Author Topic: Surgery Update... (or look who's right back on morphine)  (Read 37998 times)

Cheryl

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #15 on: May 11, 2008, 01:21:33 PM »
Lauren,
  I know it must be scary to lose the use of your leg this way.   Surely there's just some swelling at the site of the surgery causing pressure on a nerve.   (That probably didn't make any sense, but it made me feel better to say it!! )  I do hope that you are back to normal soon and the surgery is a success.   Best wishes!
Cheryl 
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stegello08

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #16 on: May 11, 2008, 04:45:27 PM »
I will definitely keep you in my prayers, and I wish you a quick recovery. Try to hang in there, and don't get too discouraged about the morphine. You willed yourself off of it once, you can do it twice. :)

genko_b

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #17 on: May 11, 2008, 08:46:14 PM »
Wow Lauren:

I'm hoping you can get someone to help with this before Tuesday. Since Friday I've been neck deep in a big event related to our tea school (like a convention of Japanese tea drinkers) that ends next Wednesday, but I've been trying to check in when possible.

I'm not happy about how much trouble you are having with this procedure. It is supposed to help you, not scare you or give you more problems. So sorry for this complication. My fantasy is that we could recruit an advocate for you to manage your care so you could devote your energy to recuperating rather than trying to shag down doctors to answer your questions, and your mother could focus on your home care.

Genko

kimbo

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #18 on: May 12, 2008, 09:55:05 AM »
Hey word,
I've been praying for a course of action to intervine in this recovery complication. It's Monday noon time here in ark and I can't help hoping you are doing better or have found some piece to the puzzle that is giving you relief.
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Care

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #19 on: May 12, 2008, 05:55:28 PM »
Hey wordnerd,

Do you have a neurologist?  If you do, maybe he/she can help.  Obviously the nerve is irritated, hopefully not damaged.  But if it is a nerve problem I can't help but think treatment asap will help it heal more rapidly.  And yes, many doctors do not understand the complexity of these illnesses and how they can cause our bodies to react differently to all this.  They had a segment on NBC national news tonight.  They spoke about women and autoimmune illnesses and how they are frequently misdiagnosed.  A Lupus specialist said most doctors are not educated on these illnesses and how frequently they are misdiagnosed.  And yes, mentioned that we are not NUTS!

YES!!!
Please get better!
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wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #20 on: May 12, 2008, 11:10:58 PM »
Thanks everyone!  It's good to know everyone is thinking of me!

So I'm posting from the hospital now.  Yay my laptop!

I called my uncle on Sunday Morning and he said I should definately go back to the ER of the hospital where I had the surgery because this is not normal.  Basically they need to figure out what's going on.  So got the ER at around 2:30pm Sunday, got put right back in a room, and got admitted around 4:30am today (Monday).  I had to put my foot down (metaphorically speaking of course  ::) ) with admissions and make them at the very least put me in room with another latex allergic person.  Now I finally just got into my own room, and my nurse is latex allergic, so I don't have to worry about her coming in with the wrong kind of gloves.

Today I saw about four people from the urology department... one of which was the on call doctor from the other night.  She was extremely apologetic (and looked pretty stressed out about the situation).  I also saw five doctors from the neurology department and who doctors from rheumatology.  So far no one is sure why I can't move my leg.  They did a CT that didn't show any bleeding pressing on the nerve, so that's all that's ruled out at this point.

If they decide that this isn't directly from the surgery... either a very odd coincidence or some AI issues triggered by the surgery, I'm going to get transfered the the hospital that has all of my doctors at it (aside from the urologist) because they know me a lot better there.

Right now I'm just trying to hang in there until they figure it out.

Thanks everyone for being so supportive as always!  I hope everyone else had a good mother's day weekend (I know my poor mom didn't).

I'll keep you updated when I can.

-Lauren

Katybarstool

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #21 on: May 13, 2008, 12:07:14 AM »
Lauren

Well done for getting back into the hospital. Whether it is a 'coincidence' or not, it defintiely needs sorting.

Will be thinking about you and sending positive vibes.

Kathyx

Patze

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #22 on: May 13, 2008, 03:46:07 AM »
Hi Lauren,

Wow girl, you are giving them a run for their money!!!!  Seriously, how are you feeling?  I sure hope that the doctors figure out what the heck is going on...out of left field here, but could it be that you're allergic to whatever material they put in you (I know that you've mentioned that you're allergic to Latex)?

Off the wall here, but I'm winning the war! ;D

Patze
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Jag

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #23 on: May 13, 2008, 04:40:11 AM »
I am VERY glad to hear that you got back into the hospital! Now hopefully they can find the problem and fix it, no matter what it's related to!!

Jag

Scottietottie

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #24 on: May 13, 2008, 04:31:02 PM »
Hi Lauren  :)

I hope they figure out what's happened really soon. You sound as though you're in the best place for it.

Hang on in there.

Good you're keeping in touch.

Take care - Scottie  :)
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quiger

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #25 on: May 13, 2008, 04:41:51 PM »
Lauren,

We are all thinking of you and wishing you the best. I hope they get to the bottom of the problems soon. I must say, you are handling the whole situation better than I probably would. Take care of yourself and please keep us posted.

Hugs,
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Care

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #26 on: May 13, 2008, 07:32:58 PM »
Lauren,

awwwwwwww so sorry you are still having problems, but I was happy to hear they hospitalized you!  I thought that was where you belong.  Sounds like a neurology problem to me.  Our "nerves" are not exactly normal! :( Please keep us posted and know that you are missed!  I am looking forward to having you back on staff!  Miss you....
Care

genko_b

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #27 on: May 13, 2008, 07:56:36 PM »
Hopefully now things will get back on the right track. I'm glad the docs are taking this seriously now, but it is ridiculous that you had to push like this.

Genko

wordnerd

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A Bit of an Update
« Reply #28 on: May 13, 2008, 08:42:24 PM »
Hey everyone!  Thanks again for all the support and well wishes!

Well after a very frustrating day of mostly not hearing anything or having any idea of what my doctors were planning to do, I finally heard from my urologist.  He spoke at length to my GP (they are really good friends incidentally).  So since I still can't move my leg but it doesn't seem to be directly caused by the implanted electrode my doctors want to transfer me to the other hospital where all my other doctors besides the uro are at.  The plan is to stay there for 7-10 days and get seen my rheumy, neuro, and GI docs who know me well, get a bunch more tests done, and get a bunch of PT to try and get my leg working again.  If we can get some improvement with my leg, then my urologist will try reconnecting the stimulator box to see if he can get that to work for my bladder because right now I'm stuck with a catheter.  If my leg is the same after 7-10 days and they haven't figured out any other reason I can't move it, then I will have the electrode removed and go from there.  Basically we want to avoid having to remove the electrode because without it and the bladder stimulator, I'm probably going to be stuck self catheterizing for the rest of my life.  And at 24, that's a really undesirable option.

So tomorrow I'm moving hospitals and getting a pic line in (I'm already on my 3rd IV... my veins can't handle IVs anymore).  Then hopefully we can figure out what happened with my leg.  We think that something during the surgery triggered it, just not the hardware itself.

Patze - I checked with my doctor and the electrode is basically surgical steel and polyurethane, so its very unlikely that I'm allergic.

My personal theory is that the trauma of the surgery triggered some autoimmune something that was already going on with my legs.  I've been thinking about how much trouble walking I was already having before this happened.  Ever since I was hospitalized for 6 weeks back in October/November I've been unable to walk without my rollater.  My strength has improved a lot but then sort of plateaued and all these months later my legs were still all wobbly and uncoordinated and I've been still having balance issues.  So I'm kinda wondering if something was going on mildly all this time and then flared on my left side when I had the electrode implanted on my left side.

I don't really have any medical info to back this up... it's just my intuitive feeling.  And my intuition about what's been wrong with my body has been pretty spot on thus far.

As to how I'm doing... I'm trying to stay calm and have a sense of humor about the whole situation.  I don't like to think that someday I'll look back on this and laugh.  I'd rather try and laugh about it now and look ahead later.  If there were a guide to living my life I'd entitle it "Don't Panic" (if it weren't already taken) and my most useful item would be a sense of humor.

Now that I know my doctors have a plan I'm not so stressed out too.  I really have a hard time not knowing what's going on (no matter what it is) and not knowing what the plan of action is.  Now I at least have a plan and a timeframe.  My parents are going away this weekend to a long ago planned trip, so in a way its going to be sort of a vacation for me.  Well a really unfun vacation... more of a break from my family.  My sister is home but she apparently she doesn't want to have to come drive an hour to see me.  So whatever...

The only thing that's been hard is that I still have the impulse to call up my former best friend when stuff happens.  It's weird not having someone to call and let know how you are.  Especially since we were best friends for almost 8 years.  And there's been no closure between us.  The last time we spoke she was all excited to tell me about this new boyfriend and that she was in love and she was supposed to come over the next day.  And then she didn't show and never called, and I just had enough of her being flakey and didn't call anymore.  But I still get the impulse to call her and tell her something important.  I don't know.  It's been months now, but that hurt still feels fresh sometimes.  I think if we had a big fight or something it would be easier.

Anyway... I really appreciate that all of you are thinking of me!  It's comforting to know that there's such a supportive group of people waiting for me when I open my laptop... if the hospital just remembers to give me the correct login info for their wireless network :D

Take care everyone!  I wish I had more time and energy right now to keep up on all of your posts, but I am thinking of Sjogren's World and hope you all are well!  I'll keep you posted...

-Lauren

stegello08

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #29 on: May 13, 2008, 09:17:54 PM »
Hey Lauren,

After reading everything you are going through, I look up to you. You are going through a horrible ordeal, but you are handling it so well. At your age, you are definitely too young to be going through all this. Well I should say at our age (your 2 years older than me) but you are going through way more than me. I thought I had it bad, but after reading your posts, it kind of puts me in check, so I guess I can quit with the pity parties. Like I said before, you are in my prayers, and I pray you get well quick!

Take care,

~Stephanie 8)