New Member- Anyone Else Have Fibrous Dysplasia:temporal Bone

Hello Samrella,

First, I do not have Fibrous dysplasia of the temporal bone.

I did however do a rapid search of the internet on the subject of this rare disease. There is quite a bit of information on this disease and some case studies as you may already know. One thing that I noticed in reading some of the web sites was the repeated recommendation that the person having FD receive medical attention (surgery if needed) from a recognized medical expert. The concern being that a surgeon not experienced with FD would not understand the best way to do things. I hope you understand what I'm trying to say.

I looked for a forum on FD but at this time have not found one. I'll continue to look around a bit.

I hope others with FD will come forward so that together you can learn and support each other.

My thoughts and prayers are with you.

RichT

I have a 4cm y 5cm by 3cm mass in the back of my skull. I am also having a hard time finding people (that aren't kids) that have FD. I have gotten VERY few answers from my Neurosurgen and when i was diagnosed a few weeks ago he told me over the phone and told me he didn't want to see me for 6 months. This didn't sit well with me and am in the process of going to Johns Hopkins for a 2nd opinion and to hopefully see a doc that has seen FD in the back of the skull.

Hello Iengela,

Welcome to this forum Iengela,

You have sought out an excellent place to go for your 2nd opinion - Johns Hopkins. May I ask when you will have your visit with the doctor?

I wish you the very best. Please stay in touch and let us know how things go.

RichT

I hope you finally get some answers at Johns Hopkins. Not a lot of information about FD has been given to me. I suffer everyday with pain from the bone growth that grows on my temporal bone. I have chronic pain in my ear, jaw and head. Is your FD growing inside or outside of your skull? And is it very painful? I have constant headaches and pressure in my head. I am very sympathetic to your condition and the pain and concern that you have. It's a scary disease to have. Especially when the doctors don't have much info on FD and what it is caused by.I would search for a doctor who has operated on this condition. My doctors operated and then told me when you need surgery again call. Not the answer I wanted to hear. Unfortunately FD is a rare bone growth disease. Please let me know if you get any answers from these doctors and I would try to be seen sooner than 6 months.
Take care, Sandy, (Samrella)

Hello Sandy,

Thanks for sharing your experience with FD, your excellent thoughts and wisdom.

YES, the sooner Lengela can see a doctor and be treated at Johns Hopkins the better.

Sandy, may I ask if you have looked for another doctor? One who is recognized by his/her peers as a leader in the field of FD. I hope you have, but if not, I would encourage you to do so. If you'd like some help let me know.

My thoughts and prayers are with both you and Lengela.

Take care.

RichT

Mine is growing inside my skull, and also suffer from CONSTANT headaches and frequent migraines but have been told that they have nothing to do with the FD, which I have a HARD time believing! I was last week put on drugs to try and control the headaches, but have yet to work, the only thing they did get rid of so far is the 'morning' sickness. Yes it is extremely hard not getting answers and not having anyone else that can understand what I am going through. I also live 8 hours from any family which makes it even harder! I do not have a date with Johns Hopkins yet, they have to have all of my medical records before they will schedule an appointment, which I am hoping to have by the end of next week. I have been in contact with them and have been treating nothing but with KINDNESS!! I have started to notice localized pain in the area of my FD growth, and it isn't cool. I HATE taking any sort of meds but have to to be able to even make it through a day. I am a 2nd grade teacher and the kids definitely help me keep going! They are so caring and worried about me at the same time. I find it interesting that we both have cronic headaches. Did you docs say they had anything to do with your FD? I am happy I finally found someone experiencing the same thing! It is kind of a relief.

~Alli (lengela)

A friend of my suffers from monostotic fibrous dysplasia in her right forearm (ulna), and she's told me that since she was 13, when the disease become very much noticeable, this bone has broken more times than she can remember. It's reached a point for her where the pain of breaking a bone is common place and nothing she fears. It's a chilling conversation anytime I hear her describes incidents such as lifting a heavy book bag only to find that she receives a forearm fracture.

Anyway, the point of my post is this: This disease is very rare, what I am trying to understand is the financial aspect of it. My friend has informed me that her health insurance is incredibly high so that she can undergo her 6 month bone infusion treatments along with receiving the necessary medication bisphosphonates in various commercial brands. If she did not have health insurance, her bone infusion treatments would be somewhere nearing $10,000. $20,000 to avoid the pain and suffering she goes through (and I assume you all must endure) seems unreasonable. Why is there no federal funding or grant provided to suffers of this disease; this seems like a self-evident case of the insurance companies working against the sufferer, the patient.

What's more unreasonable is that she is a college. Is she, and are you sufferers of this disease, actually expected to pay for being so randomly afflicted by this disease? I read that it is non-hereditary, and considering the rarity of the disease, it just doesn't seem right that you must not only suffer the physical pain of this disease but also the financial burden it bears just to avoid the pain it induces.

For example, she is in University, as said, but she has to make all of her life decisions based on how she will be able to financially cope with bearing this disease.

My main question is this: Is FD a financial burden to you (assuming you are not financially well off already), and if it is, how do you cope with it as an individual with only one source of income?

I will start out by saying that I am 2nd grade teacher and def not 'well' off with money! I do have pretty good insurance right now (and on a single income also). I was just recently diagnosed with FD, but not even sure if it is stated in my records. I was told over the phone any my Neurosurgeon didn't want to see me back for 6months. So as for treatment I have yet to receive any! So i would have to say I do not know. I am a recent grad, this is only my 2nd year out in the work force and struggling to pay back the student loans. The medical bills i have right now i am also having a hard time paying back but are no where near what your friend is paying. I have found that if you call the billing of the hospitals they are willing to work out a payment plan with you. (I called and pay $25 a month until it is paid) I have also heard that even if your friend pays at least $1 a month they can't come after, as in collection agencies. I know it isn't easy but i have learned that you have look past the financial aspect and not let that ruin your life (even though it is easier said than done). I hope this answered your question from my point of view? I am will to chat if you want.

~Alli (lengela)

I have met with the Neurosurgeon at Johns Hopkins and my FD has grown in the past 2 months. They will be removing about a 3 inch circle of skull from the back of my head. My surgery is scheduled for Wednesday February 13th. They moved quite quickly with me because of the pain that I am suffering from. They will replace the removed bone with titanium mesh. They say i will be in the hospital for 3 days and 2-6 weeks recover at home. I will update you all again after surgery.

Hi, I too was diagnoised with FD of the right temporal bone back in 1995.
I have been followed by ENT specialist on a yearly basis ever since. I have been suffering fro headaches for years but was told that they wern't related to the FD. Two years ago was was facing surgery but the doctors decided against it for now. I have noticed over the last several months that my headaches have gotten worse and I awake in the middle of the night with them. I was glad when I ran across this message board and found that I am not alone. I have felt for a long time that my headaches were some how releated to my FD. I have been told to look for changes in my hearing and eyesight but thats about all. I really wish I could find out more. Thank you for sharing. I will see my doctor again this month to get the results of my yearly CT and I will bring up the headaches again. I was given medication to treat allergies that shows little relief for these headaches.

Sallie
San Antonio, tx

Hi Sandy-
Just wanted to let you know that I know how you feel. I was diagnosed with FD over 8 years ago and have never been treated or followed since. It is hard to find someone with a good amount of knowledge, but due to increasing symptoms, I am now being proactive-I should have when I was diagnosed. Hope you are feeling better-update when you can about where you stand with doctors, etc.

To Alli-
Didn't see an update after surgery...how are you doing? What did they end up doing and has it helped your symptoms? I have also contacted Johns Hopkins and am waiting to hear from them for their opinion. I am also in touch with a team in NY and they have been fabulous!! A dr in CA recommended surgery, so I am trying to get other opinions to back that up.
Hope you are doing well!

Debbie