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Phillips Esq.
Phillips Esq., Attorney-at-Law
Category: Social Security
Satisfied Customers: 19125
Experience:  B.A.; M.B.A.; J.D.
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I am a 58 year old female who had total knee replacement in

Customer Question

I am a 58 year old white female who had total knee replacement in March of 2010. I had taken ac6-8 week leave to recover and planned on going back to my job of 22 years as a church office administrator. Our lives came unglued that week and we have been like hamsters running on their wheel for the almost 6 years since. I had surgery on March 6th, 2010 and on March 12th I went to rehab for my first PT apt. When the therapist saw my legs which had doubled in size and turned black (I didn't know that was unusual) she ran out and over to my surgeons office. He took one look at me and asked if my husband was with me and of course he was. The Dr told us to go straight to the ER where they were waiting for me. He thought I had acDVT or a bad infection in my legs. It was neither. I was later diagnosed with lymphadema, a sometimes treatable but not curable disease. This rehab wasn't even qualified to treat me so they had to transfer me to the one lymphadema specialist in our city. Every medical professional at every medical facility was shocked by my case. I went into therapy 3 times a week for 3 hours a day as I healed from the knee replacement surgery but not from the lymphadema , I could not work. I couldn't drive. Could barely walk due to the size and weight of my legs and was in constant pain that no pain meds they gave me worked. I noticed I was losing sensation in my feet as well as movement. I was then diagnosed with neuropathy and RSD, now known as CRPS. so I was sent off to yet another specialist, a pain management Dr. After trying several different pain medications, he suggested having a pain stimulator put into my back where I would have a remote control to try different settings and strengths to try to control the pain in my feet and legs. I began having what I now know as Myoclonic jerk seizures and started falling down. Sometimes with the jerks but not always. Even though I have lost over 100lbs, it felt like I had gained over 100lbs as walking became more and more difficult with the lymphadema more and more out of control from the falls. I had to begin wearing special shoes with the LPD kind of metal "Forest Gump" style of braces attached to my she's and going up to my knees. Because of the weight of my legs, my ankles were rolling outward to the ground and thr braces were to try abs stop that progression. I had to begin using a walker full time. A few months later I started having severe pain and numbness in my hands. Especially my right. My neurologist ran EMG's that was supposed to be a 30-60 minute test. 3 hours later and after changing almost every part on the machine that he could he finally said he couldn't determine if my hand was that severe or the machine was broken. He sent me back to the neurosurgeon who had done my back implants. We scheduled the surgery and on the day of surgery he came into my room before hand to show me what he would be doing in this simple procedure. He told my husband and my dad it would be about a half hour. 2 1/2 hours later he was finally finished and went to take to them. I had ruptured the pad in my hand from leaning on my Walker handles so hard because of the pain in my feet. He couldn't tell us if I'd ever regain the use of my hand. Thankfully I have regained most of it a few months ago I started having trouble holding my head up. It would s now to thr point that I can't hold it up at all and wear a neck brace. After a ton of tests, CT scans, spinal tap I was just diagnosed with myasthenia Gravis. In looking at my thymus gland they found a large mass on my thyroid so I was sent to see an endocrinologist who took several needle biopsies. I was told today that from the results they cannot tell me if its cancer so they sent it off to the west coast for further testing. Ok. Now that you've done all that reading I'll go on to say that my husband takes care of me and I wouldn't trade him for anyone or anything. He works a 10 hour day then comes home to take care of me and our home and our dogs. He goes to work at 6:00 am comes back home around 9:00 to help me dress and get compressions on my legs. Feeds the dogs and gets anything out or down for the things I may want to do. He comes home again in the afternoon if he can but gets off at 6:00 to come home to make dinner do laundry. Help me get a shower and ready for bed. He is beyond exhausted and I'm so afraid I'm going to lose him from a heart attack as he's stressed to the max. So I'm sorry this wasn't a shorter version leading up to this question but I wanted you to see what's happened in 5 years and I will get progressively worse. Someone told me there are funds out there available for people who need help doing Daily Basic Activities. We need help and can't afford a cleaning service or someone to come in and help me. Are there funds like this available and how do I go about getting in a program?
Submitted: 1 year ago.
Category: Social Security
Expert:  Phillips Esq. replied 1 year ago.

I am so sorry to read about your difficulties.

You would need to contact the Medicaid Office of your State for assistance. The Medicaid office can provide funds for personal care assistants. Your State's Medicaid office will have the information for you.

Best wishes,