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New to strokes - my husband had a stroke about a month ago
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Monalisacat posted:
I am so furious with my husband's doctor & office staff. We live in a small town with 1 hospital. It took a week to get into the dr's office after he had the stroke. When my husband had the stroke I wasn't sure what was the matter with him. He didn't talk much that week. I work long hours and we're in kind of a routine when I get home. He has been disabled w/several forms of arthritis for the past 5 years. So, his quietness was not out of the ordinary. Then when he started talking and telling me what he thought happened I was horrified that I couldn't see it! It took the doctors office another week to schedule an MRI for him. The dr called the day after the mri to say "yep, you had a stroke". I asked about rehabilitation and he said "it probably wouldn't do any good". I am still horrified. I've made an appointment with a different doctor in the meantime as well as an appointment with a neurologist. I'm just very upset. Any feedback would be appreciated.
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itmatsb responded:
I can't think of a reason why the doctor said that it probably wouldn't do any good. You should absolutely demand rehab meaning speech therapy and/or physical therapy to see if it would make a difference. And be aware that it takes a lot of time and effort outside of the appointments for changes to occur.

You've done the right thing by making appointments with a neurologist and another doctor. I would be very interested in what they have to say to you about your husband.

Wish you the best with it.

Sara
 
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Monalisacat replied to itmatsb's response:
Thanks for your reply Sara. Things have progressed. After seeing the neurologist he ordered another MRI. My husband also has a brain tumor. We've both been somewhat in shock. We go Monday to a neurosurgeon who will do a biopsy. We live in a small town with 1 hospital. We have to drive sometimes 60 -80 miles for an appointment like this one. I'm from a bigger city with a huge medical community. Will let you know what happens. Thanks for your kindness in replying to my post.
 
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itmatsb replied to Monalisacat's response:
I'm so sorry to hear about your husband's tumor, but it may not be malignant and can be taken care of more easily. And I understand what a problem it is for you to have to travel so far. But at least you now have the true story and can address it. That's the good news. Keep me posted if you can. I'll be sending you prayers if you believe in that. Otherwise think of it as good thoughts sent your way.
Sara
 
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Monalisacat replied to itmatsb's response:
Hi Sara,
Thank you so much for your reply. Getting ready for our trip. Will let you know what transpires.
 
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Monalisacat replied to Monalisacat's response:
They did an MRA (I think that's what it's called) basically looking at the carotid arteries. The neurosurgeon said if there was some blockage he would is probably "just" a stroke. If they're clear then it must be a tumor.So the arteries are clear. But I can't accept it. They want to do a follow up MRI at the hospital there. The surgeon doesn't like MRI's that are done in our city. Anyway, we'll see. Take care. Talk to you later.
 
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itmatsb replied to Monalisacat's response:
Too bad that they couldnt' have done the MRI at the same time as the MRA with your long trip. I get both done every 2 years to check the size of my brain aneurysm to see if I need surgery. And I get to see the neurosurgeon about an hour after the tests are done.

But it is good that they will further investigate it. Hate to say this, which may not be possible for you with the distances, but it is always good to get a second opinion.

My first neurosurgeon at a very good major research university said that I needed brain surgery ASAP. I got 3 other opinions and even traveled way out of state for one of them. All said NO. With the size that it was, the chances of it bursting were extremely low. The brain surgery for my particular problem has risks of lifetime paralysis, not being able to speak and even dying on the table. And there is a far safer alternative to go through the blood vessels in the groin instead of going directly through the head. So I learned.

Between my husband and myself, we have gotten out of 4 surgeries by getting second opinions. E.g. my husband was told to get a massive sinus surgery, but then the second ENT doctor gave him a nasal spray which completely took care of the problem. I was told that I needed to have 2 root canals re-done. I went to the dental school who said that the xrays weren't conclusive. He suggested that I come back in 6 months to have xrays redone and in the meantime if I got terrible pain, to come in for the surgery. 6 months later, he said that I never needed the surgery. That saved me thousands of dollars and all the painful appointments.

And it is good that your husband didn't have a stroke, because the chances of another stroke are very high. And the second one is far worse since the brain is already compensating. So count your blessings on that one.

But certainly wish you the best. And keep me posted.
 
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Monalisacat replied to itmatsb's response:
You all have certainly been through a lot! I wish we were back in Louisville Kentucky, my hometown, because they have a very large medical community. I'm going to do my best to get us back there. As for his stroke - if indeed it was a stroke- the doctors haven't said for certain that it was. However, he has all the classic symptoms - weakness on the left side of his body, left side of his face is droopy, inability to speak normally. Sometimes I can't tell if he's getting better or worse. But, he seems really okay in the morning but as the day progresses he goes down hill. Everything is more pronounced.Thanks so much for getting back with me. Wishing the two of you good health. I have to get ready for work. Another thing to add to our stress - my employer is shutting down at the end of the month. Might be a good opportunity to go back to Louiville. Have a good weekend!
 
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itmatsb replied to Monalisacat's response:
I will be interested in what is the final diagnosis for your husband. With a stroke, I know that my symptoms definately get worse as I get more tired with the day. But that could be the same with another diagnosis. Will losing your job mean losing your health insurance or is your husband on Medicare? I really wish you the best.
Sara
 
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Monalisacat replied to itmatsb's response:
Good Morning Sara,
I wonder, sometimes, if he's getting better or worse. Fortunately he has Medicare/Humana. I'm not loosing much when my job is done. Our insurance is unbelievable. It pays out, in a year only $500. So, it doesn't pay for much of anything except maybe a few minor doctors appointments. I'm still paying on surgery I had 5 years ago. I even had to get a loan to pay for a colonoscopy before they had to repair an umbilical hernia - oh, but gee, I still have not gotten my hernia repaired. I just go around all day poking it back in. Sorry, don't mean to sound the way I sound. Anyway, Pete has another MRI to see what is happening with what they think the tumor is. Thanks so much for asking. Have a good day!
 
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itmatsb replied to Monalisacat's response:
Sorry to hear about your lousy insurance. Are you close to Medicare since your husband is on it? Hope so.

I wish you the best with your husband's diagnosis.

Sara
 
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Monalisacat replied to itmatsb's response:
Good Morning Sara,
My husband was able to get Medicare since he is on disability. He just turned 60 this year. I'll be the same age this October. I'll just have to hang in there for now. I left work early yesterday and I'm glad I did. He could not stand up to walk. I kept trying to get him to lean on me but he couldn't do that. I called the EMT's and he was finally able to get up. He said it seemed as fast as it happened it went away so quickly. They offered to take him to the hospital. He didn't want to go. I'd talked to one of his drs and he's got an appointment today. Thanks again for your concern. Hope all is going well for you.
 
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itmatsb replied to Monalisacat's response:
I'm wondering if there are any updates on your husband's health. I just turned 60 this year and am terrified of losing my health insurance which is through my company. If I lose it, no other company will offer me any insurance. My medical bills total over $200,000 a year which will bankrupt us in no time or I will probably die because I won't be able to stand the pain. My migraines (caused by my stroke) used to be severe 24/7 until I got so many continuous treatments for them. The doctors say that I am likely to have the migraines for the rest of my life due to the cause. I've always paid for health insurance my whole life. With Obamacare the insurance companies cannot turn you down for pre-existing illnesses as of 2014. Plus a lot more people will be given health insurance who cannot now afford it.

Is there a more firm diagnosis for your husband? I hope that your husband is doing better.
 
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Monalisacat replied to itmatsb's response:
Good to hear from you. I kept trying to access this but couldn't. My gosh, you situation doesn't sound any better than ours. We had to file bankruptcy about 10 years ago after I went into a coma without med insurance. I am so sorry for what's going on with you. I also turned 60 on the 7th. Pete had turned 60 in January this year. Well, what everyone thought was a stroke turned out to be a tumor. It was 8 centimeters in June and grew to the size of a baseball by September. Went through all kinds of bs with Dr's here as well as the only hospital er. Pete's neurosurgeon in Enid, OK could only remove a portion of the tumor to reduce brain swelling. He was declining so rapidly. His entire left side is paralyzed. He's confined to a hospital bed. Hospice is working with us at home. His Dr has given him 3 to 6 months to live. It's so hard to take. I keep a "stiff up lip" all day making good meals for him, putting in DVDs he likes, and making him laugh. I stop from time to time to try to get him to talk about his fears and/or if there is anything he would want to do re last wishes. Then I cry myself to sleep. For 18 years he has been my best friend, my teacher, my lover and soul mate. We could still (before this) sit up all night and talk about everything. The down side of this is that he canceled our life insurance. I plan on moving back to Louisville as soon as possible. Again, I feel so bad for what you're going through. I wish to goodness this country had something in place to help us all. Take care, hope you'll keep in touch.
 
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itmatsb replied to Monalisacat's response:
I just got an email about your response. I am so terribly sorry to hear about your husband. And it all happened so quickly. It must make you wonder that had he gotten a diagnosis and help with it sooner, could he have had a longer life. It took a full 2 months to find out that he had a brain tumor.

This must be so hard on you to be trying so hard to cheer him as you are grieving. Don't discount the importance of what you are doing. It means everything to your husband. I cannot imagine what it must be to have your husband so suddenly be in such bad shape.

I just spent 2 years visiting my mother in hospice nearly every day. She passed away this past April. She was originally given 4 days to live. And she looked like it, nearly comatose, on oxygen, needing someone to feed her. Then she kept getting better. Then she kept having stroke after stroke or would seem to be dying. Each time I would heavily grieve thinking that it was the end, but then she would recover again. But that was my mother, not my husband. It nearly killed me to have to spend 3-4 hours almost every day along with my migraines, also needing at least 12 hours of sleep a night following my strokes, or the migraines get terrible--ER time. But I will never regret the time and effort. It was the most treasured time of my life with all the love between us.

Still, you are in such a difficult situation. I can't tell you how sorry I am for you. I will be praying for you and send you my love.
Sara


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