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Author Topic: Close to suicide  (Read 8600 times)

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Offline captainruss

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Re: Close to suicide
« Reply #30 on: February 15, 2012, 03:29:37 AM »
I understand...the pain when I try to walk.  Everyone looks at you like you are crazy.  I feel like a whiner.  I feel that I appear weak, yet I have never taken time off in my life.

It really gets tough sometimes.
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 starpolisher

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Re: Close to suicide
« Reply #31 on: February 15, 2012, 09:13:19 PM »
Captain Russ,
Amputation?  You know I always figured if anyone tried that, just think of the scar tissue that would form because bone would be cut!  What about the b2005 one above the amputation?  It doesn't make sense.  I have heard there is phantom pain with amputation.  I tried something called an "elite seat" which Dr. Shelbourne in Indiana had developed with a patient who was an engineer.  It helped straighten my legs to a certain extent and there was some pain improvement, but then we hit a brick road.  When they tried to do exercises (various bikes) to bend my knees, I would lose the progress from the elite seat and was finally told they couldn't see me anymore...nothing left to do.  They did suggest I call the Vail Clinic and ask and they requested my xrays.  Then they called and said they couldn't arthroscopically remove my scar tissue with implants....only without.  They were afraid of making the scar tissue worse, causing infection, or damaging my implants (which are long revisions in both legs).  My pt who does my astym (best pain relief I have had though I am still disabled but I CAN do more!) is now going to try to get my legs straighter.  A rep from Dynasplint was in today to see if the one that improves extension would help me.  There is no way I'm wearing them (since I need two) for 6 to 8 hours at a time!  I could never sleep.  I had tried their flex equipment in 2005 and was in agony!  Everything hurt!  And this was only four months after my first double tkr.  I felt as if I were being tortured.  I wish they could find a method to soften scar tissue!  I do about an hour's worth of knee exercises a day to try to remain as pliable as possible.  I think if you have RSD or other complications, Astym won't help......but for straightforward AF, it really provides enormous pain relief in me.  I was able to cut back on my morphine!  If you have never taken time off of your life, you are one courageous person, captainruss.  I couldn't do it!  I lost my cartilage not from arthritis or an injury but years ago had Graves Disease (in my early 20's ) and a side effect was developing a lot of fluid in both my knees.  The internist sent me to an orthopedic who would drain my knees and inject them with cortisone.  No sooner would I leave his office and the knees would fill up with fluid again.  He drained and injected so much cortisone over a period of months and the cortisone really destroyed my cartilage over time.  My knees creaked from then on and, in my 50's, had to have the double tkr.  I think I have avoided complications because I have not had the amount of surgeries as so many seem to have had.  A total of 5 on 2 knees...3 on one and 2 on the other.   

Offline captainruss

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Re: Close to suicide
« Reply #32 on: February 16, 2012, 12:42:04 AM »
Star,

The sad part is I had zero AF 2 years ago.  I did not have a knee cap from age 17 and endured bone on bone, but I was working every day as a lead Captain.  Basically, they hire us for our mechanical knowledge and we get to drive the boat twice a day (dinner and lunch cruises).  I spent the rest of my 12 hours a day working on the boat/management/hiring/firing/  etc.  I had 6 wks of vacation saved up so I let them do a TKR 2 years ago....6 wks off work and no more pain for the next 10 years or so the brochure promised.

I was swollen and hot a week after surgery.  MUA...multiple TKR's with 3 OS because they thought I was infected despite not 1 of 100 or so cultures not growing.  My last OS after I brought him info for THIS site finally agreed it was not infection and put my knee back together.  The scar tissue was so thick he had to go back in for open surgery to cut it out because of the implants. 

He thought that the scar tissue grows because I was not doing aggressive PT right after surgery so I was on a CPM in the recovery room and doing PT with staples still in my knee the day I was released from the hospital.  50 aggressive PT sessions and now I have bone growth in the scar tissue.

I don't like the thought of asking my wife to cuddle up to my stumpy leg, not that I am much fun anymore as it is.  I HAVE to find a way to get to work.  I can't live on disability and I can't put my 3 kids through college on disability.  At least with amputation I would be back to work in 6 months to a year.  I can't find anyone that tells me they have been cured from AF.

I am going to make a patient out of the next OS that tells me I need to live like this.  I am 48 years old.  My wife and I planned to travel across the planet after the kids are out of college.  I have spent our savings and 401k in the last 2 years.  I now can't stand the pain, limp around like a crippled grouch, have no funds to travel to Dr. Noyes or Dr. Woltjys, and no money to get second opinions.

Aliens captured all of the AF specialists in Florida as we have NONE!  Sorry about the diatribe....but not my day to beat the dog (she usually does not mind) so I am a little stressed!

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 starpolisher

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Re: Close to suicide
« Reply #33 on: February 16, 2012, 03:19:09 AM »
Russ,
I was doing PT after 5 days in the hospital after my first operation (double tkr) and had to stand the very next day.....OUCH!  Childbirth is a walk in the park.  I went to rehab hospitals after every surgery and had to do lots of pt with staples in me as well.  It's not the staples that hurt.....it's the darned healing and then our having AF......I was always the flunkie in the rehab and some of those PT's were NOT very nice.  some made me feel as if I weren't trying hard enough!  I got lectures!  I have panic disorder (runs in my family) and one of my symptoms is my skin feels like it's on fire.  After the first surgery (the double tkr), the pain was so horrific, I could not sleep more than 2 hours a night!  Ambien did nothing......They finally had me laying on bags of ice for the burning pain.  Panic disorder runs in my family.  I have had health problems my entire life....as does my son.  But I hope and pray that he won't have all the other complications I developed.  He sure as heck won't have any tkr's!  He's been too sick to do athletics since 7th grade and before that he had very bad allergies which (with the exception of food allergies) limited him until the steroid inhalers came out.  His panic disorder hit at age 13 and he stopped growing!  He was 5'5" at that age and never grew an inch after that.  He matured, but didn't grow.  He's had a very rough life for a kid.....and yet he's a genius....169 IQ.  None of my brothers got it but my Dad had a more minor case of it though his Dad developed a severe case and his Dad also died early.  It's iin our DNA.....while our panic attacks are controlled, there are so many other complications involved that few doctors know about.  It's amazing how little doctors know!!!  Hey, you can rant and rave all you want......you need to get it out of your system.  Honestly, prayer really does help me.....speaking of which....I should do that now before I fall asleep.  God bless you and everyone with AF and please God, let someone find a cure!

Offline Rennschnecke

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Re: Close to suicide
« Reply #34 on: February 16, 2012, 01:43:48 PM »
Hi Russ,

It is possible to overcome AF but it really depends on how it was caused.  I managed to get full ROM back, but I think that my scarring was due to over-enthusiastic rehab post-op.  However, I can't think of much to handle my neuromas.

If you have primary AF then there is very little you can do and although Drs can classify it, they don't seem to understand it well enough to treat.  Research into the causes of this are still underway so a reliable cure is not even on the horizon yet.

I've tried Vitalzym to see if it would help.  Maybe it did, maybe it didn't.  It's been hard to tel as I did have pretty much full ROM so any changes since then may have been due to the supplement or may have been part of the natural process of recovery.  I worked out how much to take and the duration for scar tissue and stopped after the supply ran out at least 3 months after starting.  The only difference I can discern is my digestive system is more delicate.  I used to be able to eat anything with Vitalzym, but now have stomach cramps with cold cereals ...

The despair you're feeling is normal.  There is the weight of expectation and the knowledge that you're limited in what you can honestly commit to, then there is the fear of the future.

I'm not sure whether amputation is a solution – as Starpolisher says, there is the phenomenon of 'phantom limb' pain.  Ideally you need good counselling about the options so that you can make a decision you won't later regret.

To save the dog, have you thought of getting a speed ball? ;)
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline captainruss

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Re: Close to suicide
« Reply #35 on: February 16, 2012, 06:40:21 PM »
LOL....

The dog is a long story.  My wife teaches taekwondo and has a school.  We had a student bring a box of puppies.  I said NO to the mutts every day, but I had a doctors appointment on a Friday and the smallest, noisiest runt of the litter ended up at my house.....tells you who runs our domain after 25 years!  Anyway, she cried incessantly and has separation anxiety....would literally eat a piece of furniture if we left her home too long.....she was hit by a car and I was going to shoot her...I thought she had internal bleeding....Sissy Russ could not do it and $1000 later her separated shoulder and broken jaw were fixed.  She had to wear a pink cast for 8 wks...so I had to carry her outside 4 times a day to potty and feed her liquids for the broken jaw...needless to say....even after surgery when she needs to go out at night, the only one she comes to is me.  I hobble out of bed and take her out. 

She is so funny....she leaves me alone the first week I am home...but after that she follows me from room to room....sits on a chair next to me at dinner.

I don't beat the dog....but somehow I don't think she would complain.  The other three females (wife and 2 daughters) are 2nd degree black belts.
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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