December 31, 2013

I posted early in this "diary" around the time of my first ACI, things I had bought or borrowed to prepare for my recovery.  I am reposting the short list here the things that are very helpful. 
1. Raised toilet seat[ftp] - Drive Medical Premium Seat Riser with Removable Arms for Standard Toilets,    purchased on Amazon.  Very good-comfortable, good height, and stable because it is screwed in.  Has arm rails.$34.70
2. Shower seat-white plastic seat, can't find the brand-Amazon purchase.
3. Slip on shoes with rubber bottoms.  The ones I got were pricey, but have held up very well since my first surgery in March.and they show no wear.....The two I purchased are: Merrell Women's Circuit Mary Jane Breeze Shoe ($136) and Ahnu Women's Gracie Flat.-$110 (black suede-these are my dress up shoes!), both purchased on Amazon!
4. a hospital style table on wheels, which I absolutely love, even before the surgery I have been using it bedside or in a chair.  The brand I got is very stable, lifts and lowers easily, is large enough for computer and books, place for cups.  The brand is: Medline Overbed Table, Composite Top-$65.
5.  I rented the "Game Ready" ice machine-my doctor works with a certain company who met me before both knee surgeries at the surgery suite prior to my operation to review how to use it.  It cost $300 to rent for both surgeries. We thought we were going to have it covered under that first payment for this 3rd surgery, but we ended up paying.  I use it all night when sleeping and much of the day.
6. I put a chair (actually the rocking chair I bought for nursing my kids when they were babies) with an ottoman in my room to make it easy to get to a place to sit comfortably.  I actually don't sit in it much, but my visitors do.

December 30, 2013-Post op Day 3- 

Quite a bit of swelling, but no redness or splotchiness on surface of skin which would indicate possible infection.  Felt a bit uncomfortable today (not at all severe -just some dull pain) in area of osteotomy (Fulkerson).  In my own experience, and from reading what others have written, the osteotomy site seems to be a source of pain more than the ACI site.  I have heard that some people find the ACI site painful, but most of my symptoms right on the knee , at least up to this point in time, are related to swelling.  My incision is bleeding in one small spot a bit, so we have been changing the gauze bandage a few times a day-before applying new bandage, we apply a long strip of Neosporin (anti-bacterial) cream along the incision.

 With my first surgery, I was at physical therapy a few times the first week post op.  Due to the holiday (tomorrow is New Year's Eve), and my therapist going on vacation, I'm not scheduled to return to PT or see the doctor (the PT office is at surgeon's office) until January 6.  I may call to request to be seen by another therapist next week, just to have a trained eye monitor my progress.  I did do all my exercises today and take several walks around the house. It may be my imagination, but getting up and about (even for short period of time-15-20 minutes) seemed to decrease the swelling a small amount.

In the early evening, I took a nap, with hopes of escaping the discomfort I was experiencing.  When I woke up a couple hours later, the pain was much decreased and I felt much better. 

I have attached here a photo of both my knees: the right knee scar is barely discernible 6 months post op.  The top part of the purple markings, close to the word "yes", were not cut.

 

December 26, 2013-Today, I had my second ACI-this time patella and trochlea-as well a second  Fulkerson (osteotomy). My first ACI and Osteotomy was on my right leg , this one on the left.  went very well.  I slept much of the day and now have some energy so ill do a quick blog entry and hopefully sleep through the night.

I am getting used to crutches again. I practiced for the week prior to surgery on the crutches. Today I needed to have my husband help me do the minimal walking (car to house, bed to bathroom), but by this evening, the tranquilizers I had requested and other meds wore off and I felt steady enough to crutch the short distance from bed to bathroom-but with my husband in close proximity in case I stumble.

I again have a nerve block which means no pain!  It also means no feeling in my leg/foot. This nerve block should last 2-3 days. I use the "Game Ready" ice machine on and off throughout the day. Right now, I also use a soft stabilizer cuff, which helps to keep leg straight when out of bed.

The ice machine was delivered to the surgery suite before I went in for surgery.  We had initially paid $300 prior to the first of what is now 3 surgeries, and we though the rep said that we would not have to repay for the following surgeries.  That was true for the last one on June, but today he did not give us that deal. I do think that it may have played a part in my past two good recoveries and worth the cost.

I have to sleep on my stomach the first two nights (maybe three-I was groggy post op and my husband got the post op info from the surgeon and nurse.

Advice for any surgery:  bring at least one companion to post op and have them WRITE everything down in detail).

When i was alert before my first surgery, Dr Gillogly had told me the reason for sleeping face down and he said there is a theory that this helps the cells adhere better to patella. I believe he said it is best to lie on stomach in these first day even awake.

The CPM machine (which constantly moves your knee) will be delivered to the doctor's office tomorrow when i am rhere. I have a post off doctor appointment and my first PT appointment tomorrow morning.

I am less anxious than prior to the surgery!  I was so tense and my internist gave me a couple of  Xanax for the 2 days prior to surgery which helped a lot.  Now I am doing ok.  It seems like I'm just going to repeat the whole process of my first ACI.   But, I am not naive.  I know complications could pop up-even though the first 6 months on my right leg have gone very smoothly.......

Day 1 post op from 2nd ACI (patella and Trochlea) and Fulkerson.  The nerve block continues to numb my knee.  I can now feel touch on my toes, calves, thighs. I was a bit alarmed by slight pain behind my knee. I want to "stay ahead of the pain" and I had not taken the Percocet since early morning and it was 9pm when I felt the discomfort.  I took the Percocet at 9pm and 20 minutes later felt fine.  I am not sure of the dosage, but when I get a chance, I will look at the bottle and write it here.  I am a little "dopey" today-I keep forgetting little details like the time of tomorrow's PT appointment, immediately after someone told me.  Otherwise, in good spirits.

My husband is off for more than a week and he is helping me a lot by bringing me meals in bed, helping me move the CPM machine on and off the bed, and everything else. He also stays close to my left side when I am walking on the crutches. When the nerve block wears off and I can "toe touch", then the crutches will be easier.  I am doing fine on them, but like having him to spot me just in case and also i put my arm around his neck and he basically lifts me up and down the very small step at our front door.  My kids are staying with my mom and my brother out of state since the day before my surgery and will return day after tomorrow.

The woman who was supposed to help me when my husband returns to work bailed on us and won't be coming!  She got a full time permanent job (not just for 2 weeks like it would have been for us) and closer to her home.  My first  reaction was panic, but then I decided it is fine.  By the time I would have needed her,  getting around on the crutches should be easier and I may even be driving since they said that with the left leg, I'll be driving quite soon.  I figure if we do some take out food for meals until I can cook again (when I am on one crutch), it will still be WAY cheaper than paying for a helper.  I was going to pay her  $125 a day for 2 weeks!  A really big savings not to have that expense.  I had not wanted her for  eight hours a day, but she lives far from my house and she had said she needed a full day to make it worth her while.  Having someone in your house can be uncomfortable.  And really it is good to save the money for us... So, hopefully this will work out OK.  I do have good friends who can come over to help and do my shopping-A few close friends are also neighbors-and they want to help me.  Plus I have a teenager who can drive.....No relatives in town though...

I had PT and doctor appointment today.  The knee is swollen of course.  The doctor said instead of staples, they used fiberglass tape and glue!  I could not lift my quad at all, but with the  the nerve block it is not clear why.  I did stretches for calves and hamstrings and ankle twirling which protects against clots.  Tomorrow I go back to PT again and then it will be 2 times a week.  I was able to dangle my foot at 90 degrees, so the physical therapist said to do 90 at least part of the time on the CPM machine.  The CPM machine was delivered today-my old friend!!!   Did about 5 hours today on that contraption.

Dec. 28, 2013-2nd day post op:  Physical therapist changed my dressings today. With electric stimulation to quad, I was able to engage quadriceps and to do leg lifts. The ability to lift my leg using quad and also to bend knee more than 90', means I am able to toe touch with crutches.  With toe touch I am much more stable getting around. I am allowed to put an estimate of 20% of my weight onto that foot.  

 This evening, I had less success lifting my leg or engaging my quad too much. I think the electric stimulation probably helps.  I am disappointed about that.

December 29, 2013 3rd day post op:  Last night, I woke up and went to bathroom in the middle of the night.  My husband asked if I needed help and I said I was fine.  But, in the bathroom, I started to feel shaky and hot and in pain.  I had not taken pain killers since before going to sleep and the nerve block was drying up.  On my way back to bed, I just went down.  It felt like I fainted.  Luckily, I landed on my "good" leg (which used to be my bad leg when I had that surgery in June!).  No injuries from my fall.  My husband helped me to bed and I took the pain meds with a little yogurt (never on an empty stomach for me). 
The lesson here I think is 1. ask for help if you feel shaky-even if you feel bad waking someone up and 2. take pain meds regularly-even in the middle of the night if it seems that you may need it.  I will try to follow those rules. I do feel bad waking up my husband all the time.  Luckily, he is off work for another few days-so he can make up the sleep by sleeping late.

Today, I can do the leg raises very well!  Yesterday, I was worried that I had lost some of that ability since my session at PT.  The pain is very tolerable with Percocet every 4-6 hours.  Doing the leg raise exercises, the pain that I feel is from the osteotomy (Fulkerson), where there are a couple screws holding down bone.  Again, it is all quite tolerable, and I don't consider myself someone who has great pain tolerance.  I have been nervous about getting out of bed today, since my fall last night.  I will try to take a tour of my house in a little while, to get the blood circulating and to overcome my fears!

 September 02, 2013 (10 weeks post op through December 26, 2013 (ACI surgery on left knee)

10 weeks post op-I feel very good. When I wake up, before doing exercises, I still feel weakness in quad.  Rest of the day, feel strong and steady. I still do not walk far-but, I feel that I could walk farther than I have in the past-the most that I did was 4 blocks.  I went further than that once or twice shopping at the mall for back to school clothes a couple weeks ago.  Still, that was limited to one 45 minutes.

  I think there is some risk in this time because one could overdue it when pain and stiffness don't automatically tell your brain not to attempt too much.  I guess I tend to be pretty cautious, at least up until this point-I'm not sure if I have been overly cautious in terms of walking.  I really would like to walk my dog-but I chicken out each time I plan it (good for my kids though-they are getting more responsible about walking him without me begging!)  The underdeveloped calf is tempting me to walk more to get that back.  I am trying to be conscious of pushing off my toe in my stride, which engages the calf.  I think that walking unnaturally after surgery and not pushing off my toe in that way (plus being on crutches for a couple weeks) is what lead to the atrophy.  So far, I have not really enjoyed walking, except perhaps for the first minute or so.  I do not like standing for much time and start looking for a place to sit if possible.  I recently took a tour of a group home for teens (a friend is on the board of the program) and I did fine with the walking, but sat down whenever we stopped.

A few times this week, I have felt a pop around my knee that felt good afterward, looser and stronger, although I had not felt any tightness prior.  My guess is scar tissue or something detaching, but I don't know.  I am going to therapy once weekly and the therapist is still working on moving my knee, but I have not had the problem of the tissue around the knee tightening up between those sessions.  I have expanded to a few new exercises:  the "speed skater" movement, where a small band is both ankles and then I kick back with one leg while balancing on the other-both legs.  Sitting on the edge of raised table/bed, extend leg (using the other leg to bring it up-still not supposed to do leg extension using my muscles due to risk of shearing the graft-but I do do this movement at night while tossing and turning falling asleep and in my sleep-apparently ok as long as it is not a repetitive movement according to therapist-no brace needed to sleep). And then keep leg out with quads engaged for 5 minutes.  Lots of balancing on the balance boards.  The first time I did balancing on one leg, ie the operated leg, I was nervous, but felt good afterward.  On the leg press machine (on which the seat moves back and up as you push with feet) I am doing leg press, then calf strengthening with toes on the machine.  They have this machine at the gym where I (try to motivate myself to) work out and swim and do the bike, upper body machines and this leg press.  30 minutes on the bike at about level 5-6 at a quick, but not 'all out" pace, no longer causes swelling.

With the continued and rapid improvements, I am thinking more about my second surgery.  I wish I had the feeling that when the doctor and I agree on a date, we will be able to proceed, but there is the insurance issues to contend with of course.  I meet with Dr. Gillogly on September 20.  I will plan to discuss the next surgery with him on that date.  I believe that there may be another xray that day (?) and consultation with the physical therapist - Gillogly will come to the PT room and observe me with therapist as part of the evaluation.  

September 23, 2013

September 22, 2013-12 1/2 weeks post op- I visited with my OS and physical therapist  2 days ago to discuss my progress and I asked about planning for surgery for the next knee.  The doctor said I am progressing well and this indicates that my graft is successful-at least so far. He said since the change from using a periosteum harvested from bone in the patient's leg to making a patch to covER graft from animal skin (pig) has made a huge decrease in complications and lack of success.  I believe that especially refers to the complication of overgrowth, ie when the new cartilage cells would leak out past the area where they were placed.  I am restricted until 6 months from "open chain" movements.  I am still doing stairs one step at a time. I am strong enough to alternate legs, but this is one of the restrictions.

I asked about planning for the next surgery and the doctor was positive about moving forward wih that.  His assistant/nurse will speak with someone from the office to contact my insurance company.  I am worried about the insurance's response since I had such trouble with approval for the first
ACI surgery.  Dr Gillogly just this week submitted an article for publication (or it was published in the journal-I forget which) re the success rate of patellar ACI in his practice.  Also another review article by different authors was also just published. I hope these will affect the insurance's decision as well as my success on right leg, but who knows.  It would be ideal for me to have he surgery in December so I can get two weeks of recovery over the school break and not have to worry about driving my son for school.  It will be my left knee-so perhaps I won't be limited for driving as long next time.  December is my goal-but I may not have control if the insurance gives a denial.
 
I continue to do occasional walking-I have not walked the dog so far since I did go quite a ways about a week and a half ago.  I had a bit of swelling and a bit of swelling-which may not have been bad for me, but I am so nervous.  It's hard for me to not walk the dog when my family is busy.  Then my son sprained an ankle playing sports yesterday-so now I feel more pressure to walk him.  I can do a couple blocks-but he really likes a half hour at least.  So trying to walk him short distances and encourage those who are not limited in family to take him for some more each day.  I enjoy being outside and walking-weather is a little cooler now-so it is hard to hold off for many reasons!  Meanwhile, I am swimming and enjoying that alot.

 October 03, 2013,

Hi  

Thank you for sharing your journey. It's a help to read the experiences of other and get an idea of whats about to happen.

 October 17, 2013

October 16, 2013-About 3 1/2 months post surgery-I just returned from a 5 day trip with lots of walking and I am pleased that it went well.  I toured 4 colleges in the northeast with my daughter and did all the tours, as well as walked around the towns/cities.  I actually took a crutch with me, so for the first 3 days I used that when I was going to do alot of walking in hopes that it prevent swelling of the knee.  I had no swelling those days.  In NYC, I did not use the crutch and had a small amount of swelling-very minor.  We walked around and did shopping in the city and I felt ok.  I'm glad I went because it showed me what I can do now.  When I returned home, I took the dog for a walk two days in a row and I think that one reason I have some discomfort walking in the neighborhood is due to our driveway being very steep and long.  So, I plan to drive up the hill to take walks in the future. Its actually the knee tht did not get the surgery yet that hurts going downhill, and iI am really slow and tentative on steep downward inclines.


Note: December 12, 2013 I am adding this note at approximately the 3 month mark to be helpful to someone reading this that is planning to have ACI surgery.  I am now at the 6 month mark and planning to have my 2nd ACI surgery in 2 weeks.  I spoke with my PT last week and was dismayed when I asked her about starting to walk stairs one at a time and she replied that I was able to do them at 3 weeks.  The lack of practice with stairs has made it all the more daunting to try this and I have found that I am having difficulty going down the steps using my right leg.  At present, I am unable to do this.  So, for anyone who has had this surgery and is approaching the 3 month mark, I suggest that you consult with your physical therapist if they have not mentioned returning to walking stairs in a normal manner.

In my rehab, the area of my leg that could be stronger are my glutes and hip because I can balance much better on the left leg than on the right.  I still do not do stairs alternating legs (very slow and kind of embarrassing on stairs) and was wondering if this lack of using my right leg to climb is contributing to the weakness.  I have exercises to do for that area-pilates hip sequence and also the skater exercise using a small band.  I still experience quad weakness-but much less-sometimes in the morning and sometimes after sitting for awhile, I will have a brief loss of the muscle.   If I do my exercises that day, it is less likely.  When i was on my trip, I did not do as much therapy exercises.

 October 29, 2013

  October 29, 2013-  It is 4 months since my ACI and osteotomy surgery.  I have begun walking regularly 2-3 miles outside and on the treadmill with very little or no swelling.  I feel very close to normal on the operated knee and am free if pain. According to the protocol, I still do stairs one at a time and do no jumping or running.
     Those of you who read this who are interested in insurance coverage for the patellar ACI or who are planning to have (or have had) this surgery on both knees, may be interested in my progress on getting my second surgeries approved.  I have been worried about getting approval for a second ACI surgery and wondered about my options if the insurance denied the surgery.  Get a knee replacement and give up my dream of being as active as I would like to be for the rest of my life?  Get only the Fulkerson and have the damage contained to the cartilage already worn away, but live with major cartilage damage?  I try to avoid ruminating about it, but it seems bleak....
    My doctor's office began the process to request coverage for an osteotomy (Fulkerson) and ACI after my appointment with Dr. Gillogly on Sept 20.  Two days ago, I received a letter from my insurance company stating that the Fulkerson was approved. That was not a surprise. Then yesterday, I received a letter saying my ACI surgery was denied. I had expected this, but still felt down about it. I hoped that an appeal would make a difference-but was pessimistic-since last time that did not help.... Then today we received another letter saying the ACI PATELLA had been approved. Tomorrow I will call my doctor's office and see if they can interpret the letter. I hope it means that it is approved and we can set the surgery date.
 I will try to restrain my excitement until I know for certain.

December 05, 2013

ACI surgery for left knee scheduled for Dec 26.  I am trying to plan for some help in the house and driving me and my kids.  I am wondering if return to driving will be easier with the left knee.  My rehab for the right knee has gone smoothly and I hope I will have such good luck with the second knee, but I realize that it could be different.

I did an hour hike over Thanksgiving and have taken other long walks since then. I realized by asking physical therapist that I had mistakenly thought I was not to do stairs u tip 6 months. She said I was able to do stairs using both legs, by 3 months!  I am now at 5 months post op so I lost precious time!  It is hard goi g down stairs!  I am going to spend as much time as I can working on this because my right leg will be my "good" leg when I have surgery on left.  My knee has gotten swollen a couple times recently-I am not sure if it is related to hike and walks or the stairs.

December 12, 2013

I am still planning to have my 2nd ACI surgery on December 26.  My revelation about the stairs, ie that I   was able to do stairs at 3 months, continues to be a worry to me.  I have found that I am able to go up stairs using my right leg, but going down is a problem.  I'm not able to do it without holding onto the rail.  Really, I cannot do it and certainly would not be able to do it if my left leg is weak.  I am working on quad exercises and trying to do the stairs daily.  Today, I rode my bike for over an hour including some tough hills.  I love biking, but I feel a bit daunted because I am not back to normal in terms of quad strength.  On the flat surface I don't notice it, but on the steeper hills, it was tough.  I am going to ride as much as possible leading up to my surgery.  The weather is cool, but with warm clothes, it is fine (I am in Atlanta).  Definitely experiencing anxiety about how it is going to go given that my right knee is not back to normal, but excited to proceed with the process of the 2 ACI's, rehabilitation, and hopefully a return to being as active as possible.  Some of the anxiety is also that the date has been set so recently and I only have a couple weeks to prepare.

I have arranged for someone to help me and do some housekeeping and cooking for 2 weeks.  I do not know if I will be able to drive more quickly since this will be my left, non driving, leg, but hoping that will make it quicker.  My kids will be on school break when I have surgery, so we arranged for them to visit with family for 5 days and then when they return, my husband will be off work and we will also have the person to lend a hand.  We have no family in town and this time my mom will not visit, so we have decided it is a worthwhile expense to have a person to help.  She will drive me to daily physical therapy appointments once my husband returns to work on the 3rd and also drive my son home from school each day.

December 20, 2013

This week, I have practiced stairs one at a time and have adapted well. I hold on to the rail, but it is not difficult..... I have not had as much time as I had hoped for strengthening exercises, but have been practicing with crutches and doing the stairs each days, continuing to do stationary bike, leg weights, and other exercises.  I had meant to also do exercises with weights on the left leg, which is the leg that will have the surgery next week, but have not done it.  In general, I am doing very well at 6 months. If I do not do some weighted exercise, ESP if a couple days pass without exercise, the quad can feel less engaged every once in awhile.  When I do strengthening exercises, my muscles feel the best.

August 15, 2013. 7 weeks post op

7 weeks post op ACI and Fulkerson- Last week, I had a 6 week appointment with the doctor. He said I am ahead of schedule for my recovery in terms of swelling and muscle strength.  He gave the physical therapist (who met with us) the go ahead to start walking without crutches.

Right after the 6 week mark, I went on a vacation for 3 nights to Key Largo where I spent the day at the pool while my family went diving.  I got a wheelchair at the airports and that was helpful.  I would not have gone on the trip if I had to walk through the Atlanta airport.  First of all, we did not have to wait (stand) in the security lines, I was not up to walking far distances, particularly at the huge airport in Atlanta, and I avoided being in crowds of people where I could possibly get bumped or knocked over.  I highly recommend the wheelchair option.  I had just started walking without the crutch at home a couple days before I went away, but I used the crutch on the vacation when we were not in our hotel room.  I went in the pool and swam around using my arms. My doctor had said I could flutter kick, but I must  keep my legs straight. No "breast stroke" style kicking.  I found kicking more difficult than I had anticipated- my leg was stiff.  So, I held onto the side of the pool and kicked gently.  I was not careful enough on the beach and one evening I stepped into a hole in the sand with my newly operated leg which was scary and briefly painful. Luckily, I was using the crutch and that prevented my falling to the ground.  My knee hurt slightly, but felt better quickly-for which I was thankful .

At 7 weeks post-op, I would say it is not ideal to go on vacation.  I am glad we went because I wanted to have a family experience (and not stay home alone!), but if I had had control over time, I would have waited a few more weeks.

There are lots of new PT exercises at 7 weeks for me.  In addition to what I have been doing (quad stuff, leg lifts, a series of hip exercises "Pilates", and stretches for calf, hamstring, and quad) they added the following:
1. Ankle Weights for the hip exercises, 2. leg press machine, 3.balance board-2 legs and then 1 leg, sitting down and then back to standing, 4. plank and 5. side plank.  The standing and sitting are hard for me-partly because my "other" knee hurts when doing this.  I asked to use a platform to sit on so I am higher up and don't have as far to go.

I also went to the gym today and rode the bike for 30 minutes, somewhat vigorously with a bit of a higher level of resistance.  Then I swam laps for 25 minutes mostly using only my arms. I tried kicking, but it was somewhat painful in the knee and I am afraid to take any chances.  I feel glad to be doing exercise, but tired because I have been so sedentary!

My knee has improved alot the last couple days-less swollen and more flexible. Still, I like to use the crutch when going places where I may walk far (my quads or my knee does gettired/slightly sore at times) or where there will be alot of people. The crutch serves as a sign for others to be careful around me. Another way to signal "caution" to other is to wear a brace or a compression stocking (they have mesh black ones at PT), but my doctor has said not to wear the brace anymore.  One thing that has surprised me is that even when I am using a crutch or wear the brace, how people will not slow down near me or will "cut me off" -like at the grocery store or other crowded places.  It is unnerving.  I have started going to the grocery store without a crutch, but I don't shop for as long as I may have in the past. 

I feel best after I do the exercises that work the quad.  When I first wake up, sometimes my thigh muscle gives out and I almost fall, so I keep the crutch by the bed for when I wake up.  The swelling has decreased alot, although not back to normal yet.  Sometimes it feels a bit warm and I usually ice it when I exercise.  The scar has started to mature and is not too bad.  There is no noticeable difference in my leg muscles-ie, the operated does not look atrophied. Because the improvement in my strength, swelling and pain have been rapid recently, I think my stamina and strength will continue to improve in the next few weeks.

July 29, 2013. -5 weeks post op

It's just about 5 weeks post surgery.  Tomorrow I will go to PT and I think I will go to one or no crutches.  It will be helpful because with 2 crutches, it is hard to carry anything.  Ill be more independent, although I hope my kids will still help out as much as they have up till now.  It's good for them and been a nice break for me from household chores. But, again, I do worry about putting weight on my knee!  I realize that if the doctor approves more weight bearing, then it's ok and I should not hesitate...

I have had some renewed pain the last couple days. Nothing terrible-and mainly when I do exercises.
 I think it is because I slept with my knee propped on a pillow. I hope that it is not an indication of any setbacks on the graft.  It is hard not being able to know for sure.  I may be overly anxious about the knee-more than others in my situation.  I do find myself worrying about the ultimate success of the surgery, especially when there is any new pain.  But it could very well be nothing and I know that too.  Perhaps the biggest challenge wih the ACI is psychological-because it is slow progress and one must wait some time before finding out if it will "work"! 
  I hadn't wanted to take pain pills because I had some stomach upset from the Percoset, but I finally did just now after 2 days.  I decided that I need to do the exercises well (especially when i go to the physical therapist to orrow) and also that if there is inflammation, that its best to decrease it.

A very positive note is that I have going to the gym and riding the bike and doing upper body weight machines.  I am approved by my doctor to swim, so I hope to try that soon.  I am nervous about the slippery pool area on crutches and getting in and out. The doctor had said its ok to kick (straight leg flutter kick), so I can see if that is comfortable. I also thought I might purchase something to float both legs and the. Just swim with my arms in crawl stroke.  I could do a combination. I am really looking forward to starting that!

*update on this post:  the pain in my knee was due to tightened tissue and adhesions around the patella. During PT visits, the therapist always "mobilizes" the patella back and forth and up and down.  That loosens the scar tissue and   I had missed a week of therapy because my therapist was booked up and I don't do the mobilization on my own.  After two or three visits to therapy, the knee felt good again.
(http://www.kneeguru.co.uk/KNEEnotes/courses/arthrofibrosis-rehab-tutorials-dirk-kokmeyer-pt-scs-comt/patellar-mobilisation-part-2-set)

July 19, 2013-23days post op

23 days post op:  Today was my first day driving and it was no problem.  I still have to use crutches to walk, so I needed my teen son to carry my purse and walk my dog on the leash when we went to the vet and then I waited in the car when he went into the grocery (with my credit card!) to get a few things because I did not feel like crutching around the store.  I have been out to eat twice and went to one birthday party for about an hour.  I realize that some people would go back to work around now and I can see how that would be ok-especially if one could stay seated and prop up the leg as needed.  I think if I were doing more walking and not able to prop my leg-I may have to ice more. As it is, I only ice after doing my exercises.

It is getting a bit "old" being on crutches-but I hope it will be worth it. All I can think about is whether the new cartilage will be healthy and strong and ultimately successful. 

July 11, 2013

On Monday, which was one day short of 2 weeks post op, the physical therapist added just two things to my routine: ie more hip work that are related to Pilates moves. I already did a side leg raise of my operated (right) leg, while lying on my left side. Now added also leg circles with legs parallel and also kicks.  Will only go to PT 1x a week until 4 week mark when I thi k I will be doing more weight bearing.  My knee looks great-less swelling today, pain not bad but I take a pain pill half hour before I do the CPM machine. As this recovery has been surprisingly smooth (so far!) it starts to seem possible to do the other leg at 6 weeks post op. but I will not be making any decisions for awhile.

I reread some posts related to patellar ACI and was relieved to see that others who have had this surgery in past year or so also reported a relatively aggressive protocol of higher CPM degrees and weight bearing than they had expected. I continue to go to 120 on CPM and use crutches while putting some weight on right leg (20 lbs) which is similar to some posts I just read.

July 4, 2013

Yesterday, I went for my 10 day appointment.  The nurse took out my sutures-which hurt a bit-but not badly! Sylvia, who is Dr. Gillogly's assistant, seems to be a pro at removing them.  Dr. Gillogly has fellows working for him.  Dr. Shue has been his fellow since I have been going to that office and for both surgeries.  She assisted on both surgeries, although he said that fellows do not do the ACI's, only him.  She probably did some of my osteotomy this last time though.  She is finishing her fellowship and will work for Kaiser here in Atlanta, where they are starting an Orho program (or an enhanced one-something is new about it) and she seems excellent. I was sorry to say goodbye to her because she always comes by during PT and seems very smart and is also warm and friendly. 

 They confirmed that it is fine for me to do the high degree of range of motion on the CPM machine-no risks for to the patella graft. They explained why, but I don't clearly remember the details-it related to where the graft is.They recommended I continue on the CPM for 4 hours a day.  I already have max ROM, but it is good for scar tissue and also, there is a belief (per Dr. Gillogly and I also read this) that the cells learn from the CPM movement, where the cells should settle to accommodate bending and normal movement of the knee.  This is a theory that I don't think they know the exact reason for.   I can use the brace at home, but don't always have to.  I do not have to sleep in it, although I can if I toss and turn alot.  The movement I must avoid is going from a bent to a straight knee.  For example, if I am sitting with my leg dangling and then straighten my leg.  I must use my other leg to straighten it, but coming under the leg and using it as a support.  The brace can be uncomfortable and so I will use it less, although I am nervous about inadvertently twisting or unbending, so I won't stop using it completely at home.

The protocol for me has been surprisingly different from the Cartilcel/Genzyme packet I received, from protocols online such as the Brigham and Women's rehab (http://www.brighamandwomens.org/Patients_Visitors/pcs/rehabilitationservices/Physical%20Therapy%20Standards%20of%20Care%20and%20Protocols/Knee-Autologous%20chondrocyte%20implantation.pdf), and from the link that Vickster shared here, as well as the protocol described by Grace.  This could very well be because the patella ACI is one of the newer ones (of a new surgery!) but also perhaps Dr. Gillogly is using more aggressive rehab that he has found works well.  He has been doing alot (relatively) of the patella ACI's.  So the higher range of motion, not sleeping in the brace, weight bearing soon after surgery, etc. Because I have been doing so well in terms of pain and range of motion (sorry I keep repeating this), I may be able to drive next week.  I would use my left (good) leg for brakes, to protect the graft on the right. 

The hardest thing about this surgery for me, in light of the fact that my recovery has been very easy so far-minimal pain, good range of motion-is waiting to see if the "graft" worked.  I was discussing my hopes for the 2nd knee and Dr. Gillogly said that I have to make certain that this surgery worked for me.  He is in general very encouraging and positive-but that is a fact.  I had an xray yesterday and saw the screws from the osteotomy and everything looks great, but the xray does not show the cartilage.  Dr. G said there is a type of MRI that shows the cartilage clearly from a procedure like this one, but it is not widely available and insurance won't cover it.  So, most of the diagnosis of the success of an ACI is from the patient's functioning: ie a poor outcome would be if the patient has difficulty walking later in the process, etc.  

I do have confidence in Dr. Gillogly.  He is a respected surgeon and also has a very nice manner - easy to talk to and does not seem in a rush from the first time I met him.  I personally do not mind that he has fellows helping him.  To me that shows that he is dedicated to teaching and if I were at Emory here in Atlanta or at another teaching hospital, fellows would be involved too.  This also means that he has to keep up to date on the latest research and techniques since he is teaching new practitioners.

The last thing I will add is despite a low level of pain, I still do take pain medicine throughout the day-mainly for exercise, particularly for the CPM machine, and also to sleep.  Last night, I tried to go to sleep without meds and ended up taking them.  I may be able to move to just Alleve, but at present I am taking one one 325 mg Hydrocodone and one Alleve(which is supposed to last 12 hours).  I don't worry about overusing meds for any reason except that I have a sensitive stomach and have already had a bleeding ulcer-and both the prescription and non prescription meds can cause stomach issues!  Also, in my first or second post op post, i said that I wished I had practiced with the crutches.  I think my problem the first couple days was more weakness from having had surgery. After those first days and since, using the crutches has been a breeze.  I do not have any steps though in my house which helps.

« Last Edit: July 06, 2013, 09:52:31 PM by ozzie »

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ACI patella surgery and Fulkerson with Dr. Gillogly June 25, 2013
Extensive cartilage damage in both knees due to misalignment of patellas

July 4, 2013

Tomorrow will be one week since my surgery.  I have a PT session and I do have some questions-mainly I just want to review and have everything written down. It seems very important that I am absolutely certain how to do things and what the limits are so that I do not damage the new cartilage.

 I have been told that I can put up to 20 lbs on my right leg.  Also, that I can do as high of a degree of ROM on the CPM machine as I am able-and I am able to do unlimited-120 and beyond.  Even though the doctor and the physical therapist approved this, I just want to review it again, because this protocol is not the same as the more limited one I had expected and I want to be absolutely sure I am not doing anything to damage the graft!  The computers have not been working at the office, so the therapist has written things down and some things she just said verbally without writing them down and I did not take notes.  The first day, my husband came with me and he did take notes and one thing was that I should "not go from bent to straight" which we think meant when I was ambulating, but I am not positive!  So, I have been keeping my leg straight most of the time.  They had said I should put on my brace in locked position and then can unlock it, which means it can bend.  I want to review all of it though.  I am doing amazingly well thus far, with the pain managed well with the medication that I am taking about every 5 hours still.  I have lots of energy and am reading, writing, watching movies, letting my family wait on me, and taking crutch tours of the house several times a day.  When friends visit, I am able to sit in the family room with my leg propped up on coffee table and socialize easily.  It may be a neurotic, overly anxious thing, but I almost feel like it is too easy and hope that the ease does not mean that the graft did not take!  I guess everyone with this type of surgery (ACI, denovo, etc) will wonder how the graft looks and I can't have a xray/mri for quite a while I guess....

July 1, 2013. 1 week post op

Tomorrow will be one week since my surgery.  I have a PT session and I do have some questions-mainly I just want to review and have everything written down. It seems very important that I am absolutely certain how to do things and what the limits are so that I do not damage the new cartilage.

 I have been told that I can put up to 20 lbs on my right leg.  Also, that I can do as high of a degree of ROM on the CPM machine as I am able-and I am able to do unlimited-120 and beyond.  Even though the doctor and the physical therapist approved this, I just want to review it again, because this protocol is not the same as the more limited one I had expected and I want to be absolutely sure I am not doing anything to damage the graft!  The computers have not been working at the office, so the therapist has written things down and some things she just said verbally without writing them down and I did not take notes.  The first day, my husband came with me and he did take notes and one thing was that I should "not go from bent to straight" which we think meant when I was ambulating, but I am not positive!  So, I have been keeping my leg straight most of the time.  They had said I should put on my brace in locked position and then can unlock it, which means it can bend.  I want to review all of it though.  I am doing amazingly well thus far, with the pain managed well with the medication that I am taking about every 5 hours still.  I have lots of energy and am reading, writing, watching movies, letting my family wait on me, and taking crutch tours of the house several times a day.  When friends visit, I am able to sit in the family room with my leg propped up on coffee table and socialize easily.  It may be a neurotic, overly anxious thing, but I almost feel like it is too easy and hope that the ease does not mean that the graft did not take!  I guess everyone with this type of surgery (ACI, denovo, etc) will wonder how the graft looks and I can't have a xray/mri for quite a while I guess....

June 28-48 hours post op

48 hours, plus: I am now writing three days in a row-which I won't keep up-but i have to comment on the minimal amount of pain i have had so far.  I have had the femoral nerve block medicine still going-I carry it in a little pouch that goes on my shoulder or my neck like a necklace.  I reduced the speed of release for the medicine as of this morning, just to keep it going as long as possible.  It looks to be getting pretty low now and I am starting to feel more in my leg.  I was numb for about 36 hours and really this afternoon, more than 48 hours after surgery, is when I have started to feel some pain.  I guess because of the medicine and numbness, I have been able to achieve very good degree of knee movement.  I use the constant passive machine CPM about 4 hours each day-actually more, because I am trying to take advantage of this time with so little pain where I can hopefully prevent scar tissue and encourage blood circulation in the knee/leg, which is good for the graft.  The degree of knee movement is at 110 degrees!!!!  When I had the arthroscopy in March, to harvest the cartilage, I could barely bend at first and absolutely could not engage my quads.  Today, I was able to lift the leg using the quadriceps (ie not compensating by using hip muscles) and we added straight leg lifts to my PT exercises, along with hamstring stretch, calf stretch, heel prop (prop it on a thick foam so that the leg straightens-not so comfortable, but therapeutic)., and ankle pumps (moving foot around, "drawing letters" in the air with toes).

  I am walking on the crutches a few times a day around the house and to the car when I have to.  I have only gone out of the house to go to PT this morning and yesterday morning. My husband keeps reminding me that I have to get up and move some so that I don't develop blood clots and to keep circulation going. Today, I was fitted and given my immobilizer brace that I will be wearing for 6 weeks to 3 months.  So far, it is not uncomfortable.  I have heard from other people I know and read on this site that the brace can be painful if it pushes into tender areas. 

I know there may be some challenges ahead with rehab, but the lack of pain and the quick initial progress has been great! 

June 26-preparations I'm glad I made

I may already have listed the things that i purchased prior to surgery that are helpful, but if not, I would like to share my suggestions.  I got many of the ideas from other peoples' posts.  I bought most, if not all the stuff on Amazon.  Most are really reasonably priced-the shoes are expensive!

1. Raised toilet seat[ftp] - Drive Medical Premium Seat Riser with Removable Arms for Standard Toilets,    purchased on Amazon.  Very good-comfortable, good height, and stable because it is screwed in.  Has arm rails.$34.70
2. Shower seat-white plastic seat, can't find the brand-Amazon purchase.
3. Merrell shoes-I got a few to use for the duration of rehab (and rehab for my next knee eventually)  My favorite is: Merrell Women's Circuit Mary Jane Breeze Shoe ($136) and also I like another pair :Ahnu Women's Gracie Flat.-$110, purchased on Amazon too! 
4. a hospital style table on wheels, which I absolutely love, even before the surgery I have been using it bedside or in a chair.  The brand I got is very stable, lifts and lowers easily, is large enough for computer and books, place for cups.  The brand is: Medline Overbed Table, Composite Top-$65.
5.  I rented the "Game Ready" ice machine-my doctor works with a certain company who met me before both knee surgeries at the surgery suite prior to my operation to review how to use it.  It cost $300 to use for both surgeries.  I have submitted the receipt to see if insurance will help with cost.  This is an amazing invention!
6. I put a chair (actually the rocking chair I bought for nursing my kids when they were babies) with an ottoman in my room to make it easy to get to a place to sit comfortably.

**July 29-I am adding a couple more thoughts here about planning for surgery.  In retrospect, I am very glad that I accepted offers of help from family, friends, and neighbors.  Several people brought meals, a couple friends drove me around, and some people brought treats, and I have had visitors that came to chat and refill my ice machine, make me a snack, and keep me company.  I had hesitated at times when people offered to help, not wanting to put anyone out or burden anyone, and I highly recommend to accept all offers!  People want to help and it makes a big difference. It was really nice for me and my family to have the meals that people brought over.  It's very very helpful and also nice to know people care.  Even if you only have one or two offers of help-it can make a positive difference. 

Also, I have enjoyed my time reading and watching movies I got from Netflix -stuff I don't do enough of normally. But, I found having a visitor stop by each day or a few times a week- to be a mood booster, and kep me from feeling isolated.  Some people offered to visit-ESP my closest friends-but I also asked friends who live in my town to come over for an hour or so, if I was needing some company. 

June 26-first PT session

I went to PT for the first time today (day after surgery).  I saw the fellow who works with the doctor and will see Dr. Gillogly day after tomorrow.  I still am numb and not in pain.  I am trying to take advantage of this time with no pain to get used to the crutches.  Also, in PT today, I bent my knee at 90', which may not happen once the pain develops.  I just now am using the CPM machine-"constant passive motion"for the first time and I am going to try to get it up to 90' today.  Again, once pain meds wear off, this will likely be uncomfortable, but right now I can do it easily.  Its good to bend it to prevent against scar tissue build up and also develop flexibility that will help my progress.    I took some Percocet today because I have a bit of feeling coming back and very slight pain.  i have read the knee geek/guru diaries and posts related to the ACI and the Fulkerson, as well as other knee surgeries, and everyone says stay ahead of the pain.   I had just read a post by someone who had the same surgery (on the website: "knee geeks") about her post op experience and sounds like once she started to regain sensation, the pain came on quite quickly (and her nurses were not on the ball and she suffered for that).  I am at home and in control, so I am starting the pain meds now!!!!

I thought I would have more limitations, but today the PT said I should be driving before 6 weeks, which is sooner than I had expected.  Also, I can touch my foot down on the ground when I am standing, to help with balance., which the physical therapist said with other areas of the knee for ACI, the protocol is to not bear any weight in the beginning.

There is one small stair in front of our entry door and this morning and yesterday I was so scared to lost my balance on it, that I had my husband pick me up and over the threshold (so romantic)!  But at PT today, the therapist said I can put right foot (the one that had the operation) down as I do a stair or something harder, as long as I put all my strength into the crutches and not put much weight down on that foot.

June 26-ACI surgery-1day post op

I had my ACI AND Fulkerson surgeries yesterday morning.  The doctor was Scott Gillogly in Atlanta.  The location was in his "surgery suite" next door to his office. I had two nerve blocks, femoral and sciatic, so 24 hours later my leg is numb (although I can move it- to swing it over to get out of bed, etc.  (I am using my thigh muscles though, not the quads, which  are hard to engage because of the block).  Today when I go to the office to meet with PT and the doctor/nurse/and or fellow, they will refill the little ball with the block medicine and so I should have relief for another 24 hours.  I think that will be the femoral block only. I will also see my phuysical therapist (PT is also located at the office which is especially good for ACI patients because the therapist are well trained for the ACI protocol working with this doctor.

So I've been feeling well all day yesterday and woke up this morning well too.  Dr Gillogly said to lay on my stomach as much as possible so that gravity helps the patch to adhere.  I have my "cuff" for icing and squeeze,although I can't feel it!  Also a soft brace to help me keep knee straight.  I will soon get the more "serious brace-perhaps today that I have seen the ACI patients wear in PT.

Feeling very excited to be finally "moving forward"

Insurance issues

May 21, 2013-after a disappointing and frustrating 2 months, where my insurance issued multiple denials and stonewalled any communication, I did get an approval for the lab -ie growing cells at Carticel.  We knew someone at the insurance company and that person helped us to talk to administrators.  Based on the fact that I already had the first surgery, they approved it.  I need the left knee done too-so I hope that we will be able to approve that when I am ready.  My husband's office may change insurance companies (he has a say in it because he is a partner in the business)-which might be helpful....My understanding is that this insurance has approved ACI patella surgery through Carticcel and including through my doctor's office. The problem is how difficult they make it to communicate after a denial.

I am cautiously excited to move forward and I have surgery date for June 18.   My doctor is not in network and had been approved for both surgeries in network (United Healthcare had approved that easily and quickly-which made it even more surprising when things became difficult with them)because he is the only doctor in my area with experience with ACI surgery (and the PT's who work in the office are trained in rehab for ACI as well).  So now it has to be reap proved and I hope that does not have any complications that will change the date again.  I hope to be posting in a few weeks about ACI rehab and not about insurance. (:

More post op from arthroscopy

11 days post op from arthroscopy:  The recovery from this is probably good learning practice for the ACI surgery.  I have had to work quite a bit to get the quadricep to "engage" reliably.  Sometimes walking, it suddenly gives out.The quadricep takes awhile to come back and the PT exercise (leg lifts) hurt a bit and were not so easy. I am not talking about bad pain, but the pain that is there impedes the exercise I realized, so I took Advil an hour before my last session and it helped alot.  It was a very fruitful session.    I had a "break through" that made things alot easier.  I was doing exercises for the quad-straight leg lifts, with electrodes on and suddenly it felt like the muscle jumped.  When I walked afterwards, it was much easier to ambulate smoothly.  After that I could straighten my leg better and my range of motion (heel to the hamstring) was measured at 125, much improved from two days before.  I walked with crutches for about a week and then 1 crutch for few days.  At home, I don't use any crutch now, but  I keep the crutch with me to go out of the house-I am much quicker with it.  i am still walking slowly, but feel better doing so.

I do not yet have a date for the ACI surgery.  I am awaiting approval now for the surgery.  The doctor's office insurance person told me that it should be easily approved, since the first surgery was related to the second.  I hope she is correct.  She was supposed to contact me Friday about it, but has not.  So, I have my fingers crossed.  I want to know the date, so my husband can plan time off and I can arrange some help.

One month post op from arthroscopy harvesting-By this point, I should be back to normal, but my knee does not bend when walking as it should, although I can bend it completely back (heel to butt) when not walking.  I put on a knee brace that I have used in the past to prevent pain when walking and it does seem to help.  So, I think the knee may be "loose" and moving down in a way that prevents me from bending easily when standing up.
April 4, 2013-My ACI surgery has been approved by my insurance (United) and my surgery is scheduled for April 30th.  I have been very lucky that my insurance has been cooperative so far.  They allowed me to have Dr. Gillogly do the surgery as an in network doc, with in network deductible for me,  although he is out of network!  This is because he is the only one in town who has done more than one or two of these surgeries.  I was very grateful for that and for this approval. 

I will now plan for the surgery date and the weeks to follow by arranging some help at home and driving help for my kids.  I am going to interview a caregiver to come for a week so that I won't be alone in the beginning of my recovery and so that I will have someone to drive me.  My friends have offered to help, but I know they have busy schedules and so I would not be able to count on someone here as much as I might need. My mother will come stay with us for a few days when my husband is off from work, the day of the surgery and a few days after.  She can't drive or help me around (or catch me if I stumble!) because she is getting older  and has post polio syndrome.

 I have been trying to get all my household errands and projects finished.  I brought a comfortable chair into my bedroom and got an ottoman for it.  I already had purchased all the health stuff like toilet riser, leg lifter, shower chair, comfortable slip on shoes (Merrill's) which have already been helpful after the arthroscopy.  I am trying to plan some fun social stuff with various friends in the next two weeks as well as getting organized.   I hope to use my forced inactivity during recovery from the knee surgery to take a professional workshop or two online-I need to take several courses in order to reinstate my professional license (clinical social worker) that I accidentally allowed to lapse.  Hopefully, I can be somewhat productive post op and catch up on things I have been to busy to do in the past.

Introduction-March 12, 2013 (originally published elsewhere)

I am creating this blog/diary in hopes that it will be helpful to others who are planning ACI surgery.  I found reading the experiences of others to be very helpful to prepare for the surgery and to understand the range of outcomes. This surgery is being developed and he outcomes are increasingly more successful.  So, the experiences of people who had the surgery even a couple years ago may be less relevant than he most current ones-since the techniques for surgery and the rehab protocol are changing based on research and outcome studies.  I also published this diary on the website:  kneegeeks, so it is possible that some things I wrote might briefer to that website and seem out of context. I will try to edit to avoid that confusion....

I am planning to have ACI surgery on both knees-one at a time.  I don't know how spaced apart the surgeries will be.  I know that people have done two ACI surgeries and survived, but it is difficult.
I will also have a Fulkerson procedure which is when the patella is moved forward and up because of misalignment.  Misaligned patellas are the reason why the cartilage on my knees has worn away severely in a few places down to the bone.

 I am having an arthroscopy March !2 (6 days from now) to "harvest" cartilage for ACI surgeries.  I have had knee pain for 10 years and was told by 4 orthopedic surgeons that it was chondromalacia and there was nothing they could do.  My understanding is that my patellas are in the "wrong" place (outside the center) and have worn away the cartilage completely in some areas (probably would have been less damage if I could have had the patellas moved 10 years ago-not sure why that did not happen).  I live in Atlanta which I am now especially happy about because one of the top surgeons for ACI knee surgery, Dr. Gillogly, is here and he will perform the surgery.  

I have very much appreciated the blogs that i have read online and on kneegeeks.com.  I know that everyone progresses at a different pace, but it is very helpful to have some info from others who have had the same surgery.  The ACI surgery is for "younger people", ie not for those in their senior years who would have a knee replacement.  I am on the older end of the age spectrum for this surgery-It is done on people up to about 55 years old and I am 49.  Hopefully, I will be able to move along in rehab as well as the younger folks!

 I have purchased some of the items recommended on a some of the blogs I have read!   I am trying to lose the weight I have gained being inactive prior to surgery and also to strengthen my quadriceps, which seems like it would be helpful for rehab...  I know many people have their injuries as result of "trauma"-I have not seen any blogs/posts with a history like mine, ie, wearing away of the cartilage over time.