It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Bone Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-19-2008, 09:21 PM   #1
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Question Surgery for Fibrous Dysplasia - Experience?

Over a yr and a 1/2 ago I was diagnoised w/ FD (in the illiac crest). At the time I did not want to do surgery and decided to just watch it instead. At this time, however, after multiple follow-ups etc my dr has suggested that I really consider having it removed as it has continued to be quite symptomatic and has caused multuple fractures. Has anyone had experience w/ this surgery? My dr has told me that I'd essentially be out of commission for 3 months. After that time, I'd be able to start physical therapy. He said I wouldn't be able to resume a normal level of activity for 6 months. I'm a very physcially active person, so this timeline really does not thrill me. Is this timeline accurate? Has anyone recovered more quickly?
Thanks for your help,
KPS

Last edited by kps; 01-20-2008 at 10:32 AM.

 
Old 02-07-2008, 11:02 AM   #2
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Hi! I was originally diagnosed with PFD. I had several surgeries and eventually got a different diagnosis. Post back if you want more info or read through some of my older posts describing my surgeries.
I'm here if you have other questions.

 
Sponsors Lightbulb
   
Old 02-07-2008, 06:49 PM   #3
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Re: Surgery for Fibrous Dysplasia - Experience?

hrtofluv- thank you so much for your reply. Yes, I would love to hear more about your sugeries. Where were your tumors? And what was your experience/ recovery like? What was your final corrected diagnosis? My tumor is in my illiac crest. My orthopedic oncologist wants to remove the portion of affected bone and replace it w/ bone graft & cement filling. He has told that I'll be completely out of commission for close to 3 months and then be able to start PT after that. He also said that I shouldn't expect to return to a normal level of activity for 6 months. I'm a very active person, so I'm hoping he's airing on the side of caution w/ that number, but that perhaps it will be shorter?? Any advice or experiences you could share would be much a appreciated.
Thanks so much!
KPS

 
Old 02-08-2008, 02:34 PM   #4
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Well, my first surgery was to place a rod down my femur with screws to hold it in place in my hip. The major scar is across the buttocks with two smaller ones for the screws on my hip and thigh.
I did not get bone grafting then. I had the surgery the later part of March and was playing volleyball that summer. Granted I wasn't quite the spiker I used to be. But by the end of summer, I was back to my old self.
It was wild because I really didn't have an idea about the surgery or anything. I was told on Thursday that I had this tumor down the length of my femur and I was in surgery the following Tuesday. It was alot more intense than I had thought. Pains are somewhat better - I think I still get microfractures (more intense pain) and I just rest for the day. But you will have to learn to walk again. To get to the bone, they have to pull your muscles apart and they lose all memory of what they are suppose to do. Now, granted because I was rather athletic, it came back rather fast - I hated the crutches (still on them at 8 weeks when I went back to work). But much better than the walker or cane I started with - ha! With PT - it comes back rather quickly.
As for the bone grafting...hope it works for you - it didn't work for my elbow.
I think with you being atheletic - it will be alot easier for your recovery. You could be playing sports again by the summer if you get your surgery now!
Write back if I haven't scared you off too much!

 
Old 02-10-2008, 08:06 AM   #5
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Re: Surgery for Fibrous Dysplasia - Experience?

hrtofluv- thanks again for your response. I hadn't really thought about the relearning how to walk part, eek! Oh well, I guess like you said being as athletic as I am should help speed up that process. What was your immediate post-op recovery like? How many days were you in the hospital? How long were you stuck at home/ bed ridden after getting home from the hospital? At what point were you able to reasonablly get around on your own? Run small errands etc? At what point did you return to work?
Thanks again for your help!
KPS

 
Old 02-12-2008, 01:26 PM   #6
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Let's see - it's been a couple of years ago now.
I was in the hospital for a week. I was allowed to rest with a catheter the first 24 hours. The next day - they came in and wanted me to stand. Know those facts for certain. The rest is vague though, but went something like this:
Next day - take a few steps with a walker. Next day - walk to the door and back with a walker. Next day with a walker - down the hall and back. Next day - the same. Same the next day. I really think that's about all they could do at the hospital - the walker helped with stability cause you can lean over it. I think I went from walker to crutches. It was double crutches to start with cause I remember having a small spill on a rainy day when I went back to work about 8 weeks out. Staples came out at 2 weeks and made it much easier to sit. I still kinda sat more on one side.
Did PT for about 8-12 weeks after the hospital. Went from crutches to a cane and then finally solo. As I said, being athletic - I think it comes back faster. But it is a long road to healing.
Just remember that you may have to give up a couple of months (or 4-6); but in the long run it is for the best and it will help you to get back to your athletic self without the pain you are having now. I would do it again in a heartbeat. The before was miserable, and now I get out and do whatever I want. Only problems are really when it rains.
And it took over 6 years to get the right diagnosis (but I can understand). Apparently, I'm the only one that has been diagnosed in the US at this time. The doctor who took charge of my case at NIH (Maryland) ended up writing about it in the Journal of Musculoskeletal Research (or something like that). I have angiomatosis of the bones (looks the same in xrays and ct as FD). The difference is that instead of fibrous tumors, they are blood-filled tumors. The both kinda work the same way. Inside the bone growing until the bone breaks. But at least it's non-malignant.
Here's wishing you the best in your decision!
Remember that I'm here for you for questions before or after surgery!

 
Old 02-12-2008, 08:12 PM   #7
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Re: Surgery for Fibrous Dysplasia - Experience?

hrtofluv-
Thanks so much again for all your responses and time. It's really helpful to hear the perspective of someone who's been there. To answer your question from the other thread, yes I had a full body bone scan and no other tumors were found.

I find myself constantly going back and forth w/ my decision. Initially when first diagnosed, I decided to just wait and watch the tumor. My Dr. was fine w/ that, so that's what we've done. At my last apt in Dec., however, my Dr. advised that in light of recent fractures and increased frequency and duration of painful episodes that I really consider doing the surgery. He in no way said I had to do the surgery, however, he thought that at this point it was probably the thing to do.

My quandary is this... I am not in pain all the time. When it is bad, it's very bad and usually last for appx. 2 wks (though the most recent episode was 5 wks). When it's not bothering me, however, it is really quite asymptomatic and I could have an entire month (occasionally even close to 2!) feeling just fine. It is at those times that I have a really hard time justifying doing the surgery and putting myself through 6 months of rehab. On the flip side, when I in the middle of a 2-5 week cycle of such intense pain that I can't sleep, am very uncomfortable (and tired!) at work all day and if anyone so much as accidently brushes against my left side I nearly pass out, I am about ready to take the nearest sharp object and cut it out myself.

Did your pain ever come and go like this? What would you do in this situation?
Thanks again for all your help,
KPS

 
Old 02-13-2008, 08:58 AM   #8
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Post-op recovery was ok - I don't like taking pain pills cause it distorts everything. They started me off with a morphine pump which I did not do well with. Yes - it took all the pain away, but it gave me a worse migraine and total urinary retention once the cath was removed. So, I went off it after the 2nd day and went to a hydro.
You really need someone with you for the first couple of nights. I wanted to move my leg into a more comfortable position, but my muscles couldn't. My mom stayed with me at the hospital and she would get up to help move my leg wherever I needed. The pump did help those first couple of nights.
The car ride home was not fun either - take some pain med before you leave. But once home - stayed more on the couch and could get to the bathroom and back. After about a week out - I was going out with the friends for short drives and drivethru food. Staples out at 2 weeks and much better after that. Started driving about 6 weeks out (but left leg, so I didn't need it for driving) and 8 weeks back to work.
Hope what I remember helps you out. I had this during my mid-20s during my dating life. It did hamper that for awhile. But I had one sweetheart that came and visited me often during my hospital stay and I hadn't dated him in 2 years. The one I was currently dated couldn't deal with it, so we called it quits before my surgery. Never saw him again - no flowers, no get well cards, nothing. So it proved he was a loser. The guy who impressed me that week in the hospital by bringing me whatever I wanted is the one I married 15 months after my surgery.
Remember - you will glad you did it and love the fact that it is over 6 months from now when you feel great. And 6 months is short when you are looking at living your life to its fullest for the rest of your life.

 
Old 02-17-2008, 08:06 PM   #9
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Re: Surgery for Fibrous Dysplasia - Experience?

hrtofluv- thanks again for all your posts. one more question for you... before surgery, how constant was your pain? Were you in a lot of pain all the time? Or only every so often?

One of my problems w/ justifying this surgery to myself is that I am not in pain all of the time. It definitely comes and goes and I can even go a few weeks w/o much discomfort. Granted, when it is painful (which can be for up to 5 weeks at a time w/o a so much as a pain free moment) it is very painful! During the times when it is realitively ok I have a difficult time accepting that this is something I should do. When it is bad, however, I am ready to cut it out myself! Was your experience anything like this?
Thanks again!
KPS

 
Old 03-13-2008, 07:34 AM   #10
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Sorry been away from the boards with a sick kid.
How have you been doing? Made a decision yet?
I didn't get the option of elective surgery - it was get it or your bone will shatter case. But yeah, the pain did come and go. When I told the doc about the days of severe pain and not being able to stand - he said that was when I was getting micro-fractures across the femur.
So - just think - do you want the surgery now when it's just a help or when you need it cause of repair fixing the damage from waiting?

 
Old 03-16-2008, 09:29 PM   #11
kps kps is offline
Junior Member
(female)
 
Join Date: Sep 2006
Posts: 29
kps HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Hey Hrt,
Thanks for checking in. I hope your kid is feeling better! As of yet, I have not made a decision. The first Orthopedist I saw said the same thing as your Dr. ie. that my bone could shatter at any moment and that I should stop all my regular physical activities if I didn't have it removed asap. After that when I saw an orthopedic oncologist he said he didn’t see any reason that I should need to stop my regular activities as long as I was comfortable. So to date, that’s what I’ve been doing.

Unfortunately, at the moment I’m about at 10 days into a bad “episode” and I know I’m looking down the road at probably 4 more weeks of a lot of pain/ discomfort before it gets better. So currently I’m leaning more towards doing the surgery. Unfortunately, life isn’t really permitting taking “time off” at the moment so I’m thinking I will hold off until the fall when life will calm down a bit for me. So that’s basically the update. I’ll let you know what I ultimately decide. Thanks again for all your help and for checking in.

 
Old 03-18-2008, 08:48 AM   #12
Senior Veteran
(female)
 
Join Date: Jul 2003
Location: Oak Ridge, TN, USA
Posts: 648
hrtofluv HB User
Re: Surgery for Fibrous Dysplasia - Experience?

Just think though that you could be almost 2 weeks post surgery instead of dealing with a bad episode. Recovery for the removal was much quicker. Wishing you the best until fall or whenever you make a decision! And hoping this is the only bad spell you have until then!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
questions with Fibrous Dysplasia leslieml Bone Disorders 1 05-18-2008 08:14 PM
fibrous dysplasia question... kps Bone Disorders 3 10-27-2006 07:00 PM
Need to Know??? Trudy31 Bone Disorders 0 07-09-2006 04:28 PM
Need help with finding a specialist Fibrous Dysplasia NatalieJ Bone Disorders 5 08-12-2005 10:17 AM
Cystic Fibrous Dysplasia AmySLE Bone Disorders 8 07-14-2005 01:39 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



janewhite1 (14), MountainReader (5), booboo31 (4), justbecause06 (3), jennybyc (3), hrtofluv (2), slenderella (2), SirMack (2), Touchet (2), james079 (2)

Site Wide Totals

teteri66 (1166), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 01:51 AM.



Site owned and operated by HealthBoards.com
Terms of Use 1998-2014 HealthBoards.com All rights reserved.
Do not copy or redistribute in any form!