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

Good God, when I read this I had to register and post here. It looks like it's been a while since anyone has been in this thread, I hope that you are watching this thread still. You see, I also have fibrous dysplasia in the corner of my forehead above my left eye. My story began almost 4 years ago when I developed a CONSTANT frontal pressure headache and dizziness when I lay on my back. I was also told this had nothing to do with the fibrous dysplasia (at first) but when I got to see a neurosurgeon, they were telling me during my followups for 2 years that it probably was causing it, and then when I finally insisted (demanded) on surgery, they reversed their opinion and told me it wasn't causing it. I am very angry at the doctors why are obviously lying to me. I will watch this thread closely in hopes someone is still watchiung it.

Good God, when I read this I had to register and post here. It looks like it's been a while since anyone has been in this thread, I hope that you are watching this thread still. You see, I also have fibrous dysplasia in the corner of my forehead above my left eye. My story began almost 4 years ago when I developed a CONSTANT frontal pressure headache and dizziness when I lay on my back. I was also told this had nothing to do with the fibrous dysplasia (at first) but when I got to see a neurosurgeon, they were telling me during my followups for 2 years that it probably was causing it, and then when I finally insisted (demanded) on surgery, they reversed their opinion and told me it wasn't causing it. I am very angry at the doctors why are obviously lying to me. I will watch this thread closely in hopes someone is still watchiung it.

Good God, when I read this I had to register and post here. It looks like it's been a while since anyone has been in this thread, I hope that you are watching this thread still. You see, I also have fibrous dysplasia in the corner of my forehead above my left eye. My story began almost 4 years ago when I developed a CONSTANT frontal pressure headache and dizziness when I lay on my back. I was also told this had nothing to do with the fibrous dysplasia (at first) but when I got to see a neurosurgeon, they were telling me during my followups for 2 years that it probably was causing it, and then when I finally insisted (demanded) on surgery, they reversed their opinion and told me it wasn't causing it. I am very angry at the doctors why are obviously lying to me. I will watch this thread closely in hopes someone is still watchiung it.

Dear Ali,
I just had my second surgery at Childern's Hospital Boston, mass. for FD on the mastoid and ear region. I am waiting to hear when I will have the TMJ done again. It grew back in just 5 months. My FD started in the temporal bone with a total eardrum replacement and it destroyed all the cartilage in my jaw region. The pressure in my head was terrible. And after surgery the pressure was much less.Very painful but the doctors don't really know enough about it to give me answers that I am happy with. I have headaches but they aren't migraines. I didn't get a straight answer about the headaches being related to the FD.My Ear surgeon said that hopefully after a few operations the bone will decide to stop growing. Not very happy with any of the answers that I always receive. My hearing still isn't back and the pain meds really don't seem to help much any more. Please don't hesitate to ask me any questions. If I can help anyone that has FD It will help both of us.
Sandy

Hi, I also have FD on my right upper jaw and it has grown both on the inside and outside. I have a lop-sided face which is a very tough condition to be in. I had it shaved but it grew right back and I'm now seeking a second opinion. Lengela, which Dr at Johns Hopkins treated you? I would like to see someone eho has treated this disease before. All the best to everyone and I hope we can all find some relief.

Hi everyone!
I am so glad that I've found this forum. It is difficult to meet someone who knows or even has a FD.
I have a polyostotic form which means I have several lesions on the right side of my body: right foot, tibia, femur, pelvis and humerus. I have been diagnosed with FD 9 yeras ago when I had a stress fracture in femur which has never healed but impared in time and doctors suggest a surgery now. I am not a fan of surgery and as I read it has not really helped anyone with FD. Any other experience? What do you do to decsrease pain? I found out that warmth helps besides taking a rest, of course, but pain gets worse during the winter, when the weaather changes or if I excercise too much. Is there a woman with FD who has children - I am curious what happens with FD and pregnancy. Thank you for keeping this forum. Best regards,
Jana

Hi everyone,
I've been away from this forum for awhile because of three surgeries within 12 months and a lot of pain. My doctors at Childern's Boston and Mass General tell me the bone will stop growing when it wants to. Any radiation treatment will most likely cause it to turn cancerous. So I'm trying my best to be strong through the pain and surgeries. My last one was in Sept. on my inner ear,tmj and temporal bone.Now I'm waiting for MRI reports. So unfortunately there needs to be more study done with FD. Not enough know about this rare disease. Today put on oxycontin. Not happy about that. Good luck to everyone, keep the faith!
Samrella

Has anyone tried with alternative medicine?
I have recently tried with Bioenergetic Therapy and I could say the pain has decreased or is sometimes even gone. But I haven't seen my doctor yet to check if there is actually some improvement in bone structure.

However I am still thinking about bisphosphonates. Any experience?

Samrella, stay positive! I hope you get better soon...