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Offline rmholts

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Cant stop crying
« on: March 02, 2012, 04:57:29 AM »
Ok, I've been having problems with my knee for my whole life, dislocations, chrondomalacia, chronic pain, sub lux, you name it. I've even got the beginnings of arthritis in my right knee. My first doctor was a total jerk and wouldnt listen. My new ortho was/is amazing. He listened, he identified the problem (severe knee instability) and came up with a course of action. Then, less than 48 hours to my surgery (Fulkerson TTT), he canceled it until after I got a CT scan on both my legs. This came after consulting with Fulkerson himself and sharing all my case info and xrays/mris to date. I got the CT scan done, and today I got the results.... and it was the worst case senario. A TTT wouldn't help me, nothing that they could do at that facility can help me. The problem is I am severely knock-kneed and because of that, its screwing up my knees, leading to all the problems mentioned above. I'm 24 years old and this is the first time I've ever been told anything about being knocked knee. The only course of action is to have my femur surgically broken then my whole leg realigned. There is a major University about an hour/hour and a half depending on traffic from where I live that could possibly do the procedure I need. My ortho is sending everything to them and going to try to get them to take my case and do it, but its 50/50. If I can't get this done, I will end up permanently crippled in a wheel chair, it would only be a question of when my knee will finally give out for good. Getting that news was like a physical blow. I keep crying every time I think about it. I'm not a candidate for a total or partial knee replacement, or at least, I wont unless I can get the structural issues of my legs corrected. I've been in a wheel chair a couple times after really bad dislocations, usually for no more than a few months and during those months was the hardest thing in my life. I'm 24 and have a 3 yr old daughter, I cant end up crippled, the thought just scares the crap out of me.

Offline rmholts

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Re: Cant stop crying
« Reply #1 on: March 02, 2012, 05:23:41 AM »
As things stand right now, you can audibly hear my knee grinding whenever I bend or straighten it. You can also feel the grinding if you put your hand on my knee while I'm bending or straightening it. I must use a cane or walker to go short distances, but even to go grocery shopping I must use one of their motorized cart because my leg will give out halfway around the store. If I keep my leg in one position for too long, it locks in place. Frequently my knee "pops" and it is audible to everyone in the room. I have constant pain and swelling, especially whenever we have a storm move in. I cannot stand for more than a few minutes at a time or my leg gives out, I have to use a shower chair in the bathroom specifically because I cannot stand to bathe without falling. I cannot sit on the floor or in low chairs, if I do it is extremely difficult to get up and usually involves a lot of pain. Even just laying in bed, if I roll onto my right side in my sleep, I wake up with shooting pain in my right knee. An EEG showed that I have nerve damage in my leg and foot because of my knee, frequent waves of muscle spasms, cramps, numbness, etc

Offline tink1976

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Re: Cant stop crying
« Reply #2 on: March 02, 2012, 02:08:51 PM »
I have had chronic dislocations in my right knee for years. About 2 years ago I had the Fulkerson and they broke my shin bone and moved it over as my leg was not lined up like it should be. I have 2 screws in my shin just under my knee. I also had 3 other procedures. About 11 months after the sugery ( which I never fully recoverd from) a pwer wheel chair fell on that same leg and broke it in 4 places and through the knee. U can hear it pop and grind and it gives out alot. Part of the reason for that is I have permanant damge from the fulkerson.. I had athropy ( sp?) from result of the sugery which just worsend when I broke my leg and was non weight barring for 3 months.. I also have CRPS ( nerve damage where the nerves in that leg are hypersentive) I wish I would of gotten a second opinion b4 I had that sugery. I have lost about 40 -50 percent of function in my right leg. I was told this is about as good as my leg is going to get and I will have to have a replacement in the furture. I was just so happy that somebody took my problem seriously..after years of PT and other failed attempts to fix it. Dont give up hope. Get other opinions if u need to. I know it is hard as my condition can put me in a chair and I have 4 kids but I cant think about that right now. I have to do what I can and accept what I know I cant change. Im not ready to give up and just give in to my knee/leg just yet. Im too young ( 35). Im sorry you are going through all of this. U have come to the right place. We all have been thru hell to some degree. Keep ur head up and dont give up. Get a second opinion of you feel you need to. Wish you all the luck.. big hugs!!!
Dislocations from 93
Fulkerson TTT
LR
Cartledge repair
scrape of arthritis

Offline allyd

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Re: Cant stop crying
« Reply #3 on: March 02, 2012, 02:39:38 PM »
Hey there – keep your chin up. We all understand how hopeless these knee situations can be. They rule our life and seem like they will never end. There is some really good news for you – they’ve identified the true problem, and didn’t drag you through 5 unnecessary procedures to find it. You need to stay confident and continue to push for help. It doesn’t sound like your OS is going to leave you out to dry, and is willing to help you find that help. If the clinic/hospital near you won’t take your case, there is someone that will. Please read around the board. A LOT of people on here have had successful femoral osteotomies and have come out better on the other side.
04/09 RK - Dislocated Patella & Grade III MCL Tear
06/10 RK - Re-Dislocation Patella
09/11 RK - MPFLr + Lateral Lengthening

Offline Lyndsey

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Re: Cant stop crying
« Reply #4 on: April 03, 2012, 10:08:01 PM »
Hi! I know how you feel! I really do. I'm going to be 23 in September, and i've had knee issues for as long as I can remember. Sometimes they would sublux, and my whole leg would just give out. I was, I guess, fortunate that the twistedness in my femurs were so obvious that it was clear that is what needed fixed first. I had both my femurs derotated, and then the hardware removed. I had some issues with my left hip, and still do, but it's nothing compared to what my knees were like before the surgery. I was in so much pain before the surgery, constantly.

Now, I don't have near the instability. When I jump I feel mostly confidant that my legs will still be under me when I land! I can even run if I have too. Now, running does seem to still cause me pain, but at least I can do it now! I'd probably say that since the surgery I function at 85 percent, whereas before I was probably at 30 or 40! I'm not 100 percent, and I don't think i'll ever get there, but that's just something i'm going to have to deal with. I remember where I was before and it really does make me appreciate where I am now.

I hope your appointment goes well, and someone has some promising news for you! Hang in there!
Lyndsey
5/15/08      R femoral derotational osteotomy
1/19/09      L femoral derotational osteotomy
12/17/09  hardware removal (L&R femoral blade plates and screws)
10/28/10 removal of bone chip and cleanup of scar tissue on left
4/2014 15 deg. Re-rotation of L Femur
9/2014 L. Plate Removal & Fix Fracture

Offline captainruss

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Re: Cant stop crying
« Reply #5 on: April 12, 2012, 02:49:14 AM »
RMHOLTS,

You are actually lucky at this point that you have options and options are hope.  Please google the "Intractable Pain Patients Handbook" which discusses all kinds of pain and other medications.  I think I am this big strong bear of a guy but it adds up and I found myself being emotional.  I mentioned it to my OS and he told me he has taken medication for the past 11 years or he cries like a baby.  I am not willing to go that far, but the medication has helped me cope with eight TKR's and not much knee left to work with.

Please understand that you must get the rotational issues fixed or your hips, lower back, and knee joints are in jeopardy.  University hospitals are typically pretty good.  Get several opinions and keep us informed.  We want to know how you are doing.  It helps to just have someone to talk with who has some sort of knowledge about what you are going thru.

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 KneeZilla

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Re: Cant stop crying
« Reply #6 on: June 06, 2012, 11:36:28 PM »
I hope your doing better since your post. But I will say one thing whenever I feel down about my knee issues I look at the worst case scenario. I remind you this is a very extreme measure but amputation isn't the end. I just saw a video of a guy on youtube who hikes parts of the Appalachian trail after having one of his legs amputated. Even if he has to use some special hiking poles he seems happy and functional and most importantly without pain! so anyway lets hope you don't get to this point but even the worst case scenario might not be so bad! I hope your surgery goes well and that everything works out for you. Wishing you the best!
Knowledge is power.
RK
- Injury with a pulp hook :O jan/12
-MRI possible articular cartilage damage
-scope + debridement 3/22/12
-Pain is back :(

Offline LindaM

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Re: Cant stop crying
« Reply #7 on: June 07, 2012, 02:23:02 AM »
Hey there,

If you need a good cry, a scream, or just sympathy you are in the right place.  We don't all have your same knee issue, but we have been there with the fear and worry and the feeling that things are just overwhelming.  Hang in there, you have a doctor you trust, you have options, and we are here to support you when you don't want to seem like a whiner to family or friends or worry them with the reality of all of this or need some experienced direction to find the information to make good decisions.

You can make it through this! :)

Linda
>20 yrs. osteo and inflammatory arthritis, fibromyalgia
meniscus repair Sept. 2009
right PKR June 2010
left PKR Feb. 2012

Offline captainruss

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Re: Cant stop crying
« Reply #8 on: June 11, 2012, 02:13:07 AM »
I also find it very therapeutic to occupy my mind.  I have found my dog to be a constant source of good feelings and I am taking online college courses to occupy my mind against the pain.

The medications do not always help, but I am actually getting better because I am moving in a direction.  It might not be in the right direction, but at least after 3 years in my case I and doing something.

Lead, follow, or get the heck out of the way...but do something.  Do something with your personal life...do something with getting the right treatment and do something with your pain management....and get a doggy!

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 natenix

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Re: Cant stop crying
« Reply #9 on: June 11, 2012, 05:40:40 AM »
I can sympathize with how you feel.  I am 30 with 3 kids and this spring I thought my longterm outlook might be a wheelchair.  My body kept breaking down in different places and I was diagnosed with being extremely bowlegged and I had 45 degrees worth of tibial rotation.  I researched this sight and saw many folks who had been greatly helped by Dr. Mark Sanders in Texas.  I ultimately drove out there and saw him and had the surgery about 11 days ago.  I'm just 11 days out but I can look and tell my leg is straighter.  We will see in 3 months how things are going, but I am hopeful and I am not in much pain from the surgery.  You may want to check out Dr. Mark.  I never thought I would be willing to go to Texas, but at the same time I never thought I would be in such bad shape with my legs at 30.  The cost for me was worth the benefit.  Hope that offers some hope.  I will pray for comfort for you and a good longterm outcome.

Nate















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