Good luck on the angiogram today Rick, I hope you get great news!
Check with the therapist who did the testing whether or not you should give HR the results. I was in the Navy and adhere to the “Never Again Volunteer Yourself” philosophy. HIPPA suggests to me that unless necessary one shouldn’t give medical information to employers but I may be wrong.
Good point about work. I can wait they don’t know. They do know about the angiogram that I am at ICU bed right now. That is the most important thing now anyways, now.
Hope to be home today.
Thank you for everything
Hoping you made it home o.k.! Sending you healing thoughts and a restful night’s sleep! 
Met the new surgeon this morning. Then we went down for the angiogram. It was different then the one last year not because of my allergy but because he chose to do it a different way. It’s always painful because they keep you awake. Like an MRI you can’t move at certain times and you have to hold your breath so they sedate you but not knock you out.
The injection is hot and excruciatingly painful behind my eye because of where my aneurysm is.
But after he reviewed last years pics with todays, he feels we can wait on doing any surgery. Like he said I can go get another opinion, but we were happy with him. He’s young and has worked in major areas including St. Louis and Texas. He is from Canada so this is closer to home for him so he plans to stay in Utica which we are thankful.
I haven’t been able to move or sit up for the four hours after because he went through my groin and I have Factor 5 Leiden and we couldn’t risk me bleeding out. I didn’t see the pictures but my parents did.
We will go see him in his office in a couple weeks and he’ll show me everything then. He’s also referring me to a hematologist to research the factor 5 and the aneurysm and get their opinion.
We then saw my neurologist and he released me. I haven’t updated him on SS or anything as the angiogram was out priority so tomorrow I’m gonna get an appointment at his office.
As for the aneurysm… we continue with a new MRA in six months. Then six months after have another angiogram which is what I had today. Of course this is all baring nothing else happens.
It’s a relief to finally get some good news today! I have to rest for the weekend, but I should be able to go back to work Monday if I feel up to it. Then I continue with all my drs and therapies as I have been. And hopefully get out and see people again!
This morning I didn’t know how I was going to react in fact I felt the worst I have in a long time mentally. It’s a tough week between the psych analysis and this angiogram and not meeting the new surgeon till today. But we needed these tests today. I haven’t hardly left my house in over a month except for appointments so I will be ready to get out again!
I’m also going to call the disability lawyer tomorrow. Luckily I don’t need surgery, but I still have a lot of follow ups and a lot of issues going on. Lots of meds I can’t get off. when I see these drs out of the hospital I can review all of it with them. All the nurses agreed that following up with psych is a good thing for me.
The psychologist is a young guy I see at his office, which is the same office as the memory test dr, her title slips me right now. But there is another psych dr that zooms in with us for our appointments. They are all in the same group as the rest of my drs and they all talk. And I feel I have a good mix and things are in the right direction finally.
Thank you all! I’m home finally and can sleep tonight !
Glad to hear all went fairly smoothly. I was just IG scrolling (not supposed to do before bed, but alas, here I am!). But I wanted to share this little Stephen Colbert snip about music The Late Show on Instagram: "According to Dr. Francis Collins, music gives you endorphins. Endorphins make you happy. Dr. Collins’s book, “The Road to Wisdom,” is out now! #Colbert"
As I have mentioned in my own experience, if you happen upon it, I really found music to help me through my times at the hospital… there is a Live “Passenger” concert (I think it was in San Fran post-Covid) on Amazon Music, if you have it, that I kept listening to. Just find your go to station….
I’m yet to hear of anybody enjoying an angio, but at least it’s done now.
Big, BIG +1 on the music therapy. Mentally, anything neurological can carry an extremely heavy load. My mind can travel at a million miles an hour, especially in recovery when I’m doing nothing. Music can help occupy the mind and slow those thoughts. It was a blessing for me.
Rest well,
Merl from the Modsupport Team
Sounds like you’ve got a good doc and I’m happy to read you like him! I’m going to add another +1 to @Kimoy on recommendation of music, it can really help with our emotions. The RNs in ICU taught me about Pandora and I have made a few “stations” of music I like to listen to, Amazon has some free music and there’s the plethora of different music I’ve been collecting for about 50 years. Lots of choices out there. Rest and take it easy!
I love music. Listened to a lot of it at the hospital, thanks for sharing !
So it’s been a while since I posted and I did see my new surgeon at his office as well as my neurologist at his office. I explained to both what has been going on and my cognitive exam results and the drs recommendations as well as applying for social security…
My surgeon suggested a sleep study to possibly help with memory issues and fatigue, which no other drs have up till now. He also wants me to see a Hematologist since I have the Factor 5, which my mother has seen one but I haven’t yet.
I had my sleep appointment this morning. It was just a consult and my dad went with me who has sleep apnea. I am hoping that I don’t have it but it would just be one more thing.
I told her everything that was going on over the past 2 years as I haven’t met her yet. Her assessment was that it was a good idea for me to come in. She set me up with a night over but not till late March as they are busy. She said there are multiple sleep disorders and it does sound like I have a good chance of having one. So they will test me and assess it. Her report after stated that I had a hard time focusing.
Now I agree with what she says, but as I told her fatigue is common in aneurysm survivors…. She obviously knows that I have a lot of other conditions going on so we’ll see what the test says.
I have also been trying to see my primary dr. And I keep getting it pushed back. I finally called twice last week and was asked why I needed to see her, I was driving and I said look I am mentally disabled and can’t think of all the reasons right now but I can’t keep waiting and rescheduled and pushed back. Luckily it worked to get me in next week.
I also got a confirmation from SS stating that we request a hearing, now we are waiting for a date for a zoom call trial.
Hey Rick,
Merl here.
Good on you for standing your ground with the Dr’s. Medicos dropping appointments is never nice and can be a little confronting for some of us. I had to stand my ground with medicos a few times. I think for me, like you, when we have multiple issues going on, it’s common for differing causes to be identified as primary.
I had to go through a process of elimination. All of the doctor’s came up with differing opinions and differing treatment options, so I trialled them all. One of their ideas might work and the one I reject may just be that ‘magic bullet’ I’ve been hunting for. I was trialled on all sorts of meds, heart meds, epilepsy meds, psych meds etc. I trialled hydrotherapy, acupuncture, manipulative massage, reflexology etc. If a dr suggested it, I trialled it AND I documented it all. I found going to differing specialists they’d order all the same tests, all the same scans. When I’d tell them I’d already had them, they’d want reports. I didn’t have them, so… …repeat scans. Now, I keep copies of EVERYTHING. If I get a scan, I get a copy. If I get a test, I get a copy. Then when Dr ‘X’ requires a scan I’ve previously had, I’ve got the information. It can also show them that you are being proactive in your own care.
Good luck with your next appointment and please, do keep us informed.
Merl from the Modsupport Team.
Hey Rick! Sounds like you’ve been a busy guy. I learned here in our group to keep everything and document it in an easy to remember place. In all the years I’ve been navigating as a patient, I’ve only had trouble getting one set of anesthesia records, and still haven’t gotten them as allegedly it doesn’t exist.
Let us know when you get your court date. Please listen to your attorney and do everything told to you. I remember mine said not to wear my sunglasses so I’d lose my words - true story as odd as it sounds. I ended up not having to go to court. I think zoom hearings sound convenient. For me, we would have had to drive 3 hours and were told to get to Raleigh the day before so we wouldn’t be late.
Interesting about the records… since I haven’t been able to see my primary dr in so long and I see my mental therapist every 2 weeks he was helping me with referrals… he is a younger guy kind of new to the system I think…
Last week he said I talked to my supervisor about you not seeing your primary dr and him helping me with referrals. I got the impression that he shouldn’t have to deal with that stuff.
He asked me about records saying I have Factor 5, which I asked my mom about. The dr that originally ordered them has retired and those records were sent to my current primary that I have been waiting to see, who also changed offices over the last year.
My surgeon did say I could get any records I wanted I just have to request. I do have copies of both my MRIs (1 on each shoulder) on my computer
I’ll keep you guys posted about the court date, thanks
No worries about your therapist Rick, he has to staff with his Supervisor. The boss needs to know what the people under them are working on and in cases of therapy, how clients are progressing. So it’s similar to any other job out there.
So it’s been 2 years since my rupture. We finally have a date for my zoom trial for SS. I am currently taking a break from work as they usually give us part of the winter off, this year was optional when they asked me but I took it. Sucks I am not making $ but I needed the break. Of course that was on my own so I don’t have a drs excuse for that.
Anyways. I got my w2 and I made around $10,000 last year as I work part time and seasonal. My dad told me to take my W2s from when before my rupture to my lawyer. I have told him that SS doesn’t care how much I make now compared to before (which I make in a month I used to make in a week).
I didn’t tell my parents that I have been using Credit Cards to live over the last 2 years as they would be mad but I have to live. The money I make at work pays my car payment.
I also just found out that my neurologist closed his office. I don’t know what is going to happen with that. Tomorrow they are sending me to a Heart Dr I haven’t seen yet.
I see my therapist and my primary dr next week. I feel it’s just the same thing over and over. I’m depressed and anxious. I am relieved I got a zoom trial date finally for SS. I will be relieved when we hear what the judge says.
I’m frustrated I can’t lose weight. I don’t have energy. I like to walk outside but I can’t now as the ground is frozen and I am afraid of falling.
I’ve been wanting to update on here then I forget
Hope you have a good day tomorrow and a good week ahead 
Hey Rick! Thanks for the update, I’ve been thinking about you!
Sounds like you once again have a lot on your plate. Listen to your Dad, give your W2’s to your attorney or at least call their office and ask if they need them. They may say no they already have that information but never assume is what I learned working with attorneys. Because you don’t have SSDI yet, I believe they go back about 10 years, retirement is 35 years. I lost about a year as my SSDI didn’t go back to the year I ruptured, so that minimal income from my comp time (sick leave, vacation, etc) was included in their formula.
Are you going to your lawyers office for the zoom meeting with SS? Listen to your attorney and please do exactly what you’re told, no more and no less. This is extremely important as it’s not only how they get paid but how you win your case. I cannot stress this enough. Disability lawyers know how to win their cases. When is your appointment?
If the money you make pays for your car, how are you paying for those credit cards? I’m really concerned about this as we often end up deeper in debt than we should. I read here about members having to declare bankruptcy because they can’t pay the bills. It causes even more stress and we definitely don’t want to get stressed out, especially if we’ve ruptured. Remember any back pay they decide on isn’t as much as you think (I get about 1/3 of my yearly salary back in 2013 and it hasn’t gone up much from that point) and the attorney gets paid first from the SSDI decision if it’s in your favor.
You’ll get a new neurologist, I had to get several over the first few years after rupture. The first I had I went once and couldn’t tolerate being in his disco office, didn’t care he went to Harvard. He literally had a glass mirror ball and shiny chrome everywhere - it hurt my head, not to mention two TVs on different stations playing very loud. The next I liked very much but he and his partners sold out to a big conglomerate and the office manager wasn’t worth his paycheck IMHO the doc and I fired each other and I was doing ok but then I wasn’t so another neurologist who went to specialize in one area I didn’t need, then another who relocated and now I see a NP, I have never met the new neurologist that came a few years back. When he started, I had a call that said he couldn’t see me as the State wouldn’t allow it which I have never understood and so see Sergey who I quite like. We’ve only had one hiccup in my care and he’s never made the same mistake. He’s a very bright young to me guy.
Hang in there everything will get straightened out. Do something fun inside until Spring and the weather gets nice again.
Thank you for the advice. I do pay on my cards, but not much. I have thought about claiming bankruptcy but I haven’t gotten there yet. It’s all just depressing.
My zoom trial is early April. I will meet with my lawyer in March along with a sleep study and now the cardiologist is having me do a bunch of tests stress tests and others in February and March to rule out the possibility of other aneurysms.
I have to reread what you wrote because I can’t remember everything you asked about. But thanks again
The place where I was doing physical therapy has a gym and I joined it. I try to go 2-3 times a week. I rode exercise bikes and stretch my arms since my shoulders aren’t right. But I like it there. There is just 4 people that work there and is busier for the therapy then the gym. And it’s close to home so that’s good too
That’s really good Rick, such a big positive to keep moving in the right direction! It’s okay for us when we can’t remember everything, it’s a part of us that we, who ruptured, have to keep working on. I’m 11 years out and the last 3 days have been a bit on the rocky side. I refer to those kinds of days as “bad brain days”.
I must have been really bad yesterday, because the young man who hung our sheet rock talked to me for a long time and wanted to call the gentleman who connected us for some odd reason. I also called the Vet’s office because one of our dogs started limping and I couldn’t remember what to do. We’ve been going to the same place for over 30 years. They’re very kind about it. Forgot to call a local church for some donations we want to send to our mountains and forgot something else. I’ll eventually remember but maybe not today since I’m ignoring my reminders I set in my phone.
Yesterday I went to my favorite small diner and let them serve me chicken livers. Yes they make good chicken livers but I wanted eggrolls, I like their boom boom sauce. I go during slow times and Ms Tanya who owns the joint told me to sit and rest a bit. My speech wasn’t so great so she didn’t try to chit chat which I really appreciated.
Just keep trying to take a step forward which I think is probably one of my mottos.
So I had a sleep study the other night. Slept horrible but they were able to confirm that I have sleep apnea and recommend an auto Pap machine.
I also had pics taken Monday of my throat and stomach as Cardiology wants to check for other aneurysms. I go for a stress test tomorrow.
I am waiting this afternoon for my lawyer to call about my SS case. Hopefully they will clarify what is going on when we do the zoom trial.
And found out my neurologist is only seeing patients in the hospital so they closed his office. Got a referral to a new one next month after my zoom trial
