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Author Topic: how do I help myself?  (Read 2403 times)

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Offline EveDayu

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how do I help myself?
« on: September 09, 2003, 05:17:48 PM »
Hi!  I am new here and I don't know where I should post this, so I hope someone will point me in the right direction.

In 1997, I landed in the hospital with septic arthritis in my left knee caused by streptococcus bacteria.  I suppose it came from my falling down and scraping my knee even though I thought I had put antibiotic cream on it.

In 2001, I went skiing.  I'm not very good at it, I do it because skiing is very important in my husband's family, like "Christmas just isn't Christmas if you don't spend it skiing!"  I don't remember any spectacular falls, but I did limp for 2 weeks afterwards.

In 2003 I went skiing again.  How stupid, you are probably saying to yourself.  YES.  I definitely didn't have any traumatic falls, but I didn't recover afterwards.  I am telling you this boring history, because I don't know if my knee problems are related to the damage caused by strep knee or skiing.

In the last 1.5 years, the distances that I can walk pain-free has gotten steadily less.  In the beginning, bicycling wasn't a problem at all, but now bicycling is a problem, too.   I bought a exercise bike 6 months ago.  I started off being able to bicycle 10 km at resistence 8 in about 30 minutes.  Now I am down to resistence 3!  I am feeling very frustrated.  Having developed the discipline to do daily stretching and strength exercises and massage from my bout of mouse arm,  I know I can do whatever is necessary for my knee, if only I knew what to do!  I am just not sure that what I am doing right now is helping!  Shouldn't I be able to increase resistence or mileage or speed with time, instead of having to decrease it?  

Thanks,

Eve

Offline lam651

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Re: how do I help myself?
« Reply #1 on: September 09, 2003, 06:38:03 PM »
Hi Eve,
I'm sorry I can't give you any answers you are looking for. But, if it was my knee I'd get in to see a knee specialist as soon as possible. In my experience I've found that orthopedic surgeons at sports clinics seem to have the most knee experience. Good luck, Larry
arthoscopy('99),HTO(tibia didn't heal 10/01),knee braces(7/02),HTO w/ex.fix. to repair tibial non-union(3/03), remove ex. fix.(9/03),HTO other leg(12/03)

Offline EveDayu

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Re: how do I help myself?
« Reply #2 on: September 09, 2003, 09:13:04 PM »
I've already seen 4 different Orthopeden (I live in Germany, can anyone tell me if they are orthopedic surgeons?) and  I will see another at the end of the month.  I always did go in with a list of questions and halfway thru the list, the doctor went out the door!  I guess I concluded I have to figure out this sort of thing myself.  I was intending to at least get a concrete diagnosis from the next doctor so I can figure out what I have to do from the Web and (hopefully) this list.   Did your doctor actually take the time to explain things to you?

Eve

Offline dm

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Re: how do I help myself?
« Reply #3 on: September 10, 2003, 02:17:07 AM »
If they haven't, you ought to ask first thing if they'll do an MRI to see what might be going on in there.

I don't have much in the line of ideas either. The only thing I can suggest while you check into things is to try and do a routine of strengthening exercises for the muscle groups around the knee. Try to keep to non impact exercises, if you can.  You might try icepacks for the pain, they may help the discomfort in the short term.

It doesn't take a traumatic fall to damage something in the knee. I tore my meniscus taking a step while bowling, of all things. I retore it later fixing things around the house.

Keep following up on it, don't give up, you'll eventually find someone who will be able to help.
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 sqwak

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Re: how do I help myself?
« Reply #4 on: September 22, 2003, 08:20:17 PM »
You may not be able to help yourself.  If your injury has not responded to a reasonable course of physical therapy or in your case, the equvilent, you will most likely need the help of an orthopedic surgeon.  Good luck.

Offline ATsoccergirl

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Re: how do I help myself?
« Reply #5 on: September 22, 2003, 08:26:26 PM »
Eve-

Orthopedens are orthopedic surgeons.  My brother is a forgien exchange student in germany right now and his host father is one.
1999 LR, 2002 ACL/PLC recon, reversal of LR, 2004 ACL revision, 2006 Car accident torn PCL and small fractures resulting in bone chips in my knee.  Torn MCL 3 times.  Wicked screws under IT band and Pes Anserine.  June 2008-Hip Arthroscopy.

Offline ~*Heather*~

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Re: how do I help myself?
« Reply #6 on: September 23, 2003, 06:51:59 AM »
Hello,

Where exactly is the pain in your knee when you are cycling?  Is it just the whole thing in general or a specific area? Is there any swelling with the activity? I would concentrate on doing the less resistance and then trying to work up slowly, very slowly. There could be something going on in there and attempting too much at once could make it worse.

A trick one PT told me was to raise the resistance up by one or two notches and pedal for 30 seconds to a mintue off and on throughout the ride.  You can try that and see if you can build it back up that way. It's mainly for endurance but it also works for strengthening.   It does not sound good that you are losing ability. How far are you walking before it tells you to quit?  You really need to get it evaluated especially if you continue to see a decrease despite the attempt to ease it back to normal.    

Good luck and keep us posted,

Heather
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04

Offline EveDayu

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Re: how do I help myself?
« Reply #7 on: September 24, 2003, 09:28:44 PM »
Heather, I got the sneaking suspicion from your comments that I might be trying to do too much and my pt agreed.  AARRRGGGHH!  But my doctor said "bicycle, bicycle, bicycle".  They just didn't say how often, how far or when to stop!  Gee, a doctor would never just say you need an antibiotic - decide for yourself how much, how often and how long!  Nuts!  I don't think it is common sense to stop with pain, because regaining ROM was the most painful thing that I've experienced in my life (much worse than 2 deliveries without anesthesia) and I had to do most of it to myself.

I saw another doctor today.  Like all the others he was in and out in 5 minutes - but he didn't just tell me to bicycle.  He said I have chondromalacia, my cartilege under the kneecap looks like cauliflower and it's a result of the infection.  He wants a szintigramm and I have got a special thermos jug cum compression/cooling bandage to go with it and I have to have those things in the shoes that change the angle of your feet and a bandage to support my kneecap which is too low ( patella baja.)  I'm feeling optimistic for the first time.  Whether any of this helps, at least he is trying!

I am starting to get used to the idea that surgery may be necessary. :-[

Eve

Offline Jillian24

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Re: how do I help myself?
« Reply #8 on: September 24, 2003, 10:13:54 PM »
Eve,
   The only way that I can relate to you is that I had a sever staph infection when I was 14. I was in the hospital for a couple months and about 3 months later I got the same one as you in my arm. It was aweful! As far as your knee goes, I would be presient and make your OS pay attention and listen to your complaints. Thats his job....Let us know if you find anything out! I wish I had more advice for you, but welcome to the board.    Jillian
ONE TTT LAST OCT
10 LR'S    ONE MEDIAL RELEASE
STAPH INFECTION.....MANY MONTHS IN HOSPITAL

Offline Heather M.

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Re: how do I help myself?
« Reply #9 on: September 24, 2003, 10:29:18 PM »
Eve,

If the OS said you have patella baja, that in itself is enough to explain all of the issues that you have--it's a real nightmare.  Heather and I both have it, as does Janet and several others on this board.

One thing you might want to consider is seeing a specialist to does the open repairs for TTT.  I KNOW there is one in Germany who has pioneered this method for addressing patella baja, because my surgeon here told me about a doctor in Germany and asked if I wanted a referral.  I didn't want to travel to Europe, but since you are there....I would recommend looking up the term 'patella baja' or 'patella infera' on German web search engines to see if there are local doctors who have written articles and done research.

If you are interested, I could try to get the information for you about which doctor does this special surgery for patella baja--it will take a few days because I am also out of state with my OS and we end up leaving loads of messages for each other.

In the meantime, you should read up on patella baja (check out the soft tissue healing problems section) and scar tissue issues (arthrofibrosis)--the most important thing you can do is control the pain, tape or brace the knee for better patella placement, and not do ANYTHING that really irritates the knee.  I'm stuck with specific exercises (it's hit and miss--you just have to see what hurts and then eliminate it) and recumbent biking only.  Everything else causes extremely sharp pain during the activity, and horrible throbbing aching later.

This is a very difficult condition to treat--I've also had two different incidences of staph infection, so I really feel your pain!  Come on over to the Baja Board (just kidding, we don't really have our own section) and see if you can't get some ideas for how to build the muscles while irritating as little as possible.  

Heather just had the open surgery to address patella baja, and I've been contemplating it but can't bring myself to do it yet.  The fact that no doctor wants to take me on might have something to do with it...you need to be prepared for a LOT of doctors to run away from your case--it is very complicated and often is not possible to return to full impact activities like running.  So the patient already starts out behind the curve--many doctors don't have the courage or knowledge to take on this kind of patient.  

We're all here for you, though--we're living it every day.  Good luck in your search, and please talk to others with this problem to find out what works and what doesn't.

Take care,

Heather (Two of Five--like the Borg--LOL.  Heather K is One of Five, Heather is Three of Five, and so on....)
« Last Edit: September 24, 2003, 10:31:23 PM by hmaxwell »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline Heather M.

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Re: how do I help myself?
« Reply #10 on: September 24, 2003, 10:34:55 PM »
Eve,

By the way, there is DEFINITELY a relationship between having a staph or other infection in the knee and having patella baja and serious mechanical issues later.  The infection causes tons of swelling, scar tissue, and trauma that cause the soft tissue to shrink and become fibrotic (hardened).  This happens to the patellar tendon, which shortens, and causes patella baja.  

And voila, there you have it--a recipe for knee misery in one easy step.  I've had two infections and the scarring has been unbelievable as a result.....

Heather (Two of Five--LOL)
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline EveDayu

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Re: how do I help myself?
« Reply #11 on: September 30, 2003, 09:54:53 AM »
Thanks Jillian!  It is the infection and not the operation which causes all the misery, right?

Heather M, I have been reading up on patella baja - and I don't want an operation!  (wail)   But even if I give up all sports and unnecessary walking , is it the sort of thing that automatically gets worse?  I don't understand the scarring bit.  Why do scars get worse over time?  It took me about 1-1.5 years to recover "fully" from the infection/operation (be able to walk without limping, be able to fold up my legs  or straighten them completely) but then I had no problems for 2 years.

I am the first person to mention scintigram on this forum in the last 1000 days ... but has anyone had one?  I get one tomorrow and besides that it is a bone scan, I don't know anything about it, like what is the doctor trying to find out?

I don't think I am dealing very well with this emotionally.  Every new piece of information I find out just really hits me like a brick.  (That's why I can't reply immediately to posts. I want this to be not true!  Every time I talk about it I want to cry.) You gals seem to be able to talk about your problems reasonably (or is this illusion?).  What has helped you accept your problems or achieve a certain serenity?

Eve

Offline ~*Heather*~

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Re: how do I help myself?
« Reply #12 on: September 30, 2003, 10:25:18 AM »
Eve,

I cannot comment on the test that you are having done or anything regarding the staph infection, however, you asked questions on coping at the end of your post and would like to offer some help there.

First thing, this forum has been wonderful to me.  I never understood knee issues until I came here. I have (had hopefully) patella baja and just had an open knee surgery to try and correct it. I didn't even know what patella baja was or anything about anything before these wonderful people helped me comprehend it all.  

Please keep posting/venting whatever you need to do. It's really a stress relief and you'll end up with great info as a bonus.  You can never ask too many questions here and everyone really takes the time to respond to your posts. You rarely ever get a generic answer mostly in-depth and straight from experience...the best kind.

I have had this knee issue of mine for almost 2 years and less severe ones even before that. I have had soooo many limitations for that time too. It's very depressing. I still think I am very very depressed. I do miss my old life. I miss active workouts where I sweat from activity not from pain. Sometimes I thought about getting on some anti depressants to deal with the sadness.  It's perfectly normal to feel this way. To feel as if you have been robbed of something.  I will always be limited as far as mobility and function, but I am learning to deal with it. I try to use it to help other people now.  I haven't got used to the people who stare though. Gosh how rude!  I guess they dont understand how it makes me feel. I'm have a brace on and my knee is looking quite deformed still. 4 weeks post op on Friday.

For me? It's an illusion of how well I'm dealing with things.  I have spent many days in a rage or with crying spells.  It helps again to have this board on those days. You are not alone. I guess I've started to accept that I'm 'broken' right now. There isn't anything I can do about it right now so I try to spend my time reading and researching ways to make it better.  Trying to be upbeat about being at home unable to work, drive and walk is hard.

In short, I'm still working on dealing with things.  It's okay if you are having a difficult time. We all have bad days when we think the world's totally unfair and everything sucks. Try reading other posts throughout the site.  A lot of people have posted about the depressing side effects and how to cope.  When I first came to the site Heather M. and Janet were the only two I knew of that had baja here. They offered great advice to me on what to expect and how they coped and are still coping. Most of all they offered patience for me asking the same questions again and again as I tried my best to understand the condition. It really helped. (Thanks guys!)

Hang in there.  This is a very hard time for you and I want you know that you aren't alone. It really helps to have people to chat with about this stuff even if you don't know them personally.  Keep us posted. Good luck to you!  You'll be in my thoughts  ;)

Heather B.
R knee-2 LR's, 1 ITB Release. L knee-LR/medial plication (2/02).Fell postop 3/02 & ruptured quad tendon.Quad tendon repair (8/02).Led to Patella Baja.TTT w/ Quad tendon reefing 9/03.Screw removal 8/04