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Author Topic: Arthrofibrosis Patient Patterns  (Read 17367 times)

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Offline jennifer123

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Arthrofibrosis Patient Patterns
« on: August 24, 2004, 07:58:00 PM »
Hi all,

Last night Jaci and I (both still in Vail) had a very interesting conversation.  We started talking about pain medicine and then about the allergic reactions we have to medicines... and soon we realized that we have *a lot* in common.  

For example, we realized that we both have hypersensitivies to laundry detergent and fabric softener: we start scratching like crazy, get heavy lungs, and have difficult breathing.  (We both have a hard time walking down the detergent isle at a market!)  We started talking and realized that these sensitivies both started in our early-ish 20's.  

Jaci is the first person I've met like this.  I guess I'm really wondering if there is an overall pattern in arthrofibrosis people.  Unless the doctors are swabbing off their surgical tools before surgery with fabric softener sheets, I'm sure that I'm not an adhesion queen due to this sensitivity.  But, if we all have similar sensitivies or if there are patterns in arthrofibrosis patients, it would be very very interesting.  And, it would be helpful probably in pinpointing who is more likely to get arthrofibrosis following surgery.

Anyways, since we are rare people on this earth, this is probably one of the greatest gathering of arthrofibrosis patients... so I was thinking we might be able find patterns -- if, of course, there are patterns to be found.

I'll start in the following post... maybe it's just Jaci and I... but I thought I'd post this and ask.   :)

Jennifer

PS. I promise I'll bring this up to Dr. S if we find a pattern!  :)
8 surgeries:
2/03 ACL left knee
5/03 LR right knee
6/03,1/04 scar tissue removal left knee
5/04, 6/04 adhesion removal, anterior interval release;  8/04 MUA, insufflation, injection; 8/1/08 ACL left knee (again) + LOA

Offline jennifer123

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Re: Arthrofibrosis Patient Patterns
« Reply #1 on: August 24, 2004, 08:10:21 PM »
Strange Issues which all started in my 20's:

* fabric softener and laundry detergent:
If they are not "free of dyes and perfumes" I have a hard time breathing, and I itch like crazy.  

* face lotion sensitivity
Some lotions make my face burn and turn bright red.

* red and itchy hands (sometimes)
Might be due to a new sensitivity to dishwashing soap.

* receeding gum lines
I have to be careful with the toothpaste and toothbrushes I use.

* medicine issues:
percocet, darvocet: hives and itching
vicodin, codine: severe stomach problems
sulfa drugs: mono-like symptoms (especially fatigue)


Strange Issues since birth:

* strong cat sensitivity
I can tell if a cat even thought about setting foot in a house.  (not really... but almost!)  :)


Hmmm.... okay, maybe we will all have idifferent sensitivities, but it might be interesting if there are patterns.

Jennifer
8 surgeries:
2/03 ACL left knee
5/03 LR right knee
6/03,1/04 scar tissue removal left knee
5/04, 6/04 adhesion removal, anterior interval release;  8/04 MUA, insufflation, injection; 8/1/08 ACL left knee (again) + LOA

Offline SarahSmile

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Re: Arthrofibrosis Patient Patterns
« Reply #2 on: August 24, 2004, 08:47:54 PM »
Interesting....
I don't know if it has anything to do with arthrofibrosis at all, but I am sensitive to alot of things... I always just attributed my sensitivity to being fair-skinned and blonde but who knows ???
I have alot of drug allergies: morphine, dilaudid, codeine, anti-nausea meds... I get very itchy, red, and heart races.
I have a lot of skin allergies- that's my main problem. I can't even use some products that claim their targeted for *sensitive*skin... I get excema (sp?) and red, itchy skin. I am *sometimes* allergic to fabric softeners, but not too bad... if I use one that has a lot of perfume in it, I will get excema. I don't consider myself 'ultra-sensitive' but I am definately more sensitive than the average Joe shmo.
Interesting...?
Severe AF
'95-ACL Recon
'01-ACL Recon revision; 30 degrees extension
'02-MUA, notchplasty. Severe arthrofibrosis.
'04-MUA,Chondroplasty,menisectomy,synovectomy,bone spur rmvl.
'04-MUA, Chondroplasty,synovectomy
'05-Extensive LOA, AIR, LR
Surgery #7: 7/12/06: LOA, AIr
9/15/06: DIAGNOSED W/ RSD

Offline Heather M.

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Re: Arthrofibrosis Patient Patterns
« Reply #3 on: August 24, 2004, 09:16:46 PM »
Jennifer,

It actually makes sense, and we've talked about it before, because arthrofibrosis is the result of an over-active immune system that doesn't know how to shut off after the threat is past.  And allergies are the result of an over-active immune system treating normal, everyday things as a threat, triggering a histimine response.

I have so many allergies I can't go into them all here, but these are the biggies:

*fabrice softener and laundry detergent:  I must use the dye free and fragrance free variety (bounce sheets).  However, I live in the land of hard water, so I've introduced Downey--I just have to run the rinse cycle twice, use a small amount, and then take antihistimines every day.  Otherwise, itchy red skin that I can't stand not to scratch.  But if I don't use the softener, my clothes and esp. towels are so rough they also irritate my skin...

*Face lotion sensitivity:  neutrogena for sensitive skin or a very expensive brand called Julique are all I can use.  The real pain is that I can't seem to find an everyday sun block that my skin can take--it itches and turns red, then I break out in acne like conditions.  YUCK.  So I try to wear hats and stay out of the sun, but my freckles are so unbelievable right now.

*red and itchy hands, especially the thumb and forefinger.  Same with toes.  I think this is from dry skin, but I have to be careful with moisturizers.

*receding gum lines (OUCH).  I have four teeth right now where the dentin is exposed...that's nerve, folks, because the gums receded despite daily brushing and flossing.  My gums always bleed.  I have significant tooth problems that went away once my knee started up.  I have had over 32 oral surgeries including root canals, crown lengthenings, apicoectomies (infected root of tooth that goes into jaw bone), extractions, and dental implants.  Lots of infection issues.  I'm half afraid to go to the dentist, which I haven't done in about 2 years.  I know that there is some big stuff hapening, but I'm DONE with pain for a while!

*medication allergies:  can't take penicillin or any other 'illins' b/c of hives.  Soma (muscle relaxant) causes hives.  Vioxx causes vomiting and diarrhea (TMI, I know).  I had to go through 5 prescriptions of birth control pill.  Vicodin makes me nauseous and my heart race, codeine makes me nauseous.  Percocet makes me nauseous but I got past that.

*food allergies:  you name it, I've got them.  Though I missed all of the serious ones--like shrimp and nuts--that cause anaphylaxis, I do get a contact allergy in my mouth and throat from certain fruits and nuts.  This leads to red sores and swelling...in the throat, this doesn't feel good.  I'm also allergic to beer, which SUCKS because I love it.  I can have about 1/3 of a bottle before my face breaks out.  If I take a benadryl before I drink the beer, sometimes I'm okay, other times it looks like I have red stripes on my face & neck and feels like a sunburn.  Needless to say, I've stopped drinking beer.  Same thing with many alcoholic drinks, leading me to believe I'm sensitive to the sugars in alcohol.  

*violently allergic to cats.  I can walk in a room and know if the person who lived there 10 years ago had a cat.  I've had people lie and tell me there was no cat, and I would break out while in the house.  If I stay in a cat-filled environment I will get sinus infections, bronchitis, and eventually pneumonia.

*Lots of other environmental sensitivities:  hay fever, grass, tree pollen, some roses, daffodils, perfume (GAH!), some dogs.  These are both respiratory and contact (skin) allergies.

Like most people, I'm more sensitive when I'm tired, run down, and suffering from environmental allergies like hay fever.  If I have no other allergy issues going on, I can drink a little beer or maybe pet my neighbor's cat who comes to visit & torment my dogs.  But if any other allergies are acting up, it makes things much worse.

Heather
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 SarahSmile

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Re: Arthrofibrosis Patient Patterns
« Reply #4 on: August 24, 2004, 09:23:28 PM »
Very interesting.... I also have receding gums and had to have a few surgeries for it when I was only 22. they cut the top of the roof of your mouth out and implant it on the receding gums...I've had it done twice (ouch!) and they are STILL receding...
Severe AF
'95-ACL Recon
'01-ACL Recon revision; 30 degrees extension
'02-MUA, notchplasty. Severe arthrofibrosis.
'04-MUA,Chondroplasty,menisectomy,synovectomy,bone spur rmvl.
'04-MUA, Chondroplasty,synovectomy
'05-Extensive LOA, AIR, LR
Surgery #7: 7/12/06: LOA, AIr
9/15/06: DIAGNOSED W/ RSD

Offline stgiles16

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Re: Arthrofibrosis Patient Patterns
« Reply #5 on: August 24, 2004, 09:40:31 PM »
Ok guys, this is just creepy. I have the receding gums but not the cat allergy.

Cant take Vioxx, messes with my stomach BAD

Allergic to sulpha drugs and the really weird one, am allergic to fleas , yep those small gross creatures on dogs. I break out from head to toe if only one small one bites me.

No food allergies but the fabric softener will get me so I have used the same one for years.

I also suffer from hay fever and enviromental allergies.

HMMMMMMMMMm makes you think , doesnt it?
MIssy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline JaneB

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Re: Arthrofibrosis Patient Patterns
« Reply #6 on: August 25, 2004, 05:18:47 PM »
Just to add my .02....  I'm allergic to sulfa drugs (life-threatening anaphalactic reaction); contrast dye used in Xray procedures; cats; hay fever.

Jane B.
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline Janet

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Re: Arthrofibrosis Patient Patterns
« Reply #7 on: August 25, 2004, 11:21:06 PM »
I don't have any allergies (except to cats). I don't have any sensitivities. I do have receeding gumlines. Years ago when I broke my wrist one year and a bone in my foot the next (don't ask!), my OS at the time told me my body produces a very strong reaction to trauma. That definitely fits in with excessive scar tissue. I often wonder where I would be today if that same OS would have treated me for my knee injury. At least he would have been looking for complications.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline dagnabit

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Re: Arthrofibrosis Patient Patterns
« Reply #8 on: August 26, 2004, 05:09:43 PM »
I TOO HAVE HAD AN ALLERGIC REACTION TO  CELEBREX  (SULFA)  BUT CAN TAKE BEXTRA WHICH ALSO CONTAINS SULFA  AND SOME FABRIC SOFTENERS  THIS IS VERY INTERESTING  BUT I DO BELIEVE THAT MY SCAR TISSUE WAS DUE TO  9 WEEKS OF  IMMOBILAZATION   WERE ALL OF YOU GUYS AND GALS  IMOBILE FOR A LENGTHY TIME ALSO

DAG

Offline Janet

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Re: Arthrofibrosis Patient Patterns
« Reply #9 on: August 26, 2004, 05:21:58 PM »
Dag:

I was initially immobilized for about three months (although I was out of the immobilizer for PT three times a week, I had to wear it all the time when not in PT). But I have had the scar tissue return following two additional lysis of adhesions surgeries, so I can't blame it solely on the immobilization. My body just produces the stuff, unfortunately. Luckily, we were able to break the cycle with the last scar tissue surgery. But my knee is a permanent mess from the damage it has left behind.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline stgiles16

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Re: Arthrofibrosis Patient Patterns
« Reply #10 on: August 26, 2004, 05:38:57 PM »
I was only in an immobilizer if I went out, I used a CPM machine from day one but got the scar tissue anyway. I have since found out that I had torn some scar tissue in my ankle from a previous surgery (it hurt so much,  I thought that I had undone the repair) My ankle was immobilized for a long time. So, one of each, I grew it when I was immobilized and I grew it when I wasnt immobilized.

Missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline Sarahreindeer12

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Re: Arthrofibrosis Patient Patterns
« Reply #11 on: August 27, 2004, 10:17:56 PM »
I think that it is inherent that people who form scar tissue have some underlying auto immune dysfunction (allergies, lupus, ms).  My body automatically works against itself due to the lupus.  I have multiple reactions to medications and food (anaphylactic).  Despite having thousands of mg of steroids, my bones are in good shape, in part because I was in athletics.  I rapidly form scar tissue that is ossified.  The only thing that has stopped it is the radiation (which btw is used quite a bit on traumatic knee injuries, but the orthopedic community is lagging).  I don't think anyone can say "this person has a propensity to develop scar tissue vs this one"...only if the person is already immune compromised...but I think that you all are on to something!  Sarah

Offline Teresa_S

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Re: Arthrofibrosis Patient Patterns
« Reply #12 on: August 29, 2004, 09:09:18 PM »
Hi, I am interested in the radiation treatment you talk about, as I have dense adhesions over my entire abd. and pelvis, and , of course, my poor mishapen, swollen, inmovable, hot knee. I formed the adhesions in my pelvis to thickly, that the walls are adhered to the insides, and the physcians, in an open exploration 8 years ago, could not distinguish the ovaries, bladder, etc from the thickness of the adhesions. THey pull my bladder down, and the left side of my belly fells thick and hard from just pressing on it with your hands, and nothing like the right. It is even bigger through, and when I measure there is a 3 or 4 inche difference, just like the circumference of my knee is comparision with the other one. I also have a right port a cath in the subclavian, that formed a big clot, the dr. told me post op he could not hardly get the bleeding to stop, so don't know if he cause it or it formed, anyway it eventually cause the right side of my body to be much larger in the head, neck, arm, shoulder region, and it could be seen by people walking by me. My BP was alot higher on that side. When the swelling started going down, and I notice when they used the port it seemed to flow down the arm instead of across the chest to the heart. I decided I had developed collateral circulation, but the vascular surgeon, who finally ordered a doppler of the area and found a huge clot obstructing the subclavian from the site to the heart, he wanted to treat with heparin, and coumadin, and hot packs, Ididn't think it would work and it didn't . Found another surgeon, who agreed, and said it was too big to take out, would only break off and go straight to my lungs, likely killing me. and to leave it alone and pray it doesn't do it on  its own. POINT IS there are severe adhesions pulling it down now, too, and it causes much pain, but have been told I have to leave the port is or risk death. It too relates to the knee injury, surgery, as it was put in for the IV antibiotics for the MRSA infection I was given after a scope hemmorage. I do have multiple allergies to many meds, dish soap, some detergents, and wool. KEEP looking, we all need all the infor we can gather. Teresa
On going instrumentation failure, chronic infection,
Arthroscopes Left 11 Right 2, MRSA, L TKR  ,  Revision, LR x5, Medial and lateral meniscus repair, Broken prosthesis
Osteochondral Fracture,untreated 6 mths. Revision new tkr 01-07 awaiting new hip and right knee
R TKR pending

Offline Heather M.

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Re: Arthrofibrosis Patient Patterns
« Reply #13 on: August 29, 2004, 09:24:50 PM »
I also have dense abdominal adhesions from an open appendectomy...well, it started out with a scope.  But when my surgeon severed the mesenteric artery (a big one, by the way) my BP crashed and I started to bleed out instantly.  So they cut open my abdomen--I have a 6 inch scar from the bottom of the belly button straight down to my...well, straight down  ;)  I also have three two inch long laparoscopy scars.

The stinky thing is that my appendix wasn't even the problem.  It was inflamed, but from the outside, because it was sitting next to an ovarian cyst that had ruptured and spread its infection stuff everywhere around that part of the abdomen.  So by the time I had surgery, I had peritonitis where the nasty stuff had sat in there and tainted all the surrounding tissue.  This ovarian cyst was a bit rare--usually they form INSIDE the ovary and are related to ovulation.  Mine was outside, and spread infection everywhere.  

Obviously, my bad medical karma began long before my knee.  In fact, when I first had knee surgery I told my OS about the disaster of my 'quick and easy appendectomy scope.'  He told me not to worry, there weren't any major arteries that he could sever in the frong of my knee  ::)  Did I mention that I had a serious joint bleed after my first knee scope?  Almost had to be taken back into the OR from recovery to have it cauterized?  Wish I had, because then they would have cleaned all the blood out and I might not have formed all the scar tissue.

Anyway, back to abdominal adhesions--the lower part of my scar (where the big drain was) is adhered to the abdominal wall and the uterus, and there's a big 'gob' of scar tissue around the right ovary and the area that was cleaned up there.  My whole scar hurts and feels tight.  I get lightning sharp pains that feel like a knife going in my side if I turn or stretch the wrong way (did this while driving yesterday after reaching into the back seat).  Likely I will have pain and issues should I get pregnant (which I'd like to do!) because we all know that adhesions don't stretch very well...I might have to have a C-Section, as they usually worry when someone has had open abdominal surgery about the incision rupturing due to the force of the contractions.  That's why most women who have one c-section have to have others, because they worry about the uterus rupturing.  So I'll have to see what the state of my abdominal adhesions are before making decisions like that...the doctor *mentioned* that sometimes adhesions in the belly can cause infertility.  Great, eh?

I'm sure any guys who were reading this thread are long gone...sorry if it was TMI!

Heather
« Last Edit: August 29, 2004, 09:26:50 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 Teresa_S

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Re: Arthrofibrosis Patient Patterns
« Reply #14 on: September 01, 2004, 06:00:14 PM »
How about this one? My daughter's one year old fox terrier, just loves to nose, nose, nose, andlick lick, lick my knee when it is really hurting and warm, swollen, and hurts like the dickens. He just noses until he han the spot that is so bad, and wants to lick it, I don't think it feels particiularly good, so, DON't allow it, but he is persistent! Teresa
On going instrumentation failure, chronic infection,
Arthroscopes Left 11 Right 2, MRSA, L TKR  ,  Revision, LR x5, Medial and lateral meniscus repair, Broken prosthesis
Osteochondral Fracture,untreated 6 mths. Revision new tkr 01-07 awaiting new hip and right knee
R TKR pending















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