Friday, June 7, 2013

The latest in my cauda equina saga.

My oncologist had not gotten back to me about the referral to a neurologist.  So I called my radiation oncologist (who referred me to physical therapy), but her nurse said that the referral would have to come from Dr. O.  So I called the BMT clinic again, and Carla had just come from a meeting with him.  She said that he had made the referral, but got a call back from the neurologist saying that he couldn't do anything to help me.  He said I need to go to the pain management clinic.  :o(  She told me to call them on Monday to make the appointment so they would have a day or so to review my history.  

I had some hope that a neurologist would be able to tell me something I could do to improve the paralysis, or at least how to live with it.  But I also knew that it was very possible that nothing could be done.  

I'll have to call my PT to let  him know that I won't be seeing a neurologist.  Maybe I can get pics of my last MRI so that he can see the mess we're dealing with (the tangled, curled up nerves).  I'll also take the reports from the PT to Dr. O next week.  I'm scheduled for IVIG at the BMT clinic on Thursday.  

We had to go to Mom's late last night.  She had packed again, and called wanting to know where everyone was.  I think she thought we were going to move her.  We got everything unpacked again.  Ron went over today and said that she had not repacked, but was still in her night clothes at 2 in the afternoon.

I'm trying to stay upbeat, but it's not easy.


Adrienne said...

Good grief. I don't know how you do it. I take it surgery is not indicated for the cauda equina. to PT.

Don't have a clue as to your mom. It's starting to sound like she needs a bit more supervision. Even though it sounds sort of funny (her packing up every day), it's certainly not for you guys 'cause you have to deal with it.

What exactly is she packing up? Perhaps you could find a way to leave some of the stuff packed. Every day you could tell her she'll be moving the next day.

When we took away my dad's car, we told him it was in the shop having something or another fixed. Whenever he asked if it was ready, we told him "soon." That went on for about 4 months. Darn car never did get "fixed." We sold it.

Kalona said...

Hi Adrienne,
From what I have read, cauda equina is usually caused by a compressed nerve, which needs surgery ASAP. Mine is not caused by that, and by the time it was discovered it was probably way too late for surgery. I thought a neurologist might be able to give me some advice on how to manage it, or meds to calm it, or something.

Mom packs up anything and everything. The funny thing is what you find in bags and boxes. Figurines wrapped in underwear, clothing, Teddy's dish and toys, lotions, pictures--all thrown in together. Sometimes she empties out her entire closet, other times she empties out her dresser, and sometimes it's everything under the bathroom sink. I'm afraid to tell her she's moving the next day because she would probably try to pack everything in the apartment.

Mom wrecked her car years ago, and caused some other cars to crash, too. After that we just told her she could never drive again, and she didn't argue. She is afraid of traffic here, even riding in the car.

Adrienne said...

My mom willing gave up her car even though she really was okay driving. She was only in her sixties, but grew to hate the traffic, too. Women are better about that issue than men are. My dad was an absolute bear about his car. It really got ugly.

How about getting your mom doing jigsaw puzzles? They used to have them in the common areas at the assisted living places I went to and any and everyone would work on them. I used to stop and watch and next thing I knew I was as busy as everyone else. They were pretty addictive.

Would she follow a list of sorts? You could leave her short lists of things you need her to do. Make it sound like your really, really need her help. Maybe sorting a big bag of buttons. No - I'm not kidding. You can get big bags at Goodwill. You can call her and ask her how the sorting is going to keep her on track and busy.

Not having met your mom, all I can do is throw out ideas...

Kalona said...

She does like jigsaw puzzles. When we were growing up, she often had a big puzzle on the coffee table that all of us worked on. I've taken puzzles over to her, and she worked them (I got some with not too many pieces). Then she insisted I take them home for the kids.

She used to enjoy embroidery, and has mentioned doing that again. I'll take something to her, but it may be frustrating for her. No harm in trying it, though.

My sister was telling me about a friend of hers whose father has alzheimers. She said she asked her dad to crack pecans for her while she was cooking, and that he became a pecan cracking fool. She said they had pecans in the freezer and gave them to friends, but since it was something he could do and seemed to enjoy, they just kept getting more pecans for him to crack.

I'll try the button sorting thing with Mom and see how it goes.

I so appreciate your suggestions, and your friendship, You are a honey.

Johnnie Enders said...

Just wondered how things are going. You make me nervous when you don't get on your blog!! Love you!!

ViralSpace said...

Hey sweet Aunt Sharon...This is your nephew Collin. I miss you! I talked to Josh a bit ago about coming to see all of y'all. I love you, and will see you sooner than later...Prayin' for you...God is holding you as he always has. :)


ViralSpace said...

Hey sweet Aunt Sharon...This is your nephew Collin. I spoke with Josh earlier, and talked about coming to visit all of y'all sooner than later. I miss you. I love you. Praying for you and I know God is holding you as he always has and will. See you soon!


Kalona said...

Collin, it's so good to hear from you. I hope you can come to see us. You are always in my prayers. I love you so much.
Aunt Sharon