Quantcast

AVM Survivors Network

Doctor's Appointments Yesterday

So yesterday was a 10 hour day doing two doctor’s appts. We got hooked in with some amazing doctors at the University of Michigan and it was a day for post surgical follow up. It’s been 6 months since they went in and surgically cleaned out the infection in my throat.

For those of you who don’t remember or never read some of my past stuff (and that’s probably a good use of your time LOL) in January of 2018, I had an embolization in my left neck and into my head. They accomplished the main thing - reduced the risk of a brain bleed to “barely more” than the normal person walking down the street. However left behind a dump truck full of very ugly side effects. One of those side effects is that my left vocal cord, along with basically the left half of the whole upper airway - is in some way paralyzed, numb, or something similar. Yeah, fun. One of the side effects to the side effect is that paralysis causes things that would normally go right down to get “stuck” and not only is it a choking risk, it’s also an infection risk.

So, two appointments and they both went well. So I should be feeling good, right? Right. But a couple of things that are dragging me down… Good means that the infection isn’t back right now but we’ll have to keep an eye out for it. Good means not that I’ll get my old voice back, but other than periods of over use - think Thanksgiving with a bunch of loud family members - other than times like that, what I’ve got is what I’m probably going to get. The likelihood of it changing significantly, of it getting much better, unless you are looking at a 5 to 10 year time frame, are very slim. (cue the music, we’ve definitely heard that song before.)

So this is good, TJ, what’s up? Well, it just kind of got me to wrestling with the “new me” syndrome. As in, this is the new me. This is what I have to live with. And then I start feeling lousy because my “new me” is way better than so many people have it. So what right do I have to not be “okay” with the path God has me walking down? It could be a lot worse.

And there is my dilemma, how do I feel good about the “good news” even when the “good news” is “only” that the news didn’t get worse? How do I do that when that’s not what I want. If I could, occupationally (aka not personally life, just work life say in one sentence, what do you want to be able to do that you can’t right now because of just this one part of your multitude of symptoms, it’s very simple for me, I want to be able to spend all day working with, teaching, directing, guiding teenagers in the high school setting.

And realistically that’s probably a 5 to 10 year goal AT BEST. And age wise, that would put me within a stone’s throw of retirement age. Yeah, don’t think that’s going to happen. So a “status quo” appointment with no additional problems is good news because it hasn’t gotten worse (and that is a realistic possibility) and yet it’s bad news because it pushes one of my “old” pre-January 30, 2018 dreams way further down the creek and almost out of site.

No wonder my head hurts today…

TJ

P.S. It goes without saying, but I’m going to anyway. Personally, one of the things that I so enjoy about this group is that it’s not just a dumping ground for our personally issues but it’s a chance for all of us to reach out and share and help and encourage each other. I’m not begging for any love at this point, I’m really doing all right. I’m saying it more for others - especially if you see something that kind of resonates with you, drop in, say Hi and share a few thoughts. We’d all be better off if all of us (including myself) did more often.

Public Service Announcement is complete, TJ steps down from the podium and hands the mic back to our faithful and rock solid good people who run this “place.” Rumor has it that they all secretly wear shirts with a certain “S” logo on them.

1 Like

TJ… I completely understand as my last neurologist appointment said I’m doing good I said what about doing better and she goes well you never going to get better, I’m just glad it didn’t get worse… so I can empathize with you. Just hang in there; day by day step by step and try to accept our current situations but always strive for a little bit better and hope for the best!

TJ,
Gosh can I relate to your post. I’m coming up on my four year hemorrhagic stroke survival anniversary in a couple weeks and it’s a bittersweet time of the year for me. I’m grateful to be alive and able to walk and talk and drive but life is so much different now living with head pain every second of my life and having a stamina of an 80-year-old. Everyone tells me it could’ve been so much worse and I know that but we just want our lives back to where they were and coming to terms and trying to accept that it may not happen is a tough pill to swallow. Thank you for sharing everything that you do because sometimes you take the words right out of my mouth. The new me is much different now and nobody understands the struggle that we fight every day trying to become the old us.

1 Like

Ha! Yup. Had my “normal” annual check up with my regular doc (they call them primary care physicians around these parts) and we had plenty to talk about. As he was wrapping up, he says to me, "Tom, if it weren’t for this AVM thing and all the damage it’s done and is still doing, I’d be telling you that you are doing great. But, sorry, I can’t say that. You’re really pretty much a wreck, but you already knew that. (I think I used the hospital e-patient system more than pretty much anyone. Out of the 18 docs that I have seen only one of them said (and I paraphrase): Don’t waste your time if I can’t read it on my phone in less than 5 minutes, I won’t read it.

Yeah, I feel so special…

Not!

TJ

Ouch, and I say that because it’s all too real.
Often the medicos treat the symptom and a big tick to them for doing so. But the flow on effects, the side effects, can be huge. That line of ‘You’re fixed’ sounds great, but the reality of the ‘fix’ can have a massive impact and whilst it seems the medicos are all patting themselves on the back for their success, often the reality of what’s left of life as we knew it can be devastating. This new reality has taken (and in some cases is still taking) some time to accept and adjust to and there goes that bloody awful word again, acceptance. We all had life plans and goals, then along came ‘this’. Now what??? Letting go of those plans and goals can be a big battle and when you learn how, please tell me. Simply being told ‘Well, things could be worse…’ doesn’t help.

Now TJ, stop dropping that mic :smile: Your input here is highly valued because it’s very real and very relatable. It’s that reinforceable ‘Phew, so I’m not the only one’ because all of this can be so very isolating. What you speak of is real and others (me) need to hear it, so, stop dropping that damn mic :smile: You’ll end up damaging it :smile:

Merl from the Moderator Support Team

2 Likes

Jeannine,

Thank you for your kind words. A couple of thoughts in response…

You mentioned the “stamina of an 80 year old.” My Dad passed away 2 weeks before his 81st birthday from complications of radiation from his 3rd bout of cancer (1994) and his chemo with this bout of cancer (round #5). He fought this for 17 months before God said, “Come home my son.” And he went to spend the rest of time and eternity with the God that he had spent over 55 years preaching/living and teaching about the life and work of Jesus.

During those 17 months (11 1/2 of which were while he was 80) that he fought pancreatic cancer, he finished authoring three books. As in totally finished, printed and on it’s way to bookstores. So when you say the stamina of an 80 year old, remember this preacher guy who “retired” and spent 15 years teaching and writing at the seminary, out lasting his expectations on how long he would work his retirement job by oh maybe 12 years? And two weeks before he passed away, he was still at the seminary in his office. Be careful what you wish for… :slight_smile:

One of the now ministers who had my dad as a seminary professor was sharing stories of my Dad and she gave him his own hashtag #failedretirement

I couldn’t tell you the number of times “my Randy” and I have had discussions about exactly that issue. How do we come to grips with our new reality and figure out what we need “to be” and what things we don’t need. You spend time wrestling with that and you learn about what really matters to you and what matters to your family.

So much of the stuff of life gets peeled back when you have to look at it through the “can” or “can’t” lense. You evaluate things differently and you act on things from a changed perspective.

And that’s hard. It’s probably one of the hardest things I’ve ever had to do. And when you have people who will walk that road with you, they are worth their weight in gold…

TJ

Merl,

If I break the mic, I’ll get you a new one.

Thanks for the smile.

TJ

1 Like