Friday, August 30, 2013

Post Medrol Mess

I think I've been off of the steroids for 3 or 4 weeks now. Unfortunately it has left me a mess. I continued to have panic attacks. One was so bad it caused my hands to clench up and paralyze and my feet as well. I thought I was having a stroke and made my husband take me to the ER (that's my second ER visit since the last surgery.... The "easiest one"). They diagnosed it as just another panic attack, which I think was the best thing ever, bc it confirmed than any sensation I have good forward is just a panic attack and not any of the crazy things I had been fearing, like difficulty breathing, difficulty swallowing, tingling in my extremities, tingling on my tongue and lips etc. Since that day, I haven't had a full fledged panic attack, but started taking Ativan when I would feel an attack starting. I hated the Ativan and could feel myself becoming dependent on it. For a good portion of this, I was out of town. I decided I needed to stop the Ativan since it wasn't helping anyway and try to get my hands on my herbal and homeopathic remedies from my acupuncturist. Once I made the switch I felt a lot better. I was finally home yesterday and was able to have an acupuncture session. What a difference, even with 1 treatment. She gave me a regimen of herbs and minerals and other natural remedies to take. As I write I am on a plane heading back out of town, I left my Ativan at home by accident. A week ago, that alone would have caused a panic attack. Today, I am ok without it! As for the hip, still on 1 crutch (I think it's been about 10 weeks) and still with bursitis. I think I may need a cortisone injection to end this but am really scared of steroids. Not sure what to do...


Janet said...

Hi Susie, I am so sorry about how much pain and suffering you have endured over the past 7 years. I hope you start feeling better so you can have your life back.

I am so impressed by your knowledge of the insurance issues and of FAI and the problems it causes.

I am 47 yrs old and was diagnosed with FAI, Cam type in May 2012. I started having problems in 2008 with my right hip and had an x-ray done then. That x-ray showed the impingement, but no one picked up on it. I have had pain off and on since 2008 and have had numerous injections, medications, PT, CT scans, MRI, etc. to try and get a diagnosis, but no one could figure it out. The worst flare started back in Nov. 2012 and I was taken out of work (I'm a nurse) for 2 months. I was sent to so many specialists, it was ridiculous. They even sent me to OBGYN. I was in the Emergency room twice for the pain and even admitted one of those times. Nobody could tell me what was wrong.

No one picked up on the FAI problem until Nov. 2012. My Sports Medicine doctor pulled my x-ray from 2008 and in his note he wrote, "Pistol Grip deformity in frog leg position" and "she has evidence of FAI". NO ONE EVER TOLD ME THOSE RESULTS!!! Not even then, when he noted it in my chart in Nov. 2012.

By April, 2013, was having constant pain and swelling and could hardly walk. My primary doctor took me out of work because I was so bad off and he said it would take that long to find a diagnosis.

So, while I was out of work for 2 months (April 10- June 17) I was sent to at least 5 different specialists, including OBGYN! By the end of May 2013, I still had no answers and decided I would have to put the pieces of the puzzle together myself. I finally found the Nov 2012 office note that stated the FAI issue. I could not believe my diagnosis was sitting there since 2008 and no one noticed. This, of course, after being sent to at least 5 different specialists with all tests "normal". NO ONE EVER NOTICIED THE FAI, EVEN WITH MORE X-RAYS, MRI'S, CT SCANS, ETC. Finally, in May 2013, it was confirmed that I had FAI and we tried all the conservative treatments with NO success. My diagnostic hip injection was given on June 7, 2013 and it was a positive test. However, the shot only lasted about 3 weeks and then I was right back in the middle of hell again with pain. I was finally referred to a specialist at UNC Chapel Hill and they placed a request for surgery. I just found out last night that Tricare Prime Remote DENIED it, using the famous excuse "experimental and unproven". I am in so much pain, I can barely function. I am a nurse and it is affecting my ability to do the simplest things. I can barely put on my shoes and socks, much less do my job as a nurse. I am at my wits end and need some help. I do not want to end up on disability due to Tricare's inability to see that a simple arthroscopic procedure could fix my problem. It seems like they don't care how much pain you are in or if you have any quality of life.

I also have Rheumatoid Arthritis and take Enbrel injections every week. I am doing quite well on the shots, but the FAI is about to put me in an early grave.

Please let me know if you have heard of any people with Tricare have had any success on having this procedure approved. I am planning on fighting them with everything I have, but I need some help. Thank you for any information you could share.



lizzi6 said...

I just wanted to say, because of your blog I don't have to cry and shake my fist at the sky alone any more. And when I am contemplating flying off the Handle because my hip hasn't stopped hurting in two years, I can read your blog and commiserate with you in spirit. Thank you. Just, thank you.