My journey to better health

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Re: My journey to better health

Post by fiffur on Thu May 04, 2017 4:19 pm

I did, and this time I got someone who knew exactly what I wanted. Found several but have to find out if they STILL take my medical or not since the database isn't all that updated. Of course, my doctor isn't in on Friday so nothing can be done until Monday.

Just about an hour ago our representatives in DC voted to take away my health coverage......I pray the Senate takes its' time so I can at least get this done before they throw me under the bus. All I can afford to treat (barely) without medical coverage is my glaucoma. Nothing for the migraines, arthritis, allergies, or asthma. No surgery for the cataracts later on either if DC gets their way.
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Re: My journey to better health

Post by Sue Short on Fri May 05, 2017 9:49 am


Fif, I just the headlines in today's Times. While it has passed the House from what I saw in the Times it may not make it through the Senate. I agree it will affect the insurance exchanges in the future but right now you coverage should be fine.
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Re: My journey to better health

Post by bpaquet on Fri May 05, 2017 9:12 pm

I seriously doubt that the Senate will even take up the bill before October. They've already said it needs modification. If they do it right, it will languish and never make it to vote. Wink Fiff, get your treatment. Use your insurance for all it's worth!
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Re: My journey to better health

Post by Sue Short on Fri May 05, 2017 11:10 pm


I agree Becky. Right now this is the third rail for the Republican members of Congress. So go ahead get your treatment and use your insurance for all that's it's worth.
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Re: My journey to better health

Post by fiffur on Tue May 09, 2017 7:37 pm

We finally found an ENT surgeon who will take my coverage, 102 miles away in south Chicago. Insurance has a transportation service too, you arrange the ride AFTER you make the appointment, which I did. But they've told me they have no one available to take me there next Monday, and the one only other option I have to get there fell through.

Looks like I'm going to have to cancel and pray this doesn't rupture. Nothing like having the semblance of having insurance but you can't use it.......
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Re: My journey to better health

Post by bpaquet on Tue May 09, 2017 8:22 pm

Call social services and the surgeon's office. They might be able to suggest alternate transportation services. Also, check with local churches. I'd bet some kind hearted person would volunteer. Good luck!!
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Re: My journey to better health

Post by Sue Short on Tue May 09, 2017 9:38 pm


I never thought of social services but yes on the churches.
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Re: My journey to better health

Post by fiffur on Wed May 10, 2017 12:28 pm

They didn't have anyone either.....but I called the insurance company again this morning. Was told Yes I have a ride but they were waiting until Friday to call me with the details.....not thinking I was worried about having a ride at all. UUGGHH!!!
So the appointment is a go. Researched the doc, he's really good. But the hospital itself....not so good. I hope they don't make me stay overnight.
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Re: My journey to better health

Post by Sue Short on Wed May 10, 2017 6:26 pm


Keep us posted.
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Re: My journey to better health

Post by bpaquet on Wed May 10, 2017 8:25 pm

Definitely. Should be outpatient. They try not to keep anyone overnight now according to my ER nurse friend. It's better to recover at home for many reasons.
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Re: My journey to better health

Post by fiffur on Thu May 11, 2017 11:32 am

I know Medicaid won't want to pay for me to be there overnight.....but this surgery (if they do one-I think it needs it as it bulges more and more each day) is risky if they're not really careful and experienced in fixing this. If they leave it alone it could burst by itself. Potentially life threatening either way. I'm still scared and I know for a fact my mom is. She can't hide it very well.

A little more research into retropharyngeal tortuous medially deviated internal carotid, which is what I have, shows it's mostly a congenital thing, like my hip dysplaysia.
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Re: My journey to better health

Post by fiffur on Mon May 15, 2017 7:09 pm

It's not the carotid I'm seeing, although it is in the wrong place (confirmed by the surgeon). So I won't bleed out from it most likely if it's cut.

It's most likely a hemangioma of the tonsil according to the surgeon with 24 years experience. This looks just like it only mine is on the other side:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3843388/
Now onto a more detailed CT/Angio and yet another appt. to go over the newest scan. This thing is fast growing....several options surgical and non surgical to deal with it.
And I have a ride for both of those appts. already, thank heavens.
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Re: My journey to better health

Post by Sue Short on Mon May 15, 2017 9:28 pm

Sad
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Re: My journey to better health

Post by fiffur on Mon May 15, 2017 11:34 pm

It could've been much worse....at least this fast growing lump is benign and has well defined edges so removing it shouldn't bee too hard. It's just it's location that's bad; if left alone it could possibly grow to eventually block my airway. A hemangioma is just a knot of loads and loads of tiny blood vessels, mostly seen in small babies and children. Picture a tangled ball of yarn and that's kinda what this is like, only with capillaries. Pics online show some really horrific cases of it so compared to that mine is minor. It's a very good thing I already have a confirmed ride to Chicago for these two upcoming appts. already. The doc is really good too, I like him. The newer scan next week will show where this knot is attached for it's blood supply, hopefully not the carotid though it could probably be tied off before being removed. A very high cure rate if you want to call it that for this sort of thing. All in all, todays' news was a bit of a relief. Now to get it over with before congress decides to move faster than it's usual glacial pace passing legislation.....
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Re: My journey to better health

Post by fiffur on Tue May 16, 2017 1:02 pm

Oh, forgot to mention: I saw a tiny house on the highway coming home yesterday! Going the opposite direction as me I only got a glimpse but it looked a lot like this one labeled the Tiny Tea House: http://www.survivopedia.com/guide-to-tiny-houses/
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Re: My journey to better health

Post by Sue Short on Tue May 16, 2017 6:40 pm


I would love one of those.
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Re: My journey to better health

Post by bpaquet on Tue May 16, 2017 9:38 pm

I'm glad to read the relatively good news and happy that you have a good doc. That makes a TON of difference.

The tiny house is adorable! I saw one coming towards my town the other day. I need to go around this weekend and try to find it.
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Re: My journey to better health

Post by fiffur on Wed May 17, 2017 12:08 am

Oooo, I'd love to see a pic of it or one very much like it. This was the first tiny house I'd ever seen in person! I wondered where it was going....
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Re: My journey to better health

Post by fiffur on Thu Jun 01, 2017 3:55 pm

Saw the surgeon, who is referring me to yet another specialist surgeon. The tumor is too large to excise completely, so he's recommending what is a reverse stent (embolization), at least a dozen of them. That will starve this lump of most of it's blood flow and make it shrink.
More on that here: http://emedicine.medscape.com/article/1080571-treatment

Since this surgeon is in high demand it may take a while to get in for the consult, I hope not too long. I want it dealt with before Congress takes away my medical coverage.
I will be having a surgery though less invasive, but this one goes through a leg vein all the way up to my throat, and leave these little plugs in the veins feeding this thing.
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Re: My journey to better health

Post by bpaquet on Thu Jun 01, 2017 9:22 pm

Shocked Cool that it's not going to be as invasive. It's hard to believe they can go into your leg and get to your mouth, isn't it? Good luck with the whole thing! Sounds like you have a great team of doctors.
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Re: My journey to better health

Post by fiffur on Mon Jun 05, 2017 11:07 pm

Tell me about it.....not looking forward to it. I havea feeling it will be challenging for them because of my small, tricky, non cooperative veins, bet my arteries are the same way.

Just read some of these hemangiomas can actually be malignant. Hope mine isn't. Either way itcould be considered by insurance companies as a form of cancer so guess what? I'd be even more non-insurable if they recind Obamacare on me.

Just waiting for the doc to call to schedule the MRI, then onto reviewing them and planning our attack on this thing! Emailed them that I just want to get this over with.

Meanwhile, mom still has a horrible headache that her imitrex isn't working on. Her followup MRI is next week.
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Re: My journey to better health

Post by bpaquet on Tue Jun 06, 2017 8:13 pm

Waiting is the worst part. I hate it when I know some medical procedure is coming up and I have to wait and make up all the terrible things that can go wrong.

The weather is doing a number on all my friends who get migraines. My one friend has taken to swallowing her Imitrex with Coke so the caffeine boosts it. I don't know if that's recommended or not, but she says it works a bit better that way.
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Re: My journey to better health

Post by fiffur on Sun Jun 11, 2017 6:59 am

I've been having a lot of migraines lately too but I can't have caffeine even for that. Caffeine does help ease migraines though.
Mom's MRI tomorrow....we're thinking she might have a hemangioma in her brain. Doc emailed that those can be hereditary.
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Re: My journey to better health

Post by bpaquet on Sun Jun 11, 2017 9:46 am

Ugh. Is there a treatment for it, or is it just something you acknowledge and leave alone?
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Re: My journey to better health

Post by fiffur on Mon Jun 12, 2017 1:13 pm

Oh yeah, the same as what they're proposing for mine only they'd have to snake that thing further up the veins to get to it.

I really hope and pray congress doesn't vote on taking away my medical coverage by the end of the month. I've been reading and hearing they are planning on doing that before July 4th celebrations and their umpteenth vacation. They do that and all this will be for nothing as the surgery won't be done yet.
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