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RE: dizziness

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • mtlieb
    replied
    Re: RE: dizziness

    Pam,

    Thanks for the informative post. I hope your recovery continues to go well. You know you have a lot of people behind you here

    Take care,

    Jim

    Leave a comment:


  • Lisa Salberg
    replied
    Re: RE: dizziness

    October 15, 2003 I looked at my clock ...it was 3pm...my heart jumped as I thought Pam must be out of surgury... I hope she is OK!

    I did call to check and make sure you were OK. I was told simply everything is fine. I asked someone to get a message to your family that I had called and if you or they needed anything to let me know.

    I was thrilled to see a posting a short while later that your son Tim had done, saying you were doing well.

    I hope you continue on the path to uneventful recovery...but if you hit a snag...do not worry it happens and you have a great team to get you over any bumps in the road.

    Be well....get some rest and know we are thinking of you!


    Lisa

    Leave a comment:


  • shirleymahoney
    replied
    Re: RE: dizziness

    Pam
    Thanks for the great story, i really like reading sucess stories, remember don't push yourself, give your body time to heal
    Take Care
    Shirley

    Leave a comment:


  • Reenie
    replied
    Re: RE: dizziness

    Pam, thanks for telling your story. I'm glad you're feeling so much better.

    Reenie

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  • Linda
    replied
    Re: RE: dizziness

    Pam, Rest well, I'm sure you're exhausted after that post. Thanks for sharing so much info. You've answered a lot of questions. Hoping you continue to improve daily, Linda

    Leave a comment:


  • Pam Alexson
    replied
    Re: RE: dizziness

    Hi everyone , I am back and I will try to have input as much as I can . I have promised my blessed doctors at NEMC especially the most splendor iforous of all Dr. Marty Maron that I would let you all know as much as I can between rest periods how I am doing and all the changes and improvements to date ( much more to come I am sure). Iwill reply to this one you are all wonderfull and I would not have had the courage or knowledge to have made such a serious decision to have the surgery had you not been here for me .

    So Jim , and all I don't know about windows of enlightenment but I can speak to my own experience regarding numbness. Over the past several years my feet , my hands and in general my bones have been waging a battle . I was diagnosed last year with severe degenerative joint disease resulting after bouts of severe sciatica. What was interesting was that I was also experiencing an increase in severe carpal tunnel syndrome which I have had for 17+ years but now it was worse. I was also having a new problem: painfull ,painfull ,burning, numb often throbbing, hands and feet and yes my legs also were being effected. I would notice that it was all worse when I was up on my feet more and better after a night of rest. We could attribute this to many reasons including neuropathy from diabetes. Another point : my blood sugars were within normal with diet and oral antidiabetic agents.

    My vision was also inconsistent with more floaters and glares and streaks wavery blurs and the vision checked was OK. Boy the pain maxed out post surgery and for awhile as I gained 18 pounds within 2 days post op from fluid I didn't think it could get worse. As the wait came down and the fluid disipated the pain aches and all went away even the numbness. I was Alittle reluctant to tell Dr. Maron for fear it was tempory but it has been 1 week and 3 days later and I have minimal numbness in 3 fingers on each hand like I did years ago pre symptoms of Advanced HCM; remember I was only diagnosed less than 3 years ago but had had increasing symptoms for about the last 10 years. The pain and burning is also gone , Dr. Maron expects only more good things to come . My vision seems more stable , the severe reddness that everyone would always assume was me being hot and looking very flushed is gone my kids and family think I look different , My voice is higher my brain is inventing devises left and right I started writing my story and planning to contact the local reporters I knew and worked with before my departure from public life .. I want everyone to know what can be done to help us and how wonderfull it is to have a new center on the east coast specifically for HCM victims that offers hope and promise to those of us with the disease and support for their loved ones. My family and loved ones were constantly appraised of my status and actively sought out by him so that they could be kept up to speed and given the realities of my progress.


    Dr. Maron deserves a humanitarian award for not faltering once. He was ever vigilant in boosting my spirits when I felt crappy and gave me true promises of what to expect . I couldn't have felt more watched over and confident in him. Dr. Rastegar and I seemed to always be on the same page and he also included my feelings and opinion in all that he could where my care and recovery were concerned. And Doug came to visit and we met he inspirers my recovery . I will be in touch soon Doug , thankyou. Lisa called Dr. Maron to check on me , thankyou Lisa .There are so many more to mention and I will try to continue after I rest abit .

    So for now beddy bye, Pam

    Leave a comment:


  • Reenie
    replied
    Re: RE: dizziness

    Originally posted by mtlieb
    Isn't Reenie the awesomest? Ya just gotta love her
    "Awesomest?" Is that even a word? LOL


    Reenie

    Leave a comment:


  • mtlieb
    replied
    Re: RE: dizziness

    Isn't Reenie the awesomest? Ya just gotta love her

    Leave a comment:


  • DLCC2
    replied
    Re: RE: dizziness

    Reenie, I'll second that. Thanks for being honest. Your awesome.

    Leave a comment:


  • mtlieb
    replied
    Re: RE: dizziness

    Reenie,

    That's cool... i have a whole lot of respect for someone who can say 'i just don't know' like you did, rather than pretending they do know, and just blathering on about anything that pops into their head. Maybe someone will come along and open the windows of enlightenment for us

    Jim

    Leave a comment:


  • Reenie
    replied
    Re: RE: dizziness

    Originally posted by mtlieb
    Very true Reenie, but doesn't an HCM heart have to beat faster because of diminished capacity? And by regulating our heartrate with beta blockers, not only do we still have the diminished capacity, but our hearts are beating slower as well, therefore we get symptoms that you'd normally see with poor circulation? Not arguing, just asking
    Jim, I am sort of hesitating to answer this. I'm gonna give my opinion, but I might be corrected later..... Here goes...

    I don't think that an HCM heart necessarily beats faster. And the diminished capacity of an HCM heart I'm not too sure about either. I was under the impression that lots of the time beta blockers are prescribed in HCM'ers for softening the heart beat so that it can relax, rest, and fill more fullly with blood, not because you need to decrease the heart rate. That just happens to be something that comes along with beta blockers. Sort of like taking an aspirin for pain, yet having it work as an anti-inflammatory too. That said, you may be right that the slowed beating of your heart due to the slow down created by the beta blockers attributing to the "poor circulation" feeling in your feet and legs. I just don't know.

    Reenie

    Leave a comment:


  • shirleymahoney
    replied
    Re: RE: dizziness

    I think it's do to the valves and how much regurgitation one has, just a thought, because sometimes i can even be walking, for example in the grocery store, and the more i walk the more numb my toes become, i look down at them and there's no blood in every other toe and the bottom of my feet are very blotchy, it will stay that way at least 10 to 15 minutes after i sit down and prop my feet, to me that would indicate my body not getting the blood it needs, just a thought, may be wrong
    have a great night
    Shirley

    Leave a comment:


  • mtlieb
    replied
    Re: RE: dizziness

    Very true Reenie, but doesn't an HCM heart have to beat faster because of diminished capacity? And by regulating our heartrate with beta blockers, not only do we still have the diminished capacity, but our hearts are beating slower as well, therefore we get symptoms that you'd normally see with poor circulation? Not arguing, just asking

    Leave a comment:


  • Reenie
    replied
    Re: RE: dizziness

    Yeah, but Jim, remember - your heart is actually more on the "super capacity" side than diminished capacity side. It actually beats too hard. Hmm, another one to ask the big guys, huh?

    Reenie

    Leave a comment:


  • mtlieb
    replied
    Re: RE: dizziness

    I've always had a problem with numbness and tingling... especially in my legs. The most bothersome situation is when both my legs fall asleep at the same time, sometimes while i'm standing on them. When that happens, i have about ten seconds to find a seat or i find myself on the floor. LOL. I get told over and over that it has nothing to do with HCM, but i really have to believe that the diminished capacity of the heart has something to do with it.

    Leave a comment:

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