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Old 07-07-2005, 08:17 PM   #1
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Location: Detroit, MI
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AmySLE HB User
Question Cystic Fibrous Dysplasia

I am a regular member of these boards however, I spend most of my time here in the Lupus section as that is what I have been dx. with. My question is have any of you ever heard of this particular disease my sister was dx. with this as a young child and now as a grown woman of 32 it appears that it has returned. Since her original dx. was so many years ago and we were both very young we do not have a lot of knowledge of what this is... Over the years since she has encountered many additional health problems and the little info we have found indicates that this may be the original cause. Any info or suggestions would be very appreciated.

Thank you,

Amy
Detroit,MI

 
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Old 07-08-2005, 07:53 AM   #2
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annemv HB User
Re: Cystic Fibrous Dysplasia

Yes Amy,
I have had the same problem. Diagnosed with FD at young age,then just went on with no problems. Then I turned 30 and things really went down hill.
I am trying to figure it all out.
I now have a huge kidney stone, pituitary tumour (wacked hormones), osteoporosis starting, hypoglycemia.....
I know that this is all related but it is virtually impossible to find a dr who knows how to figure any of this out.
What kind of problems is your sister having?

 
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Old 07-08-2005, 01:37 PM   #3
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Re: Cystic Fibrous Dysplasia

Hi Amy! Welcome to the bone boards.
There are several posts throughout this board discussing Fibrous Dysplasia.
I have been through a clinical trial at NIH for this disease and was diagnosed with a different more rare disease, but with similar issues of bone pain, swelling, and breakage.
There are more doctors out there than you think, but you have to search for them. Several knowledgeable people here on this board.
Post questions or have your sis start posting - it might make her feel better to know there are others out here with the same problems.

One crucial element is she needs to have a full endocrine workup. Gland issues (thyroid, parathyroid, and pituitary, etc) are very common with this bone disease.
Hope to hear back from you or your sis soon!
hrtofluv

 
Old 07-08-2005, 01:46 PM   #4
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stine HB User
Re: Cystic Fibrous Dysplasia

Hi hrtofluv,

I am 31 and getting a tonsillectomy next month. (Scared to death!) I just saw your post on the tonsillectomy site and thought I'd ask you a couple of questions. First, do you know what type of procedure they used on you? (Cauterization, laser, dissection, or coblation?) Second, what did your pain feel like? (a really bad thoat infection, burning, throbbing, etc.) I am just trying to prepare myself here... Also, was it tolerable with the pain meds?

Sorry for so many questions- I am asking everyone and anyone at this point.

Thank you, Christine

 
Old 07-09-2005, 06:57 AM   #5
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AmySLE HB User
Re: Cystic Fibrous Dysplasia

Thank you for your info. My sister has diabetes and Hosimoto's both of which affect the endocrine system these are things that we have known for a while now my biggest concern at this point is that she is having ploblems with the same leg that this originally started in her right foot is not getting proper circulation, is swollen and it hurts to walk on that leg. About six months ago she had some x-rays done and they showed a few small spots in the bone that appeared to be black and look like they are filled with soap bubbles. Is there any treatment out there for this that can help to control the progression before it gets worse? As a child she underwent surgery to remove the one cyst that had destroyed a large portion of bone in her lower right leg and then a series of bone grafts to replace it. This was done through the shriners hospital as my parents were unable to afford her care. Are there any places out there that will help her even though she does not have insurance? I am sorry for all the questions I know it is a pain but please if you can point us in the right direction it would mean the world to both of us.

Thank You,

AMY

 
Old 07-09-2005, 08:23 PM   #6
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osteoblastoma

I am 47, and have an osteoblastoma in my femur. It is large, covering 60% of the bone right in the neck.

I have found some very frightening information, due to it's size, is ther anyone with any info, or experiance? I go in for surgery in four days and am frightened.

 
Old 07-14-2005, 08:29 AM   #7
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hrtofluv HB User
Re: Cystic Fibrous Dysplasia

Amy,
Sorry that so many are jumping in on your post that have nothing to do with FD.
People - please start you're own post if you want answers.

Anyway - the description of the xrays are similar to mine - the soap bubbles as you stated are the cysts - they call them cystic lesions in most radiology reports. Did you happen to get the radiology report - it would be informative as to their take on the progression of her disease. I can tell you that now that my Hashi's is more under control (went undiagnosed for 6 years until May 2004); I am having less pain in my bones with known tumors.
Shriners is a GREAT place to go and if she can get back in there, they should be able to work with you. I also participated in a FD study at NIH in Bethesda, Maryland - they will often times perform any surgeries there after the initial evaluation. I would try to look into the FD clinical trials there as well as see if any are being done elsewhere. Not sure how far Maryland is for you. There are some new drugs that are being tried (mostly bisphosphonates) - I did a year's worth of Aredia infusions, but it did not help me (but remember I don't actually have FD as originally thought). Also - I know several folks who take a form of this drug called Fosamax. They are seeing some halting of the tumor growth by using some of these drugs. A clinical trail would be wonderful though if she can manage to get in one.
Please continue to post (or have her post) with updates and questions. Let her know that there is support online for her!!!

Last edited by hrtofluv; 07-14-2005 at 08:30 AM.

 
Old 07-14-2005, 02:36 PM   #8
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stine HB User
Re: Cystic Fibrous Dysplasia

Amy
I sincerely apologize for "jumping" on your board and posting unrelated issues. I had no idea that it would offend some people. I truly hope that it did not offend you. Best of luck to you and the problems that you are dealing with.

hrtofluv
Last week YOU posted on the tonsillectomy board and said that if anyone had any questions about TONSILLECTOMIES that we could find you at "the bone board." I had no idea that this would be a problem, as you were the one that suggested it, and I never would have done it otherwise.

Sorry for any inconvenience (Amy.)
Christine

 
Old 07-14-2005, 02:39 PM   #9
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hrtofluv HB User
Re: Cystic Fibrous Dysplasia

Christine - I didn't mend to offend you either. Just post a new message to me and I will answer any questions you may have. I just should have stated it better in the post - tonsillectomy post.
I have started a new post to you under general health for your answers.
Hrtofluv

 
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