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New here and very confused

VerleenVVerleen Posts: 2
edited 06/11/2012 - 8:44 AM in New Member Introductions
I am new here and find it impossible to navigate this forum. I can't even change my password.

I'm Verleen from upstate NY. I have post polio syndrome that affects my entire body, but the most affected is my back with muscle weakness and pain. In March, I had triple by-pass surgery that has given me one serious complication after another. My back and left lung are very problematic for me. Both are hindering my recovery. The doctors, both thoracic and pulmonary, want me to go into rehab. Hoever, exercises require that I have a strong functioning back. They do not have a back exercise nor do they seem able to incorporate one into the "canned" program. Their response is to write me off as refusing to to the rehab. I never refused anything. I just wanted them to modify it so that my back COULD do it. I use a power wheelchair and yet, they still wanted me to walk a 30 minute stretch. My back collapses after a quick trip to go potty.

After the surgery, my left lung got pleural effusion. After draining it, one-third of the lung still did not fill with air. They said my diagphram is too weak to draw up the air. They said there is nothing they can do. Isn't there some exercises to strengthen the diaphram? The Rehab hospital in Schenectady didn't have any to offer me.

The only services I can find are the "canned" ones for the common lucrative procedures that are done.

To breathe and sleep, I have to sleep, sitting up in a recliner. I have sleep apnea which they can't assess and treat until I'm healed of all the surgical problems. So I'm not sleeping at night because I stop breathing and afraid the time will come when I won't wake up. So they are treating the anxiety with ativan. That way, if I should stop breathing, I won't mind as much.

I have chest pain and the incision is slowly healing. I'm taking longer than most people to heal, says the surgeon. He has refused to prescribe pain killers and basically has signed off all my care even though I'm still not healed from the surgery itself. Thank god, my primary is willing to prescribe the pain meds that I can take every 4 hours. Because of fear of getting more down the road, I have been very conservative and taking just one a day in the evening so I can fall asleep without pain. My primary just gave me a lecture about not holding back on the pain meds. She says when I have chest pain, my body takes little, shallow breaths and my lungs will never fill up. The result is I have been making my breathing and left lung worse by holding off on the pain meds. I just realized I went on and on. I'm sorry. I guess I needed to vent my frustrations.

Has anyone had back weakness/pain due to polio? What did you do for it? Likewise with the diaphram weakness? I would appreciate any help. thank you, Verleen


  • Hi and welcome.

    I don't have any experience similar to yours but are you going to Physical Therapy or are you not well enough to do that yet? If you are at PT, I guess the question is where is teh back pain which would help the PT person advise on exercises. You mentioned Thoracic area which is the least common back problem area but you may want to post in that section of the boards.

    For lower back, there are back extensor (?sp) muscle exercise the PT can show you but they need to show you b/c they know your specific condition. I have lower back herniation and the exercises I do are to keep my core muscles (abdomin/back) strong so that they can properly support my lower spine.

    Talking to PT might be a starting poing.
  • I am so sorry to hear of all of the issues that you are dealing with and it sems that nobody wants to help you.

    I do have some experience with collapsed lungs and lung issues from when my husband spent 3 months in ICU.

    I am wondering if you have one of those little things that you blow in with the balls in the bottom? I am not sure what they are called but the goal is to raise the balls up with your breath.

    I am no doctor but it seems to me that those breathing excersizes would be good for your lungs.

    Has anyone suggested a balance ball in order to strengthen your core? Of course you should talk to your doc first but it has been helpful back excersize for those of us with limited mobility.

    I hope that this has been helpful to you and I wish you much luck. Remember that I am giving you suggestions from personal experience and have no medical training.

    Please keep us posted.

    BTW- Click on my account at the top of this page. Then click on edit in the top right of that page in order to change settings.
  • FYI..that thing she is talking about is an incentive spirometer. It helps inflate the lungs. In the US most hospitals have you using it after surgery and you can bring it home with you.
  • The spirometer is the best thing for your lungs. You start slow and before you know it you will improve. I had one after my surgery. They usually use it after any surgery with anesthesia because it helps to get the meds out of your system as well. If you don't have one ask your doctor.

    Rehab is probably a good idea - in the right place. They can treat all of the different issues that you have. And a decent therapist will modify your program to fit your needs. Something to think about is that if everyone is telling you that you need to do this then you probably do. And if they think you can do the exercises you probably can. Recoverying from surgery and treating problems is not easy work but if you work hard you will get better.
  • Post-Polio Syndrome is a complicated disease that attacks some survivors of paralytic polio. The need for respiratory integrity is crucial -- you need a specialist's care far beyond any general physical therapy or breathing suggestions that could be provided here.

    Given your probable age, the severity of your symtoms, and your recent heart surgery, I urge you to ask your primary care physician to seek out and find both a pulmonologist and a cardiologist with definite experience with post-polio syndrome. Any other suggestion by me would be a disservice to you -- you need the best specialized care possible.

    My heart goes out to you, your story makes my heart hurt. I worked as a personal trainer specializing in post-rehab exercise therapy, and I was blessed to have worked with, and hopefully helped, clients with some serious conditions. I wish there was something that I, having both that and a nursing background, could offer to make your burden easier. I can't offer that -- but I believe that "someone" is out there.

    God bless you.
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. you are the first person i have met with post polio syndrome. i have had it for several years now but it is so controversial and new that i have not gotten adequate treatment for it either.. anyway, i wish you the best of luck in getting treatment. hanging out here and meeting new friends will help lots as well.. good luck to you! Jenny :)
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