For those of you who receive my e-mail updates this will be mostly repeat info.
Went to U of M yesterday for pheresis...went great! I mean great. I BARELY felt the needles (THAT in and of itself is miraculous!!) and the treatment went very smoothly. We DID use an old machine, and I did NOT feel like I was about to die the rest of the day. I actually felt good. I'm a little more tired today, but that's been par for the course in the past.
The docs are, however, concerned about the prednisone and hip pain. Apparently there is something called Avascular Necrosis of the hip that can occur with high doses or prolonged use of steroids (which prednisone is)....and they are concerned that the hip pain I am experiencing could be this necrosis. Treatment can range from complete bedrest to hip replacement. I had to have x-rays before I left the hospital yesterday, so we are waiting to see what's up. I'm copying an article about this condition so you know specifically what to pray for, and against. Thank you so much.
Because of the prednisone, also, my moods are pretty scattered. I keep saying that I am not going to worry, that I will be strong and courageous, because the Lord my God is with me... and then I have a moment of sheer panic. So please also pray that my mind will stay strong. THANK YOU.
Avascular Necrosis
What is it?
Avascular necrosis ("AVN") is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone and tissue surrounding it dies, which causes the bone to deteriorate, often leading to collapse of a joint. AVN is also known as osteonecrosis, ischemic necrosis, and aseptic necrosis, strikes both men and women and affects people of all ages. It is most common among people in their thirties and forties.
Who gets it?
There are common causes of AVN, such as fracture or dislocation of the femur (thigh bone) which results in injury to the blood circulation, leading to trauma-related AVN. Studies suggest that this type of AVN may develop in more than 20 percent of people who dislocate their hip joint.
In addition, thrombi or emboli (blood clots), inflammation, and damage to or narrowing of the arteries (from fat droplets) which block the blood supply to the hip joint cause AVN. Increased pressure within the bone also is associated with AVN - the pressure within the bone causes the blood vessels to narrow, making it hard for the vessels to deliver enough blood to the bone cells.
Studies now show that there is an increased incidence of AVN seen in people who chronically use steroids (such as prednisone) which are commonly used to treat diseases in which there is inflammation, such as systemic lupus erythematosus, rheumatoid arthritis, and vasculitis. Long-term, systemic (oral or intravenous) steroid use is associated with 35% of all cases of non-traumatic avascular necrosis. However, there is no known risk of AVN associated with the limited use of steroids. Doctors are not exactly sure why the use of steroids sometimes leads to AVN; they may interfere with the body’s ability to break down fatty substances which in turn build up and clog the blood vessels, causing them to narrow, which reduces the amount of blood that gets to the bone.
Excessive alcohol use and steroid use are two of the most common causes of non-traumatic AVN. In people who drink an excessive amount of alcohol, fatty substances may block blood vessels causing a decreased blood supply to the bones, resulting in AVN.
Other risk factors or conditions associated with non-traumatic AVN include Gaucher’s disease, pancreatitis, radiation treatments, chemotherapy, decompression disease, and blood disorders such as sickle cell disease.
What are the symptoms?
The area most frequently involved is the femoral head (hip joint); however, the elbow, knee, shoulder, wrist, and ankle can also be affected. The amount of disability that results from AVN depends on what part of the bone is affected, how large of an area is involved, and how effectively the bone rebuilds itself. The process of bone rebuilding takes place after an injury as well as during normal growth. Normally, bone continuously breaks down and rebuilds itself – old bone is torn away and reabsorbed, and replaced with new bone.
In the course of AVN, however, bone tissues break down faster than the body can repair them. In the early stages of AVN, patients may not have any symptoms. As the disease progresses, however, most patients experience joint pain - at first, only when putting weight on the affected joint, and then even when resting. If AVN progresses and the bone and surrounding joint surface collapse, pain may increase dramatically and may be severe enough to limit the patient’s range of motion in the affected joint. The period of time between the first symptoms and loss of joint function is different for each patient, ranging from several months to more than a year.
AVN may be present without any pain. In most cases, however, pain often develops dramatically, and increases in severity once the AVN has progressed. If the patient has hip pain, it is often due to flattening of the normally round femoral head, bone fragmentation, and eventual collapse of the femoral head.
Diagnosis
Your doctor will perform a complete physical examination and ask about your past medical history, including your health problems, and medication history. As with any other diseases, early diagnosis increases the chances of treatment success.
Your doctor will obtain an x-ray to help identify the cause of your joint pain, such as a fracture or arthritis. In the earliest stages of AVN, standard x-rays are often normal. If the x-ray is normal, you will probably have additional tests. A magnetic resonance image (MRI) is the most sensitive non-invasive method for diagnosis of AVN, and will show if there is any damage to the bone marrow, the bone itself, and the structures in and around the joint. In addition, MRI may show diseased areas that are not yet causing any symptoms.
In addition, your doctor will evaluate the opposite hip as well, because there is an 80% chance that the other hip is affected, even though you may have no symptoms at the time.
Treatment
The goal in treating avascular necrosis is to improve the patient’s use of the affected joint, stop further damage to the bone, and ensure bone and joint survival. Several treatments are available that can help prevent further bone and joint damage and reduce pain. To determine the most appropriate treatment, your doctor considers the following:
Your age
The stage of the disease – early or late
The location and amount of bone affected – a small or large area
The cause of AVN – with an ongoing cause such as steroid or alcohol use, treatment may not work unless use of the substance is stopped
If less than 15% of the femoral head is involved, AVN may resolve without any further treatment. Non-operative (conservative) treatment consists of partial weight bearing with the use of crutches for six weeks then re-evaluation by your orthopaedic surgeon. However, non-surgically managed cases most often show an 85-92% risk of progression of the disease, and for this reason, it is usually best to treat the hip surgically.
The shoulder and knee do better with conservative treatment than the hip does, and this is usually the treatment of choice for these joints. If AVN is diagnosed early, your doctor may treat you by limiting your activities or recommending that you use crutches. In some cases, reduced weight bearing can slow the damage caused by AVN and permit natural healing. When combined with medication to reduce pain, reduced weight bearing can be an effective way to avoid or delay surgery for some patients, however, most patients will eventually need surgery to repair the joint.
On the other hand, if greater than 50% of the femoral head progresses to collapse, it will ultimately require surgery. Surgical treatment involves one or a combination of four different procedures:
Core decompression is a procedure that involves drilling into the femoral neck (hip bone), through the necrotic (dead) area in order to relieve the pressure in the bone and to allow the bone to regrow in the area and heal on its own. This surgical procedure removes the inner layer of bone, which reduces pressure within the bone, increases blood flow to the bone, and allows more blood vessels to form. Core decompression works best in people who are in the earliest stages of avascular necrosis, often before the collapse of the joint. This procedure sometimes can reduce pain and slow the progression of bone and joint destruction in these patients. Patients are required to use crutches for 6 weeks following this procedure in order to prevent the risk of fracture.
Bone grafting is a procedure that involves taking a graft (segment of healthy bone) from the fibula (bone below the knee), and placing it into the core after core decompression. Bone grafting can either be non-vascularized (not using the blood vessels of the hip) or vascularized (using the blood vessels of the hip). In a vascularized procedure, the blood vessels of the graft are saved and are reattached to the blood vessels of the hip. The disadvantages of this procedure include a longer recovery period, less complete relief of pain than after total hip arthroplasty, and the potential of nerve injury to the calf in which the bone graft was taken. There is a lengthy recovery period after a bone graft, usually from 6 to 12 months.
Osteotomy. There are several types of osteotomies; however, all of these procedures attempt to shift the diseased femoral head by relocating some viable (living) cartilage in the weight bearing area so that you will have less pain when walking. After the procedure, your activities are very limited for 3 to 12 months.
Arthroplasty (total hip replacement) entails replacing the hip joint with an artificial femoral head and part of the femur with an artificial stem. The surgeon may, however, determine that the patient only needs replacement of the femoral head with an endoprosthesis (ball). A total hip replacement appears to provide the best results, and leads to complete or nearly complete relief of pain and relatively normal function in 90-95% of patients. With modern surgical techniques and devices, these artificial hips should continue to function for at least ten to fifteen years in the majority of patients.
In addition to the above surgical and non-surgical treatments, doctors and researchers are exploring the use of medications, electrical stimulation, and various therapies to increase the growth of new bone and blood vessels. These treatments are used experimentally, alone, and in combination with other treatments, such as osteotomy and core decompression.
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
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