Is there a potential fix for this (medical)?

Parent Cafe
1

Having just met with a pulmonologist (yesterday) regarding my getting out of breath with only slight (normal) exercise, his “best guess” is it’s due to radiation affecting something unintentional in my brain (due to a benign tumor). He based that on no lung issues (tested for volume, etc - only airway restriction came in “bad” and he said that was meaningless), no bad/off blood numbers for kidneys, thyroid or blood cell count, etc, no other cardiac symptoms (no high pulse, BP, related chest pains or similar), and the timing of the first time I recall this starting to be an issue being a year +/- post radiation - progressing since then.

In mid June there’s a chest x-ray and echocardiogram scheduled (just to rule those out) and a blood oxygen level test to see where that’s at. He says we’ll go from there once we have those results.

Being curious myself and using Samsung’s health app (which I KNOW won’t be nearly as reliable as real devices), BO definitely drops quickly - from 99 to 91 and 95 to 87 respectively just going from my basement to second floor doing laundry (a regular activity since we’re pretty partial to wearing clean clothes). The second (lower) time I had just come in from puttering around outside. The first was from sitting on my computer when the dryer bell rang.

Google doesn’t seem to show much at all with radiation as a cause. Assuming he’s correct, is there any hope for some sort of fix (or at least to stop progression) or should I very realistically be planning on moving to a rancher or condo somewhere where it’s flat in order to stretch things out as long as possible?

My brain is going to have a lot to get used to. For most of my life I’ve been rather active (hiking, raising ponies. etc). I’ve cut back gradually as I’ve needed to, but not even being able to do two flights of stairs comfortably is really pushing it. Can anything “fix” the brain in this scenario - or are there any others to consider?

I have words to say about aging… and I’m only 50. I expected more of this in my 70s or later, esp since we live a relatively healthy lifestyle. Samsung says I’m in the Top 10% for my age group with stepcount, but I guess I just need to keep things flat somehow (it’s not currently - thus - noticing the problem and it’s progression).

2

Is there any way you can get that chest x ray sooner? Like this week?

3

Do you have a history of asthma? It sounds like it could be trapped air. (I’m not a doctor, just an asthmatic.)

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“Being curious myself and using Samsung’s health app (which I KNOW won’t be nearly as reliable as real devices), BO definitely drops quickly - from 99 to 91 and 95 to 87 respectively…”

Here we go. Shaking my head. This is NOT a medical device and should not be used as such.

5

It might be worth pursuing the breathing thing a bit more. Did they test your breathing capacity after exertion? My kids and I have exercise-induced asthma, which can only be diagnosed properly if you test after exertion. It’s worth a check, since it’s easily treatable. Half my kid’s cross-country teams carried inhalers for this very reason.

6

Fortunately, my doctor wasn’t using it. :wink:

It did, however, give me some faith in his thoughts considering it confirmed what he expects to see. I don’t consider that a bad use, esp since I don’t exactly have access to his “toys.” YMMV

@bajamm I could. I have the order for it and was told I could get it done anywhere. Tomorrow after school I could stop by the Urgent Care place nearby. He just didn’t think it would show anything so I didn’t consider it a “do it now” thing.

@Wellspring That’s the interesting thing (to me) about it all. Roughly 30 years ago I was dismissed from the AF after having an asthma type attack on a run - then getting tested at a Navy hospital and their declaring that I have asthma. I’ve never in my life had any similar attack despite being quite active, including having completed Field Training and being in the Corps of Cadets, etc. Nothing before, nothing since. The Navy docs told me to expect progression as I aged, so I just assumed this was it and did nothing about this for a couple of years. Every doctor I’ve ever been to since has told me they don’t hear anything even remotely asthmatic, but I relied on the tests and assumed those were correct.

With this getting so much worse I finally decided it was worth getting it checked into to see what sort of meds might help. Recent testing (Nov '17) showed there is NO asthma. There probably never was. The test the Navy did was for exercised induced asthma - which I didn’t have. We all suspect they just assumed I had asthma in their final report. My whole life was considerably changed due to a mistake (sigh). I was incredibly naive back then to be so trusting, but one doesn’t get a do-over IRL.

But that left the question of what is causing this. I was told I’m just out of shape back in Nov (and with some doctors prior to Nov’s testing). That’s not it. I’m losing ability to do things I do pretty much every day, often several times per day. I’m not trying to suddenly do extra.

@InigoMontoya No, this doc doesn’t believe anything at all is wrong with the lungs, nor do I get asthmatic attacks at all (not the way I sometimes see them in students anyway). I just get out of breath, rest, and all is well in a few minutes - longer if I did more, but never super long. I just can’t go more than 4-5 flights of stairs before I must rest. Considering Creekland is weird and does stairs at hotels instead of elevators (most of the time), even that is a little annoying, but having it progress to home steps being an issue crosses a different line. Then there are the hills (small ones where we live, but noticeable now) and carrying things like water buckets, hay bales, garden plants, laundry, etc. I don’t plan to stop any of it (Do not go gentle into that good night), but… sooner or later life will need to change I imagine. I’d prefer a fix - or at least to stop it where it is.

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I would push to get the chest X-ray and echo pushed up. Why are they waiting a month+? What kind of benign brain tumor do you have?

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@Creekland my D has had some lung issues. She had doctors tell her she did not have exercise induced asthma when she does. She had a doctor double her acid reflux meds because he didn’t think her issues were lung issues, even though he knew she had documented lung issues. If he had done an x ray, on the machine that was across the hall from his office, he would have known he was wrong. A week later he had to diagnose a serious lung issue that should have been taken care of a week earlier with appropriate actions.

I have learned that doctors can be wrong. I also think that you are probably in good enough shape that this is not normal for you.

Get the chest x ray and echo as soon as possible.

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@HImom any advice?

10

About 8 years back or so I got horribly winded when my iron level was just a smidge low (barely out of range). Are you sure everything’s normal there?

11

My amateur armchair diagnostics thinks it sounds more like a heart valve issue. Nothing short of pneumonia would have that effect from lung function.

12

I really don’t want to scare you. If you don’t want to read any further just stop. This sounds very similar to my mom in the months leading up to her quintuple bypass. She was about our age at the time. (I think we’re the same age)

13

I was also thinking you should see a cardiologist. They’d get that echo immediately.

14

Insist on a stress echo. I had a regular echo that came back normal six weeks before I had a full cardiac arrest. Women present differently than men in the cardiac realm; my only signs were pain in the jaw, shortness of breath and extreme fatigue.

15

I’ve had some heart-related symptoms and my PCP ordered an EKG (performed a few minutes later at the clinic) and referral for an echocardiogram, which was done one week later. I too suggest finding out if you can see a cardiologist or someone who will take your symptoms more seriously.

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I’m a huge believer in second opinions. I avoided a major surgery last year by getting a second opinion. I gathered all my test results and saw someone affiliated with the state university teaching hospital. My insurance covered, fortunately.

17

I would get a cardio checkup ASAP. The only symptom my fit H had before his heart attack was shortness of breath on exertion. Do not assume this is connected to the tumor and resulting treatment. Hopefully it is nothing, but please take this seriously and do not wait until June for followup testing.

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@conmama The BT is a meningioma - benign - the only effects I have specifically from that are double vision to the left and down, neither of which bothers me any longer. It’s still there, but I’ve totally adjusted to it. The tumor is not removable due to being wrapped around a left branch of the carotid artery, so it was just killed with radiation.

The radiation itself was a new kind that divides up the charge putting it in through multiple areas of the head (9 or 11 - not sure how many for certain) in order to try to save other areas from damage (vs a straight shot killing everything in its path). It seemed to work well as I had very few side effects at the time - not even “guaranteed” ones like skin burning, hair loss, and a killed thyroid. However, afterward I get the fun of living with hearing my pulse, trigiminal nerve damage causing the bottom quarter of my face to constantly feel numb (fortunately doesn’t affect the facial nerve, so muscles still work) and my left ear to ache (nerve aching) fairly easily, esp with cold or windy weather, and now, seemingly this breathing issue. I guess the radiation didn’t cause the usual effects, but created its own for me.

I’m currently reminding myself it’s probably better dealing with those than letting the tumor continue to grow. Perspective.

My guess on not hurrying with the rest is because those aren’t believed to be the cause since this has been slowly progressing for 3 years now. It didn’t just suddenly happen. I just thought I “knew” the reason before and was in no hurry to address it until it got as bothersome as it is. It surprised me to be wrong. I was told those were the first available times.

Even with the BT, it took me 19 months to go see a doctor about the vision issues. I’ll admit to not particularly liking doctor visits and having a large preference for the body healing itself (not essential oils or similar things - just nature being nature). The one thing those docs told me and mentioned among themselves is “at least we know it’s not likely to be deadly…” I think deadly things progress more quickly. This one might end up being deadly eventually with slow progression, but in six weeks considering all other signs are normal?

Anyway, that’s my guess as to why the wait. It’s all considered “routine” and not critical.

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@SC Anteater Fe levels are well in the normal range and always have been.

For all the rest… if it is something cardiac, then I suppose I need to contemplate if treatments are worth it. I’m not fond of those sorts of things either (sigh). I’ll probably wait and cross that bridge if I have to, but all other cardiac types of signs are normal and it’s not like I’m a smoking, heavy drinking, constant fast food eating couch potato - or ever have been. Cardiac runs in my family, esp on my dad’s side, but his/their lifestyle was quite different than mine. Type II diabetes runs in my genetics (on both sides) too, but my lifestyle differences (or something) have kept that one away.

Who knows though… for whatever reason I drew the “lucky” straw for the BT so yeah, life is unpredictable. At least that was benign.

I will try to remember to take the xray order with me to school tomorrow to get that done afterward. That should clear up one option.

Youngest son’s college graduation is later this month though, so will at least have to work around that regardless of what the xray shows if it’s not normal.

20

I have two leaky heart valves. The degree of leakage isn’t considered serious at all by my cardiologist, but I’ve had SOB when exercising since I was a little kid. So I agree, that could be a possibility.

Another explanation might be that the radiation treatments might also have caused dysautonomia (dysfunction of the nervous system that regulates HR, BP, etc…). That kind of sounds like what your doctor was suggesting. I did some googling and found that radiation can cause it. Here’s a link. https://en.wikipedia.org/wiki/Dysautonomia

Exercise intolerance is one of the common symptoms. The Cleveland Clinic has Drs. that specialize in treating patients with dysautonomia.