In 2001, when I was 8 years old, my right forehead suddenly protruded, like a bag, no pain or itch. My leg bones also had problems at that time, not only after more than a decade of bone breaking, scraping, and later replacing the skull with a metal mesh.
Running is second to last
The right leg doesn't seem to listen
When I was a child, my parents took me to check my forehead, but the hospital in the small city did not find the cause of my illness. The doctor said that if you are really uneasy, you will make a pathological slice and take a little bone to see what it is. But at that time, it had no effect on me except for a little bulge, so my parents refused to do the slicing and did not go to the higher hospital for examination.
At that time, the symptoms on my legs seemed to be more severe. My family often accuses me of not walking well, I am very wronged, walking too long and my legs will really be very tired, and I always rank second to last in physical education class running (the first to last is a classmate with heart disease, she is full of course).
In my confusion, I endured accusations, endured the five or six kilometers walk from home to school, endured physical education classes that made me breathless and my right leg did not seem to listen to the call.
When I was 12 years old, I fractured my right femur, and my family took me to the big hospital in the province, which confirmed my bone fibrous dysproliferation. The doctor said that I had to have surgery or it would affect my height, and that's when I realized why I was a little shorter than my friends my age.
After being admitted to the hospital, I underwent my first surgery. The doctor scraped off the lesion of my right femur and implanted artificial bone, and said that my femur had been deformed and would need orthopedic surgery later, otherwise my right leg would be shorter.
When I was discharged from the hospital, I was put in a cast that started from my waist and wrapped around my entire right leg, because the bones were scraped so thin that if they were not protected by a cast, they would easily fracture. Stuck in a plaster cast, I lay in bed for several months, as if I were a Transformer, unable to take a bath, eating and drinking All the time in bed, it was very difficult.
As I gradually recovered, I first removed the cast below the knee of my right leg, and when I first removed it, my knee could not be bent, and my muscles atrophied very obviously. It wasn't until I removed all the cast and was able to stand up that I realized that I was at least 5 centimeters taller than before the operation.
Scrape bones, break bones, elongate legs
I had a "heightening" procedure
However, the good times did not last long, and in the process of walking on crutches, I broke my bones again, and had to repeat the rehabilitation process of the above plaster cast.
In 2007, I injured my right calf in an accident and found the same problem with my right tibia. The doctor said that my disease was frequent, that is, the lesions would affect many parts, and I was 14 years old at that time, which was the time to grow my body, so the disease was also developing.
So I was given a second surgery, still scraping off the diseased bone and implanting artificial bone. The doctor considered that a single incision was too large to heal, so it was divided into two incisions of 10 centimeters each, 3 centimeters apart. There was no cast after the operation, just two simple splints for protection.
Fast forward to 2008, and I reviewed and consulted the previously mentioned orthopedic surgery again. However, this time the right femur was once again detected to have a recurrence...
This time, the doctor decided to solve the problem of clearing the lesion and orthopedics with one operation. Among them, osteotomy orthopedic surgery needs to first break the deformed bone, so that there is a certain gap between the two ends, and fixed with a steel plate, so that there will be new bone tissue growing along the gap, improving the original deformity, similar to the elevation surgery.
After several weeks of repeated discussions, the specific surgical plan was finally determined. Later, I learned that this was the first time that the doctors had adopted this "grasp with both hands" scheme, and the whole team only rehearsed my operation one day, prepared more than 1,000 milliliters of blood for me before the operation, and visited many doctors during the operation.
Happily, the operation went well. My right leg was stretched and extended to the maximum extent after the operation, so after other reactions and pain disappeared, the skin of my right leg was still hot and the feeling was not very sensitive, and this symptom gradually disappeared until more than half a year after the operation.
After just a year and a half, my bones had grown well, and because of the support of the steel plate, the femur was not so easily broken.
The pre-orthopedic femur 丨 Author courtesy of the author
The femur is fixed by a steel plate 丨 Author courtesy of the author
It will recur anyway
I don't have surgery anymore
After a routine re-examination in 2010, the femur recovered very well, and this time the tibia replacement recurred again. Originally, we planned to remove the femur plate and perform surgery on the tibia, but after various consultations and considerations, we decided not to perform surgery again. I'll still relapse anyway, maybe without strenuous exercise and weight-bearing, avoiding fractures, and my life is more on track.
And it is. I returned to the campus after a 5-year absence and read for 5 years. Isn't life like this ups and downs!
In my sophomore year of high school, I used my legs excessively (the first time the school held a garden party, I ran away for an afternoon), because the pain was so intense, I thought I had a fracture, so I quickly registered for examination, and found that the femur had recurred, and there were some lesions in the knee. That day I had been seeing Dr. Da Niu going abroad for exchange and study, and my situation was more complicated, and the doctor suggested that I wait for him to come back and discuss it.
Coming out of the examination room, I sat in the rest area of the orthopedic department, feeling that after so many years of treatment, enduring so much pain, everything was back to the original point, the mood was very low, and I couldn't help but shed tears. The uncle who passed by looked over with a very curious look, and I complained in my heart: Is it difficult to understand when I see crying people in the hospital?
I went back to school on crutches. Fortunately, there are friends who accompany me to class and dinner every day, the teacher has been giving me support and help, I completed the academic level test in a low mood, at this time the doctor also returned from abroad, he still gave the original advice: no surgery, maintain the status quo, protect the right leg without fracture.
Since 2015, my right leg has remained in this state without accidents. Last year I went to the doctor for a review, he saw my film and said, "I remembered when I saw your film", "I think your bone is still very beautiful", "Protect your calf from fractures, we are not afraid of steel plates in the thighs"... I was remembered so clearly by the doctor.
The story is over?
No, the bag on the head is another beginning
Seeing this, do you think the story is over? No, remember the bulging bag on the right side of my forehead mentioned at the beginning, the severity and extent of the lesion in this area is far beyond my imagination.
Time back in 2005, after the first femur surgery. When I was lying in bed in a plaster cast, I had a very brief tenderness in my forehead, but at that time my attention was focused on my legs, so I didn't pay attention.
When I was hospitalized in 2008, the doctor gave me a very detailed examination and confirmed that lesions had also occurred in the skull and mandible. But we considered that the focus of treatment at that time was on the legs, and there was no surgery for these two areas.
In 2015, I reviewed the CT due to the tenderness of my right forehead, and the lesions did not change significantly from before, and I was about to take the college entrance examination, and this question was once again shelved.
As time went on, the deformity on my face became more and more pronounced. The right temporal area and forehead are raised together, so the right side of the face looks larger than the left side of the face, the spectacle legs do not rest smoothly on the ears, and the right eye is somewhat protruding and moving down. Fortunately, I was not too fragile inside, and my friends never alienated me because of this. So as long as there are no fractures and no function is affected, I don't pay much attention to these problems.
Until 2020, when I changed my paper at home, I found that the right eye adapted to light and shade more slowly than the left eye, and there was a clear sense of obstruction when the right eye looked to the right and upwards, and I also had tinnitus.
At first, I thought that the eye discomfort was because I had been writing papers and staring at the computer for too long, and tinnitus was caused by digging roads and building bridges outside, but the symptoms did not ease after a while. So I took my previous film to the neurosurgery department, and the doctor recommended that I be admitted to the hospital for examination, but for various reasons, I didn't live in the neurosurgery department until 2021.
The director suggested that I have surgery
Other doctors objected to their faces
Before I was hospitalized, the director and deputy director of the same team disagreed about my treatment plan. The director suggested that I be hospitalized for evaluation and craniotomy, while the deputy director thought that my lesion was large and difficult to remove cleanly, too risky, and did not recommend surgery.
Since I already had problems with my vision and hearing, I was afraid that dragging on would be more serious, so I chose to follow the director's advice, first be hospitalized for examination, and then decide whether to operate.
After being hospitalized, I underwent a lot of tests, including CT of the skull and chest, enhanced MRI of the skull, visual field examination, brainstem hearing evoked potential, and so on. The examination showed that there was no problem with my visual field, indicating that the thickened bone did not compress the optic nerve, that tinnitus should be caused by the progression of bone lesions at the base of the skull, and that there were also lesions in the bones of my nasal cavity.
Head and chest CT report 丨 Author courtesy of the author
At that time, except for the director, the other doctors thought that I should not have surgery, and even argued directly with the director in front of me. For the doctor, this is indeed a very tricky and risky operation, and the deputy director often talks to me and informs me of the risks that the operation will face. Frankly speaking, my heart is playing drums, after all, I want to do craniotomy, and the opinions within the doctor's team are not unified, how can I not be nervous?
However, I, the unlucky egg, do not believe that the disease can stop developing on its own, and if it is not solved now, it will continue to eat into my body and affect my physiological functions. Since this is a problem that I have to face sooner or later, I may as well solve it while I am still young and the function is not completely destroyed.
My will for the operation was firm, and eventually the director successfully persuaded the other doctors, everyone agreed, and did it!
Then there's the surgical plan. It was almost impossible for my lesions to be completely removed, and after repeated discussions, overturns, and discussions, the doctors finally decided to remove the part of my skull that had become the most severe and functionally affected, and replace it with artificial materials (titanium mesh).
There are also many difficulties and risks associated with this programme. First of all, even if only the most serious places are selected, the scope is still very large, which means that the risk of postoperative bleeding, fluid accumulation, and infection is very large, and each one is very fatal. And once the infection occurs, the artificial material will also be contaminated and must be taken out, which is equivalent to doing nothing, which is very harmful to me.
The second is the need to remove part of the orbit, which is very difficult.
The third is the plastic production of repair materials. Because my skull was not defective, the manufacturer could not make a metal titanium mesh with a matching shape according to the gap, so the doctor first contacted the manufacturer to make a model of my skull, delineated the scope of skull removal according to the model, and then let the manufacturer make a matching iron mesh, and then modified according to the iron model, and finally made a titanium mesh.
The titanium mesh made from the skull model丨 Author courtesy of the author
At that time, two skull models were made, one to make titanium mesh, and the other to compare the pictures provided by the author
The fourth is that part of the titanium mesh needs to be fixed to the diseased bone, and there is a possibility of loosening.
And the fifth, the sixth... For example, how to polish my deformed and thickened bones to 4 centimeters, how my head should be fixed on the shelf, and so on.
The main purpose of this operation is to achieve three purposes: the first is to improve the compression of the eyeball, the second is to improve the appearance, and the third is to improve the compression of the brain. The doctor has repeatedly stressed that the operation can not restore the bones to the most normal shape, only the maximum improvement, and I am very aware of this.
After all the preparations are done, the date of the operation is determined. Because it was a craniotomy, I needed to shave my head, so the morning before the operation, the shaving uncle came over and shaved off all my hair twice.
What is it like to shave your head? Well, it's not so silky to the touch, and the head is really cold! After shaving my head, I also thought, this is the opportunity to do ba la la little magic fairy, what color wig to buy is good? As a result, because the inch was too cool, I didn't buy a wig.
I used to have waist-length hair, cut into shoulder-length hair before I was hospitalized, and later shaved again
The incision is made from the left forehead corner to behind the right ear
His right eye was swollen into a peach
The operation lasted six or seven hours, and when I was about to wake up, I was dreaming that I was fighting with someone else and was about to win, but someone rushed to me and said, "Your pig has run!" You're still fighting with people, don't hurry up and find them! "So I started looking for the pig, and as I was looking for it, I heard two nurses talking, and I woke up and the nurse pushed me out of the operating room.
At this point my right eye was so uncomfortable that I couldn't open it, so I asked the nurse, "Is my right eye wrapped?" "Nothing." I closed my left eye and heard the nurse whisper to the doctor, "Is her eye invisible?" "No, just can't open it for a while."
Later I learned how difficult the operation was. Because the surgery was large and required a long opening, the doctor did not want to leave a scar in the place where my face was visible, and the wound could only be hidden in the scalp, so it could only be opened a little longer, roughly from the left forehead to behind the right ear.
The incision is made from the left forehead corner to the back of the right ear 丨 Author courtesy of the author
After the doctor cut it, he found that my diseased bones were all calcified, unusually hard, and could not be cut at all. Therefore, the director, who originally planned to only get started in key parts, took matters into his own hands, first making grooves in the skull, and then biting off the bones bit by bit with pliers. The bones that oppressed the eyeballs were also worn off little by little, and the doctor grinded them until they were soft, and then when they reviewed, they said: "Eh, I'm really tired..."
From the moment I woke up, I started vomiting. From coming out of the operating room to reviewing CT, and then back to the ward, I have been vomiting heavily, even spitting up, unable to eat and drink, relying on intravenous nutrient solution to survive for a few days, and finally did not vomit.
Because of the analgesic pump, the pain of the postoperative wound is within my tolerable range, but the soreness, the tearing sensation of the scalp being opened, the feeling of hollowness are very strong, and the stiffness and soreness of the neck also make me very uncomfortable.
I also have all kinds of threads and tubes attached to me, including ECG monitors, indwelling needles, central venous tubes in my neck, urinary catheters, drainage tubes, oxygen tubes, analgesic pumps... It is good that past experience has taught me that it is good to stick to it for a few days.
During the days when the whole body is bound by various tubes, nurses will use various instruments every day to do nursing, such as air pressure pumps to prevent deep vein thrombosis in the lower limbs, instruments to promote intestinal peristalsis to prevent constipation, and instruments to prevent urination difficulties after removal of the urinary tube and to relieve throat discomfort.
I have to say that these treatments are very useful, and I feel that the advancement of medical care technology over the years has never been used before after surgery.
After the operation, I did not have heavy bleeding and infection, each time the dressing change was the deputy chief doctor himself, he said that my wound was too big, others used a change kit, I had to use two, and I was afraid that one would accidentally get infected, so I was relieved to do it myself.
My subcutaneous effusion was severe, and to minimize the risk of infection, the drain was removed the next day. At that time, the right side of my scalp was soft and soft, and it was full of fluid. The right eye was even more severe, swollen like a peach for the first day or two after the operation, and then the red flesh inside the eye was squeezed out.
Swollen right eye 丨 Author courtesy of the author
The ophthalmologist said the solution was to keep the eyes moist with erythromycin eye ointment and eye drops, cover them with gauze, and wait for the effusion to slowly absorb, while sleeping as far as possible to the left. In order to promote the disappearance of the effusion quickly, others wear a headband to pressurize, I wear two, Sun Wukong's tight curse is probably like this.
During that time, the deputy chief doctor always felt that I was very depressed (in fact, I did not), so he often came to enlighten me: "You don't believe that there will be great blessings after the big sadness, you will definitely have good luck in the future!" "Me: Ben is really not very convinced..." You, you must find someone who loves you in the future!" I:? I didn't mention that I was a single dog!
Slowly, my scalp effusion, the red flesh of my eyes that had been squeezed out, and the swelling around my eyes disappeared, but the skin of my eyes was still a little swollen, and the wounds were almost the same. When I removed the stitches, I found that instead of using traditional stitches, I used skin staples, and the things that were removed were like staples, so they would not leave scars like centipede legs.
Half a month after the operation, the hair can hook the cotton wool 丨 author provided the picture
The eyes are concave into Westerners
I'm unlucky but not so unlucky
Two months after I was discharged home, the skin in my eyes was completely swollen. Because of the loss of some of the bones, my eyes look a little sunken, probably like the Westerners, but I don't look so good.
Although I lost my double eyelids due to depression, my left eye is three eyelids, so let's take a look at my double eyelids! In addition, I have no problems with my vision, and I only have some bulges in the temples on my face.
Three months after the operation, I went to review, and the director of the main knife said: "After the operation, I regretted that the bones behind the eyes were less ground, and I didn't expect to sink in so much." But don't worry, you can do the filling in a year or two, but be sure to contact me before you go! I want to stress the sterility problem with the doctor, if it is infected, it is not good! ”
Three months after the operation, the head CT 丨 author provided the picture
I said yes, and the director continued: "If you want to find a boyfriend, you must find someone who really loves you, and can accept that you are like this for the time being!" "Me: ?? I should have written three words on my face: Single Dog! Worthy of being on the same team as the previous deputy chief doctor.
I have also met people with the same disease as me, some of whom have much milder symptoms than me, even without surgery, and some of whom have not grown taller because of delays in treatment. As for me, I'm the kind of person who is unlucky but not so unlucky.
Unfortunately, despite my constant treatment, the condition never stopped developing, and on a few occasions it was very tricky, but fortunately I always had a very reliable team of doctors at critical moments. I know there is no perfect and once-and-for-all solution, but every time it is the best solution for me.
Accompanied by illness for more than ten years, all kinds of things can be summed up in two words. In short, thanks to modern medicine and doctors, I can walk more healthily in the world, and I am also grateful for the care and companionship of my family, and my courage to never show weakness!
According to the custom, there will be a doctor's review at the end, so comment doctor, can I publish a paper to this extent?
Doctor reviews
Liu Mingxi | Attending physician of the Department of Orthopedics, Taiyuan Central Hospital, the Ninth Affiliated Hospital of Shanxi Medical University
First of all, I would like to pay sincere respect to the author, having a strong heart is very important in the treatment process of the disease, and when fighting the disease, he is his own superhero. The author of this article has a long course of illness and complex treatment, but has achieved satisfactory results so far, which is the meaning of our efforts to struggle and grow to the sun.
Bone fibrous proliferation is a bone disease in which a large number of abnormal fibrous tissues replace normal bone structure, also known as poor bone fiber structure. It occurs during growth and development, causing the patient to have abnormal bone development, accounting for 12% of benign bone lesions.
The incidence of the disease in the mainland is about 10-30 parts per million, and it can be affected by bones throughout the body, mostly long bones in the limbs, and 30% can affect craniofacial bones.
Abnormal bone tissue of hyperplasia is softer and more elastic than normal bone tissue. As a result, it may cause skeletal deformities, limb shortening, pathological fractures, pain or dysfunction caused by compressing surrounding tissues.
Clinically, bone fibrous proliferation is divided into single-onset, multiple-onset, and McCune-Albright syndrome (MAS). Among them, the single type is the most benign and most common lesion, accounting for about 70%, which occurs alone in a bone, and is more common in the femur and proximal tibia, usually with mild symptoms, and deformities of the corresponding bone can occur in the later stages of the disease.
The author of this article suffers from a multi-faceted type, accounting for 30% of bone fiber dysplasia, lesions can invade most bones of the whole body, often biased to one limb bone, severe can cause limb shortening.
The third type of MAS has the lowest incidence, accounting for about 3%, 95% of women, early age of onset, multiple bone lesions, skin milk coffee spots, and precocious puberty.
Most of the initial diagnosis of the disease is due to the patient's trauma and the occurrence of lower limb fractures, X-ray examination found bone abnormalities, and then rule out other diseases, considering this disease, the first physician must have the relevant knowledge of this type of disease to diagnose.
The authors were inconvenient to walk in childhood, but did not do the corresponding examination, and if abnormalities could be detected at an early stage and fractures avoided, they may suffer less pain.
The picture above is a picture provided by the author, and the right femur is curved compared to the left side, resembling the crutch of the shepherd hunting sheep in the old days. This is a typical change of the disease, known as "shepherding" deformity, which in severe cases leads to unequal length of bilateral lower limbs, upper body deviation when walking, long and short legs, and pelvic tilt and scoliosis after a long time.
According to the description and imaging examination, the author has already had a shortened limb and a tilted pelvis, but it is corrected in time and does not cause more deformed changes.
Bone fiber proliferation disease after a clear diagnosis, the most important thing to pay attention to is to avoid trauma leading to fractures, and must be reviewed regularly every year to assess the progress of limb deformities, if there is a sudden obvious discomfort, you need to go to the hospital as soon as possible to avoid delaying treatment.
The treatment of bone fibrous proliferation is divided into drug therapy and surgical treatment. In terms of drug therapy, the most widely used bisphosphonate drugs, such as alendronate, pamidronic acid or zoledronic acid, etc., which were first shown to have a definite effect on the disease in 1994, and clinical guidelines also pointed out that the use of such drugs can reduce pain and control lesion progression.
In terms of surgical treatment, lesion scraping, bone grafting and internal fixation are required for the site of pathological fracture to stabilize the fracture end, correct the lower limb line, and maintain the normal function of the limb; if the lesions in the skull and frontal face have compressed the normal tissue and caused the corresponding symptoms, the compression needs to be removed and the symptoms relieved.
Finally, in response to the question of the first issue of the paper, the author has experienced twists and turns, and may consider writing a case report and a literature review.
I wish the author a colorful life and a healthier way to walk the world.
Sharing personal experience does not constitute a diagnosis and treatment recommendation, can not replace the doctor's individual judgment of a specific patient, if you need to go to a regular hospital.
Author: Liu Miaomiao
Editors: Ziyi, DaiTian Doctor