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Author Topic: Please help. I am losing my desire to live!!!  (Read 1877 times)

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Offline nursedeb

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Please help. I am losing my desire to live!!!
« on: September 05, 2011, 01:05:18 AM »
A very brief summary:
In April 2010, I went in for what I was told was a meniscus repair. I woke up with an osteochondral defect and microfracture. I followed the rehab religiously and was non wt brg for 8 weeks. I returned to work on limited weight brg for another month. Since the wt brg restictions were lifted, I have not had one day without pain. In fact, my pain is ten times worse than before the surgery. I have stiffness every morning. I cant work out due to pain. About two months ago, I had Synvisc injections with limited relief. I have been told by the original surgeon that the defect filled in about 95%, and he cant understand why I have some much pain. He certainly would not  "operate on me again". Ive been told by two other surgeons, that the surgery definitely didnt work. One wants to do OATS and other Carticell/ACI. I can't imagine going through another surgery that comes with all those weight bearing restrictions, especially when the first one apparently didnt work. And, from the research that Ive gathered, the success rate for OATS or ACI is about the same as microfracture. Either way, if either surgery worked, it only buys me maybe 10 years before I will need a PKR anyway.

I am severly depressed. I have lost my desire to live and my joy for life. Every day is a struggle. I dont want to get out of bed in the morning. I have isolated myself from my family, friends, and will probably lose my boyfriend too. I am tired of feeling this way, and of burdening everyone else. I just want some answers. I am sick of people saying, "oh, youre way too young for a knee replacement". I swear, the next person that tells me that I will smack them.


I have been looking into PRP (platelet) injections, and even stem cell injections. I have recently started wearing my unloader brace again, and it does offer considerable relief. But I can't imagine having to wear this brace for the rest of my life. I am scheduled to try the PRP injections in October 2011. If that doesnt help, I am going to try stem cell. I can only afford to try it once, as it cost about $3000.00 (US). I live in Tampa. Florida. If neither PRP or stem cell works, then I feel that the only choice I have left is a partial knee replacement. I have done some research, and apparently the Oxford is supposed to be the best as far as longevity. I'm also considering makoplasty. Not sure if they do this in the UK.
I am really sorry to sound so negative, but I honestly feel like I am at my wits end. I just don't undrstand why I have soooooo much more pain AFTER microfracture than before. It just doesnt make sense to me.

Does anyone have any suggestions, or any comments that might help me to see the light at then end of the tunnel.

Thanks,
Debbie
« Last Edit: September 05, 2011, 04:02:40 AM by nursedeb »

Offline dm

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Re: Please help. I am losing my desire to live!!!
« Reply #1 on: September 05, 2011, 05:40:03 AM »
I'm sorry you feel so badly. First, I'd suggest seeking some help for the depression, it's real, and it's not going to go away magically, even with a PKR done tomorrow. Secondly, get some realistic evaluation of your pain management done. Pain levels affect your mood, hence your depression. How are you managing your pain? Meds, ice, heat, anesthetic patches, topical nsaids, tens, etc? Multimodal approaches to pain managment of injury induced osteoarthritis are more effective than just meds alone. And yes, even physical therapy exercises done at home. If the large muscle groups get too weak, the pain levels get worse. Painful to do the exercises in some ways, even worse to not do them....

I'm a failed mfx pt in your area, I just had bad luck and mine didn't heal although the procedure was done correctly, and I was entirely nwb for 2 months, and I was excruciatingly careful to not have any slips. My pain levels are tolerable given that the hole in my femur is in a weight bearing area and is the size of a shirt button, and I refuse to take 4 months+ off work on a new job to have a graft procedure which may or may not work, and the doc says he might not even be able to do because of the size of the hole, and is only a time-buyer anyway. I've already had 6 surgeries on my knee in 10 yrs, and am thinking hard about my options too. When I think that the average recovery from a TKR is 8 weeks, vs 4-6 months for a graft thats just temp anyway, I'm leaning towards pushing for seeing why they won't just do the TKR. I think getting the insurance to pay is part of it, so - they'd have to go for pre-approval and show the history and that playing around with intermediary procedures is a waste of time and money, and pain and misery for me.

I do think the difference between you and I, as is, is my approach to pain and how I deal with it. I'm not quite 40, and I refuse to let my knee rule my life. I have had unloader braces since about 2005..... I'm on my second G2 Select, and I'm of the firm opinion that Donjoy's Oadjuster is scrap metal and should never have been made - either that or it should have a big warning on it to not use for short stocky people! I use a multimodal approach to managing my pain, and I refuse to live on painkillers... so other things have to come into play. Steroid/anesthetic injections a couple times a year suck rocks... but they drag down the inflammation when nothing else will... but they can't be given more than every 3-4 months. I like that my doc puts the anesthetic with the steroids.... it don't kill so bad to get the shot those first few hours after when the stuff works its way around in there.

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 nursedeb

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Re: Please help. I am losing my desire to live!!!
« Reply #2 on: September 05, 2011, 06:55:34 PM »
Im actually only 43, so Im young as well. Which makes it all the more frustrating. I understand what you mean about going through all that rehab for a procedure (graft) that may not work, and only buys you some time. From the research that I have done, OATS/ACI/Microfracture all have about the same success rate. I'm definitely going to give PRP a try, and then most likely Stem Cell. Even if I dont get 100% healing, any healing and pain relief would be an improvement.
So, you said you are in my area. Is that Tampa? Also, just curious. Do you have more pain after the microfracture than before the surgery? That's my problem. I only had flare ups from time to time. Now I have pain every freakin day. I just cant seem to wrap my head around that!

Offline dm

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Re: Please help. I am losing my desire to live!!!
« Reply #3 on: September 06, 2011, 12:03:59 AM »
Another difference - I've been in some degree of pain every day for a couple years now. It's been pretty constant and worse, since my latest injury July 2010, when I fell and tore stuff up, which is also when I knocked the chunk out of my articular cartilage. I walked on it, including PT, for 3 months, before they decided that surgery was a necessity, as the MRI only showed the partial acl tear as questionable, not certain, and it didn't show the additional medial meniscus tear to what's left of my medial meniscus (only got about 10-15% on that side) and I also tore my previously intact lateral meniscus.

Imagine my pain levels when asked to do PT on all that undiscovered wreckage - and the lack of progress that ensued, as I of course would not do things that hurt more, as I was in significant pain already.

Then you throw in that they do the surgery - then discover the wreckage in my knee - a 30 min arthroscopy for an acl repair/replacement that I went in for turned into nearly an hour and a half arthroscopy to repair my acl, trim up both medial and lateral meniscus, and do microfracture to a nearly 1cm defect in the weight zone dead in the middle of my femur on the medial side. NOW you wanna talk pain - I woke up wishing I hadn't, until they shoved enough fentanyl up my veins to take the edge off. Ended up on some significant painkillers going home - about 2 or 3 steps below oxycontin in the scale of things.

now - 11 months after the surgery, I'm still in some pain every day, but the level varies from tolerable annoyance like a headache, to darn near crippling, depending on how much I'm on it. It also swells proportionately depending on how much inflammation is going on, and how much pain I'm in. I had so much damage before the surgery, that I have to say that I'm better because so much was wrong, but not better because walking a lot feels like someone is sticking a sharp object in my knee.

Like I said, I use multimodal pain control, depending where my pain's at, so I can deal with it, and not let it rule me. And yes, since it was determined my microfracture failed in May, I wear my unloader brace daily, except for a day here and there to give my skin a break. The unloader helps, local anesthetic patches help, tens helps, painkillers help when I need them, ice helps, sometimes a good hot shower helps, sometimes combinations of ice and tens, unloader and anesthetic patches, ice and elevating etc.

Yeah, I'm in the Tampa bay area, I'm to the west in Pinellas, have been here long enough to raise a kid who just turned 18.

I've been seeing the same doc for 10 yrs, he's done 5 of my 6 ops on my knee, plus 2 on my hand/wrists, keeps doing a good job patching me up. He's conservative in his approaches, and doesn't like doing anything radical. However, in this case, I'm about ready to argue with him the logic of putting me through yet another procedure that could go the same route as the last one, and given my situation, recovery times are an issue to consider.

I feel for you. Seems like we've some common ground here with the knee stuff, with mfx, age similarity, etc, even if how we ended up this way differs.
Donna
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 marco4432

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Re: Please help. I am losing my desire to live!!!
« Reply #4 on: December 25, 2012, 09:20:19 PM »
Welcome to the I am losing my desire to live!!! club.

I joined 2 & a half years ago after a simple knee scope, Doc said would be back to work in ten days, four surgerys later, Knee pain constant 10 when I work 12, take every opiod in the market nothing helps I'm 48 now have found a Dr who will perform a TKR but his words were there are no promises that it will cure the pain, I had a heart attack one month ago, I think due to chronic pain now I'm unsure if surgeon will still be willing to perform surgery.

i really hope you find a way and if you do let me know before I completely lose my mind.

I see only posts that complain about outcomes from surgerys, Where are the posts from people that have had any success  ???


Marco
R Knee Arthospic  06/01/2010, partial lateral menisectomy synvisc injections
Start of dibilitating pain after operation
Ri knee Arthosopic Meniscus tear 03/13/11
partial lateral menisectomy synvisc
 Nerve Surgery09/15/2011Right knee
12/23/11 CT scan nerve block
02/29/12 2nd failed nerve surgery

Offline RLE

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Re: Please help. I am losing my desire to live!!!
« Reply #5 on: December 26, 2012, 02:39:00 AM »
Do you read this board regularly? If so, you'll see plenty of success stories. I was in your shoes last summer. I don't want to post deeply personal things on here but I was there, in a very bad place and I had no more hope after seeing surgeon after surgeon. Then I found the right surgeon and he fixed me the best he could. I'm still recovering but I'm far better than I was. Look on here for a list of good surgeons in your area or good surgeons that you could travel to and don't hesitate to ask questions both on the boards and through pm's.
Accident 2011: permanent dislocation, hole under the patella, bone fragments/debris embedded, scar tissue, 3 torn ligaments, fracture, cartilage sheared off, contracture,
2011 MUA
PT on-going
2012 MPFL reconstruction,TTT
        TTT
        Lateral lengthenin
        Arthroscopy/clean out
Thx Dr. T

Offline captainruss

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Re: Please help. I am losing my desire to live!!!
« Reply #6 on: December 26, 2012, 03:05:17 AM »
Hey Marco and Deb,

The people who have successful procedures are out enjoying life and have no reason to look up solutions and educate themselves about different complications and alternatives.  The honest answer is I have no patience for those in the majority who have had successful outcomes as there is no logical reason why mine suffered failure.  I have had eight (8) failed TKR's with three (3) OS's and I am in much worse shape now than prior to my first TKR.  The TKR is not the ultimate solution....despite the fact that the majority are successful.  Heck, I have seen 80 year old women who have both knees done with a TKR and no problems.

As for not wanting to live......I visited that dark path on several instances.  The answer for me was my suffering has allowed me to learn about knee's and treatments so that my 15 year old daughter will not end up as I am and have a successful outcome.  If I had not come to Knee Guru, I would have allowed my OS to do a LR on her....she would have most likely suffered a bad outcome and I would have been forced to listen to the voices in my head....stop the voices....stop the voices....you are all my witnesses to the voices!!!!!

I did play Russian Roulette with my Black Lab a couple of times.....but her lack of an opposable thumb kept causing her to cheat (her story) and I was afraid she would win two or three times in a row!!!  

I am currently given the only option of having my knee fused.....which is not an option as my gait is tearing my lower back and hip out.  Soooooo....after my 15 year old gets surgery I will seek alternatives.  I am honestly looking into an above the knee amputation with a motorized knee and ankle (prosthetic) from the Ossur Company out of Sweden!

I just completed my third (3rd) Semester back to College with five A's and one B.  First two semesters were not as successful as my oxycontin soaked brain has taken nearly two years to recover......too many years of opoids and inactivity.  I am living off the financial aid and keeping my mind busy as all three of my teenagers are also taking full time College Classes along with my wife and myself so we keep busy.  The only one not taking College Courses is the dog....she just takes the CLEP tests after studying with me!

Please.....I try to concentrate on being homicidal....not suicidal.  Save a Knee Geek.....whack a politician or bad person....not yourself!!!

I seriously believe everyone who has complications should be getting therapy for depression and frustration.  They have great anti-depressants and anxiety medications out there.  By all means pour out your heart here as this is the one place that has people who have experienced exactly what you are going thru.  I really get hostile when a doctor tells me "I know how much you are suffering!!" .........and I have to ask him to show me the scars from his previous surgeries that give him the insight to understand what I am going thru....I also ask him how many years he has been out of work or how much is left in his retirement fund after trying to get three teenagers thru college classes.  

I know you are going thru hell.....but understand there ARE good surgeons out there.  There are not very many, but there are some.  I am in the St. Petersburg area (Tampa) also.  I have not found one (1) doctor in Florida so far that understands that AF does not stand for Alien Football!!  I am going to try UF at Shands and the Florida Mayo Clinic after my daughter gets her surgery.

If I can do anything to assist...let me know!

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline captainruss

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Re: Please help. I am losing my desire to live!!!
« Reply #7 on: December 26, 2012, 03:09:58 AM »
RLE,

That is absolutely correct!!!  You were very frustrated and the world famous Dr. T came to the rescue and gave you hope and a great outcome!

I have also heard success stories from patients of Dr. Mark on this site!!!  They all started in the "screwed up" by another doctor category but have found successful outcomes!

Also great stories about Dr. Frank Noyes in Cincinnati.....Dr. Steadman in Vail Colarado and many more!

Yes, there are complications and frustration but there are also a few outstanding surgeons out there who are giving some of us basket cases hope!

I have high hopes for my daughter Kiani or I would not agree to the procedure!

Merry Christmas everybody!!

You have only failed if you give up!  I must cling to the belief there is always another path to take!  Thanks to so many wonderful KG's here....so many too numerous to mention....starting with our fearless leader....the Administrator Sheila....the fountain of information (Missmyknee)....and dozens more.....we always have hope!

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?















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