Wednesday, February 3, 2010

UPdate

Sorry it's been so long since I've written. I've had so many bad days it's been tough to stay connected.

I had my evaluation for PT a couple weeks ago, and was excited to start my rehabilitation. The therapist was awesome. She was so positive and totally seemed to get what was going on with me. She told me how my neck had become straight instead of curved like it was supposed to be.

She started by getting my full history and enlightened me to all the muscle groups that were being affected by my herniated discs at C4,5. I wasn't aware that there was so much involvement. She did some nerve and muscle stretches with me and evaluated my range of motion.

I left feeling optimistic and proactive about my PCS. I thought that I might get some relief in a few weeks.

I returned the next week to have my first official PT appointment. It was really light. She started with some heat on my neck and then took me through about 5 different stretches. There was some cage stretching, resistance bands, and an arm bike. After those stretches she applied some more heat and then stretched my nerves again.

I was ok when I left, but the next 3 days were rough. I could barely move myself. I felt like I had been hit by a truck. My symptoms were all exaggerated and on top of that, my husband was out of town. I was alone with the kids, and having a tough time with it.

I canceled the next appointment I was supposed to have there, because I was feeling too beat up to continue. I decided I would reschedule for the next week.

That appointment was supposed to be yesterday. I called the PA I had seen at my neurologist's office and checked in with her about the therapy I was receiving. She said that it wasn't the right type of therapy, and that I wasn't getting the craniosacral therapy (CST) she had recommended. She suggested I stop going to this PT place and find a place that actually does the CST.

I called the place she had initially recommended and spoke with one of the therapists. She and 3 others are certified in CST and that's all they do there. I also spoke with the office manager and they take my insurance. Good, good, good. I start my evaluation there this coming Monday. (fingers crossed)

I had to break up with the other PT place, and it wasn't fun. I really liked the therapist that was working with me. She was really optimistic and positive. I hope I'll have a similar experience at the new place.


I also saw a doctor that works for social security, disability. I saw that doctor this past Monday. To my surprise, the visit went really well. He gave me a neuro exam and a physical exam, and said he was making his recommendation for me to receive ssd. I'm encouraged by that, but I know that anything can happen. I'm trying to prepare myself to appeal if I get rejected. I should know either way in about 4-5 weeks.

Other than that, things have been pretty uneventful. I've been so tired that I haven't done much. My hubby worked at the base all week 2 weeks ago, and was gone all last week for a training week for the air force. Two weeks of waking up early with the kids took its toll on me.

This week is back to normal, trying to get back into a routine. Please pray for me and my family. We are all getting frustrated, exasperated, and overwhelmed. It's tough for them to be taking care of everything, and it's hard for me to sit by and watch.

I know that God has given me this opportunity for many reasons. I want to stay positive and trust that He won't give me and my family more than we can handle. It's pretty tough sometimes.

Thanks for listening and praying.

6 comments:

  1. Dear Kate,
    I just discovered your blog and am encouraged by your faith in your struggle with pcs. I had a concussion 3 years ago which resulted in 2 months of pcs--severe fatigue and a constant "swimming" feeling in my head. It was the hardest trial of my life, especially not knowing if I would ever be better. I recovered fully, by God's grace. This past December, however, I hit my head in the same spot where I had my concussion, simply by standing up too fast on a plane and bumping into the overhead. I thought little of it, but my pcs symptoms came back. I am trying to find out from a doctor if one can re-activate pcs but have had no luck yet. Anyway, while this hit was far from the severity of the concussion a few years ago, the pcs has been quite a bit worse--all the same symptoms, but this time headaches, and so far it has gone on for about 3 months--longer than the first time, with no end in sight. It is complicated by the fact that I am single, don't own a car, and have relied on my feet to get me around. Now, walking any distance beyond a few short yards is simply impossible. And, as I take it is the case with you, my social life has gone down to about 10%. All of this is to say that I found comfort in reading about your struggles and your faith. And your spirited approach to life in all of this certainly brings glory to God who loves us. Thanks for sharing.
    Abby (Middlebury, VT)

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  2. Hi Kate,

    I've been suffering from PCS too and I've just come across this site which I thought would be worth investigating. I'm going for an evaluation this afternoon so can let you know the results.

    http://www.erinelster.com/CaseStudies.aspx?ConditionID=2

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  3. Hi Kate,

    I'm just checking in to see how you're doing. Do you have any updates and/or prayer requests?

    Don

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  4. KATE

    THANKS YOU!!!!!! I just found your blog, I am also from WNY. I feel on the edge of a shovel last laborday weekend. Landed full force on it after being in mid air.

    It took a bit of time to find out why I was still dizzy, and having severe headaches...my primary dr. was wonderful about things but sent me to Dent. Honestly I felt like a peice of meat there but that is neither here or there. I had the chance to talk to one other person who knew what I was going through because he had the same issue for over a year. Thank God I talked to him because I was starting to think I was insane. Everyone (including in my eyes the Dr's) seemed to look at me as though I was full of it.

    I tried to go back to work after 6 mos, made it about 3 weeks and when I was so dizzy driving that the oncoming traffic was heading straight for me and a few evenings Idid not remember the ride home I called my Dr and he pulled me back out of work. Has not done much for me though because it screwed up my Disabilty insurance through work so its been 4 months of fighting them.

    Just made me feel better to know I am not nuts after reading your blog and the fact we are in the same area was a little freaky but maybe you can suggest dr's in the area I am open to almost anything at this point.
    Thanks for listening.....
    Chip

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  5. Abigail... I am sorry I've been out of touch. If I can help people with the information I have, I want to continue.

    I'm sorry your PCS is back. The symptoms can be so daunting and it seems impossible to deal with.


    Huxstead..... Did you go through the evaluation? What did you learn?


    Don.... thanks for checking in. I'm sorry I've been away. I'll post an update after these responses.


    PCSChip....I'm sorry you are hurting. Who are you seeing at DENT? I have Dr. Kang working on my case and I see his PA's now, since I've progressed.

    Since you are in WNY, you should definitely set up an appointment with Dr. Leddy at UB's concussion clinic. It's better to start treatment closer to the injury.

    Please don't drive if you can't. It's been over 15 months since I've driven and I know it's horrible, but it would be worse to hurt yourself more or someone else.

    I'm sorry disability is impossible! I have been waiting for a hearing for over a year now. I have Jeffery Freedman Attorney's handling my case so that I don't have to deal with the frustration.

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  6. Kate...I just found your blog again. shortly after I posted my comment my computer crashed and I lost all the addresses. IT has taken me until March to find it again. My Dr is horrible...his well we will just wait and see approach turned into an attitude of yeah I Don't believe you. Then I found out I didnot have insurance after Jan of this year so I Could not even go to him or the OCcupational Therapy he prescribed....MY disabailty insurance company finally decided to pay :) But they called me friday and said that my Dr removed all my restrictions EXCEPT operating heavy equipment and when they called to see if that included driving his office said no Chip can drive (never told me that at my last appt in Jan) So they told me they are discontinuing my coverage...so I either have to talk him into reversing his "OPINION" or find another Dr. I think I Will try to make an appt with Dr Kang. I am glad I Found the blog again. I am out near Darien Lake so it was close to go to my Dr in Batavia, but after the expereience I had met with Dr.Laszlo Mechtler at dent and I was not impressed what so ever....hope this guy is better :) Thank you again

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