Surgery Update... (or look who's right back on morphine)

[genko_b]

Yes, well finally you are starting to hear something that makes sense. I was about to get on the phone myself and give someone a piece of my mind! I'm glad your uncle was able to get through to them.

Since I am having similar, although milder, symptoms to yours (taking a long time to pee, muscle weakness in the whole pelvic area and so on) I will be very interested to learn what they find out about your situation.

Genko

[wordnerd]

Thanks Katy!  

Hehe... I can just imagine some hospital operator getting a call from you Genko.... "I'm sorry we don't have anyone named wordnerd here..."  I'll keep you posted about what happens.  I hope I find out something helpful.

Man... I'm sooooooooo tired from yesterday.  Between all the stress and the phone calls and then I couldn't fall asleep or even stop crying until 3am.  I'm waiting for my lunch to show um and trying to keep my eyes open.


Zzzzzzzzzzzzzz

[Tricia281]

Gosh Lauren, this is overwhelming!  I don't know how you the energy to write but guess we all do what we can to keep going and this is obviously your way.  Take care and wishing you positive thoughts!

Tricia

[Scottietottie]

Hi lauren 

I'm glad things seem to be resolving. It sounds like you had appalling treatment. How sad they couldn't behave better without getting a doctor from another place to sort it.

I'm glad that at least one stress is away although you must be very stressed when you can't move your legs and no one can tell you why. Hope that resolves too.

Take care - Scottie 

[wordnerd]

Thanks Trisha and Scottie!

Yes writing it all out is very cathartic for me.  Once I get it all out, I can stop obsessively thinking about it.  I'm obviously still very stressed out about my legs not moving, but I'm just trying to keep myself busy and distracted with other things and sleep in between.

I'm just glad that I finally saw a neurologist who thinks something is actually causing my leg problem and who could think of several possible diagnosises of the top of her head.  It's hard not to doubt myself when everyone is basically writing me off.  I keep testing and retesting if I can get my legs to move, but I keep coming to the conclusion that if it was all in my head I would have accidentally moved my leg in my sleep or involuntarily when I wasn't paying attention by now.

I just can't wait to get back to my normal hospital with my own doctors.  I've already spent 10 weeks there in the past year and its not perfect but at least I have doctors I know and trust there and know how to navigate the system when problems arise.

-Lauren

[lynnmarie219]

((((((((Lauren))))))))) More hugs for you...you can never have too many!

I'm glad things are starting to resolve for you....and it will be even better when you get to the next hospital and start to get some answers and treatment if needed.

Please know that you have alot of people in your corner sending lots of positive thoughts your way!


Keep us posted when you are able!

[ccfbarb]

Hi Lauren,
I just got done reading your whole thread and am amazed at what you are going through!  The leg thing is very disconcerting, but I had sudden onset leg weakness last summer and every neurologist I saw could find nothing wrong.  I felt like I could barely walk.  The weakness affects the proximal thigh muscles and I still experience this leg weakness when I'm overtired or having a flare.  My new neurologist says my SJS is affecting my CNS.  All my EMG's came back normal.   Of course, yours seems to be connected to your procedure, which definitely confuses the issue.  Anyway, I just wanted to add my support and as a CT tech, tell you that if they are trying to look at your connective tissues, it sounds like you need an MRI, not a CT.  A CT will be able to see your bones well, but an MRI would probably give them more info and you less radiation!!!  Well, I suppose your doctors know best...ha ha!  Keep up your good spirits and I will be praying for you!
Barb

[wordnerd]

Quick update...

I'm at hospital 2!!!!  Yay!

My neurologist already stopped by... he's ordering and CT of the rest of my spine, a baseline EMG (to compare with another in a few weeks), labwork, and maybe a spinal tap.  I can't have an MRI with the bladder stimulator still in.  The goal is to try and fix my leg problem and have the bladder stimulator work for me.  If I have to have it removed of course I will.

Now I'm trying to get my meds and everything settled here (no thanks to the misdocumentation from hospital 1).

Let you know more when I get a chance...

Thanks everyone for their continued support!  I really appreciate it more than you know!

-Lauren

[quiger]

That's good news Lauren. I hope everything gets sorted out now and the docs can help you mend. This sure has been a frustrating time and definitely not good for you.

Thanks for the update. We'll be thinking of you. 

quig

[Tamik]

Lauren,
You inspire me...I am amazed by your strength and ability to advocate for yourself.  You are such strong woman.   
Tami K

[wordnerd]

Busy 24 hours...

Midnight - CT of spine

Morning - EMG and Spinal Tap (got horrible nerve pain and a kick reflex in my left leg upon needle puncture...  pressure was apparently over 300 and they drained it down to 210 before I got a migraine so bad they had to stop... haven't been able to sit up in bed since)and two urine cultures (so far I know my pee is green and has blood and protein... very odd)

Afternoon - Distracted myself by going on a mini crusade against the hospital's new verbal only menu policy.  Between the pain and the pain meds and my already nearly impossible allergies and eating restrictions its ridiculous to refuse to provide me with a written menu.  Made official complaints on the behalf of myself and others with as complex food issues... not to mention the hearing impaired!  You should have seen the blank look on the floor's food manager's face when I brought up having verbal only food menus for the hearing impaired... "Uh well we just changed to this and we haven't had that problem yet."  I told her that a major research hospital like this most certainly will.  The fight went right out of her.  Procured written menus and an official complaint form to go directly in to the hospital's food director's mailbox.

Evening - Having waited for the ever elusive pain management consult to show up all afternoon, named dropped my pain management doctors name everywhere I could think of.  Recieved phone call from her, adjusted pain meds, and a promise to come see me tomorrow (a WEEKEND  ).

Now I'm exhausted, on four hours sleep for two days in a row and napless, still in pain waiting for her new orders to make their way from her phone to my nurse to my chart to the pharmacy to my nurse to me.

Thanks everyone!  I can't wait to get through this and back to reading your posts!  This site and all of you inspire ME!

*hugs*

-Lauren

[genko_b]

Keep up the good fight! I can't imagine how they think a population of folks on pain meds with tubes going in and out of them can focus enough to retain an orally transmitted menu. And who would want to repeat it to everyone anyway? I suppose it is meant to save trees by not printing all those menus. . .

This has been one of those experiences that would make a great book some day, but is a nightmare to live through. Glad to hear at least some things are starting to sort out. It's been pretty wild.

Genko

[wordnerd]

Thanks Genko!  I've had a horrific time trying to get my nurse to get me my pain meds.  But I'll have to post about that later... right now it's just after 3:30am.  I finally got enough pain meds to control my pain about 30 minutes ago.  Just popped online to see if I had any replies that would help calm me down and make me feel better... so thanks for posting.  When I have a really bad day, it helps so much to be able to post about it on here and know that there are people who care about me waiting to read it and give me the unconditional support that is so lacking in the rest of my life right now.

Well I'm off to sleep (I hope!).  I'm on a ton of morphine... I wonder what I'll think when I read what I wrote in the morning cause I'm sure I won't remember. hehe

One more thing... I've been thinking about this thread title and it doesn't really fit anymore... I was thinking I'd change it to "Wordnerd's Hospital Adventure... a serialized account of post-op mishaps and mystery and more".  What you you guys think?  I wonder what I'll think in the morning 

Just kidding... two more things... has anyone used CarePages?  My hospital sponsors it and it looks like a neat tool for times like this.  I know how pathetic this is going to sound but... I honestly don't know if anyone I know (besides all of you) would actually take the time to use it to keep up to date with my progress    Thoughts?

I feel really bad I'm so behind on everyone else's posts!  I wish I could be lending support right now instead...

I'm thinking about everyone though and I hope everyone is doing ok!

<3 Lauren

[Tamik]

Lauren,

You are lending support to many people just by sharing your adventure.  Check out how many people have read your post!  378 as of right now....  We are seeing the strong woman in you, even if you don't feel strong,  who is enduring a lot, but is willing to trust us enough to share her story with us. That makes me feel positive, because I can see that if I ever need to turn to someone for encouragement and support, it will be there for me in this forum.  Right now, focus on accepting the love and support from all your sjogies friends and continue to share your adventure.  We are holding your virtual hand through this ordeal and will be there to celebrate when it is over!  Tami K



 

[mompain]

I hope things are better with you right now.  You have certainly been through an ordeal.  Make sure to keep us updated about the pain meds and all the other problems you are having.  You are in my thoughts and prayers.