured aneurysm on the internal carotid artery-ophthalmic segment. I monitor it every 6 months through MRI. The last results were a bit confusing. It says my aneurysm is 1.5 mm that means it decreased in size. Is it possible? Thank you all.

I’ve read here they can. I’ve also experienced it can be the difference in machines and radiologists. Let’s celebrate!