NWR Update on my surgery- NEW Another Update 2.5 weeks after surgery

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newsjunkie Posts : 3,417 Registered: 3/30/06
NWR Update on my surgery- NEW Another Update 2.5 weeks after surgery
Posted: Jul 22, 2008 5:26 PM

I am in a great deal of pain as I type this but I wanted to let you all know that I am alive... though I can't say I am well.  This is an update on the surgery I had on Thursday (7/17) to implant a paini pump that would, hopefully, get rid (or very much decrease) the abdominal/pelvic pain that has plagued me for the past 3 years.  Here is how it all went down"

I have terrible veins- this is nothing new.  They called in a special IV team but even they couldn't get one in.  My doctor (the mean one) tried, too, but after a total of 7 or 8 tries they decided to bring me to the OR, give me nitrous oxide ("laughing gas") so the could continue poking me w/out further torture.  They finally got one in my FOOT.  (I counted at least 13 or 14 pokes, too, and my arms are giant bruises.)

The surgery went fine but when I woke up the pain was excruciating.  I was afraid of that and spoke about it with my doc ahead of time and he assured me that he could "knock me out for a week if necessary".  Well, he either misjudged, was mistaken, or outright lied because he did nothing of the sort even though I could hardly breath from all the pain.  I stayed overnight because of the pain (my mom stayed with me, thank goodness) and the amount of pain never changed.  My abdomen hurts but the worst is my back- where there is a small incision and, for some reason, it makes my back spasm from the small of my back up to the base of my head all the way down to the backside of my left arm- and my headache which they call a "spinal headache". 

I have done nothing but stay in bed since coming home and my symptoms are the same as the day they started.  On Thursday I go back to the hospital (different doctor, thank goodness) to get something called a "blood patch" which will supposedly cure it though it sounds horribly painful (I am begging to be sedated).

I fully admit that I wasn't the... nicest patient.  I  have been through so much hell and then when I realized my doctor outright lied to me about controlling my post-op pain I just couldn't give a damn what anyone thought about me anymore.  Unfortunately, there are NO other doctors in a 50 mile radius who treat my illness like this but I don't know how I can go back to such a total scumbag.  The whole situation sucks, I really don't know what I am going to do.

I may change my mind at some point- especially if this ends up helping my pain- but right now I truly feel like I made the biggest mistake of my life and that I never should have trusted a doctor I already hated before all of this.

Got to get back to bed now- the only time the headache is remotely tolerable is when I am lying flat.  I doubt I will be able to get on here for a while but I want to thank all of those people who sent me encouraging messages.  I haven't been able to read them all but the ones I read really made me feel good.  You ladies really are the best!

BTW, the jerk doctor that did the surgery LEFT FOR A 2 WEEK VACATION either right after he finished or the next day (but before I left the hospital).  Talk about a total asshole!  Who does that???  You know that website myprofessorsucks.com?  I think someone should do mydoctorsucks.com.  He may be wonderful with other patients but he has been nothing but a terror with me and people need to know these things!

Love you all and thank you for your amazing support,

Newsie

******************************************

Hi Ladies,

Thought I would let you know what is going on.  I am still having a tough recovery. 

The doc covering for my doc cancelled the blood patch procedure out of fear of making the back spasms worse.  That was a real blow. 

I went to the ER of a major Boston hospital 10 days after my surgery because my spinal headache hadn't improved at all, I was still having back spasms, the pump was stinging, and my pelvic/abdominal pain was worse than ever (hard to believe- the daily pain I live with is- I am told- the equivalent of what mid-term labor pains are like!).  They were SO nice- I'm not used to that!  However, they still couldn't get an IV in me and they would not give me nitrous oxide to put one in a horrible spot (they wanted to put one in my GROIN!!!).  They wanted to admit me for 3 days to give me fluids, IV pain meds (which work better than meds by mouth), and then determine whether or not to risk the blood patch.  Since they couldn't get an IV in me there really wasn't anything they could do for me there that I couldn't do at home (well, that my mom couldn't do for me at home- that woman is a saint, she really is) so I just went home, unhelped and further tortured by the many, many attempts to get an IV in (between the surgery and the ER both my arms are covered by bruises- there is literally more bruise tone than skin tone).

The next day the bonding broke off of one of my front teeth- I have been in so much pain for so long and when you are in that kind of pain you can't help but grit your teeth.  I have done this all my life at night and wear a night guard but this was something very, very different.  I now look like I am missing a tooth- fun.  I do have a dentist appt. on Monday to get that fixed though it will be very difficult to get out of the house to get there to do it.

As of today I have definitely improved though I am still in a great deal of pain.  The spinal headache cleared up on its own a couple of days after my ER visit.  I still have frequent headaches but we believe they are caused by tension and have nothing to do with my spine.

I don't have the muscle spasms as often but I do still have them.  My "regular" pain is still worse than ever and the pump still stings on a frequent basis.  I have also developed pain in the backs of my thighs, probably from not getting out of bed except to go to the bathroom and to write the occasional post or email.  My 90 year old grandmother is in better shape than I am.

I have an appt. with the doc that did this on Thursday- an appt. that I am equally dreading and looking forward to.  Dreading because my doc is such an asshole and because our last conversation went very, very badly.  I am looking forward to him increasing my pump since the higher med dose will help with the regular pain and the muscle spasms.  I am trying, however, to prepare myself for him to revel in his jerkishness and hold the pump over me and refuse to up the dose- it is exactly the kind of thing he would do. 

I said before that I believed this to be the biggest mistake of my life.  I still agree with myself.  I hope to prove myself wrong but I worry that the relationship I have to have with this doctor is going to make me crazy or something.  I am so fragile right now and, obviously, extremely depressed.  I have nightmares every time I sleep and when I am awake all I can do is think and I just keep dwelling on sad things even though I try to remember the good stuff.  I have had a truly wonderful life- higher highs than I ever dreamed of- and try to remember that if I can just get better I will have more high points... but most of the time it is hard because all I can see is more sickness, more hurt, more doctors/nurses/hospitals/needles for an endless amount of time to come. 

DH is still in GA and I am glad of that- I would hate for him to see me like this.  Sometimes I feel like my illness is harder on those around me than it is on me.  Seeing someone you love like this isn't easy and I am lucky in that I will forget much of what has happened.  The last time I was sick with this (it lasted for a year and a half) a lot of the same crap happened to me but, strangely, I have forgotten most of it.  It's weird- I know I had a terrible, terrible experience with a certain doctor that was very significant but I can't remember what happened.  Weird, huh?

So that's what is going on.  I swear, I write the world's longest posts but I know there are a couple of you who really do want to know and it is kind of helpful to me to be able to pour out my feelings like this.  Thanks to all of you who have continued to be supportive and wonderful, you can't possibly know how much it means to me.

Newsie

 


Message was edited by: newsjunkie

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Brooke051609 Posts : 723 Registered: 12/31/07
Re: NWR Update on my surgery
Posted: Jul 22, 2008 6:23 PM Go to message in response to: newsjunkie

  Oh Newsjunkie! I'm so sorry for all your pain and frustration! That totally sucks that your doctor left. Hopefully another nicer doctor can help you out. But I can give you some advice about the spinal headache! In high school I had a spinal tap and it leaked, so I ended up with a spinal headache too. Well the doctor that did it had only done like 3 before mine (great) so he hit a nerve in my spine cause the WORST pain I ever felt! Anyway, I know how you feel when you say you're headache is better when you lay on your back, but then your back KILLS! If you sit up, you're back feels slightly better, but your head is BEYOND excrutiating pain! NO FAIR! SO, I was on muscle relaxers so I could lay on my back without the back pain and still be OK with my head pain. Finally a week later they did the blood patch. It didn't hurt, I had a good doctor do it. They just take some blood IV (hopefully they find a vein on you! Ask for a good nurse!) then insert it where your spinal fluid is leaking. I'm not joking, I walked out of the hospital 1/2 later with NO headache! It's amazing!  So don't worry about the blood patch, it's a saving grace. I hope you get it soon, spinal headaches are the worst!

   I hope some relief and comfort comes to you soon! Demand a better doctor, you need to be treated better than that. Big Hugs to you! Keep us updated!!


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LochNessie Posts : 1,631 Registered: 4/2/07
Re: NWR Update on my surgery
Posted: Jul 22, 2008 8:32 PM Go to message in response to: Brooke051609

Newsie,

You had surgery the same day as my husband.  I am so sorry that your's did not go well and didn't give you the relief you were told to expect.  I hope they've given you SOME kind of pain killers to deal with this.  Can they put a painball in by the incision?  That's what they did with DH's surgery, and he said it helped a TON.  You probably know what it is, but it pumps pain meds right to the site of the surgery.

Anyway, I'm so sorry you're going through this. (And foot IV's suck! Be glad you weren't awake for that one.)

-Ness


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PharmToxGirl Posts : 5,446 Registered: 8/30/07
Re: NWR Update on my surgery
Posted: Jul 22, 2008 8:50 PM Go to message in response to: newsjunkie

Oh Newsie - I'm SO sorry!  You are definitely in my thoughts and I hope there is relief for you soon, maybe the other doc?!?!

Gentle hugs and love vibes are being sent your way. 


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Bride2008 Posts : 3,058 Registered: 3/28/06
Re: NWR Update on my surgery
Posted: Jul 22, 2008 10:24 PM Go to message in response to: newsjunkie

news  - I am so so sorry that the surgery didn't go as well as you hoped. If you like, I will come up to Mass and smack the doctor around a little. I can't believe he treats patients like that. I will keep you in my thoughts and hope that it does help your pain. Please keep us posted if you feel well enough.

 

"I came here tonight because when you realize you want to spend the rest of your life with somebody, you want the rest of your life to start as soon as possible." - Billy Crystal, When Harry met Sally 

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stargazer9 Posts : 448 Registered: 12/20/06
Re: NWR Update on my surgery
Posted: Jul 23, 2008 12:50 AM Go to message in response to: newsjunkie

Newsie I am so so sorry that you are in so much pain and have endured so much from this jerk of a doctor.  I hope for you and every other woman's sake that his mistreatment of patients is brought to light somehow and soon.

As for your pain I hope that you soon recover and can feel better in the near future.  And hopefully when all the dust settles from this procedure it's purpose will have been served, to help you deal with your condition and live a more normal life without pain.

Take care of yourself and know that we are thinking of you and hoping for you all the time.

HUGS


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ginmal Posts : 396 Registered: 1/11/08
Re: NWR Update on my surgery
Posted: Jul 23, 2008 10:21 AM Go to message in response to: stargazer9

Newsie..I am so sorry. That all sounds so horrific. I am so sorry that you are having to go through all this and are still in such terrible pain. And that doctor of yours should be ashamed of himself. Please take care, rest up, get better, and know that we are all thinking of you and missing you around here terribly!

Bless your own day, leave mine alone!Innocent

 

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kelleyiskelley Posts : 11,590 Registered: 7/2/06
Re: NWR Update on my surgery
Posted: Jul 23, 2008 10:36 AM Go to message in response to: ginmal

Okay. Thats it. When I come home to see my parents in August, my first stop will be that doctors office where I will pormptly punch him directly in the eye; as promised. And then I will LIE to him and tell him that if he likes; Ican knock him out for a whole week so he wont feel the pain. Then I will punch him 50more times and pull off his nut sac and then slap him in the face with it. And he better not be on vacation when I get there either. If he is, Im stowing away in his luggage where I shall pop out and slap him silly in themiddle of the airport. Jerk.

Get better Newsie. You do not deserve any of this crap and I cant beleive you are STILL going through all this after all of this time. You really desserve some relief and joy in your life right now, and I hope you get it soon. Keep your head up - you are one of the strongest people I have never met. You can do it. Miss you.


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BrideChica Posts : 2,300 Registered: 12/25/06
Re: NWR Update on my surgery
Posted: Jul 23, 2008 11:39 AM Go to message in response to: newsjunkie

WOW!  I can only imagine the pain that you are going thru! 

Know that you are thought of warmly and wished a quick recovery!


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MuffinB Posts : 778 Registered: 7/13/07
Re: NWR Update on my surgery
Posted: Jul 23, 2008 12:05 PM Go to message in response to: newsjunkie

Hi Newsie. Just wanted to wish you the best. You've been through so much and it's a shame that no one has been able to help you get better. I'm hoping this pain pump works for you so that you can finally live the life you want to live. Keep yourself strong.

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MrsHF Posts : 368 Registered: 10/12/07
Re: NWR Update on my surgery
Posted: Jul 23, 2008 12:55 PM Go to message in response to: newsjunkie

Oh Newsie, I can't even begin to tell you how sorry I am that you are going through this.  You have been through so much, I just hope that it is just taking a bit of time for it all to start kicking in. 

I don't even have words to express what I am feeling about that jerk who calls himself a doctor.  Well I do, but I really shouldn't say them.  Ugh, that makes me so mad, there must be some place that you can report him.

Keep your chin up and I hope you start feeling better soon!


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MsDenuninani Posts : 3,962 Registered: 3/16/07
Re: NWR Update on my surgery
Posted: Jul 23, 2008 1:05 PM Go to message in response to: newsjunkie

Oh, Newsie, no one should have to go through all this. I wish you only the best.

My fave doctor joke:  What's the difference between Doctors and God? 

God doesn't think he's a doctor.


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NewMrsSass Posts : 722 Registered: 12/31/06
Re: NWR Update on my surgery
Posted: Jul 23, 2008 6:19 PM Go to message in response to: newsjunkie

Oh Newsie, I am so sorry.  I don't even know what to say.  I never thought it was possible that one person could go through so much pain...especially someone so young (and nice at that)!  My mom said she got a spinal headache from her one C-section and only felt better lying flat.  Of course, hers was gone in 24 hours...I don't think it's normal for yours to last so long (not that any of what happens to you seems normal).  I can't even tell you how bad I feel for you.  You are so strong to still be sane, let alone your abilities to be helpful and funny here...I know I could never do it.  Good luck, and I hope you feel at least a little better soon.  One day at a time.

formerly SoonToBeSassano

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PharmToxGirl Posts : 5,446 Registered: 8/30/07
Re: NWR Update on my surgery- NEW Another Update 2.5 weeks after surgery
Posted: Aug 3, 2008 3:02 PM Go to message in response to: newsjunkie

I'm glad that things are better, but it still sounds BAD!  I'm thinking of you and wish I could help in some way!!!

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Nalamienea Posts : 2,924 Registered: 6/13/08
Re: NWR Update on my surgery- NEW Another Update 2.5 weeks after surgery
Posted: Aug 3, 2008 4:46 PM Go to message in response to: PharmToxGirl

All that you have been through sounds SO terrible! What kind of disease does this to a person?

And did you make it to your dentist appointment?  I hope you have managed to get that fixed, even if other things can't be fixed.  Sometimes it's easier knowing that you have a little bit of power.

Try to stay positive, things will get better. <much gentle hugs> Oh, and your mom get's "Mom of the Year" award. :) 


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