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Author Topic: Daughter having Fulkerson procedure  (Read 6415 times)

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Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #45 on: January 25, 2009, 02:34:55 AM »
She did fine getting her staples out -- she wants to be a trauma surgeon so she has been very interested in all of the procedures and how things are done.  She has seen all the scoped pictures of the inside of her knee, x-rays, MRI, etc.... so it was no surprise that she watched each staple being removed and took pictures on her phone!  The OS and staff get a kick out of her because she's not your usual patient that way.  She says this would be a much more  interesting case if it weren't happening to her!  ;)

She's weight bearing more and getting around with one crutch when it's just short trips.  She's off the percocet now and just taking advil.  The swelling is minimal but she's still off her leg quite a bit.  The pain can still get bad at times but she's dealing better with it.  She officially has another week off of school but she may try to go back for 1/2 days by mid-week.  She has an internship at our local hospital and that's a lot of walking and standing for almost 2 straight hours, so she won't go back to that until mid-February. 

Thanks everyone for asking about her!!!

Hope you guys are all doing ok too. 
Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #46 on: January 27, 2009, 03:28:05 AM »
Any tips on how to get comfortable at night with the immobilizer?  My daughter can't seem to sleep much at night - it's not so much pain, just achy and fidgety and can't find a good way to lay.   ::)  She's off any pain meds except 2 advil at night. 

Thanks.
Heidi
Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline dimples3887

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Re: Daughter having Fulkerson procedure
« Reply #47 on: January 27, 2009, 07:06:22 PM »
Ok...I will attempt to explain how I slept for the first few weeks. I am a side sleeper so I don't know if this will help or not.

If laying on the surgery side, I had a flatter pillow under my knee going toward my foot to take any stress of the knee or ankle.  Then I had the other leg across my body (passing over the surgery leg) and I had a pillow underneath it as well so my back didn't get screwed up.

If I'm sleeping on the non-surgery side, I put my body pillow kind of between my legs so my surgery leg didn't hit my non-surgery leg.  Try to make sure you always support the ankle as well because the strain of the immobilizer pushing in places it shouldn't push, such as the ankle, is really uncomfortable as well.

I hope that helps.  I know the immobilizer is really uncomfortable and takes some time to really master sleeping with it.  Just try lots of pillows in different positions and when all else fails, try a recliner if you have one. :)
21 yrs. old
LK: 6/02-LR(fail)
     9/05-MRI shows patella bone bruise
     12/15/05-Medial reefing, LR, patella debridement (fail)
     TTT to be scheduled after RK TTT rehab is done...
Pain, clicking, and crepitus in both knees now...
RK: 11/19/08 - TTT

Offline KW

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Re: Daughter having Fulkerson procedure
« Reply #48 on: January 27, 2009, 07:10:05 PM »
Best thing I found was 2 advil PM's and to sleep in a recliner.  I took me probably 2 months to be able to sleep on my stomach after each of my Fulkerson's

Karen
Right Knee
2000 - 2002 - Scope,LR,TTT,Unscrewed
01-10-12 - PFJR

Left Knee
04/07 TTT/LR
08/07 Bone Grth Stim
10/07 Loose/Bent Screw
1/08 Unscrewed/MRI~NON-UNION
02/19/08 Lt  TTT Revision W/Graft
12/09/08 Scope
05/15/09 Scope
09/04/09 PFJR/Unscrewed

Offline adlottis

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Re: Daughter having Fulkerson procedure
« Reply #49 on: January 27, 2009, 09:51:49 PM »
Sleeping was a tough one, I am a sleeper on my stomach and so that didn't work at all.   So what I did was similar to what Dimples did.  This is just a tough one, I'm not so sure I ever did perfect this one.  I just kept changing positions but it seemed the best was to cross good leg over bad leg and sleep on side as best I could, I would wake up with pain in areas that seemed to be pressure points, but it was better than no sleep at all.

Annette
1976 first dislocation 10 years old
1980 14 yrs old LR, MR, remove chip bone
1980-2005 numerous dislocations
March 2007 Proximal/distal realignment, chondroplasty
July 2007 MUA
July 2008  synvisc
Sept 2008 patellar tendon tendonitis
June 2009 hardware removal, LR, debriedment

Offline birdmommy517

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Re: Daughter having Fulkerson procedure
« Reply #50 on: January 28, 2009, 05:51:26 PM »
Heidi,

(For other readers, Heidi's daughter and I both had Fulkersons on the same day, but mine included a lot of extra stuff too.)

Hi Again... It sounds like your daughter and I had a lot of similar experiences at the beginning, but she is certainly way ahead of me with her recovery now! If it makes her feel any consolation, you should have her read that last post of my thread where I replied to you... I am a very young 30 and healthy, and I think she *is* ahead of the game probably because she is 17! For whatever that's worth....

I really wish now that I could have been online reading your posts all along the way. I also had that pulling "gremlin" sensation, and still am having it. And the itching, and the heel pain, and the excessive pain that the Dr.'s seem to think I was making up... Someone mentioned unable to tolerate a blanket on the foot- me too! It puts pulling pressure which pulls on your leg and hurts.

I hope you didn't get a cryocuff unless she could try it first. Mine caused a lot of PAIN because of the extra weight/pressure pressure, and I chucked it off after a few days. I thought it wasn't working, but it's just that I have nerve damage and could not sense the cold except for in one tiny spot. You know what we did? I bought those reusable bags from WalMart for like $4 each- the ones with the screw cap you fill with ice cubes and re-use... Then we filled them with a water/alcohol mixture so that when they are frozen, it is just slush that you can easily shape to fit where you want it. We made two, and just rotate them in and out of the freezer. It says to only fill them with ice cubes, but with the alcohol it keeps anything sharp from forming that could tear the inside of the bag. I started with about 2 cups water and 1 cup rubbing alcohol, but then tinkered a lot. Pouring a little out and adding a bit more alcohol to make it softer or a bit more water to make it harder/slushier, I was able to get it just so. It's probably going to depend on which % alcohol you start with, and how cold your freezer is.

This is my ice bag! Exactly the same! $4 at WalMart or similar...


Is she still having the heel pain? I am! LOL... I try to stagger 2 pillows to make one longer pillow that is a bit shallower at the thigh and at the ankle. Then, I try to just have the pillow end at my ankle right up against the heel, but not under it, so the heel is kind of left hanging. This REALLY helps! Curving one of those ice packs underneath to cradle my heel helps a lot too. That hurts at first, but if you can do it just until the skin is numb to the touch (~15 min), it provides HOURS of relief from the heel pain afterwards.

I also normally sleep on my stomach because I have mild sleep apnea and snore terribly otherwise, so being on my back really is awful, but I have little choice. I ordered a "pure sleep" retainer that is supposed to hold your jaw forward to prevent this very thing, but it won't arrive for a few more days. I can side sleep with complex pillow and leg arrangements, but it's just not worth it for the extra pain it causes when I wake up.

I don't know if your daughter had the amount of nerve damage that I did or not... But on the surface of my knee, every few minutes I often feel what's like a little tiny hot poker- like a tiny needle of flame in my skin, then it disappears back to numbness. I think this is the nerves coming online briefly as they heal. I know we always thought nerves don't heal, but they do, just slowly.They said a lot of my feeling will eventually return. Too bad it's only the skin... It would be great if the whole knee were just numb!  :D

So, I'm so sorry Heidi to hear all that she had to go through. I'm sorry, but this surgery kind of SUCKS, LOL... But the bone part improved so quickly for me. It's all the rest that's made mine worse.

As a sidenote, I experimented at one point and tried seeing how much weight I could comfortable bear... I got to about 75% before feeling pressure, so I stopped. This did not hurt my knee, but made everything else hurt like crazy for 2 days (like even more than it did already!). The Dr.'s assistant told me to knock it off and stay flat with my leg up though. So again, the fulkerson is not the problem. It's all the other tissue work that seems to take even longer to heal... I'm going to be a good girl and keep taking my tea from now on.

Please tell your daughter that I'm super happy for her!! I WISH this procedure was available with I was her age... They wanted to do a surgery when I was 14, but this one wasn't available yet. The one they offered would not even prevent another dislocation! So, I waited. She's just lucky to be born in a time when this WOULD be available to her while she is so young and at the peak of her body's regeneration and healing abilities.

Heidi you are so supportive in your ways... Your daughter is very lucky to have you!  :)

So, congratulations and I hope we keep in touch!

Charlotte

Offline adlottis

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Re: Daughter having Fulkerson procedure
« Reply #51 on: January 28, 2009, 10:32:24 PM »
Charlotte,

You are so right on with alot of your advice.  I agree I wish this surgery was available whe I was 17 it would have saved me lots of grief.  All thiey did then was LR, it didn't fix my problem and I went on believing for years that dislocations and subluxions were just going to be a part of my life.  Which they were and then I saw an OS that could help me, although I was thinking an easy in and out procedure, he told me it only had a 30% success rate for people with my problem.  So we opted for the big surgery and then some additional work on top it (LR, MPFL, and chondroplasty)

Take care all,

Heidi glad your daughter is moving right along. 
1976 first dislocation 10 years old
1980 14 yrs old LR, MR, remove chip bone
1980-2005 numerous dislocations
March 2007 Proximal/distal realignment, chondroplasty
July 2007 MUA
July 2008  synvisc
Sept 2008 patellar tendon tendonitis
June 2009 hardware removal, LR, debriedment

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #52 on: January 30, 2009, 06:59:45 PM »
Hi guys - sorry it's been a couple days since I've been on - my daughter had her 2nd PT appt on Wednesday and he was more aggressive with the exercises since she's been doing so well ... now she is in terrible pain, lots of swelling & can't do any but a couple of the home exercises.  :-\  The original plan was for her to go back to school on Monday - I just don't see how she can do it!  She's not sleeping well at night (even took a percocet on Thursday night because the pain was bad), can't get comfortable and is just miserable 24/7 right now.  I think part of it is that this setback has played with her confidence at getting better/normal again -- she is a stubborn kid & had her recovery all mapped out according to what the OS said and I think the OS is VERY optomistic & aggressive with where should would be and by when.  Her PT made her feel like she was whining & failing at her recovery because she wasn't back at school yet.  Have these people ever had this surgery done to themselves????  I wonder.......... 

Annette - thanks for your post and the hints for sleeping.  I do think she is very luck to have had this surgery at a young age!  Hopefully this will allow her to dance again & live normally without all the worry & pain like before.  I can't imagine what it would be like to have just live with it at her age!

Dimples & KW - thanks for the posts about sleeping positions.  She'd rather not take any sleep aids at this point, so she's trying different pillow combinations/positions.  I did break down & purchase a wedge designed to keep the legs raised - she is finding that much better to have her leg elevated but not so much helping her to sleep.  She's  a stomach sleeper (not anymore!) and just really wants to go back to that, but can't.  We do have a recliner which is where she is for most of the days, but at night she wants to be in her room.  She may try it tonight though as she's losing patience with everything else !!

Charlotte - Wow, thanks for your informative post!  You have had a much rougher time of it than my daughter and I'm sorry it's been so hard for you!! 

No, we didn't get a cryocuff .. we did what you did - I went out & bought ice bags with gel packs and rotated them as needed.  One of them I found has straps to wrap around the knee area (it's also pretty big so covers part of her shin area too) and because they are gel packs in them instead of ice, they 'form' around the knee/leg to cover better and not hurt anywhere.   

No, she's not still having the heel pain.  But she is having a lot of knee pain around where they reconstructed the ligament.  Her shin doesn't seem to be bothering her all that much either -- it's mostly all around the knee/knee cap area.  Her whole leg is swelling though - her foot doesn't fit in her shoes right now which hasn't happened since the first week. 

As for nerve damage - she still has a lot of numbness around the large incision.  Every once in a while she gets the firing feeling and still some 'gremlins' too, but it doesn't seem to bother her that much.  I agree wtih you that the bone issue is not the problem - it's the other stuff.  I am just trying to reassure her that this too shall pass & making her feel that it's OK not to be ready to go back to school on Monday.  I will do what is comfortable for her - she's not a slacker and I know if she's not ready, she is really not ready!  She's been keeping up with her schoolwork so it's not like she's weeks behind either! 

I hope your recovery continues & calms down a bit ... you are dealing with more than my daughter and you're right ... this surgery just sucks!  But hopefully you are all onto bigger & better things and this will be just a distant memory at some point!!!   ;D

She did just hear that she got accepted at one of her top choice colleges & was offered a scholarship as well!  That was such good news amidst all of this & really helped to boost her for the day! 

We are attempting to take her tonight to a school sporting event because it's a big game & she really, really wants to go.  I think it will be great for her to be out & among all of her friends.  I'll be there (but not sitting with her as that would NOT be cool!) if she needs me, but she's so looking forward to it!! 

Take care everyone,
Heidi


Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline dimples3887

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Re: Daughter having Fulkerson procedure
« Reply #53 on: January 30, 2009, 11:26:10 PM »
Heidi-

Tell your daughter congratulations on the college acceptance and scholarship! That's great to hear and probably a welcome piece of good news at this point.

I'm sorry to hear she had a set-back.  If she is experiencing swelling and pain, then I think this is finally her body literally making her slow down.  I think I would sit down and have a heart to heart with the PT and tell him or her that she just needs a little more time.  Everyone takes rehab differently and at different paces, but they need to know that he confidence in herself is a lot from them telling her she is doing a good job, regardless of the outcome, as long as she is putting forth effort.  There is no reason that a PT should have the right to tell someone that she is whining and just complaining.  She will take the rehab much better if the PT continues to encourage her and tell her that she is doing as much as she can right now.  If she is pushing herself too far, it will result in the set-back that she's stuck in right now.  Honestly, just tell them what happened and that she needs motivation and a steady pace that won't result in a re-inflammation.  Again, there is NO reason to cause a patient that much pain and swelling following the exercise session.

I hope that she has fun at the game.  I know that was the only thing I wanted in the first few weeks once I started feeling better was to get out of the house even for just a meal.  I hope that she starts to feel better and find a way to sleep that is comfortable.

Good luck with everything and keep up updated!
-Kirsten
21 yrs. old
LK: 6/02-LR(fail)
     9/05-MRI shows patella bone bruise
     12/15/05-Medial reefing, LR, patella debridement (fail)
     TTT to be scheduled after RK TTT rehab is done...
Pain, clicking, and crepitus in both knees now...
RK: 11/19/08 - TTT

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #54 on: February 01, 2009, 06:55:30 AM »
Hi Kirsten & everyone....

Well, the night out did wonders for my daughter!  She was at the game for 2 hours (standing the whole time) and was fine.  Her leg was swollen & she had pain but nothing worse than it usually is at night after being up & around.  She FORGOT about her leg for those whole 2 hours!  She went out again today & was able to do her ROM exercises tonight.  She's feeling more comfortable with what her body can & can't do and I think the PT pushed a little too hard last time, but I think she realizes that it's hard but not harmful.  She definitely needed a little push out of the nest & now that she experienced that (and did ok), it has given her a new incentive to keep pushing through this recovery.
There is a definitely a mental side to this recovery as well as the physical side --- support & motivation are so important!

Thanks!

Heid

Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #55 on: February 01, 2009, 05:28:57 PM »
Question .......

My daughter is experiencing little pain but a lot of swelling of her lower leg.  Her foot is so swollen that it won't fit in her shoe & she says when she walks she feels like it might pop because it's so swollen.  This is new & different ... she has it elevated but wants to continue to get out of the house once a day but doesn't want to make it worse.  She's supposed to go back to school tomorrow for 1/2 day.  Is this normal??

Heidi
Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline KW

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Re: Daughter having Fulkerson procedure
« Reply #56 on: February 01, 2009, 05:39:08 PM »
Hi Heidi,  The answer to your question is in your last post....She was WAY more active and up on her leg with the night out and this is going to cause increased swelling.  When she is up and about the increased fluid has to go somewhere and gravity takes it DOWN into her lower leg.  Hate to tell ya it will take a little while to go away with it elevated.  Have her do ankle pumps to help move the fluid out.  She also may want to think about Ted hose or a Ace wrap when she goes back to school to help control the additional swelling.

Don't forget to ice (20 on 20 off)

Karen
Right Knee
2000 - 2002 - Scope,LR,TTT,Unscrewed
01-10-12 - PFJR

Left Knee
04/07 TTT/LR
08/07 Bone Grth Stim
10/07 Loose/Bent Screw
1/08 Unscrewed/MRI~NON-UNION
02/19/08 Lt  TTT Revision W/Graft
12/09/08 Scope
05/15/09 Scope
09/04/09 PFJR/Unscrewed

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #57 on: February 01, 2009, 07:03:35 PM »
Hi Karen,
Yeah, I figured that, but was surprised that she didn't have increased pain too.  I guess that's why I thought it might not be normal.  Thanks for reassuring me that it's due to her increased activity.  I guess it's a double edged sword right now - she wants to be out & about but will have some price to pay (either swelling, pain or both) ?!?!  She's out again for a little bit - just to a friend's house but it's "girl time" before the Super Bowl (which is definitely "boy time"!).  I'll remind her about the ice too --- she's not nearly as dependent on me anymore (a good thing! ;) ), but consequently I don't know what her routine has been either! 
Thanks Karen!
Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal

Offline adlottis

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Re: Daughter having Fulkerson procedure
« Reply #58 on: February 01, 2009, 07:16:11 PM »
Heidi,

I too had enormous abmounts of swelling, I couldn't put my foot in any shoes, I wore flip flops everywhere, and then was able to move to Tevas that had adjustable straps.  I did go to Target and buy a cheap pair of shoes, that were a size bigger than i normally wear, I would often feel like my foot wanted to curl to the side.  It does go away but for me it was 4 weeks before i could wear a normal shoe, but the knee continued to swell.  The main thig i can say is  I know she wants to get back to normal and I applaud her for wanting to do that but when she isn't doing anythng she needs to ice and elevate, if you wait for later, later will never come for there will be something else to do later.  This will be very important when she heads back to school.  She need to get the leg up and iced when she gets home. 

Annette
1976 first dislocation 10 years old
1980 14 yrs old LR, MR, remove chip bone
1980-2005 numerous dislocations
March 2007 Proximal/distal realignment, chondroplasty
July 2007 MUA
July 2008  synvisc
Sept 2008 patellar tendon tendonitis
June 2009 hardware removal, LR, debriedment

Offline heidi63

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Re: Daughter having Fulkerson procedure
« Reply #59 on: February 01, 2009, 07:24:57 PM »

I'm going to post & update my daughter's recovery on the Post=Op Diary thread:

"Daughter's TTT, MPFL Reconstruction & Lateral Release on 1/14/09"

I'm having trouble keeping up with the three different threads I started.

Hope you to still keep up with all of you!   



Annette -- Thanks for your post!  Yes, I will make sure she follows the ice & elevate as much as possible.  I may have to get her a cheap pair of shoes as well - she's in slip ons right now but it's a struggle.  We're still in winter here so at least another month or two of having to wear shoes & not flip flops.  She, however, would LOVE the flip flop option anytime!  I'm concerned about school, but we'll see how it goes.  They will have a chair in each classroom to keep her leg propped up & she can have ice anytime from the nurse. 
Take care,
Heidi

Daughter's History:7/96-LL:broken tibia,disloc KC8/07-LK: arthro surgery-remove part synovium 9/08: RK: severe KC dislocation9/08-1/09: RK: sublexes,maltracking,patello alta,weak collagen1/09: RK: TTT, MPFL,5/09: Fractured right knee cap - immobilizer for 7 wks,continued pain-12/09 hardware removal















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