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Author Topic: Can't stand the pain anymore  (Read 10310 times)

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Offline Lana1

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Re: Can't stand the pain anymore
« Reply #15 on: November 28, 2012, 08:41:28 PM »
I am in such pain :(

Offline newyorkcityknees

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Re: Can't stand the pain anymore
« Reply #16 on: November 28, 2012, 09:25:21 PM »
Lana1, thanks for the good thoughts.  If it were not for the issues with my teeth, I think I would have settled on a surgeon and given it a try, I can't imagine it being worse.  My total knee replacement was done in 2001, so I have eleven years on it -+my x-rays show a loose tibial component.  As a matter of fact I had a date sheduled for a revision about six months ago but could not get the dental clearence I needed, so it was really a matter of not having a surgeon I felt I could work with.  As soon as the holidays are over I am going to see a surgeon at The Hospital For Special Surgery, they are rated number one in the United States for orthopedic surgery.  The infectious disease doctor who would clear me suggested two doctors who operate from that hospital.  I would hae gone last month, but as I said Herricane Sandy and the flood it caused shut down two major hospitals in Manhattan, one connected to The Hospital for Special Surgery.  Nearly eight hundred patients had to be moved from the two facilities to other hospitals in New YOrk City, the overload caused the hospitals that took these displaced patients to cancel all but the most critical surgery, unless I had an infected prothesis on my total knee, I could not get scheduled.  From what the press reports, at least one the the Hospitals will be up and running again right after the first of the year.
We all know how hard it is to get the atention of busy high reputation surgeons, in my case I have to have the orthopedic surgeon speaking to both the ionfectious disease doctor, my neuro surgeon and the oral surgeon and anesthesia doc, need I say more so right now it is simply a matter of wait and see what happens after the first of the year when I can get an apointment at TheHospital for Special Surgery, between now and then I will have one more tooth extracted so I will have at least a little progress.  So long as I am careful the morphine can take my pain froman 8 or 9 down to a 5 or 6 part of the day, it usually is worst after three or four in the afternoon and escalated till I take my night time dose of seventy five mg morphine extended relief so I can get about six hours sleep.
The only other option is a very local doctor who just added a new surgeon fresh from a fellowship.  Here in New York City we have hospitals serving different areas of the city and the big teaching facilities in Manhattan.  There is a local hospital less than two miles from my apartment.  They have only 85 beds and no teaching doctors.  A local doctor, the only orthopedic surgeon at the hospital close by would not take my case a year ago because he said he felt I was too opiate dependent.  I understand from word of mouth that his new partneri very agressive and excellent, and I think from what I hear he may be willing to take my case.  The only problem is that the local hospital does not have any neuro surgeon, or cardiologist on staff, just a few surgeons and some general hospitalists, who are really primary care physicians covering the florrs.  If anything out of the ordinary came up I would have to be transferred to a larger Hospital, since I have the brain hemorrhage and some kidney issues I really do not feel safe going to the small local facility with virtually no medical back up, and have to be at the mercy of a transfer by ambulance if any complicatioins arose.  Soooo, right now it is continued pain management and the focus on making the holidays as m,uch fun for my children and grand children the focus on the knee early next year.  Thanks ands God bless.
New York City Knees

Offline Lana1

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Re: Can't stand the pain anymore
« Reply #17 on: January 21, 2013, 11:18:07 AM »
I had enough I am afraid, I am not getting any better, last few days were awful. Swelling post op doesn't improve, I am worse off 6 weeks post op :( :( I am crying my eyes out last few days. Nobody can help me. I am scared.
« Last Edit: January 21, 2013, 11:20:29 AM by Lana1 »

Offline dm

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Re: Can't stand the pain anymore
« Reply #18 on: January 22, 2013, 03:28:43 AM »
you need to have a direct discussion with your doctor about what's going on. explain what your pain is like, where, when and how it occurs and worsens, discuss the concerns you have with the swelling, etc.

Make a list of your questions and have a discussion of what was done, and what the prognosis is. You need to understand fully what was the problems he found, what did he do about them, and what is the recovery plan, including therapy, etc, so that you can understand what the doctor feels is or is not normal about your stage of recovery at this point in time.

That is what you can also address... is this where you are now, expected or not? If not, what are they gonna do about it, cuz you can't keep on like it is, and explain why. Not just emotional, but the physical, reasons for why what is going on has to change.

sad fact, but if you can keep from crying while in there, and take a friend with you, you are likely to get better results than if you go alone and go in there bawling. show some of how you feel... but don't blow a gasket if you can help it... I've seen people do that and the docs often seem to tune out when that happens, especially if they're not real "people person" types to start with, if you know what I mean.
multiple arthroscopies 2/00,3/01,6/01,1/03, 12/07,10/10. chondromalacia, severe medial joint space narrowing following 3 partial menisectomies, chronic pain problems, kneecap problems, OCD lesion, failed mfx.

Offline Lana1

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Re: Can't stand the pain anymore
« Reply #19 on: January 23, 2013, 02:32:34 PM »
Dm, thank you :)
Been to GP yesterday, whatever I say doesn't bother her, I have a fever again, probably it's an infection I have. She wasn't bothered. So I wrote the complain to GP, but won't send it yet, see what happens when I talk to OS tomorrow. My husband is coming with me.
OS referred me to the pain clinic a while ago, still waiting.
Told him the swelling doesn't let me do exercises, said keep taking antiinflammatories, they make me so sick. Do they do anti inflammatories as injections in the uk?
The only exercise I can do is heel slides and it's 6,5 weeks post op.
Talked to the Horder centre's physio today, he said he could try pain reducing techniques as laser or ultrasound. At last something. Hope it will help.

Offline Lana1

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Re: Can't stand the pain anymore
« Reply #20 on: February 06, 2013, 10:57:16 AM »
It's been 2 months now since the op and no improvement, constant agonising pain and yesterday I've been told I have CRPS. My knee is purple red. I could give anything now to have my old knee back with the pain pre op. Why did I decide to have a surgery.. I had a good knee, no swelling to stiffness just some pain.. Which could've been helped with antiinflammatories, I've been taking them for 3 weeks now and my other knee is much better now..
I decided I want to leave this world, I really don't want to, but don't want to be in agonising pain either. I am so sad I'll be leaving my parents, husband and cat, I love them very much :( why is the life so cruel :(

Offline Brambledog

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Re: Can't stand the pain anymore
« Reply #21 on: February 06, 2013, 11:33:15 AM »
Lana, I'm so sorry you got the diagnosis of CRPS. I completely understand everything you've said, but don't give up. You will have bad patches like this where things see hopeless, but also better patches where things seem possible again and you can live life. I'm stuck at the moment in bed with my knee horribly swollen and painful, and I really do understand.

Don't let it beat you Lana. Life can still be lived even with this thing. You do come through that awful initial hopeless phase and learn to cope. Never give up. I'm here if you need me.

(((((Hugs)))))

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Mistyd

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Re: Can't stand the pain anymore
« Reply #22 on: February 06, 2013, 04:49:17 PM »
Lana,

First, let me tell you how sorry I am that you hurt so bad and have been suffering for these past 2 months. I am praying for you (and God DOES HEAL!).

Second, I would like to share a little of my back story.... I am 39 yrs old and have had a hysterectomy at 25, fasciotomies (surgeries where they lay the whole limb wide open) on my left arm 4x (which is medically unheard of) and still suffer from repetitive acute compartment syndrome of the left arm (8 surgeries total with many times 'opting out' of the same surgery when the arm swells so bad the skin splits). I have had 2 debridment scopes of my left knee along with harvesting of cartilage (2/4/13) for an upcoming ACI surgery of that same knee (left).  My right knee also has a cyst and some torn cartilage and I am praying will not need surgery also  ::) ;).

I say these things not to say that my pain is bigger or worse IT IS NOT!  Just to say honestly, that I do understand chronic pain (I have had it since 2002 with my arm) and how it can wreak havoc with your emotions, life, and desire to live.  The truth is, things do change.  I do still suffer chronic pain, however, my body has adapted, my pain threshhold (which was high to start off with) has become higher, meds have been given to help keep it under control, I have learned (after much depression, frustration, and practice) to focus on things that help others. Little things like my dogs funny habits, a beautiful sunrise, sunset, just the ability to get up and do something that someone else can't do (many are wheelchair bound, bed bound, have lost limbs, have pains in the back or neck or head or abdomen that keep them from doing soooo much more than me - and believe me, at 39, needing to have someone cut up my meat because my arm is useless is embarrasing  :-[ ;)).  Focusing on these things and praising God for what I have, has made my life so much easier to cope with.... I actually enjoy living!  Something I never thought I would say again!

I am a very athletic person, horse trainer (at least was...still attempt to at times, but teach still) and to be limited in the very things I love.... very hard to deal with.  Depression slips up fast, it robs you of the joy of living, all you can do is see the dark void, feel the life being sucked out of you, and feel the weight of life rather than the hope.  Honey, I am so sorry you are going through this!!!!  PLEASE, KNOW THAT THINGS CHANGE!!!  SOMETIMES RATHER QUICKLY FOR THE BETTER!  You won't be able to know this if you take your life.... but your husband, family, friends, and yes your cat, will all be left with guilt, remorse, anger that you stole your life from them when things would have changed for the better.  AND THEY WILL!!!

Lana, life is short to start off with... God has given us an opportunity to learn, grow, become all that we can be for others and Him.  Yes, life does throw some monkey wrenches into our plans :o, but that can also help us to appreciate the good times that much more. It also can help us to lean on Him, family and friends, develop stronger bonds, and help us to have empathy, sympathy and help others who may go through something as difficult as what you are going through right now.  Try to see that this difficult time is only for awhile.... IT WILL CHANGE, YOU WILL COME THROUGH IT AND BE BETTER!  Depression blinds you from hope and the ability to see outcomes other than the morbid and painful.  And there are other outcomes!  Talk to your husband about what you are feeling, tell your dr where you are at.  Both of them can help you be it a shoulder to cry on and support, meds to aid in pain, diagnostic expedience for why your pain is so bad, etc.  To end your life at 2 mos. post op (let alone at any time) is a shame and a waste. YOU ARE WORTH SOOOOOOO MUCH MORE!!!!  YOU MAKE A DIFFERENCE WHETHER YOU KNOW IT OR NOT!!

Please talk to someone Lana. I am praying for you  :) <<hug>>


God Bless and heal you,

Misty
Living for the Audience of ONE: Jesus Christ

'95 -knee injury
5-'04 -knee scope cleaned up grade III tears
12-'12-knee scope cleaned up tears
2-'13-harvested cartilage for upcoming ACI
...awaiting ACI

Offline The KNEEguru

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Re: Can't stand the pain anymore
« Reply #23 on: February 07, 2013, 09:28:04 AM »
The Horder Centre referral sounds of potential benefit to you. Although CRPS can be incredibly distressing, you are still in a relatively early phase of rehab and should respond well to diligent physiotherapy and pain management, and they seem to offer both these.
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Offline The KNEEguru

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Re: Can't stand the pain anymore
« Reply #24 on: February 07, 2013, 09:59:55 AM »
This paper by Dr Karen Rodham from Bath, talks about an inpatient programme there, but also gives useful advice for getting through difficult days.
http://staff.bath.ac.uk/psskr/patient%20leaflet%20version%201.pdf
There are contact details at the end if you want to make contact and ask about services nearer to you.
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