Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

[jackieg412]

Susan thinking of you and wish you well. Keep us posted. Jackie

[golfnut]

Rohrer & Susan,
I am thinking about both of you and hope that your problems can be resolved.

[susancook]

Another day at the hospital and balance/strength in legs is about the same. No answer yet and will hopefully have a Neuro consult tomorrow as the docs that are working with me have just about ruled out all that they know. Had a pity party at 5 AM when I could not walk at all to get on the beside commode. Half a box of Kleenex later, I resurrected what small amount of dignity that I had remaining and disposed of my mound of soaked tissues.

I will post tomorrow if someone has a magical diagnosis.

Had a shower tonight. I thought that the MA would sit me in the shower chair, set me up with everything, and stand outside while I sit and clean up. Oh, no. She washed me off like a 1971 off road Ford Mustang in a $2.00 car wash. Am I clean!

Susan....scared, worried, and frustrated

[susancook]

Susan,
I am also having trouble with my legs. It started suddenly and I have good days and bad days. The bad days are rough and I really should have a walker for those days. But my leg problem can crop up without warning. For instance, I walked into the doctor's office for my routine injections and could barely walk when I left. I wanted the doctor to see this in action. I had a bad day and did a walk-in at the clinic so the nurse could see it. I was hoping the doc could spare 10 seconds of his time between patients just to see it, but he couldn't. It didn't matter, he saw it the next week. It is though I have 20# weights strapped to my ankles and my feet just drag and I have to swing my hips to take steps. I don't feel weight on my legs, but that's how a person with weights would have to walk. It's kind of scary for me. They are in process of trying to figure it out. All of my DNA tests have not come back, yet. By the time my father started having serious problems with his legs, he didn't live but about 10 years more. I'm only 45. I'd like to see more than 55 years of age. Hopefully they can figure things out for you and me both.

At least with you, it's not a neuromuscular degenerative disease. Hopefully, they will figure out if there is some kind of nerve blockage and be able to help you. My balance is terrible, too. We're all a mess. Get better soon!

(((HUGS)))

Rohrer, wishing you the best as you go through the diagnosis process. Mess just about describes it. It is frustrating for me to try to send the signal to my leg to raise up, only to observe it sitting there.

Hugs to you also, Susan....great to have a buddy going through this, but sad that both of us are in similar boats

[titaniumed]

She washed me off like a 1971 off road Ford Mustang in a $2.00 car wash.

With a pressure washer? Did you get the wax for the $2? If not, insist on it the next time.

Susan, Rohrer, at least you guys have a sense of humor in all of this.....lets hope this all passes quickly....

Ed

[PeggyS]

Hugs

Sending prayers & hugs to Susan & Rohrer. . . You've been on my mind all day. May you both be blessed with a quick diagnosis, a treatable outcome and a fast recovery.

[springchicken]

So sorry to learn you are in the hospital, Susan. I hope it is not for long. And I hope you and Rohrer are both able to find healing from these leg/nerve issues, and a quick diagnosis. I'm sure it is frightening and frustrating. Keeping you in my thoughts.

[susancook]

"It was the best of times, it was the worst of times...."

Thanks, Spring chicken for your supportive note.

Short note...ended up not to be so short....

The Cliff's Notes version:
Saw Internal Med at OHSU for appointment for 2 weeks of progressive lower extremity weakness at 11 am
Sent to ER, a dozen or more ambulances and 4 helicopters ahead of me, and a dozen walking wounded
ahead of me in line.... One meltdown by me screaming at receptionist that I was tried of waiting
Read that "so,so,so scared"
2000 (or 8 PM for you non-military types).....Saw ER doctor
MRI done "boy, you have a lot of hardware"
Labs drawn
Admitted to OHSU hospital at 0200
Crawled into bed, then 5 minutes later, exam by Sleepy Intern ( count 4 yawns) and med student.

Fri and Sat progressively weaker
At least 8 Neuro exams, more labs
Using walker, can walk 8 steps with 2 helpers TOPS

Sunday:
Woke up at 0730 with NO leg movement bilaterally, (profanity deleted here)
Cried, mentally chose paraplegic wheelchair color and accessories
3 physicians separately about 20 minutes apart do Neuro exams: no lower extremity movement, cried during exams
Sent family text memo sharing the bad news; called husband tearfully
Ordered breakfast, told kitchen receptionist: "Make breakfast really good because I am having the worst day of life..."
Friend preplanned to bring Sunday pastries, she texts that 5 yo daughter had meltdown, would be late
I text back, "no leg movement, expletive, bring new legs"
Friend gives big big long hug, big mutual cry, no lower extremity movement.....
Cranked bed up to 70 degrees to sit up, eat pastries
We talked for 30 minutes
Now about 1000am, paraplegic for 3 long hours
She did a massage of my legs which felt awesome as I still had sensation
We look down at my R foot....it is moving slightly....just R foot, we cheer.....
Then no further movement....

Internal Med team(female Attending, with gaggle of Residents, interns, med student)
Tell them what we saw.
No movement, then....
1 minute later R foot moves and gradually over next minute, Bil weak legs but movement returns....awesome!

X-rays and labs ordered & done.
CT, myelogram with contrast, bone biopsy, and spinal tap (call that "fun", I am certain) being planned for Monday....not necessarily in that order, but nobody asked me....

Nobody knows why....and I am keeping my bed at 70 degree angle.....and mentally cancelled paraplegic wheelchair.

Susan.......this has been the longest 4 days of my entire life!

PS: 2 best conversations of the day:

1). Susan after noting 2 totally paralyzed legs and 30 minute cry (to kitchen staff) shouting into phone while ordering breakfast: "and you better made that breakfast & coffee really hot because I am having the WORST day of my entire life!" Silence on other end of phone and small voice finally says very quietly, "well, OK"....

2) Very serious looking Attending Neurologist, having a Bad Hair Day, walks in hospital room with gaggle of R, I, MS &
addresses me: "How are you today?"
Me: Sobbing out of control, "Terrible! I cannot move my legs!"
Serious Lady Neurologist w/ BHD: "Swing your legs over the side of the bed and we will check them".
So, I laid in the bed and stared at my legs, hoping that I could will them to move....and thinking to myself, "what part
of that statement didn't she get?"
Silence....no Resident, Intern, or Medical Student moved.
SLN with BHD: "Can you try to do that?"
Me still willing totally still legs to do something: "Can't you see them moving?"

[babyboomer16]

This is awful!

Susan! Susan! Susan!~~~ oh my I havn't been on here for a while (had a hysterectomy) . I was just shocked when I saw what has been going on with you! Oh I feel so bad for you. The last I know you were having some pain issues in the pelvic screw area. But how did it go from that to this? I feel your fear~~ and anxiety. You keep us posted and I'll keep you in my prayers. Warmest wishes for an answer and a treatmeant to make you walk again!!

[Irina]

Susan, dear, I am so sorry! I hope tomorrow will be a better day and doctors figure out what's causing this problem. I am so worried about you! Please, keep us posted.

[susancook]

Thanks Everyone, I am numb about today and both looking forward to and fear tomorrow. Little compares to my experience of being a paraplegic....if only for a couple of very long hours today. My legs did not move at all. Super scary. When I looked at the long list of procedures tomorrow, I was....or better yet am pretty overwhelmed. I fell 4 times in the past week when I lost balance and could not move my feet quickly enough to catch myself while walking at a snail pace. All were caught by a wall or another person. I drove to the doctor on Thursday.
I will carry your good luck wishes with me tomorrow. Susan

Ed, I will try to find some humor in tomorrow's marathon procedure schedule. It may not be very funny ;+{

[susancook]

With a pressure washer? Did you get the wax for the $2? If not, insist on it the next time.

Susan, Rohrer, at least you guys have a sense of humor in all of this.....lets hope this all passes quickly....

Ed

I was laughing so hard that I don't remember if I got the wax job or not? Oh, you're talking about a Brazilian wax. Just checked....guess that I didn't.
Susan

[springchicken]

Oh no, what an experience you are going through! I am so sorry to hear it. Please keep us posted on your tests today and best of luck with them. I'm glad you have good friends to lean on right now (and bring pastries). Hope you are out of there very soon.

[rohrer01]

Susan,
Oh I hope they figure out what's causing your leg paralysis tomorrow!!!

Thank you everyone for your well wishes for me on Susan's thread! I hope you don't mind, Susan.
I can still walk. Yesterday was a good day and if I'm hanging on to something like a grocery cart I walk even better.

Susan, this has to be temporary for you. I'm sure they'll figure it out. I'm not so sure in my case. My dad died after his legs started to fail. I was positive that he had ALS. He had all the symptoms. But my symptoms are coming at a MUCH younger age...typical for dystrophic diseases. But muscle biopsies showed no dystrophy, at least in the deltoid muscle.

I'm optimistic for you. I really am! It sounds like a pinched spinal cord to me. They can do something about that.
Mine is so much more evasive. Although I'm having a lumbar and pelvic MRI on Wednesday. They want to look at the sacral nerves as well as the lumbar. I'm sure they'll be looking at that and much more on you tomorrow.

Please keep us updated.

Ed, the only attitude to have is to be positive. The alternative is to lay down and die, which I don't plan on doing!
Susan, it may be morbid to find it a little amusing that you were thinking of picking out scooter colors, but that gives me some plans, too! Although I'll use a walker first. Maybe I'll be the only one in town with a hot pink and purple "sparkly" walker! :-) I'll definitely need it when the snow and ice come!

Hang in there. More hugs coming your way. You know I would have helped you dine ever so graciously on those pastries!

[mabeckoff]

Susan, I am praying for you.
Hope you get some good news soon

Melissa