So I got denied from SS again. So my lawyer is working on the next steps. I was going to an older guy for mental help, but it turns out I didn’t like everything he said. I don’t know if I posted this but I text him for my last appointment and said I would be seeking help elsewhere as I believed that the therapy should help me not make me feel more depressed. He just said good luck then without any compassion.
I have been going to physical therapy for my frozen shoulder, and I have been doing it all summer and working on it. It has become my job. My insurance stopped payment as they say I can stretch it myself, but I can’t. And the therapy place I’m going for that has continued to let me come and not been billing me.
I finally got into a specialist and have an MRI scheduled for next week. And my specialist has given me an updated paperwork for my other shoulder which is a tight also and needs some therapy so that I can continue to go and get them paid.
I had to have an MRA scheduled this summer. I had called my surgeons office to find out first that he is no longer seeing patients out of the hospital. Then I was able to get the MRA done. The plan was to go over it tomorrow when I see my neurologist. But I was called last week into the surgeons office. I met with another surgeon who is visiting from another hospital. And he told us that my surgeon was moving to Ohio so he was done. He then showed me a pic from my MrA and said that there is too much of a gap so I need more coiling or a stent put in. He was able to arrange for mom and I to talk on the phone with my precious surgeon a couple days later. He explained to me that last august I had a cath-angiogram and this was an MrA do they were 2 different types of pictures. And that he had intentionally left some spacing in for blood flow with hopes that it wouldn’t expand. He is done but could get the visiting surgeon to do the procedure that we had met with who was a close friend of his. We should get another cath-angiogram done.
We then got a call this week saying the visiting surgeon is not going to be back to either. All the drs I talked with all agree that I can’t wait for this and that it needs to be checked asap if it does need more surgery it can’t be waited on. So we scheduled through my surgeons office with a new surgeon that they don’t know. My mom is concerned and wanted to go somewhere else but it’s so much confusion, paperwork, and delays to go to new places i just said let’s do it here then if I need surgery will see where to go after.
I see my neurologist tomorrow. So hopefully he can help navigate all of this
Hey @R1ck
Best of luck with your appointment tomorrow. It can be VERY disconcerting when differing Dr’s give us differing opinions. It can make an already stressful situation even more stressful.
I hope you can get some clarity.
Merl from the Modsupport Team
Rick,
So sorry you are being hit with so many irritations and obstacles right now, with more potential neuro-interventional procedures being the most stressful. I’m also sorry you have to deal with a new, unknown neurosurgeon. I hope you’ll be pleasantly surprised and get someone great that you can rely on now, and in the future. Please keep us posted, we’ll be waiting for news.
Judi
I saw my neurologist today for the first time in a year. We talked more about the MRA and doing a repeat cath-angiogram then anything else. We had it scheduled for mid September and he says he wants me to stay over night this time between being premdicated for the dye allergy and to make sure my levels are good as my potassium crashed last year, which he was on vacation when all of that happened. But I was able to get a new primary care dr through all of that being he was gone.
He also assured us he brought in the new surgeon and the one we had needed a break and some things changed. So overall I was glad I had scheduled through my surgeons office and not tried to call around. He also put my mom’s mind at ease with all of this.
I will be seeing him in the hopstial and then reviewing with him the follow ups. Then we can get into my other appointments and drs and everything else.
Thanks all for the support, as we all know this isn’t easy
Hey @R1ck
It never is and at times I do wonder if others can actually comprehend how ‘UN-easy’ it can all be.
I’ve been on this journey for many years now and it never gets any easier for us, no matter how many times people say “It’ll be okay…”, until I get those answers, I’m a ball of stress.
My only advice is to listen to what they say and ask questions. If you need, write a list of questions. Often I’ve gone to these appointments, left and thought “ohh, I should have asked about X,Y and Z…”. Now, I have a list. I get my wife to think of her questions too, she may think of other details that need answers that I may not have thought of, so we discuss it all before the appointment. AND…
Best of luck with it all.
Merl from the Modsupport Team
Having a dye allergy isn’t fun at all! Please make sure to have them put it in your chart so the RNA and Anesthesiologist knows and has the medications ready if needed.
So my neurologist is having me stay overnight the night before my procedure. He was on vacation during the last test so missed out on all the fun I had.
I agree with his thoughts they can premed me and keep an eye on all my levels make sure I’m stable and able to be released.
I saw a foot dr today as I have dead toenails and flat foot. Luckily my inserts for my flat feet are good. He was able to help with my toenails, but as he said my insurance won’t pay him for it, and he didn’t charge me. He said he was 67 and not in it for the $ but in it to help people. He said he has trained a lot of drs over the years and it was good talking to him about my surgeon and other drs and to get his perspective on all of it.
On an unrelated note I have been sick with a cough for three or so weeks now. I have seen different drs about it who have had differing opinions and prescribed different meds.
I finally got a call back today that said it’s not whooping cough but it sounds very similar to me. It’s been going around and it lasts about 4-6 weeks. I think I’m on around week 3 or so. They have prescribed me with more Codiene to help the cough but it just takes time. Not been fun and adding to the stress of the aneurysm and everything else.
Thanks for the input everyone
My goodness Rick, that’s a lot to be dealing with, hang in there!
So I’m scheduled with the brand new surgeon next week for the cath-angiogram. They are supposed to call me today for the ‘pre-admin’ garbage. I call it garbage as they called before they were supposed to, left me a message to call back so I did and had to leave them a message.
Then a girl called me back and said I see you have a pre-admin call scheduled for this afternoon and they can answer your questions then. I said I thought that was this call so she put me on hold and then a nurse got on the phone. She then asked if this was with my previous surgeon I told her he left. She said she knew he was leaving but she was on vacation.
She called back and had no information for me. Nothing about spending the night or my meds list for my allergy to the dye.
So now I’m waiting for another call back. A nurse practitioner was supposed to call me at 12:30 today which is in 3 minutes. They will call me back later after they can see what they can find out
Hi Rick -
I am so sorry that you have had so much extra stuff to handle while trying to heal and recover. Certainly doesn’t help, does it? 
I hope that the NP has called you back, and you have gotten the answers that you need.
I will continue to send healing energy your way, and that all goes well with you from here on out!
Please continue to keep us posted on how you are you doing with both the process AND yourself.
I wish these places would understand the unnecessary stress they add to a patient when they appear disorganized. Sorry Rick. It’s really unfair you have to deal with that.
Thank you all. I had gotten a call back from 2 different people and still don’t have things straight. I told one of the ladies from the surgeons office how much this is unorganized and such a cluster and she said everything is lined up and I had to give the neurlogoist time to line up his end. I said it was over a month ago that I saw him and them I told both people that I talked with that this was all a lot for me to handle. I now have to call back Monday to go over everything while I’m going to be my first day back to work, which I’m only able to work 2 days next week.
And I wait to hear about spending the night from the neurologist office
I talked with my lawyers office the other day and they told me I have to take a journal and I have to word things a certain way and they are working on getting my records.
This is all so much. I told my psychologist the other day it would have been easier if the aneurysm killed me. And why didn’t it?
I also yesterday had my memory test with outpatient psych that I have been waiting to get in. She was nice and talked with my mom and I. We go back to get the results next week. I have no idea how it went and how it’s supposed to go. I think I did ok but I know there were some things I didn’t do well with. So again I don’t know how it all plays apart.
But I do know I figure that her evaluation and my neurologist are the biggest key parts to my social security case. And up till now I’ve been denied 2 times and they have been unable to get files from my neurologist.
Obviously if I do need more surgery that will be important part to the case too
The dr lady at the evaluation asked me about disability. And I said we do have a lawyer working on the case (which I believe she already knew that but I guess wanted to hear me say it) and my mom told her that a friend of hers said that ‘I need to have a dr say I can’t work… I shouldn’t be working because it’s not helping my case even though I’m working part time.’ And that I can’t ever afford to move out of my parents or have any sort of life by working part time and not making enough $ to live on.
Another question that stuck with me was she gave me a depression questionnaire to fill out. And the last question was about if I had interest in sex. I know it’s a general questionnaire which I do have interest in it. But honestly how can I ever have it again when I’m in my mid 40s, live with my parents, make no $ and have no prospect for anything going forward. I can’t wait to discuss that in therapy
Hey Rick! Remember to breathe, sometimes when I get frustrated I forget until I realize that I’m not breathing deep and slow. It helps to set my brain straight. I have never spent the night before a procedure in the hospital and I do get prednisone to premedicate with. BH carries the benedryl that Dr. Shaw suggested when he worked with my Neurosurgeon at the hospital. He told me to take one right before I go in for my procedure.
I don’t think my insurance both before on BCBS and now on Medicare would pay for a night stay before an elective procedure. I’m thinking that there may be some problems with the scheduler from your doctor’s office getting approval, hopefully not.
I do get confused with the new players on my doctor’s team and just last week had to ask one about the hierarchy. Fortunately most are really patient about it Expected the triage RN,Tamara; the scheduler not so much, I may have gotten on to her and then told Ms Ryann, the NP about it. The scheduler kept scheduling me incorrectly at the wrong place and then argued about it with me. I may or may not have told her she could get in her car, pick me up and drive me two hours from my home and then return me, or she could call the proper hospital that’s ten miles from my house and I can drive myself. I ended up sending the number to the local hospital to Ms Ryann along with their fax number - twice! It took the scheduler four times to get the order to the correct place! I miss Ms Helen who was Dr. Q-W’s scheduler for the first five or six years of my journey with a rupture. She retired.
We often say we have to be our own advocate and as difficult and frustrating as it can be, that’s what we need to do. Try using your portal so everything is written down and part of your medical record. Some sage advice, I learned in my career -“If it isn’t written down, it didn’t happen”. That goes for the medical field as well.
So talking about the portal, I checked the other night and not all my visits are listed and not everything is thorough depends on the dr or nurse I guess. Or I’m not seeing everything.
But my memory Dr (I can’t think of what they call the specialist), that I just had the test with this past week posted my results and her recommendations. Of course I can’t decipher it all, but mom and I have an appointment coming up Tuesday afternoon with her to go over it.
But it does say she recommends that I cannot work full time and that applying for social security is what she recommends.
To me, her report and my neurologist (which hasn’t submitted one) are the most important ones for the SS approval, also any surgical updates.
So I will see what she says Tuesday and then talk to my lawyer.
I was upset when I read it, but was relieved to read it, and after it set in, glad that this is the proof that I need for my case. I haven’t told anyone or my parents this yet, but I think my parents will be happy as they have been telling me all along that I can’t work doing what I did before.
I guess I’ve realized that working isn’t as important to me as it was. But if I win my case and can stay part time like I am that’s something. And I’ve been told I can work part time, it’s allowed. I haven’t told work I’ve been applying for it, so as far as I know they don’t know, they haven’t mentioned it to me. But a friend of mine says that they will get a kickback to keep me on as a disabled employee, which the company has been great to me, so I hope they do
@R1ck -
So glad to hear that you got the confirmation that you wanted!
It certainly sounds like your company is standing by you, which is very admirable. Will keep sending positive thoughts your way that you get the answers you need!
I think the memory doctor may be a licensed Clinical Psychologist as they’re usually the type of Psychologists that do testing. It’s dependent on the letters after her name. Here’s a rather lengthy description of it all and what SSA uses. Overview of Psychological Testing - Psychological Testing in the Service of Disability Determination - NCBI Bookshelf
Best of luck and please keep us posted!
I just posted part of this in another thread about ‘over-doing it’
As some know I’ve been trying to get into a cognitive therapist to test my memory skills and determine where I’m at mentally. I did take the tests and today we met with her to get the results. This is a mix of the report she gave us and what she said-
She gets the impression that I appear that I am better then I am, I asked her to explain what that meant. She said I tend to max out what I am doing to look like I’m maintaining but its sometimes overwhelming for me
Some skills are in a normal range while others are not there. She said I utilize things like my phone and notes to use as que’s and reminders which is a good thing. I need to continue working on things but some of which may continue to get better overtime but it’s hard to say, especially at over a year and a half post surgery how it all will turn out
Her recommendation is that I cannot maintain a full time job, she actually doesn’t see how I’m able to work part time, if I’m able to continue part time then I should. It’s helping my depression to get out of the house and work towards something
What’s next? I have my cath-angiogram tomorrow with the new surgeon. They are trying to get me admitted tonight which is the plan, but the ICU is hard to get in, availability is tight. Then I’m leaning on my neurologist especially along with the new surgeon to help us with the results
I guess I got to get through tomorrow and get home to let all this sink in and see how I feel
It’s all a rather confusing time as I did return to work this past Monday. I worked 5 hours thst day and about three and a half yesterday I think
Took the rest of the week off.
They are so good though I met with HR as I had already emailed her what was going on with the surgeon and my cough I had. I talked with my supervisor and the Vice President of the company about things.
They are just happy to have me back at any capacity. And the VP said I was adapting to them and I have been easy to work with through all of this. I said you guys are the ones who have been great to work with for me.
I didn’t tell them about applying for SS and they haven’t asked me about it.
I also have thought about giving the cognitive report to HR and the VP. I am worried though they will take it as work is too much for me and that I am depressed even though to them I don’t appear to be. I don’t want others to worry about me so I hide a lot of what is going on.
My friends and co-workers do know about the angiogram tomorrow and they all hope for the best for that