Author Topic: Surgery Update... (or look who's right back on morphine)  (Read 34050 times)

wordnerd

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Surgery Update... (or look who's right back on morphine)
« on: May 10, 2008, 05:05:44 PM »
Ok inquiring minds (hehe)... I decided my little pity party/freak out attack deserved its own thread, so...

Yesterday I had my surgery to implant phase one of my pee pacemaker (ie the electrodes next to the nerve with an exterior test pacemaker).  I had to arrive at 5am which meant leaving the house at 4am.  I was pleased to discover that this hospital was very prepared to deal with my latex allergy.  Both the pre-op room and the recovery room were already LATEX FREE!!  And they prepped the OR all latex free with out any issue.  That was a big relief.

So in the OR before they game me any anesthesia, they were poking around on the back of my hips to feel where exactly they were going to insert the wire going to the nerve.  This was when I first put two and two together that all three incisions were going to be on the most sensitive spot on my body.  I can hardly be touched there without yelping.  However the anesthesiologist was amazingly awesome.  First of all she had her fellow call me the night before and go over my medical history in detail, so they would be prepared.  Secondly, she knew all about Sjogren's, explained everything she was going to do and why in detail, and was perhaps the nicest most cheerful person I had ever met.  So she didn't hesitate to give me some pain meds, so they could feel around properly without me jumping off the table.

I don't really remember anything after that though I was only in twilight and apparently was able to talk the whole time and answer their questions about what I was feeling from the electrodes and where.

Then I remember someone saying they were done, and then I was in the recovery room getting 3 doses of demerol because I couldn't stop shaking and lots of pain meds.  I apparently spent an extra hour there, but I don't remember.

Then I was back in the pre-op room and they explained some stuff to my mom that I also don't remember.  Then the doctor came and wrote me a Rx for an antibiotic.  He was going to give me darvocet for the pain until I reminded him that I just finished tapering of 15mg Morphine ER a few weeks ago, so he said to go back on the Morphine as needed.  And then I got dressed and my mom took me home!

At home one of the incision sites was excruciatingly painful and my left foot was twitching like mad especially if I turned the external test pacemaker up to a workable level.  Luckily the guy from the manufacturing company who works with my doctor to get it set up optimally called to check on me and he had my mom change the configuration so that it was stimulating a different part of the nerve.  That made the pain way more tolerable and my foot stopped twitching.

However I started to notice last night that my left leg was harder to move than my right.  And by this morning I could barely move it.  My right leg moves completely normally, but if I sit in a chair with my feet on the ground I can barely lift my leg an inch off the ground.  I can't bend or unbend my knee or wiggle my toes really either.  Naturally I was very freaked out by this. 

I paged my doctor and got a call back from the doctor on call.  She said to turn off the current for 2 hours, and it should go back to normal.  After almost 3 hours it hadn't improved at all, so this time my mom called back.  The on call doctor said that even though she'd never heard of this exact issue happening before (apparently a few patients had felt like their leg was kinda heavy... not paralyzed) the nerve was just very irritated, but she's sure that after a few days of having the current it should go back to normal.  She insisted that she didn't think it was very concerning and that there is no way that it's permanent.  She also added that they wouldn't do anything about it now anyway and since I'm coming in for a post op appointment on Tuesday, my doctor and the guy from the manufacturer will be able to access it then if it's not better.  But she said that she was sure it would be (this time).

So right now I'm trying really hard to stay calm and trust that she's right even though she's not my doctor and none of her patients had ever had this happen before.  I'm trying not to freak out about the fact that one of my legs is essentially a dead weight as I drag it along balancing on my other leg and my walker to go back and forth to the bathroom and that I need my mom to lift my leg into bed for me.  I'm trying really hard to believe that this is merely a temporary inconvenience that will correct itself soon since it is only a very extreme form of the heaviness that other patients have experienced.

And there's really nothing I can do about it at this point as I lay here on ice and 15mg of Morphine ER but type this up and try to ignore the incision pain.  Because, though I may be back on Morphine, 15mg is as far backwards as I'm willing to go.

quiger

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #1 on: May 10, 2008, 05:12:25 PM »
Oh Lauren, I am so sorry to hear what's going on. I was so hoping that the surgery would be successful and with minimal pain and discomfort. Try to rest and let your Mom take care of you.

I'll be thinking of you. Let us know how you are doing when you get the chance.

Hugs,
quig
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YICKelly

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #2 on: May 10, 2008, 05:13:49 PM »
Oh Lauren, I am so sorry.  You said that the manufacturing company man called you.  Do you have caller ID so you can call him back?  If so, I would do that.  Someone better able to know what is going on is needed.  I know when they hit a nerve in my arm, putting in a line, it was a couple of days before I could move it easily.  Good luck.

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #3 on: May 10, 2008, 05:26:19 PM »
Thanks Quig and Kelly!

I forgot to mention that I spoke to the company guy again today already and he has no clue.  He agreed I should leave it off until I can move my leg again though.  He said he'd call back tomorrow to see how I'm doing...

I will keep you posted.  At the very least it helps me stop obsessing about all the ifs by writing it down.

*hugs back*

-Lauren

Scottietottie

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #4 on: May 10, 2008, 05:36:51 PM »
Hi Lauren

Wow - that doesn't sound too good. maybe your leg feels more than 'heavy' because you have so many health issues and hopefully it will resolve like they say.

I know after I had knee surgery for a partial joint replacement I had a heck of a time doing the physio exercises when there were people 20 years older than me managing fine. Things just seemed to take longer.

Keep us informed.

take care - Scottie  :)
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Patze

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #5 on: May 10, 2008, 05:46:20 PM »
Ah Lauren,

I was hoping that this would help put things right for you, wow, talk about coming out of left field.  I sure do hope that tomorrow will bring some feeling/mobility back!!!!
It's nice to see that you're not letting this get the best of you...so hang in there, okay?  

Take care now -

Patze
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Jag

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #6 on: May 10, 2008, 07:24:29 PM »
I don't know, I'd be as worried and freaked out about it as you are!! Do you have feeling in that leg at all? Is it swelled at all? Do you have pulses in that foot..bloodflow to it? I guess maybe it's the nurse in me, maybe it's because I don't feel really comfortable with them telling you to wait until Tuesday when you're having this much difficulty that they can't seem to explain. Sure, it could be swelling from the surgery pushing on a nerve, but if you put pressure on a nerve and leave it there, it can have a rough time bouncing back. If you have any loss of sensation, any swelling, redness in that leg, or decreased blood flow to your leg or foot, I'd head to the ER. JMO

Jag

susanep

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #7 on: May 10, 2008, 07:43:06 PM »
I am praying for your healing.

susanep
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irish

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #8 on: May 10, 2008, 09:48:19 PM »
Lauren, I am with Jag on this one. Anytime you have the symptoms that you are having and someone says "I don't know but other people haven't had this happen" and then try to minimize it and say that it can wait til Tuesday is scary.  "Crap" happens sometimes for some reason that doesn't even make sense at times. Is there any way that any of this "hardware" could slip and cause pressure on a nerve or something similar????

Please know that I am thinking of you. Hopefully your will get action back in your leg soon.  Irish ;D

lynnmarie219

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #9 on: May 10, 2008, 09:57:16 PM »
(((((((((Lauren)))))))))

I'm so sorry that you re going through all of this and I hope that by the time you read this you have some relief...if it is the same....I would also not put it off until Tuesday to try to get some answers...especially since it is worrying you so much (and rightly so).


Please take care and let us know how you are doing...hugs to you and your mom for helping you (we are never too old for our moms help are we?)  ;)

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #10 on: May 10, 2008, 10:04:22 PM »
Thanks Scottie, Patze, Jag, and Susan!  What I would do without the support of everyone here I just don't know! <3

Scottie - I'm hoping that my laundry list of health problems is what's causing my leg issue to be significantly worse.  I already have a lot of pain and inflammation in hip and sacroiliac joint region, so it wouldn't be surprising if I had more severe symptoms from the procedure.  I'm not the average patient let alone average 24 year old patient.  ::)

Jag - Yeah I have feeling in my left leg, but its kinda hard to tell if its any less than normal because I have already have surface numbness on my whole right thigh that has nothing to do with my surgery.  Makes it hard to compare.  It doesn't seem swollen and the blood flow seems okay with the exception of my toes, but I have Raynaud's, so...  It mostly feels like no matter how hard I'm telling my leg to move, there is an equal amount of force holding it in place.  I don't think my local ER would have a clue what to do with me, and the university hospital that did the surgery is about an hour away.  But I don't feel comfortable with her advice either.

I've poked around online looking for any info on this happening but couldn't really find anything useful.  I think I'm going to have to wait it out, but if it gets worse that on call doctor will be hearing from me... no matter what hour it is.

Thanks again everyone for all the support and well wishes!  I'll keep you posted...

-Lauren

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #11 on: May 10, 2008, 10:21:02 PM »
Thanks Irish and Lynn!

I specifically asked if the electrode could have been dislodged and be causing this and she said no way.  I have had way too many personal experiences with doctors being "sure" about what was or wasn't wrong with me only to be very wrong themselves.  Apparently, there was no way someone my age could have chronic pancreatitis, there was no way I could be anemic, no way I could have sleep apnea, and yet...

I just don't know what to do about it right now.  I feel really stuck.  I can't get a hold of my actual doctor who did my procedure.  I have no desire to wait for hours in the ER so I can have them not understand the complexity of my health situation and have no clue about my procedure and fend off nurses coming at me from all sides with latex.

I guess I could give my uncle/pulmonolgist a call and see what he thinks.  His partner is my GP and the one who referred me to this urologist to get this procedure.

I don't know.  And yeah my mom has been pretty great... it's nearly her day too  ;D

-Lauren

Jag

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #12 on: May 11, 2008, 07:14:15 AM »
Lauren
Here is a hint that one of my docs gave me when I was having a bad time with my heart and had just waited hours the night before in the ER. She said 'call an ambulance!' They do see you faster, you don't have to sit and wait, and I think that your symptoms warrent it. Just make sure to tell them that you need to go to the hospital where you had the surgery so the doc who did it has privilges there. Of course, this is just a suggestion, but if it's the long wait in the ER that is holding you back, I thought offering an alternative could be of use. Especially when you just had surgery, and you're unable to walk on both legs!

It sounds like you've had issues because of your age, which is the same issues I've had to deal with. When my doc sent me to the ER for an abnormal EKG, some Doogie Howser said 'no one that is 35 can have heart problems'. I wasn't monitored, and he sent me home. I was back the next day with an elevated Troponin and abnormal EKG... slight heart attack... and was admitted. Ambulance that time, and they saw the abnormal EKG as soon as I got hooked up to their monitor. I do remember the driver asking if that guy wanted him to 'run it hot'... and he said 'yeah, there's some heart stuff I'm seeing that I don't like'. I was in the 120's to 130's laying down.. where I normally would have been in the 60's or 70's. It was an experience!

Good luck, and I hope your relative is able to give you some more info!

Jag

wordnerd

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #13 on: May 11, 2008, 10:37:21 AM »
Thanks Jag for the tip!  I'm not sure how far away an ambulance would take me...  The hospital I had surgery at is about an hour away without traffic.  Same for the hospital that all of my other doctors besides my urologist work at.  And the doctor on call for my urologist is so convinced that its nothing to worry about that I just don't know what to do.  I'm going to give my uro's office a call again today and let them know I've had no improvement, and see what they say.  I'm also going to call my uncle and see what he thinks.

In the meantime, my costrocondritis is all flared up today for some reason.  I wonder if I should have been given some extra prednisone for the surgery since I've been on it so long even though I'm only on 5mg every other day now.  I'm also kind of worried that my leg paralysis is really part of my preexisting and undiagnosed neurological issues since I've been having involuntary muscle movements, tremors, and seizures for a while now.

And yeah I've had TONS of issues because of my age.  I started getting sick when I was 18, and now I'm 24.  I've had to change doctors and fight every inch of the way before I found ones that took my issues seriously.

Oh and by the way... I got the results from my CPAP titration study back and discussed it with the sleep doctor.  I apparently happen to be one of the rare few who have a problem with CPAP because I tend to swallow tons of air in my sleep.  (I think its probably because my mouth is so dry... I always swallow a lot trying to get the tiny amount of saliva I have to spread out around my mouth.)  So since I don't have very frequent apneas, but when I do my oxygen drops to dangerously low levels, he decided to have me try just sleeping with humidified oxygen for now and reevaluate in a few months.  So hopefully I'll be getting the equipment for that this week.

Thanks everyone!

-Lauren

Tamik

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Re: Surgery Update... (or look who's right back on morphine)
« Reply #14 on: May 11, 2008, 10:59:32 AM »
Lauren,
I am sending warm thoughts your way and hope you feel better soon.  TamiK