scar tissue is back after surgery #6

[svanzant]

I am about 12 weeks out of my latest surgery and it seems that the scar tissue is back...with a vengance!! My problem started with a torn meniscus back in Feb 2006, followed by a lateral release in Feb 2007 and have'nt been able to get my ROM since then. After my lateral release I had a MUA, and scope to clean out the scarring in May of 2007 followed by a closed MUA in July of 2007. I did alright in PT for a few weeks, even doing aquatic therapy along with regular PT and then my progress began to decline quite rapidly. My OS decided he didnt know what to do, and pretty much left me out in the cold to fend for myself. I saw Dr Shelbourne in 2007 twice and he really wanted me to come back once a month and use the elite seat, but my insurance wouldnt pay for the visits to Indy or the elite seat so I was left to find a OS in memphis to try to help me again. In Jan of 2008 I went to the biggest Ortho clinic in the city and endured probably the most barbaric procedures that anyone should ever have to endure!! The Os I saw wanted to try "conservative" measures before trying surgery again so he decided to try serial casting. This involved propping my leg on a stool and having 2 grown men push as hard as they could to try to straighten my leg. Usually they would get it to move maybe 2 or 3 degrees and send me to the casting room for the cast. Then by the time I would hobble to the cast room my leg would have pinged back to where it was before the torture, so they would prop my leg up again and place a 20 lb weight on my thigh to try to get it back to where it was so they could cast it. They did this 5 times and the results were terrible!! I think they really only got it to improve about 3 degrees the whole time, so the OS decided he would do surgery to clean it out. He prepared me for an open procedure and hospital stay of 2 days. When I woke up in recovery he had only scoped it again and after therapy at his office for 2 months we were back to square one again. At this point he presented my case to the board at his clinic to see if anyone had any idea what to do for me, and unfortunatley no one had any suggestions. So, once again I was left on my own to live with hardly any ROM and constant pain. After that ordeal I saw probably 4 or 5 other OS clinics in memphis and got the same response from all of them...they didnt know what to do for me. Finally in July of this year I found and OS that was willing to listen to me and try to do everything she could to get me some quality of life back again. My first visit with her she did a series of x-rays on both knees and found that my bones in my "bad leg" were about 1/3 the size of the ones in my good leg due to not being able to walk correctly for the past year and a half. She also suspected that I may have RSD because my knee does these weird temperature changes. On Aug 28 she went in and scoped my knee to try to clean out the scarring and see what was going on in there. The surgery was supposed to last 90 minutes and ended up lasting over 3 hours. My scarring was so bad that she could hardly get the scope in my knee. She used 3 shavers and had to wrap a towel around the last one because it got so hot she could hardly hold onto it. She got my motion to 5-120 in surgery, and sent me home with a femoral block, a drain(that she left in for 3 weeks), celebrex, prednisone, neurontin and pain meds. I was also sent home with a CPM to use 10 hrs a day, a dyna-splint to sleep in at night and daily therapy. She also sent me to my pain doc 3 days after surgery for a sympathetic nerve block, and I have been repeating those about every 2-3 weeks since then. The results of the neve blocks seem to last about 14 days and then the nerve in the back of my knee begins to tighten up, I get weird color and temp changes in my knee and my pain level really goes sky high. Things seemed to be going pretty good with my ROM, but my weight bearing has been a nightmare ever since my surgery. We have just recently begun to start losing ROM again and my OS says we are back to where we started with it. My knee has gotten really tight and doing patella mobes have become almost impossible to do. My therapist works for almost an hour trying to get it to move and maybe gets it to move a little in one direction but never in all directions. As of right now my ROM is about 30-80 and my pain is terrible. My OS says that my patella is in really bad shape...its paper thin, it sits at an angle and there is no cartildge behind it all anymore. I had one episode of a fluid pocket popping up that had to be drained(10 cc's), and now I can see another little place that is coming up very close to the same area and its very sensitive to the touch. I went back to see her on wednesday and she is really stumped as to what to do next. She sent me for an MRI on friday and said she was going to try to consult with one of the specialists about what might be the best thing to do next. I mentioned to her about Dr. Noyes and she said that was who she had planned on getting in touch with. Im not really sure if he will be able to tell her much just by seeing my MRI, but I am really hoping and praying that something else can be done. I am really at my wits end with all of this!! Im only 35 years old, and I cant hardly do anything anymore. I cant drive, and exercise is totally out of the question. I have begun to experience a great deal of depression from everything ive been through, and really feel like I am doomed to being on crutches for the rest of my life. I have tried to use a cane, but the pain and instability just will not allow me to use it at all.

Anyway, I just wondered if anyone might have some words of wisdom about all of this. I know there are a lot of you that have been going through this a lot longer than I have and I am really wondering if any of you have had experience with your OS contacting Dr Noyes to consult with him? At this point, traveling to Cincinnati is really not an option for me. I am a stay at home mom, I homeschool my 2 kids and we live on one income so traveling out of state for 2 or 3 weeks would really be pretty impossible for me. Ive checked with my insurance and they would not pay for me to see Dr Noyes...ive fought and fought with them about it, but they wont give at all. What's crazy is that if I lived in Cincinnati, they would pay for me to see him, but because im in memphis they wont pay...stupid huh??

Like I said, any advice anyone can give would be much appreciated.

Stacey

[skibum9]

Stacey

I don't have any great words of wisdom for you. Just know that there are others following the same path and you are not alone in what your are experiencing.

Last year after surgery #5, I had so much scar tissue. It was like my knee was full of cement. There was only one PT guy that had the strength (or determination) to break it up. I would let all the PTs line up and take a crack at trying to move the patella. It took me months of intensive PT to go from 15-90 to 0-130 on my ROM. Today, I have good ROM, but I have lots of scar tissue in the fat pad area that causes constant and severe pain.

I have experienced the serial casting procedure before. Fortunately, my extension deficit was not as bad as yours so the grown men did not have to push on it. But I have met several folks that did.

How much PT are you doing and what home exercises are you doing?

Sharon

[svanzant]

Well Sharon, as of right now I am only going to PT once a week becuase I have used all my visits allowed by insurance. Luckily my PT is very compassionate and knows how badly I need it so she is giving me one visit a week for free for the rest of the year. At home I am still sleeping in the dyna-splint at night, I am doing weight bearing exercises as tolerated, prone hangs, overpressure extension, and some seated slides that I do with a furniture slide while sitting in a chair. Thats really all I am doing at home, along with trying to walk as normally as possible when I get up to walk anywhere...trying not to give into walking on the ball of my foot and forcing myself to walk heel to toe as much as possible.

[skibum9]

Stacey

I had the PT battle with the insurance company last year. Fortunately, my employer stepped in and allowed the limit to be increased but even that didn't cover all the PT visits. I have been very careful this year because the number of visits had been clearly made to me, but the wording in summary plan description is still confusing. I take it you have an HMO and that's why they will no pay for an out of town visit.

I know it is frustrating and difficult to stay motivated, but just keep doing those home exercises several times a day and ice in between. I'm having a hard time staying motivated to go to the gym. Just too much pain at the end of a work day to do much but plop on the couch.

I had an MRI done a couple of months ago, basically to ease my mind about what's going on. If you read the interpretation, you would have thought it was a perfectly good knee with a couple of minor things. Dr. N said that we really fooled them.

When do you go back to see your OS? I'm interested to hear if she consulted with Dr. N.

Sharon

[bavage]

My research shows that scar tissue build-up can be restricted by diet. It is a long term solution but easy to maintain.

Reduce high carb foods like pasta, potatoes,rice & bread. Stay away from refined sugars like cake, pie, donuts and candy bars.

Consume more veggies, fruits, legumes and nuts.

Reduce portion sizes on red meat but not chicken. Eat more seafood ( not shellfish).

Also,take of chondrontin and glucosomine daily.

I wish you well.

[missmyknee]

Hi Stacy

I am so sorry to hear how much you are suffering with AF. With your patella not moving and your poor ROM have they determined if your scarring has caused you to have patella baja and or IPCS ? If your tendon has shortened and patella all scarred down no amount of PT is really going to help much when you are scarred down to that extent. I had patella baja and IPCS. My OS first scoped to remove scar tissue, then opened the knee to remove scar tissue and finally found my patella tendon adhesed all the way down to the tibia.where he finally had to do a Delee osteotomy to restore my patella to correct position and ROM.. You also had scopes done. You night need an open procedure to get to all the scar tissue and in areas where a scope can't reach. I've had mine removed many times by Noyes thru open surgery. and also lateral and medial releases for contracted tissues on the patella. At least your OS has planned on consulting with Dr Noyes. You might need to at least spend the money to go see Noyes in person for just a consult like you did with Shelborne. In the meantime keep using the dynasplint. hanging weights and slides for flexion. It would be nice if your insurance would pay for the rental of the ERMI for flexion. RSD causes some big problems too. Are you in pain management? Having a good PM doc with nerve issues is important. I don;t have RSD but I do have intractable nerve pain from scar tissue on the nerves. I had 6 neuromas removed in April. and I am on a cocktail of 7 meds to control the many facets of nerve pain. Neurontin is one of them. I also take Cymbalta not for the depression qualities but for the neuropathic qualities this med has. Adding it to the mix was very helpful. I highly suggest getting in to pain management. In addition to my pain management doc, he also has me seeing their pain psychologist since I have dealt with pain and AF for 8 yrs.

It's very hard to keep depression away when fighting AF. I have been fighting it for 8yrs and have had hard times off and on with depression but more so lately when Dr N said I had intractable nerve pain on top of the AF. Your not alone , all of us here know exactly what you are dealing with. I hope your OS's consult with Dr N proves very helpful.

Pam

[stupike]

Hi Stacey

I can sympathise with your problems I too am in my mid 30's and the lack of mobility has made me feel depressed more than the injury itself at times. Not being able to exercise I found was something I missed the most. Strange because I was not a fitness freak in the first place but not being able to work up a sweat and use it to off load some stress did get me down.

My PT recommended swimming as part of my physio, but I soon found that I abandoned the exercises and just swam as it was great to let the rest of my body let off some steam without the extra stresses of overcompensating for the bad knee. I found it was important to look after my general fitness as I am sure everyone here can tell you after a while the other knee, hips and back all start to feel the strain.

I also found hydro therapy very beneficial and would recommend it as the warm water takes the edge off the pain of the exercises, which is great but on the other hand allows you to push harder and further with the physio. I was able to let my hydro therapist bend my leg so hard that she cracked adhesions that had formed after my second surgery, something I am sure I would not have been able to bear on dry land.

Hang in there and use this site as it is wonderful for knowledge and even more so for support.

Good luck

Stuart

[svanzant]

Well, I heard back from my OS's assistant about my MRI and the report says that I have arthritis in my knee and under my patella, but nothing about scar tissue or anything else. I am guessing they just dont know what they are looking at. My OS has requested copies of the films so she can consult with Dr Noyes about them so that is what I am waiting for right now.

I am seeing a pain management doc, and he is wonderful! I actually had a sympathetic block this morning...the 2nd in a week. He is planning on doing one more next wednesday and then we are going to try to go 6 weeks before we do another one. He says I have all the symptoms of RSD, but that it hasnt shown up yet on a bone scan. The nerve blocks usually help for right at 2 weeks and then I start having even more pain, tightening in the back of my knee and all kinds of crazy temp and color changes.

I asked my therapist this morning if I have patella baja or IPCS and she said I have patella alta and no IPCS. I am having a lot of trouble getting my patella to move toward my port that is at the bottom and to the left...it just will not budge that way at all! Today she had one of the techs sit on the floor while I was on the short mat and had him pull my leg to try to stretch or break up any adhesions in the back of my knee, but im not sure if it really did much good or not. After we did that and a few other exercises I now have this fluid pocket that has popped up right in the same area that the last one was in...hoping and praying that it doesnt have to be drained!!!

They have also just recently just put me on lexapro to try to help with the depression some. I tried cymbalta, but wasnt able to tolerate it. I think my feelings of depression are also coming from the fact that because of my inactive lifestyle and 2+ months of prednisone my weight has gone up quite a bit and I feel bad because I feel like I look so bad!! I am also having a lot of down days lately because I love love love to decorate and shop for Christmas, but being on crutches makes it close to impossible...I try to go and use those ride on carts but people are so rude and a lot of times I cant even get down the isles I need to go down. Like I said, its just an emotional roller coaster for me!!

It is good to know that im not alone in all of this! My spouse tries to be as supportive as he knows how to be, but he really has no idea what im going through and I can see the frustration in his face because I am not able to do so many things that we once did together. My in law family also is very unsupportive and likes to make little comments here and there about my condition (that they know nothing about) and really act like they think I should be able to do anything and everything. On a good note, my family is very supportive and help me anyway they can so that does make things a little easier!!

I will try to keep you all updated on what I find out when my OS contacts Dr Noyes.

Thanks again for all of your advice and information!!
Stacey

[svanzant]

Well, my Os has now consulted with Dr Noyes and these are his recommendations at this point. First he wanted me to have a bone density test done (had that done friday), to see just how far gone the bones in my leg have gotten. He wants me to start on Fosamax in addition to the Calcium+vitamin D, and vitamin D supplements that I am already taking. He also has my OS looking for a doc in this area that will do an abmulatory epidural on me so I can try to reduce the nerve plain that I am experiencing all the time. He wanted me to increase my Neurontin to 3 times a day, and try to get my RSD/nerve pain under control. Once that is under control he really wants me to come see him in Cinci. He said that I sound like a classic case, and that he has 2 patients that sound just like me in the hospital right now that he just recently operated on. He told my OS that I will need more surgery, and he will be the one that needs to do it. He said he would give me an epidural, open it up, clean out the front of the knee, flip me over, clean out the back and keep me in the hospital about 4-5 days. He also said that he likes to keep his patients there about 4 weeks so he can keep an eye on their progress. Im not really sure that financially I can afford to be away from home for 4 weeks, and I really dont think I can leave my husband and kids for that long so I am really torn as to what to do. Has anyone had surgery with Dr. Noyes and been able to come home earlier than that? My OS has said that she would do anything she can to help and work with him, as well as my PT so does anyone think there is a chance I could have the surgery and be able to come home after about a week?? I am really feeling so overwhelmed right now...this is really what I know I need to do to get better, but I just dont know if it is realistic to do under the circumstances. My family lives on one income, I homeschool my kids and taking on the financial aspect of this would be almost impossible.

Anyone have any suggestions??
Thanks!!

[catwoman88]

Stacey,

Hi, I've no experience of Dr Noyes but I just had to post - you've probably seen my recent posts I had the surgery that it sounds like they want you to have (unfortunately I've now developed a nerve issue that's not helping me achieve good ROM). All I would say is this would be 4 weeks out of your entire life that you'd have to be away from home for. It may seem like a long time and financially it could be a burden but if it's going to mean that you have better mobility and quality of life well just bite the bullet and do it. What's more important your health or being in some debt?. I am sure your husband and kids would love to see you better and they'd make any sacrifices they needed to so you can achieve this. I know many of the posters on here have had to make large financial sacrifices and get into debt to get the right surgery done and they've not regretted it. If I needed to in the future I'd also take on debt in order to be healthy. I'm also 35 and I know I will do anything to get back my ROM in my knee if I can only get over this nerve hurdle and if it means that I need to travel to see a nerve specialist then I will.

If you really don't think you could manage 4 weeks and if you're thinking not to have the surgery due to this then discuss this with your OS and maybe she can speak to Dr Noyes to see if maybe you could spend 2 weeks there and then she oversee you for the other 2 weeks?. But obviously it would be much better to be with Dr Noyes the whole time as he'd be able to see quicker any issues that arise.

Lianne

[missmyknee]

Hi Stacy


I'm glad your OS had a consult with Dr Noyes. You certainly have a lot to take in and digest. I know what it is like to travel to Cincinnati for surgeries. I 've had to do it for 6 surgeries with Dr Noyes. I've stayed anywhere from 2-4 weeks . I also had to leave kids behind and plan my home situation and plan my own stay in Cinci, however I did not homeschool my kids. They were in public school. I relied on my older married kids to watch their siblings and neighbors, coaches, etc to hlep get them to school, sports, music lessons, play practice, etc. Are you connected with any other homeschoolers ? Maybe they could pitch in to school them or could you possibly handle your kids schooling thru the computer.

It does take a tremendous sacrifice to leave and have this done properly but this is what has to be done to give you the best chance to get a healthy knee back. Unfortunately this comes as sort of a package deal......if you are sacrificing all to do this , then you want to give yourself the best possible outcome and this means staying for the whole time. You are having a very extensive surgery and will need to stay there longer than a week . Believe me, if he says you'll need 4 weeks, he knows best what it takes to give you the best possible outcome. Your knee needs to be observed by his PT staff and by his personal checks on you twice a week, in the PT room, at his office. This means the right adjustments to PT and any further medical intervention can be done when necessary. I've been there enough times for this and would not do it any other way. Sharon/skibum9 has gone thru this too and can attest to the commitment to staying in Cinci to get the proper care. You will need to have someone with you to take care of your needs. I used to stay in a hotel with kitchen facilities. I came upon a corporate apartment leasing co and have been renting a fully furnished apartment with everything, safe and located within 10 min drive, for the last 3 surgeries. It is absolutely an excellent way to stay. I have the website and can give you the info if you want. It was 1/2 the expense of a hotel. There is a hotel near his office that will do shuttle service to his office. There is also a list on his website for out of towners and you can call his med sec. You will be in PT 2x's a day at his office after you are released from the hospital. His PT staff is absolutely excellent ! I hated to leave and go back to my home town PT.

It is a hard decision, sacrifice, and commitment to make and one many of us have had to make, whether it is to go to Cinci, Vail, California or South Carolina , to name a few. It is definitely a commitment. Getting the medical care done properly by someone who knows exactly what to do at this stage is essential.

I hope you can find a way to go to Cinci

Pam

[skibum9]

Stacey-

I have had 3 surgeries with Dr. N in the last 2 years. I have stayed in Cinci anywhere from 2 to 9 weeks (extended stay hotel and corporate housing). I will be back up there in March for another 4 weeks for a TKR. I could probably get away with 2 weeks, but in the event of any complications I'm planning on 4 weeks and will stay longer if necessary.

Based on my experience, the surgery is the easy part. It's the immediate follow up care that is critical to success. In addition to the daily PT, I have had an MUA, nerve block, medication changes, and fluid withdrawn in the few weeks following my surgeries. Since my original OS and PT didn't recognize all the warning signs and previous issues with OSs in my area, I just didn't trust the hometown docs to be able to provide follow up care. I firmly believe that the PT staff at CSM were the ones that allowed me to get my flexion to 120.

In the last couple of years, I think I spent a total of 13 to 14 weeks in Cinci plus around 15 trips up there for follow up visits. I definitely understand the financial issue. I decided that I would spend all the money that I could beg, borrow, or steal (I didn't have to do the latter) in order to get out of this pain and get some semblance of my life back. In my case, I don't have the kids issue, so I can't speak to that. However, I do have to do a lot of pet juggling. My Mom flies in from out west to help me out when I'm in Cinci.

Getting the proper medical care is essential and it's a very difficult decision to make to seek that treatment out of town. It's a huge deal to ask family and friends for the kind of help that you will need if you travel for medical care.

I hope that you can get to Cinci. If you need any info, just ask.

Sharon

[K8te]

Stacey,

I just had a MUA, debridement, menisectomy, and medial/lateral released done in December. I'm not in good shape now and I feel it was due to rough PT. I met with my OS and he wants to take my ACL graft out but I"m not convinced that's the total issue. I have an appointment lined up with Dr. Gill in Boston, but I'm wondering if that's not enough.

You mentioned your insurance company won't pay for Dr. Noyes. I'm not sure you'll have any luck with this but it may be worth a shot to contact the insurance comminisoner of your state. Ask if there is any possiblity they can assist in convncing your insurance carrier to reconsider your case.

If Dr. Noyes wants you to stay for 4 weeks, then I would plan on that. My inury is now a year old. I'm now on my fourth physical therapist since the other's have thrown in the towel. Like I said, I think my PT following this last procedure contributed to the formation of the scar tissue. Everyone that has worked with me has worked hard but they get frustrated with my lack of progress. I won't have another procedure unless I can be assured that I have the right PT involved and there's communication between the doctor and the therapist. It's that critical in my opinon.

I really feel for you and your situation. I have an 8 year old daughter and she's tired of my knee and the limitations i now have. I can't imagine taking care of small childeren in your shape.

I wish you the best. Keep us posted.
kate

[ghost]

Hey Kate,

I'm in Southern NH as well. I'm not sure exactly where you are, but I have a great Physical Therapist, Orthopedic certfied. His name is Mark Collins and he owns Goffstown Physical Therapy. Long story, but Mark took care of me after my second surgery in June of 2008 and he referred me to Dr. Gill when things didn't improve and I'm back treating with him now that I had the third surgery. Mark spent some time studying out of the country where the PT's don't have the finances for the fancy equipment. I questioned why he would do that and he told me that it taught him more about relying on touch and various massage techniques than he ever would have learned in the US. I probably sound like a bit of a poster child for him but he did wonders for breaking up scar tissue and getting my RF muscle in the quad to loosen up and function properly .

Dr. Gill did a microfracture on the trochlear groove along with debriding a ton of scar tissue in the knee and supra patella pouch on December 2nd. I'm on the mend but have a long ways to go. Just in case this doesn't work I have a June appt lined up with Dr. Minas a Brigham and Women's Hospital. Dr. Gill told me the next step for me would be an ACI and suggested I contact Dr. Minas. (this proceedure is only effective with smaller lesions like the size of a pencil eraser and even then only 75 to 80% of the time. My lesion was the size of a 1/2 dollar so the chances aren't tremendous).

I know what you mean about being sick of the knee limiting normal activities. I've had 5 knee surgeries to date with the last three all taking place in less than a year. It's a P.I.T.A. for sure.

Good luck with Dr. Gill, I found him very honest and straight forward as well as being a good surgeon.

I noticed that PlantGeek also posted. She's been down this road with the microfracture and multiple surgeries as well so she's an eqally good source of information.

Sue