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15 years old, Isle of Man
"When I was 3 years old I was taken into hospital after my parents noticed me limping and constantly complaining of pain in my left leg. I had an X-Ray of my left femur taken and sent home to wait for results. A few days later my mum got a phone call asking them to bring me into hospital as soon as possible. Once there, doctors told my parents that they thought I had a rare form of cancer. They said that they were going to refer me to a cancer specialist at Birmingham Children's Hospital. A few days later we arrived in Birmingham. Once we were with the cancer specialist, he told us he didn't think I had a form of cancer, he said he thought it was a rare disease called Fibrous Dysplasia, but to be certain I would have to have a biopsy.
About a week after the biopsy it was confirmed that I had Fibrous Dysplasia. To find out wether I had Polyostotic or Monostotic Fibrous Dysplasia I had various scans done, which showed that I had Polyostotic Fibrous Dysplasia in my left Tibia, left Humerus and left Femur. At that point in time the disease wasn't causing me too many problems and was left alone for the time being.
Over the next 5/6 years me and my parents returned to Birmingham Children's Hospital once or twice a year to see my consultant (who I have seen from the age of 3 to present).
At the age of 9 I was severely struggling with walking and physical activities. I was suffering from a severe Shepherds Crook deformity in my left Femur. It was then decided that I would under go a surgery to have a telescopic rod put through my Femur to stop the deformity becoming worse and to try and strengthen my Femur.
I arrived in Hospital for my surgery and was soon taken down and put to sleep. The surgery went well and I had a rod put in and some wires to keep it in place. I had 3 main scars due to the surgery. I had 2 scars on the side of my thigh, one which was 2-inches and one which was 5-inches. My 3rd scar was on my the inside of my knee, where the rod had been attempted to be out in through my knee, but failed as the deformity was too severe, which then meant they would have to go through the top of my femur. After the surgery I became quite ill. I had a ridiculous temperature and couldn't hold any food or liquids down, I was also itching all over and ended up cutting my self due to the itching. This passed after about 2/3 days. The day after my operation I was often Hyperventilating, this also passed by the next day.
Months pasted and my leg felt great, although it felt fine, is till couldn't sleep on my left side as I felt a sharp pain in my leg as if I was being stabbed with nails from under my skin through to the outside. After bringing this up at a check up, I had some X-Rays done and it turned out to be the wires that had been placed to secure my pin stabbing me in my soft tissue causing me the pain. Just after I turned 10 I had the wires removed and had 2-3 screws put in instead. After this surgery, I once again became ill and often hyperventilated. This once again passed after a few days.
After the surgery and once I was back on my feet my leg felt better than ever, I could swim, run, and do pretty much anything I wanted to do. Although slipping or falling did cause me severe pain and cause me to hyperventilate when this happened.
About a year later (11 years old) I started High School. By this point I couldn't walk without crutches or a walking stick. It turned out that my femur was so badly deformed it was bending my rod with the bone. It was decided that I would have my femur reconstructed. On November 8th I would have my femur broken into 3 pieces, re shaped, have my hip rotated in 60 degrees, have my bone but back together, lengthened and have a telescopic rod put through my femur, a plate to hold everything thing in place, some wires and some screws to hold everything together. Just before my operation it was determined that the reason I'd been ill after surgeries was due to me having a bad reaction with morphine. Apparently it's rare to have an allergy but common to have a reaction, so for this operation I had an epidural just after being put to sleep. When I woke up from surgery I realised I was still down by theatre as I'd bled quite heavily during surgery and was still bleeding. I was having pads and np bandages but on to try and soak up and stop the bleeding. I was supposed to have a blood transfusion due to how much blood I lost but because of my young age it was decided that it would be left to see how I went without it. I was okay after the surgery apart from being sick afterwards, which was expected, and my comfort levels were much better than what I felt with others. After some blood tests it turned out due to the blood loss I had severe anaemia and was put on iron tablets. I was fed mostly things that had a lot of iron in them like liver and I was also given iron drinks too. (After about 2/2 ½ years I was finally given the all clear to stop with the iron tablets etc as my levels were finally back to normal). Just before surgery I was told I would supposedly be bed bound for at least a week in hospital, although we were told this, about 17/18 hours later I was out of bed and getting around the ward on a Zimmer frame. I was kept in a second night for observation and was discharged the next day, less than 2 days after surgery. I flew home the next day. I was told after surgery that I would have to be in a wheelchair for about 3 months as they were worried due to my severe anaemia I could faint and damage my leg if I was on crutches. Roughly 3 months later I was finally up on crutches and slowly learning to walk again.
The surgery was a major success, I was walking and running without any problem about 6-7 months later, and to look at me it wasn't too obvious I even had a limp.
A year later I was at another check up where an issue was raised about my tibia. My tibia had began swelling after a knock where I'm affected with my Fibrous Dysplasia I was told that I probably just had a stress fracture and that I was probably going to get them quite often but that they weren't too serious. Since then I've had many stress fractures, but I've now learnt to just deal with them and do my best to block them out.
About a year ago I started getting a severe pain in my leg again. I hadn't felt pain like this since before I had my leg reconstructed. It felt like I had millions of red hot knickers stabbing through the inside of my bone working their way out through my soft tissue and through my skin then starting again every second. I wasn't sleeping and I was struggling to sit through exams. 10 months ago at an appointment in Birmingham that had been arranged due to the pain, I was told that my hip was rotating out wards again, that my leg had become shorter again and that the metal work I had was most likely what was causing me the pain. I was told the situation was extremely difficult and that they weren't quite sure what to do. My consultant asked if he could refer us to a colleague of his who is more experienced with this kind of thing to see what he can make of it. A few months later we were back for my referral. We arrived at the Birmingham Royal Orthopaedic Hospital and I was sent for more X-Rays. After a wait that felt like a lifetime we were finally seen to. Once seen to I was examined by the consultant. He stayed silent for a while, telling us he really didn't know what to say and that this was an extremely difficult situation. He told us that although surgery could be an option, that he didn’t think it was a good idea due to how big my last surgery was and due to the complications that came with it. He said that in the future a femoral replacement could be considered, and that it was usually a last resort for cancer patients, to have the femur replaced with an artificial one. He said it can be amazing for about a good 30 years, but after that time it will wear and cause quite a lot of problems. He told us he wouldn't recommend surgery and that he would recommend seeing a chronic pain team and finding some sort of long term pain relief. My whole world was turned upside down and I just couldn’t cope. After this I was referred to CAMHS (Child and Adolescent Mental Health Services). After the first meeting we had a review referred to a consultant I see where I live. The letter said that I was showing moderate signs of depression and that its recommended I begin sessions there to keep track of how I'm going and to hopefully help me deal with things better.
About a month later (December), we were sent a letter about an appointment with my consultant at Birmingham Children's Hospital. It didn't say why we wanted to be seen, but we tried to keep our hopes low so that I wasn't disappointed like I was last time. Although if it was just a follow up with what the other consultant said, we didn't think they'd want us to fly over for it. Once there my consultant told us he thought deeply about what the other consultant said, and although he recommended not operating, he still wanted, and that he felt it shouldn't be left. After discussing different surgery options, I was given a choice of what to do. I decided to agree to having my metal work replaced, my leg broke and lengthened, and having my hip rotated in 20 degrees. We were told the surgery would take months but that it would be worth it, we were told it would hopefully be done in April/May 2015. I was on top of the world, after being told there was no surgery I could have to help and that I'd have to live with it to having surgery in the next few months was amazing. I've never been so happy.
Following this, my leg has gotten worse and worse, I'm on permanent painkillers, which don't seem to make a difference, I can't walk without being in unreal pain, and I'm also constantly getting stress fractures in my tibia. I can't sleep at night, and after having a week of exams and having to sit through them I was left barely able to walk. I've missed so much school with everything it's been agreed by governers that I could drop a GCSE subject to make stress levels less and to help keep my mental health stable.
It's now May 2015, and we still haven't had a date given. I also cannot now have surgery till early September due to flying to Cyprus for my sisters wedding on the 30th of June till the 7th of July. Flying past a certain height can cause problems which means I can't have surgery 6 weeks before or after flying. I haven't had this many problems for nearly 4 years. I'm in constant agonising pain and I feel like not a single person understands me. I frequently miss school, and have people questioning me, and as they can't see the pain I'm in besides my limp, which most people are used to, they don't understand it at all. I have people saying to me ‘you don't look like there's anything wrong’, ‘you don't look like you needed the day off if you're wearing make up’, ‘you use your leg as an excuse when you can't be bothered coming into school’, and also have people completely underestimating how much pain I am in. No I don't look like I need a day off and I don't look like I need a day off with make up on because I try my best to look okay. I don't want to look physically and emotionally exhausted. You're right, I can't be bothered coming to school. I can't be bothered dealing with the pain I'm in with my leg. Everybody underestimates how much pain this disease causes, physically, emotionally and mentally. I even had a close friend say to me ‘why are you telling people you're allowed to leave the exam to stretch your leg if you need?’, this was because I can't sit for long periods of time. I told her its because I can't and because it's true, and she carried on to insist how she ‘knows me’ and ‘knows’ that I can sit for long periods of time. I wanted to scream, I couldn't believe one of the closest people to me didn't even understand me in the slightest. Yes I sit through 50 minute lessons, which is because I don't want to draw attention by getting up. Is that okay?? Should I shout it from the rooftops when I'm in pain and how bad it is?? Should I constantly complain and draw attention to myself just so that I don't get questioned?? I feel like people are trying to almost catch me out about something. Almost like they're trying to catch me out that there's nothing wrong with me and that I make it all up. I can't even explain how much it hurts when I get questioned and accused. I wish I could put my pain into them for 2 days, so that they can experience the pain and how difficult it is to sleep. They wouldn't last. I wouldn't wish this kind of chronic pain on my worst enemy. Nobody around me has any idea what it's like and it's so difficult. They all think I'm exaggerating the pain and that its not that bad, and I honestly don't know how much longer I can deal with it, I feel like a ticking time bomb.
It's not just me that this disease affects either, it's been another world for my family. This disease has brought them sadness and problems since I began to be affected by it. Although it's been hell and will carry on to be, I wouldn't wish to be any other way, I wouldn't be me any other way, and I wouldn't be as aware of the real world as a teenager and aware that life's not easy and that things, most of the time don't go your way, but that you just have to deal with it no matter how difficult. You have to come out on top. Be knocked down 7 times and stand up 8, because as a chronic pain sufferer, you learn in the early days that you don't have any other choice. You have to be strong and there's no way around it. People my age’s heroes and inspirations are famous people or people who have been through tough times and come out on top, but for me my hero is my consultant, Mr Bache. He has done everything possible to give me an easier life and has never let me down once. He will always be my hero and inspiration, and the person who motivates me to get up and carry on everyday of my life, and I hope he knows that. "
Welcome to my story .
Let me start with the basics my name is Gemma I'm 27 years old and from Manchester Uk.
I had my son Joel in December 2011 and went back to work after 6 months . I was sat at my desk (worked as a personal assistant to managing director of a debt company) and started getting shooting pains in my face. I went to see my GP who referred me for a MRI .
I wasn't expecting to get anything back from the MRI I thought initially it was problem with my teeth as this pain was like electric shock running up side of my jaw. The pain was immense . I went to the Hospital and had the scan done.
Within a couple of weeks the results were in, I was so convinced I was 'ok' that I went alone to get the results 7th December 2012 . 'Gemma, you have unfortunately got a large mass /tumour on left side of your skull , it's squashing the trigeminal nerves in your face , hence the painful attacks ' . Oh my word, that was not what I was expecting . The doctor told me the hospital would be in touch with me soon to arrange more tests. In meantime he couldn't even tell me 'what IT was ' .
That's where it all started , did I have cancer? Was I going to be ok ? All these thoughts feelings anger, upset, anxious , sad every feeling possible all into one. Next couple nights came and went and one night I bolted up in bed screaming in pain, the pain felt like acid had been thrown at me . I managed to call the emergency services , the lady on the phone thought I was either drunk or suffering from a stroke as I was slurring my words quite badly.
Ambulance arrived and they thought I had a stroke , rushed me to hospital for further tests. They then thought I had condition called Bell's palsy . The next day I was discharged with them unsure what occurred . I noticed the 'lump' on my forehead getting bigger and became very upset and suffering with head pain. I took myself back to hospital and was sent from there by ambulance to a more specialist larger hospital .
Here I spent two weeks of continuous tests . I was 22 miles away from home , from my partner , my new son (who was approaching one the same month ) I didn't know if I would be home for his birthday .
I was put on a post brain op ward 8 ladies 7 of whom are recovering from brain surgery and me. This was my first look at what life and this soon to be diagnoses was showing me. After what seemed like years , a consultant came over. You have what's called fibrous dysplasia . It's rare , one of the most rarest bone disorders. I had to write it down I couldn't even pronounce it . After most tests and making me follow up appointments and medication I was discharged .
Fibrous dysplasia was in my skull leaning on my nerves causing another condition trigeminal nuelgia.
Fast forwarded two years, the pain got that bad my specialist offered a glycerol injection into my nerves to freeze them under local anthestetic . I accepted as he said only down side would be that it wouldn't work for me. I was prep for it and went in, afterwards they said to my partner Gaz it went well I can kg home , I got home sore but felt ok, within hours I was howling with pain I can't even describe the pain I felt . Lights hurt me , I couldn't get comfy and started to feel disorientated . My partner scared that this was side effect from the op phoned emergency services. I was rushed to hospital and hit with morphine immediately . After 3 days of being given morphine and not knowing who or where I was we had a diagnoses another one.
I had caught baterial meningitis from the operation , life saving drugs started immediately and it took me 5 days to even drink water. I can't remember much of that journey at all, constantly being hooked up to drips and flashes of my life around me .
I got stronger by the day and was eventually released from ICU. The knightmare didn't stop , I started having seizers and found out that the meningitis now left permanent epilepsy , great another thing to my list. That was June last year , not even a year on, I'm doing ok.
I have however been diagnosed with osteoathertitis in my hips and chondrosis in my knee, all left sided , just like all my problems . It seems iam bad to the bone so to speak my bones are in bad shape.
Life is now made up of being in pain and trying to balance that with my beautiful family . I'm grateful I'm still here to witness it all . I have acid infusions by drip every 6 months , steriods injected into me and daily medication .
My happiness comes from my family , I'm not the person I was by a long shot. This has shot my confidence , my social life, independence and made me feel incredibly 'old' .
However , I'm lucky , I'm lucky to live the meningitis , to tell the 'story' and to be with my 'boys' who without them I wouldn't have the fight to continue . Every cloud .
I hope this sheds some light on not just FD but the knock on effect it can have to other conditions. I also hope it helps people to stay positive and realise , we are still HERE to continue to tell our stories and share awareness for this rare diease that not many people know of .
My hopes for the future , well it's simple to be in little pain as possible and to lock memories away in my heart with my family , isn't that what anyone wants ? This has made me realise , smile more , appreciate more. I do get down at times but I try to push that away and continue going. Some days my FD hurts that much my left eye closes shut, I have to hibernate under pillows close any light out, wear my partners hat in bed to compress the area and does up on medication that makes me groggy and sleepy . I've actually Gotten used to it all now, there isn't know day that goes by that one condition doesn't 'play up' .
My son wants to be a doctor, this boy of ours was out here for a purpose.
You are so much more than what's on paper , don't let any diease define you."
Gemma Campbell age 27
"Camryn’s journey with Fibrous Dysplasia began on July 30, 2005 when she was only 5 years old. It was a warm Saturday, so we decided to go out onto the back deck to enjoy the sunshine, just like we had a thousand times before. Only this time, when my daughter laid her head in my lap and opened her mouth to speak, I noticed a large, hard mass on the roof of her mouth. As a nurse, I am trained to notice these things. Abnormalities. And I am trained to immediately run through my mind all the possible diagnoses associated with such an abnormality. But on this day, I wasn't nurse. I was mom. And therefore, I pushed any and all thoughts of medical conditions out of my mind. Since she wasn’t in pain and had no fever or other signs of an acute process going on, I waited until Monday morning to call the doctor.
I remember the bewildered response from the secretary at the pediatrician’s office when I told her I needed an appointment because my daughter had a mass on her palate. I remember the trepidation I felt as I entered the office. How I wanted to be anywhere but there at that very moment. How it all seemed so surreal. It was like the nurse in me was trying to tell me that there was something terribly wrong, but the mom in me had decided denial was a much more appropriate coping technique at the time.
The next few hours seemed to take forever, as we waited to get the results of the CT scan at our small, rural hospital. The staff looked quite sympathetic by then, with puppy dog eyes and long faces, but I still allowed mom and denial to win the battle. When her father and I entered the back room and her scans were hanging on the wall, I could no longer rely on the denial that had gotten me through those past few days. It was like a ton of bricks smacking me in the face. There, up on the light screen, was my daughter’s CT scan, with a baseball sized dark mass right where her left sinus should be. "Camryn has a bone tumor called ossifying fibroma (the wrong diagnosis). She needs to have surgery to have it removed right away..." the pediatrician’s words trailed on, but I could no longer comprehend them. I hardly heard anything past the word "tumor." I was crushed. I just wanted to leave. I composed myself before leaving the room so Camryn wouldn't see me upset. She was a sensitive child and I didn’t want her to be scared.
The next day was Camryn's 6th birthday and instead of celebrating, we were traveling an hour and a half to have a consult with a doctor from Maine Medical Center, the largest of hospitals in the state of Maine. He told us the tumor was probably a dental tumor of some type, and acted as though it was no big deal. My husband asks if he has seen this type of tumor before. He answers, "Oh, yes. I see this all the time." Hmmm, we both wondered. Then he added that they would need to do a biopsy to be sure. I immediately felt uneasy. There was a part of me that knew from the moment she opened her mouth that this was a BIG DEAL, but I had been pushing those thoughts way down into the farthest parts of my mind. But a mother always knows and I knew then that he was wrong. When we got home, I called the pediatrician and told him I got the feeling that this doctor wasn’t right for us. The pediatrician told me he had already spoken to a colleague and had made a referral to a well-known physician at Massachusetts General Hospital. Later that day, the Maine Medical doctor called me personally to tell me that he was wrong. He said that her tumor was much more serious than he had originally thought and after looking at her scans in more depth, he recommended that we go to Massachusetts to seek care. He had taken the liberty to arrange a consult for us. I told him that we had already set up a consult with Mass General so he could cancel the appointment that he made. I thanked him. He is redeemed in my eyes. The true measure of a good physician isn't that he/she knows it all; it's that he/she can admit when they don't, and offer suggestions so that we can get the care that we need, even if it isn't with them.
Two days later, we travel 4 hours to Mass General to see a maxillofacial surgeon. We get lost on the way. The hospital is massive and there are people everywhere. We wait a long time to actually see the doctor and when we do, we notice he comes with an entourage. Assistants, residents, and other staff follow him like ducklings following their mother. He tells us he doesn't know what the tumor is yet, as there is no way of knowing without a biopsy. We schedule a surgery for the following week. The next days are all-consuming with phone calls, messages of sympathy, and offers of help. We ask people to pray that this turns out to be something that can be cured. We stay positive for Camryn. We call the tumor her "bump." We decide to make a home video of the surgery and hospital stay, and title it, "Camryn's Bump Movie," which closely resembles one of Camryn's favorite videos, "Piglet's Big Movie."
On August 11, 2005, Camryn had her first operation. We waited impatiently for any news about our little girl. The doctor came to the waiting area to tell us that the biopsy results revealed it was Giant Cell Carcinoma, and they did not remove any of the tumor. She would need Interferon, a type of chemo that is given by injection once daily for a year. After that, they tell us, there is usually cure. Camryn was in the hospital for 3 days. She was very swollen and couldn't eat because her incisions were all in her mouth. She needed IV fluids and IV medication. On the third day, she finally agreed to drink a little and we were allowed to go home. Up to this point she hadn't seen her face. She was too little to see her reflection in the mirror of the hospital bathroom. We got lots of stares as we left the hospital. Everyone seemed curious as to what was wrong with the little girl with the swollen and bruised face. It was unclear if Camryn noticed this. On the way home, Camryn needed to use the bathroom. We stopped somewhere and as soon as we walked into the bathroom, my biggest fear came true. A mirror the entire length of the wall, exposing her face. I hadn't prepared Camryn for this. In my effort to protect her, I failed at preparing her for the reality of her appearance. I knew it was a temporary side effect of the surgery. She thought this was her reality for a future. I can't describe in words the look on her face in that moment. She was crushed. I tried to console her. It won't be like this for long, I told her. It didn't matter what I said. To her, she looked different, and that was all that mattered in that moment.
8 days after her operation, the surgeon called. He said the final biopsy results came back and Camryn did not have a giant cell tumor after all. A wave of relief swept over my body. Then he said this: "The good news is, it is Fibrous Dysplasia. The bad news is, it is Fibrous Dysplasia."
The plan was to watch and wait, and that’s exactly what we did for the next year and a half. The tumor was still growing, but we wanted to delay surgery for as long as possible. We knew that she would need several operations in her life and the longer apart we could get them, the better. We tried to live as normal as possible, despite frequent doctors appointments three states and four hours away from home. By January of 2007, we couldn’t wait any longer. Camryn could no longer breathe out of her left nostril because it was completely obstructed and her palate was really deformed. At this point, the FD was just in the left maxilla. She needed two operations in five days. The first was to reconstruct the palate and nasal airway. Unfortunately, there was a complication extubating her after surgery and she had to spend some time in the Pediatric Intensive Care Unit. Though the tumor will not directly take her life, surgical complications are always possible. The second surgery 3 days later was to remove an oral stent that they had wired to the roof of her mouth.
Over the next 2 years, Camryn continued to have problems caused by the FD. It is no longer just in her maxilla. It has crossed suture lines and has invaded her left zygoma and orbit. Her eyesight is becoming affected and she has double vision. She is starting to have frequent (almost daily) pain on the left side of her head. The pain became routine; Camryn would wake up in the middle of the night with pain in her left temple or back tooth and come wake me. We would go downstairs to get ibuprofen. We had a prescription for a stronger narcotic pain medication, but didn’t like the idea of giving morphine to an 8 year old. In March of 2009, she received her first dose of Pamidronate. It was supposed to help slow the growth and decrease the pain. She had a pretty bad reaction from that first dose. She was feverish and had pain all over her body. The plan was to receive two days worth of infusions, and since we lived so far away, we had to go down the first day, get the four hour infusion, keep the IV in, go to a hotel, and come back the next day for another round. This routine took place every 3 months for a year. Although the Pamidronate did help with the pain, the tumor continued to grow. And by the summer of 2010, we could no longer put off another surgery.
On August 18, 2010, Camryn had her fourth surgery. This one would be the most complicated to date. They would be de-bulking the tumor, reconstructing the nasal airway (it had obstructed again), contouring her left cheek, and then reconstructing her orbit. The tumor had been pushing the left eyeball up and out of her head and had really affected her vision. An oculoplastic surgeon from Mass Eye and Ear Infirmary would join the other surgeons in the operating room once they were done with the nose and cheek. Camryn was under anesthesia for over 8 hours. She had lost a lot of blood and had already received one adult unit (2 pediatric units) of blood donated by her dad in the OR. This was the second time that her father’s blood had been infused into her, and we dubbed him, “Super Dad,” claiming he saved the day and also her life. They didn’t have time to do the palate reconstruction, so it was decided to do that at a later date. Despite an enormous amount of swelling and also having to have a nasal trumpet inside her nose for a few weeks after the operation, Camryn was still determined to start school on time. On August 29th, she started her sixth grade year (the first of Middle School). What a trooper!
On December 21, 2010, another operation was needed to correct a defect with the eyelid caused by the orbit surgery. This was her fifth trip to the OR. Because this was a day surgery, it seemed like a piece of cake compared to the other operations.
On July 11, 2011, Camryn had her sixth surgery to correct the deformed palate caused by the massive tumor growth. It seemed like whenever an operation was done to correct one area, the FD just grew in the opposite direction. The swelling was much less this time around, which was a huge relief but we were extremely disappointed to learn that two of her front teeth were chipped during the extubation. So a couple of weeks later, we headed back to Boston to have a composite attached to the broken teeth. A plastic stent was once again wired to her palate, but since she was older, she was able to have the removal in the office rather than the OR. Soon after this operation, she started the second type of bisphosphonate, Zometa, to again try and slow the growth and help with the pain caused by the rapidly growing lesion. This medication was given IV in one day, so we didn’t have to stay overnight in a hotel. She only got two doses of this, six months apart, and it was apparent that it was not working at all to decrease her pain or slow the growth, so it was discontinued.
On December 18, 2012, Camryn was back at Mass General for the seventh operation to debulk the tumor, recontour the cheek, and reconstruct the nasal airway. This was the third time that her nasal airway had been so obstructed that she could no longer breathe through that side. I am reminded of the first time we saw an ENT (Ear, Nose, & Throat) doctor when she was 9 years old at Mass Eye & Ear Infirmary. After the doctor was unable to insert a neonatal endoscope into her tiny nasal passage, he advised us to avoid surgery for as long as possible to preserve the cilia and other structures in the nose that make it function normally. And now, here we were, having to drill another new airway so that she could breathe. I am thinking breathing outweighs cilia at this point, but now there would be a new worry to add to the ever-growing list: no cilia to prevent dirt, particles, and germs from entering her lungs. Her face has been completely numb on the left side since the second operation, so she can’t feel sensations such as wetness or cold. Her left nostril runs clear drainage almost constantly, and she can’t feel that it is wet. This is a bothersome side effect of having multiple surgeries on her face. No teenage girl wants her nose running without even being aware of it. Her scans show the growth impeding on her right side, too, and it is amazing that she can breathe out of her nose at all. She recuperated pretty quickly from this operation, and was able to return to school after Christmas break.
Less than 2 weeks later, Camryn was started on the third type of medication in an attempt to slow the growth and decrease the pain. Denosumab is a little different than the two bisphosphonates she had tried in the past. It acts by binding to and inhibiting RANKL, leading to the loss of osteoclasts from bone surfaces. It is given by subcutaneous injection and I am able to give her the injections at home. Camryn needs to go to the hospital every month for labs, and if they are within normal limits, she can receive the injection every four weeks. She has been getting this medication monthly ever since. Her tumor growth has slowed and the pain episodes are few and far between. We are hopeful that we don’t see side effects in the future from so many doses of this drug, but if we do, we’ll take it as it comes. Camryn would say it’s just another hurdle, just another obstacle to soar over. She’s had many hurdles in the past and she’s proven that she can get over whatever is in her way. She would say, “It’s in those moments, the moments when I’m leaping over the highest of hurdles, sometime I jump high enough so that I can see the sun in the distance, enveloped in a sky of blue.”
Despite all the surgeries, complications, and medical treatments that Camryn has endured over the 9 years since her diagnosis, she still leads a relatively normal teenage life. She is a very active Sophomore in High School. She is a high honor student, taking very rigorous courses, some well above her grade level. She plays soccer in the fall. She no longer participates in track due to some hip pain issues caused by a prior injury to the area. She is active in drama and participates in school theater productions, one act plays, and community theater. She is on the math team and envirothon team and is Captain of the Robotics Spirit team. She is a talented writer, singer, and artist. Most recently, she performed with several celebrities at a fund raising gala for The Hole In The Wall Gang Camp in Ashford, CT.
You can follow Camryn’s journey, by liking the “Camryn’s Journey with Fibrous Dysplasia” page on Facebook."
Fibrous Dysplasia/MAS Awareness Website is to help raise awareness for fibrous dysplasia and mccune albright syndrome. My name is Lauren Foster. I was diagnosed with Fibrous Dysplasia at age 13. My Fibrous Dysplasia is in the entire left side of my face and skull. I have had 6 surgeries. In September 2012, The Fibrous Dysplasia Foundation gave me the amazing opportunity to design the official awareness ribbon for fibrous dysplasia and mccune albright syndrome. I now sell merchandise with the awareness ribbon on it to make people more aware of this bone disease and hopefully one day find a cure. My hope that one day that fibrous dysplasia will be a known disease all over the world. All funds raised go to the Fibrous Dysplasia Foundation.
We support men and women of all ages, in all forms of fibrous dysplasia and mccune albright syndrome.
Name: Carolyn Brown
Location: Northwest Arkansas, USA
Born in 1941
"Diagnosed at age 10. Major complaint at that time was a backache. Had signs of precocious puberty about age 5 and continuous by age 8 or 9. Cycles were never regular.
Diagnosed by x-ray. Parents were told PFD/MAS was a very rare bone disease and nothing could be done for it. I was given a lot of "nos". No -- horseback riding, heavy lifting, etc. I don't know if anything was said about the endo problems. Not much was known about the disease at that time. (Early 1950's)
Huge birthmark on left side of body. Begins at skull, goes down the neck, some on left side of face, across chest to mid-line, across left shoulder & down left arm to mid-elbow. Other small spots on various parts of the body. These have gotten lighter with age. Were very prominent until ages 40's & 50's. Most folk thought I had been badly burned. One older lady offered the explanation that my mother saw smoke while pregnant, thus the mark. (This was in the 1940's, before fd diagnosis.)
FD affects left side of my body, head to toe. Endo problems: Irregular periods thru age 55; hypothyroid, high blood pressure, high cholesterol, etc. (I had parathyroid surgery in 1998, while a patient at the NIH.)
That was pretty much it for me until 1998, when searching the internet I found the NIH website and was accepted for a protocol. (My FD had always been treated symptomatically, not as FD.) This was the first time I had a medical professional who had seen a patient with the disease. Also the first time I met another person with the disease. Because of that study, I have met several others -- Each of us affected in a different way.
Between 1952 & 1998, the only FD related medical interventions were 5 or 6 surgeries to contour my jaw.
In my 40's, I decided "no more surgeries". because each time the growths re-appeared. Yes, there is still growth, but it seems to be much slower.
There are a lot of things I can't do, and a lot of things I have to do differently than other folk, but basically I've had a pretty normal life. That is, until 2008 when I became ill with the flu & pneumonia within 24 hrs. of each other. I spent 2 mos. in the hosp. The reason this was FD related was because my lungs had been compromised due to the FD taking over my ribs. Basically, I am deaf in left ear, due to nerve damage; I have very little lung capacity. am on oxygen therapy 24/7 and use a walker or wheel chair when away from home."
My name is Skye Miu Steppe, I was first diagnosed with Fibrous Dysplasia in 2007 at age 12. I have FD in the entire right side of my face and skull. With FD I have always had eye sight problems, facial deformation, and pain, pain, and more pain. In March 2007, I had my first face and skull reconstructive surgery which consisted of cutting me from ear to ear, peeling my face down, shaving back the FD and taking some of my rib out to build me a brand new eye socket. For nearly 8 years my eye sight was 20-20, and although I did have daily pain, it wasn’t nearly as bad as it was before the surgery.
By the end of my senior year of high school, my head aches were back and becoming worse everyday. We went to see my surgeon for my normal check up and he gave me the option of having the surgery again, or waiting. Of course, I was 18 years old, about to start college, I didn’t want to have to deal with the thoughts of another surgery, so I stopped going back to the doctor (boy, was that a mistake). By the end of my freshman year of college, I was seeing double vision, getting really dizzy, and the pain seemed worse then ever. And I was still trying to work full time and go to school full time. I knew that I no longer had a choice; I knew that I had to go see my doctor. So, my mom and I went and saw my surgeon in July of 2014. He informed me that I no longer had a choice that the surgery had to be done, and it had to be done soon.
August 26, 2014 I had my 2nd reconstructive surgery along with another bone graph. I had thought that being out of school, and engaged with my middle school sweetheart that I wouldn’t face the torment that I had the first time. I was very wrong, I had coworkers start ugly rumors that I was faking it all, and family members question why my fiancé was staying with me. I fell into a depression because I was an adult and felt like I did when I was being bullied in school.
The worst part of having such a rare, invisible disease isn’t the pain that comes with it. I can deal with the pain, the worst part is dealing with the people who don’t understand that I am not faking or exaggerating what is happening inside of my body. Having people that are supposed to love me, turn against me. That will ruin a person. I am now 20 years old, pregnant with my first child, and I already know that I will have to have the reconstructive surgery again soon. I honestly dread the aftermath of the surgery because how many other people am I going to loose over a disease that I didn’t choose, and cannot control?"
Skye also created a website for fibrous dysplasia. It helps all FD warriors feel like they are apart of a family and is a great way to connect with others with FD/ MAS
"Here is my story: I have always been an active child. I loved being outside and climbing trees was my favorite thing to do. When I was 2 years old, I fell off of the back of a couch. I broke my leg, and swelling occurred the size of a goose egg. Doctors at the university of Michigan were baffled. They told my mom that I had cancer! I went undiagnosed until I broke my right tibia again by falling off of a trampoline. I had a cast on my leg, and that did not stop me from being adventurous. My mom saw me hanging from a tree about 5 feet off of the ground with a cast on my leg and she said she had a mini heart attack. I remember her grabbing me down and telling me that I can't do that as long as I was wearing my cast. I didn't understand my limitations back then. My mom took me back to the u of M, and they said that they have never seen my condition, but they wanted to use me as a learning experience. My mother instantly got angry saying, "You're not using my daughter as a guinea pig!" We did not go back there. Finally at age 6, my mother found, through word of mouth, Shriners hospital in Chicago, IL. The first time we met Dr. Lubicky, he was already a world renowned surgeon. He diagnosed me with Monostotic Fibrous Dysplasia in my right tibia. Dr. Lubicky had already performed this kind of surgery on another young man before me, so that gave my mother some peace of mind. During my first surgery at age 7, he cut my bone into 3 pieces, and took it completely out. He placed an extra long steel rod in my leg, which ended up fuzing my ankle together with limited mobility. At age 12, my right leg was 2cm shorter than my left leg, which was throwing my back and hips out of whack. Dr. Lubicky suggested that I get an Ilazarov device to stretch my leg back to length. That was by far the worst wake up in the icu that I can remember. I had a steel cage that surrounded my leg with 9-10 pins that went from one side through to the other side. Unfortunately the day after surgery I was in a lot of pain, and they had me do physical therapy. They lifted me out of that bed by the cage on my leg, and I am happy today that I will never experience an excruciating pain like that ever again. That was by far the worst moment of pain in all 3 surgeries that I've had, but it shows me how strong I really am today! The 3rd surgery I had was the removal of the Ilazarov device and that was cake. I had barely any pain after that surgery, but I was a little nauseous. Today, I'm 25 years old. I have worked since I was 18. My parents never treated me differently, and they've had me work and clean like everyone else. They didn't want me to play the victim. I worked for 4 years as a lifeguard supervisor. I had people constantly asking me what happened, and I had to smile and tell them that it wasn't that bad, but inside, I wanted to break down. Yes, my leg is deformed, yes, it hurts constantly, yes, my doctor said I have the worlds ugliest tibia, yes, another doctor said that I shouldn't be walking at age 29, but I will not let that break me! I'm sure that I need more surgeries in the future, and I'm not looking forward to those, but what doesn't kill us, only makes us stronger! I have arthritis in my ankle, my back is still crooked along with hip pain from that, and sometimes headaches. I can't wear high heels, and that upsets me. I still go fishing, and try to be active, but sometimes I can't do what everyone else does so easily. (Like climbing trees, or skateboarding, or sports). Just because I have to try harder, doesn't mean I don't try at all. I do everything I can, and sometimes I push myself too far, but I've learned that we have to deal with some pain once in a while. Even if that means just taking a day to rest and watch movies, I'm okay with that! I didn't even think it was possible to find a cure for FD but thanks to this website, it has brought me hope and joy knowing that we are trying!"
"I am a 47 year old woman who has McCune-Albrights Syndrome and Polyostotic Fibrous Dysplasia. I was diagnosed at age 5 with fibrous dysplasia due to a fractured hip and McCune-Albrights at age 6. I have had 42 FD related bone surgeries between the ages of 7 and 44. I have had dozens and dozens of bone fractures. I have active FD in both legs, femurs and hips, my pelvis, spine and entire right humerus and shoulder area and the base & right side of my skull and facial bones. I have to use either a wheelchair or crutches to get around. I am deaf in my right ear as a complication from the FD in my
skull. I have pain every day of my life.
I like to think that my disease does not define who I am. Of course, living with a bone disease such as this it will certainly shape the person I am, but I like to think I chose to go above being “just a person living with FD”. I may be limited in what I can do physically, but I am proud of the person I am today.
I am many things –
a wife, daughter,
sister, aunt, friend and
yes, a woman LIVING with
a terrible bone disease!"
"Brenden broke his wrist at age 18 months just by someone grabbing it because he was falling off a swing...he proceeded to break an arm at age 3 then the other arm at age 7. Our local doctors kept saying, "He's just a boy.", when we questioned him about all the broken bones. Also at age 2 we saw a pediatric dermatologist because he had unusual birthmarks on his arm and back. The dr told us to come back around the age of 10 because it could be a bone disease. Well... on Brenden's 10th birthday (November 21, 2012), Brenden slipped in gym class at school and broke his right femur. We were quickly sent to the Children's Hospital of Philadelphia... the orthopedic surgeon on call; we were told was one of the best. Brenden went into surgery and had a rod and screws put into his femur and hip. After surgery, the doctor told us that he believed Brenden had something called, Fibrous Dysplasia and possible McCune Albright Syndrome. When the surgeon saw the birthmarks on Brenden he immediately knew that he needed to do a bone biopsy of his femur (as well as during surgery he knew the bone was "not normal"). The result of the biopsy was that the bone was fibrous dysplasia. We were in the hospital for about 4 days. In those four days we met with an endocrinologist, genetic doctor, and more orthopedic doctors...had lots of blood tests, and learned that "Yes, Brenden had McCune Albright Syndrome (fibrous dysplasia being part of that condition). After time in a wheel chair, walker and crutches Brenden was finally walking again (and lots of physical therapy).
Brenden had many appointments at CHOP where he had to endure a lot of tests. We found out that he has fibrous dysplasia in a lot of his bones (each limb, from his nose to the top of his scull, and his spine). We see a neurologist ophthalmologist every three months because the "bad bone" near his optical nerves were growing. We are really praying that he will not need surgery for this. We also have a separate orthopedic doctor for his back because he has developed scoliosis and needs to wear a brace (but he says it hurts when he wears it).
Most recently the doctors discovered that his rod and screws have shifted and he will have surgery on June 2, 2015 to remove the rod and screws. They will re-break his femur and replace a bigger rod and put screws in his knee and hip. We are obviously so anxious and pray that Brenden will not be in the pain he was in when he broke his leg 3 1/2 years ago.
Brenden is the best son anyone could ask for and hardly ever complains. He is an A/B student in 7th grade. He can longer take gym class or participate in sports.
Brenden is the ultimate Fibrous Dysplasia Warrior!"
Brenden – New Jersey/ USA
Submitted by his mom, Linda
"Hi, I'm Tamara. I have been living with MAS/FD for 28 years; I was diagnosed when I was five and now 33. I work as a substitute teacher, which is great when I have so many doctors' appointments to go to. I have been married for 6 years and a mom of a 2 year old. Yes, I was pregnant and had a c-section. More on that later first some background information.
At the age of five, I was diagnosed with MAS/FD. I like to share that my dad was the one who tentatively diagnosed me. He was a nurse and recognized my symptoms while browsing through a medical book at work and read about MAS. Mom had been noticing changes on my body, which she felt were not normal for a three year old (adult body odor and pubic hair). I also have cafe-o-lait spots, mostly on my back. At the time, my parents thought nothing of the spots. With Mom's concerns we went to the family doctor. Dad read about McCune Albright, and mentioned it to the doctor, "Tamara could have McCune Albright." The doctor replied, "She won't have it, it is too rare." My parents finally convinced our family doctor that something was wrong. He ran some tests and eventually referred us to an endocrinologist at Oakland Children's Hospital in Oakland, CA. As soon as the Chief of Endocrinology saw me, he suspected MAS. He ordered bone x-rays, bone-age tests, and some other tests I don't remember. The x-rays showed fibrous dysplasia, thus confirming the diagnosis of MAS/FD.
My parents did what any parents would do, after finding out. They pulled me out of gymnastics. During my elementary school years, Mom always wrote a note to the teacher, "Please excuse Tamara from PE, due to fibrous dysplasia." I was fortunate to not have the FD affect me severely. Instead of participating in PE, the teacher would find other things for me to do. I would keep score, cheer teams on, or go to study hall. I was never pulled out to do adaptive P.E.
Keeping me still as a child was challenging. I was still active, to some extent; rode my bike, played with other children. On the day before school was out in seventh grade, I was chasing my sister and her friend around the house (not good, I know now). While running in the house, I tripped over a box. (Please note: Good lesson as to why to listen to your mother. Mom told me to put the box away the day before). I knew, as soon as I fell, that I broke my leg. The break was near the head of the left femur, where the FD is. I was in the hospital for two weeks. The surgeon, had to call his professor to figure out what to do with me. I was in traction for 5 days before they took me to surgery to put a rod in my femur. The rod is still in place, held in by screws at the hip. A few years later a different doctor wanted to remove the screws because they were backing out, but we refused to let him do it. If the screws were taken out, I would be risking more fractures. I now have a special locking device in my hip holding the screws in place. Thankfully, my only serious break was at age thirteen.
Growing up, my hormone levels were monitored. This included my growth hormone and thyroid levels. I believe, in my early teens, was when I found out I had hyperthyroidism. A few years later, my parents and doctors, decided to reduce the thyroid by the radioactive iodine treatment. Currently, I take thyroid medicine to keep my levels up, since I'm now hypothyroid.
Along the same time, the doctors noticed my growth hormones were increasing, and not slowing down. Since my hormones were high, my hands, feet, jaw and heart could get bigger. I already stopped growing in height and was 5'9', taller than anyone in my family. It does sound strange. Having high growth hormone levels is called acromegaly. Ever since high school I've taken special medicine to control my growth hormone levels.
Continuing on, while I was attending junior college, I remember complaining that my ribs hurt. What could I do? Well, I wanted to find out what it was. We made the appointment with the doctor. He gave me a metal dot to place on my ribs, where the pain was. Looking at the x-rays we learned, I have lots of FD in my ribs. The x-ray tech was surprised with the involvement of the ribs. There are lots of stress fractures there. Nothing I can do about it. Just be careful, try not to twist. I still have to live.
I also get stress fractures in my tibia. When I was younger, I thought it was cool that one leg was warmer than the other. Off to the doctor I went, X-rays were taken. My tibia has always been interesting especially to the doctors. I remember the X-ray showed that the tibia is not straight, it is wavy. I have only 2 inches of bone in my tibia. The rest is fibrous dysplasia and the doctors are amazed that my tibia can support my weight. Over the last few years, I've really learned how to live with the pain. Life goes on, things happen. If I need to, I slow down, rest a bit, but I never stop.
During my college years, and living on my own, I gained weight. I know this may not seem like a big deal to most people. It's normal to gain weight during that time. Well, for someone with FD, those 30 extra pounds make a huge difference. Recently, I lost those 30 pounds. I feel a lot better. Since then I have less intense and less frequent stress fractures. I feel great now, there is no way I am going to be gaining more weight. I try and stay active with a short walk around the neighborhood, pilates, or time in the pool. All are low impact activities and are safe for me to do.
Currently, I am living my life the way I want to, not letting MAS/FD stop me.
Trying to find research on MAS/FD, pregnancy, and all the medication I took before hand, was a challenge. My husband and I did lots of research. Talking with doctors, trying to find information. Even paying out of pocket to see my former doctors. It wasn't easy, but we wanted to make sure we took all the precautions for a healthy pregnancy for Mom and Baby. We even thought that I may have to be on bed rest during the later part of my pregnancy.
Let's talk about the medication, the easy ones first. Thyroid, I took thyroid throughout the pregnancy, and increased it as the doctor recommended. My levels (growth hormone, thyroid, etc) were monitored very closely, every 6-8 weeks. Prior to getting pregnant, I also was on a medication to stop lactation, as I was lactating before in my early teens. The doctor said, continue to take it, until you get pregnant, than stop. It is suppose to help people get pregnant. Easy, no big deal. The more challenging one, was Sandostatin LAR. It's an injection that lasts a month in the system. Every 28 days, I get a shot. It's also the most important, as it suppresses my growth hormones. There is too little research on it with pregnancy/breastfeeding. My husband and I decided when my last injection would be, and waited 3 months after that, before we even started trying. We wanted to make sure that the drug was out of my system before I tried growing a human being.
Now, as most of you may understand I need to know who my doctors are before things happen. Anytime I move, I get set up with the endocrinologist, orthopedist; let's not forget the primary doctor for the referrals for all the specialists. With the hope of getting pregnant, I wanted to see the high-risk OBGYN and make him aware of my condition. During my consultation with him, he said, "You are healthy as a horse and all you need is to get pregnant." Something I wasn't expecting, but it changed my whole outlook on the process of being pregnant with MAS/FD.
It took about 4 months, once we started, to conceive. That was very quick. (When I was younger, I had a cyst on my overy. They said it'd go away on it's own, and it did. I started my cycle at a normal age). As soon as we got the positive test, I remember calling the doctors, trying to get squeezed in to figure out the game plan for the following 9 months.
Most of my care was routine, there were a few things that were added. Seeing the high-risk specialist every 6-8 weeks. I enjoyed that, as we had an ultrasound every time. I also had to see the ophthalmologist every 4-6 weeks. This was mainly for the vision field test. I have a small pituitary tumor. I usually have MRIs to see how it's growing. If it grows too much, I may go loose sight. We had no idea how the pregnancy would effect the growth of the tumor. So, every month I went in, yep I can see, good, see you next month.
Near the end of the pregnancy, from one of the many ultrasounds, it was found out that some of the fluid might be high. So, then I went in twice a week for a non-stress test, to make sure everything was okay. Of course everything was.
During the whole course of the pregnancy, I was eating very healthy. I didn't want to gain more than a healthy pregnancy weight. I wanted to be able to get back to a safe weight for me. I gained about 30 pounds and have less than 10 to go. While pregnant I also exercised frequently. Light workouts: walks and pilates. Again, I needed to make sure I was in shape during the pregnancy, so my recovery would be easier. My husband was a huge supporter in making sure I ate healthy and worked out. Of course, if I had a stress fracture, I would rest. By keeping my weight in check, I managed to avoid bed rest. Also, the stress fractures could have been worst, if I gained more weight.
The funny thing is, I was the healthiest during my pregnancy. My growth hormones were normal, without medication! I had energy! Little pregnancy side affects. My Mom jokes, that I should be pregnant all the time.
I was lucky enough to be able to breastfeed my baby. I still had my levels checked. Once the growth hormones were increasing, and we knew I would have to get back on the shot (Sandostain LAR), I started to wean her. I even pumped and froze lots of milk, so she'd continue to have milk even if she couldn't have it directly from me.
Now, the after effects are still getting worked out. I stopped pumping about 2 months ago, but my body still thinks I'm breastfeeding. Therefore, my cycle hasn't resumed yet. I'll meet with one doctor at the end of January and the other the end of February. Hopefully, we can get things back in working order for me.
I do have a positive outlook on life. Some days are harder than others. During the school year, I keep busy substituting, 2-3 days a week. Also, I have all the normal household stuff to keep busy with, and a 7 month old! By keeping busy, I feel great and I have less time to worry about myself. I do listen to my body, and slow down when needed, but never stop. Also, I now have a little one who needs me. She doesn't understand Mommy is in pain and can't lift me. I do what I have to. Rest for me comes at naptime and after she goes down for the night. (She does sleep through the night. Thank God!)
I have a healthy baby girl, Sara. She arrived June 14, 2013, a few weeks earlier than the scheduled c-section. I went into labor early, ahead of my planned c-section. With all the pressure of labor and delivery, I didn't want to risk a broken hip/leg, with a newborn. I arrived at the hospital at 9:30 am and Sara was born at 11:31am. She came in at 5 lbs 5 oz and 17 ¾ inches long. She is progressing nicely on the curve as she should be. I'm very lucky to have a happy, healthy baby.
Here are some sayings I like to remember when I'm having a bad day:
It is what is it. It is all about attitude.
They help me remember to be thankful for what I have, life goes on, and enjoy life. "
"My name is Phyllis Wheeler. I was diagnosed with fibrous dysplasia when I was 26 in 2005. However I have had severe pain since I was 14.
When I was in sixth grade and 10 years old. Brown cafe-au-lait spots formed on my lower left side of my back. They were biospied and considered non-cancerous, so nothing was done about that.
When I was 14 years old, I fell off my bike. I left skin on my driveway. My left knee was x-rayed. Orthopedic said it was chrondamalacia. They x-rayed my right knee and said that was softening of my joint also. My shins hurt often as a child. My orthopedic said it was just "growing pains". If that is true I still have those pains at 36. When am I going to stop growing?
I was pregnant at 21 with severe left leg pain during this time. At 24 years old, I rollered bladed about half a mile and broke my left tibia. I could barely walk. I limped home. I felt no need to follow up with a doctor. Simply roller blading and not falling down couldn't possibly break my leg???
About 8 more months pasted after this. I went to my general doctor for a yearly exam. Told her about my pain. She sent me to an orthopedic. Who sent me to occupational therapy. Where a lady named Joan. Kept telling me you are 24 years old and can't stand on one leg? I told her I could my right leg.
By December 2004, I went back to the orthopedic who I wanted him to release me from physical therapy. It just hurt too much. He said he couldn't until he x-rayed me. He x-rayed me. Said he needed more x-rays that a bubble showed up on my tibia. He gave me the "cancer speech" and told me it looked like I had partially fractured my tibia 3 times in the past. Eventually I went back to my general doctor who said she had felt the tumor. And I still wondered why didn't she have me x-rayed?
I picked Wake Forest University to see an orthopedic surgeon. A 4 hour drive for me but closer to where my mom lives. In January 2005, I had my first nuclear bone scan. My left tibia glowed bright white light. This was both scary and relieving at the same time. My pain was finally verified and not just in my head.
By February 2005, I had about 4 inches of my left tibia removed replaced by donor fibula and bone grafted. The doctor said it was "classic fibrous dysplasia" and to be glad I didn't come to him when I was 14 because back then he would have amputated my leg cause all bone deformities were considered to be cancerous.
I was married for the first time in July 2005. I was able to walk down the aisle without my cane or crutches. I gained alot of weight after surgery. A year after surgery I was diagnosed with type I Diabetes and in 2007 I was diagnosed with hypothyroidism.
Despite having another bone scan in 2014, and finding another highlighted area near my lower left back (ilium) my pelvis bone. Which diagnosed me with polyostotic fibrous dysplasia and my cafe-au-lait spots, no doctor has confirmed a diagnosis of McCune Albright Syndrome (MAS). You only have to have 2 symptoms of MAS of the 3 symptoms to have the disorder. 1) polyostotic fibrous dysplasia 2) precocious puberty 3) cafe-au-lait spots. Not that I need another rare disorder. But obviously I do meet the criteria. At least my sometimes lower back pain has been identified.
An orthopedic surgeon has said nothing left to be done with my fibrous dysplasia. I still have pain almost daily. I'm glad it doesn't seem to be everyday. My left leg swells enormously. Wrapping it up like an athlete and using a heating pad helps a lot. I am glad I still get pain medicine cause sometimes the pain is so great it feels like labor pains that do not stop as if my leg is trying to give birth to another leg. The intensity is often so great only my pain meds seem to ease it off.
I am tired of doctors that say it doesn't hurt, friends and family that seem not to understand. Joining Fibrous Dysplasia a closed group on Facebook which you can still join even though it's closed has helped me speak to people that suffer from this rare bone disease. It was wonderful to connect with others also suffering. I no longer feel so alone. I'm not the only one who hurts. This is so relieving to know. It is a great bunch of friends who share in the trials of this disease.
As far as medical care for this disease, I am so burnt out and out of funds, I guess I'm just a victim of chronic pain and will continue to ask for pain meds.
Life goes on and I'm stronger cause of this affliction. I'm very thankful for my few days I have without pain. I try to stay active. I will not let this disease beat me. Thank you for listening."