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Offline KinnaMarie

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Need to vent
« on: April 14, 2012, 04:07:29 AM »
I am beyond crying, being mad and frustrated, wanting to give up, and being so angry.  I just want to get back to normal, drive, run, play sports, and live a normal life and not see a doctor almost weekly and constantly go to physical therapy.  After 4 knee surgeries in a year and a half, I know and understand I won't be able to do everything I used too, but its hard to accept when I used to be able to do everything. 

One freak accident of playing on a bar league essentially changed my life in an instance.  I will never forget when I went up to spike the ball and came down on my knee wrong and heard the crack.  At that moment I couldn't even breath and was just trying not cry, I just laid in the sand not wanting to open my eyes.  Of course I dislocated my knee and a piece of bone chipped off.  I had my first ever surgery in my life to remove the piece of bone.  After surgery I was told I had to go to physical therapy.  After 3 months of not progressing and my knee not bending, my original OS gave up on me and send me to another guy in his group.  From the start he was concerned and saw my knee cap wasn't in the right place and essentially wasting away.  He thought to try therapy a little longer, but after a month I went to him and said I just want the other surgery to fix this.  I then had a fulkerson osteotomy, lateral release, and tightening of some ligaments.  I was on crutches for 3 months and in a hinged knee brace for about 5 months.  Once I was allowed to get out of the brace, i thought I was ready to start running.  Then they thought I was having a stress reaction because my leg started bruising, so I was told to stop PT.  The bruising kept getting worse so they thought I was allergic to the screws so I had those taken out and was told to wear my hinged brace again.  Things got better until I was allowed to stop wearing my brace.  The bruising and swelling came back.  At this point my doctor was clearly frustrated and his frustration came out during one of my weekly visits with him.  I walked out crying and said I never wanted to come back.  Well after a month things kinda got worse and I kept in contact with my OS's assistant and she said I had to come in.  I said I would come to see my PA just for him to see if things are ok or not.  Well my OS came in after and he said he wanted to talk to some other doctors before trying something else.  A month later (in January of 2012) I had another surgery to remove the sutures and he broke up all my scar tissue.  After the surgery I then was in the hinged brace again.  Things were getting better and I said I was sick of the hinged brace and wanted a smaller one.  My OS agreed and after a week my knee was bruising again.  Why is it when I come out of the big hinged brace things get worse?  Well no one knows. 

So my OS thinks it is a nerve issue, and he has thought this before and sent me for a nerve test before my 3rd surgery and then another one a couple months after.  I guess those didn't really show much, but he said he would send me to someone else.  For awhile I said no, but a week ago I agreed and said if it would make him happy I would go.  My first visit went well, they were really nice and just wanted all my history and said they would try and put the pieces of the puzzle together.  I was hopeful!  Then I get a call and they decided I should go in for a 3 phase bone scan before my next visit.  I went for the test, which took forever, but what I didn't get was after the initial part of taking an image of my knee, when I came back after whatever they injected me with had the chance to work its way down, they decided to take an image of my whole body and then one of my feet.  I told them I was having this because of my knee, but they said the doctor wanted this.  I was a little lost.  So I went to get the results today and she things game back pretty normal, they noticed some stuff around my knee but essentially dismissed it and are more concerned about my ankle and foot.  My ankle and foot are weak, I know because i've compensated for my knee hurting, but they now are thinking I have peroneal nerve damage in my lower leg.  But what is frustrating to me is I went there for them to figure out what is causing the bruising and swelling  but say they aren't worried about my knee right now or don't get what is going on.  Then why did I come?! I just want my knee better and want it to bend....not find another issue! 

What also frustrated me about today was the fact that they were asking me all these questions about how this is affecting my life.  I said i'm fine.  Deep inside I was thinking of course this is driving me nuts because i feel like i'm losing my independence and am just over seeing doctors.  She kept going with the questions and I thought they were never going to end. She was asking questions as if I was 80 years old, but I am 23!  So they said they want to send me for yet another nerve test, but I was so frustrated and said I didn't see the point.  I don't know what else to do and just want to stop dealing with this.  I just needed to vent!         

Offline LindaM

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Re: Need to vent
« Reply #1 on: April 14, 2012, 07:52:02 PM »
Hey there KinnaMarie,

Vent away!  There is always a sympathetic ear available here.  I understand your frustration, especially at your age going through so much from just a bad landing.

 But it sounds as if your doctors are really trying to help, even if they are not focusing on what you think is important.  If you check out peroneal nerve injuries, they often happen after a knee injury and it is a serious thing-not just an unimportant delay in healing your knee.  You can have foot drop, problems walking, all sorts of bad things happen as a result, so I think your doctors see this as even more important right now for your long-term mobility.  Your foot and ankle alignment directly affect your knee, so if this isn't dealt with your knee might never recover as fully as it could.

Don't try to be so patient and rational and lie to your doctor about your frustrations.  Tell them the truth-they've heard it before and will understand.  You are in this together as a team and you need open communication.  If you don't see the point of a test, ask for an explanation.  Your are an adult and deserve to get it. 

Hang in there! :)

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: Need to vent
« Reply #2 on: April 23, 2012, 10:36:08 PM »
Kinna,

I can relate to what you are going thru.  At least here on the KG forum you will find people who actually know what you are going thru and understand the amount of pain and stress you are under.  Personally, I understand your frustration.  I have completed eight (8) TKR's in the past 2 years because three (3) OS and three (3) Infectious Disease Doctors stated my TKR was infected and needed to be removed.  Well, the joint was never infected and seven of the eight were not necessary. If fact, all eight were not necessary.  I was fully functional before agreeing to a TKR at 47 because I was in pain.  I had a shattered knee cap and 5 surgeries in football 29 years ago.  My knee was bone on bone, swollen each night, and it considerable pain.  The pain was less than what it is now, the inflammation is much more than it was then, and of course i cannot function.

When they ask you questions and want to know what you are feeling....I am forced to ask what frame of reference are the using to comprehend what I am telling them.  If they have not had more than 28 major surgeries, or even 1 major surgery....if they have not had to hobble around on a leg or submit to that 3 phase indium bone scan (I have had 3) or having a needle shoved 6 inches into the side of my knee at least 30 times to get tissue or fluid samples that have ALL come back negative.  In fact every test I have had for infection was negative, yet for more than 2 years six of this areas (best) doctors stated I was infected.  I had a sudden bout of pneumonia after the second TKR...was find at 11 p.m. when I went to bed but awoke at 3 a.m. with 104 fever and feeling like death warmed over.  I spent 5 days in ICU and 4 days more days getting antibiotics. 

All six doctors had no clue that Arthrofibrosis (AF...scar tissue) was a complication to knee surgeries.  It is treatable if found early. If not and if you are part of the 1 percent who get it chronically, it is tough to get rid of.  I am now suffering with Heterotropic Ossification (HO) which is bone growth in the soft tissue.  I have bone growing in the scar tissue in my knee.  It would have been prevented if my OS was looking forward and simply prescribed an anti-inflammatory post surgery.  He did not so now he won't operate on me until the bone stops growing sometime in the next 2 years.  At that point they can revise it (cut it out) and then treat me with radiation.  If that does not cause me to get cancer, hopefully it will stop the HO from growing.

Please give us more info.  Where are you?  Are you seeing a PM (pain management)?  Are you seeing a psychologist?  Please don't disregard this.  You are suffering with something none of these people comprehend.  You need to talk with someone.  The people at KG are very helpful.  I hope I did not insult more of the "brainiacs" in here by only giving you two names.  There are multiple very intelligent people in here.

You also need to go to as many doctors as possible.  If you have a consult and the doctor does not give you as much time as it takes to explain anything you are concerned about, or if they don't give you adequate pain relief, and if they don't give you positive suggestions to attempt to improve your condition, get up and walk out.  Find another one.  Keep looking as there are few very special doctors, but they are available.

Keep posting.

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: Need to vent
« Reply #3 on: April 23, 2012, 10:38:07 PM »
Hey all you KG Rocket Scientists out there,

I see 100 have viewed this person's thread.  I know it takes time, but give her something to start working on.

Kinnamarie, send me a private message with your email address and I will email you pages of links I have been provided by smart people here that are very informative.

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 tink1976

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Re: Need to vent
« Reply #4 on: May 25, 2012, 05:41:48 PM »
The good thing about this sight is we all have one thing in common..bad knees.. we can relate to each other in that way. I understand your frustration. I myself have had a very hard time with my knee. 20 years ago I dislocated it. Through out the years I have done PT and it got to the point where it would pop out and back in if I just sat down or went up and down steps. I found an OS that I felt like took me seriously and within one month of seeing him I was having a fulkerson osteotomy, lateral release, microfracture chrondoplasty and arthitis scrape ( I have a post somewhere on here going to more detail about it). I had a very rough recovery and got RSD/CRPS in that leg and severe athrophy as well. I couldnt even walk up and down steps normally, run or do anything like that. Well once I started to feel somewhat better ( maybe had 2 good weeks) 11 months after the sugery I was helping a friend of my sons get a power wheelchair out of her car and it fell on that leg and broke it in 4 places. It broke it just under the knee, down the shin bone and on both sides of my knee. I was worse off then I was before. I was in the hospital for 1 week and an inpatient rehab center for one week. Then back to PT. I was in a straight leg cast and non weight baring for 12 weeks. I was miserable and felt so hopelss. I did manage to recover pretty quickly. Within 2 weeks of becoming weight baring I was walking without assistance but the athrophy got worse and my leg is so weak now that it buckles and I cant run, jump, climb stairs normaly or even be on that leg very long. You can look at the quad and it looks slightly deformed for so much athrophy. While in PT and we were strenghting my knee and quad we soon relaized there was alot of grinding and popping and it was very painful. I got a MRI and xrays and have found out that Im going to need a joint to be replaced in the near future. I was also told my leg may never get better. This may be as good as it gets. Im about to go in and have the screws from the Fulkerson removed on June 8th and start steriod shots so we can work on strenghting that leg so I wont get any worse when I have to have that joint replacement but I may never be able to be as active as I once was. I do get down and tend to get hung up on my restrictions and tired of being in pain. I just recently got off of pain pills after being on them a better part of 2 years.

We all understand frustration and all have our stories. This is a great site to vent to people and share your story as we all have been there in some way and who better to understand the frustration then people here on Knee Geeks.. Vent when you feel you need to. We all need to get it out. We are all here for u and I wish you nothing but the best.
Dislocations from 93
Fulkerson TTT
LR
Cartledge repair
scrape of arthritis

Offline captainruss

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Re: Need to vent
« Reply #5 on: June 11, 2012, 02:38:29 AM »
Kinna,

How are you doing?  Please update us.  I cannot imagine the stress on someone 23 years of age.  Do you have a good support group?  Family? Friends? 

My 14 year old daughter is in need of surgery, but we are still trying to find the correct surgeon.

Please tell them how you are feeling.  Tell them how useless they are being and how tired you are with them passing the buck.  Your doctor has operated 4 times.  He should have a vested interest in getting you better.  He needs to make inquiries and find someone capable of curing what he has not.  He should be very involved and make a definite effort to find you a specialist and inform that specialist of your condition, surgery reports, and his opinion of what needs to be done.

These doctors make you upset and frustrated and then play 90 questions because they are afraid we might do something to harm ourselves because of the life long dibilitating results of their actions.

Tell them what you are felling and demand they make it right.

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 KinnaMarie

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Re: Need to vent
« Reply #6 on: June 12, 2012, 01:36:25 AM »
I am doing ok!  I have been super busy with finishing up my schooling and graduating college (with high honors!),  so staying busy has kept my mind off of everything.  I have amazing people in my life that are there for me if I choose to talk to someone, but I prefer to just ignore it and smile if someone asks how my leg is doing.  Oh.. to add to everything... because my foot turns in and the lack of muscle in my ankle, I fricken tore the ligaments in my ankle and they thought I may have had broke it/have a stress fracture.  My whole foot/ankle was swollen and starting to bruise, but I kept ignoring it for over a week, then my mom saw it and said I should probably call my dr.  So I was put into a boot for awhile and I finally am in a air cast which is a lot smaller. 

I am actually going to go back to the other dr my OS sent me to this week.  I have not seen them in 2 months because they made me so made after I had the nerve test and they refused to give me the results over the phone, so my OS got them and told me.  My OS suggested I do go back to see them and just hear what they have to say.  I do trust my OS, so I am going...not happily, but am going. :) 

My new saying is, "It is what it is."  Life happens and i've learned that not everything in life happens smoothly, but you will get through it.  Eventually my leg won't hurt!       

     















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