A story from the USA...
I am a woman born in 1965.
My family situation is this:
Maternal: Mother, grandparents, aunts, uncles negative. Paternal: Not known. Children: Five children all positive for med COMP19 gene.
I have been diagnosed with MED in 1993. I was the first diagnosed member of my family, by Dr. Scott, Retired Geneticist, AI Dupont Children's Hospital, Wilmington, DE USA
We were diagnosed with x-rays and genetic mapping.
I am 5'0" tall and I weight 153 pounds.
I did more then 10 surgeries.
(1)
1. Year 1979 Morton's neuroma removal of left foot between second and third digits for connective tissue neuroma.
2. Hospital - Brigham City Community Hospital, Brigham Utah
3. Kind of surgery - Morton's neuroma removal.
4. Why was it suggested to you? To walk more comfortably and not have a feeling of a marble between the toes.
5. How long did you stay in the hospital? Same day
6. How long did you take to you to fully recovery and restart a normal life? 4 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? No help, just a walking boot.
8. Was it useful or not? Please explain why. Yes. Relieved the pain and have been symptom-free since.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(2) 1. Year - 1988
2. Hospital - University of Utah Medical Center
3. Kind of surgery - Left fibular graft to left hip with revascularization.
4. Why was it suggested to you? Avascular necrosis of left hip with age being too young for replacement in that decade.
5. How long did you stay in the hospital? 10 days
6. How long did you take to you to fully recover and restart a normal life? A year.
7. Did you need constant help after the surgery or could you do anything by yourself? Had to be nonweightbearing for four months. Still worked full-time and had small children, and became quite productive using crutches and a walker.
8. Was it useful or not? Please explain why. No. Still continued to have pain until it was replaced 7 years later.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No rehab, just no weight allowed for 4 months time.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No. It was a very involved 7-hour surgery with microvascular surgery removing and attaching veins, prolonged hospital stay, and 4 months on crutches nonweightbearing.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No, and very few of these surgeries are currently being done.
(3)
1. Year - 1994
2. Hospital - Santa Maria, California (cannot remember which one)
3. Kind of surgery: Left knee arthroscopy with cortical decompression.
4. Why was it suggested to you? Torn soft tissue and full-thickness cartilage defect.
5. How long did you stay in the hospital? Same day surgery. 6. How long did you take to you to fully recovery and restart a normal life? Three months.
7. Did you need constant help after the surgery or could you do anything by yourself? Nonweightbearing for 6 weeks.
8. Was it useful or not? Please explain why. No, still required a knee replacement in 1996.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No rehab or therapy.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No, cortical decompression is only usefuly in early avascular necrosis which is usually difficult to catch in its early stages.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Only if it's an early stage avascular necrosis.
(4)
1. Year - 1996
2. Hospital - Ogden Regional Medical Center, Ogden, UT USA
3. Kind of surgery - Anterior cervical diskectomy and fusion, C4-C7
4. Why was it suggested to you? Narrowing from congenitally narrowed spinal cord and spurring, narrowing the thecal sac of the cord from a normal 10-12-mm down to 5 cm.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 3 months
7. Did you need constant help after the surgery or could you do anything by yourself? Most by myself.
8. Was it useful or not? Please explain why. Yes, it stopped that arm pain and twitching from a compressed spinal cord.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it relieved symptoms.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(5)
1. Year - 1996
2. Hospital - Ogden Regional Medical Center, Ogden, UT USA
3. Kind of surgery - Total left hip arthroplasty
4. Why was it suggested to you? Complete collapse of the femoral graft from tibia in left hip, disabiling pain and motion.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 3 months.
7. Did you need constant help after the surgery or could you do anything by yourself? Six weeks nonweightbearing.
8. Was it useful or not? Please explain why. Yes, it releived symptoms.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 6 weeks to regain strength and motion.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it was successful at treating a ruined joint.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(6)
1. Year - 1997
2. Hospital - Wilmington, DE USA
3. Kind of surgery - Right knee arthroscopy and cortical decompression.
4. Why was it suggested to you? Pain.
5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? 6 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for six weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it stopped my knee from catching and weakening. 11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(7)
1. Year - 1999
2. Hospital - Houston, TX USA
3. Kind of surgery - Left knee arthroscopy with OATS procedure (transferring cartilage from one spot to another)
4. Why was it suggested to you? For totally worn out spot of cartilage.
5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? 12 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? I could take care of myself.
8. Was it useful or not? Please explain why. No, the OATS was not useful in keeping the knee from further degeneration.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 6 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No, it was not successful and had to repeat the next year. 11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No.
(8)
1. Year - 2000
2. Hospital - Houston, TX USA
3. Kind of surgery - Right knee arthroscopy with OATS procedure.
4. Why was it suggested to you? Full thickness cartilage wear. 5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? Three months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. No, as in surgery (7) reasons.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 6 weeks of physical therapy.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No it was not successful in maintaining cartilage in the knee.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No.
(9)
1. Year - 2005
2. Hospital - Houston, TX
3. Kind of surgery - Anterior cervical diskectomy and fusion C3 through C7 (new level at C3 and redo at C4).
4. Why was it suggested to you? Chronic headaches and further cervical disk degeneration with spurring.
5. How long did you stay in the hospital? 2 days.
6. How long did you take to you to fully recovery and restart a normal life? 3 months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, alleviated symptoms of headache and arm pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Wore a cervical stimulator this surgery, whereas I didn't on the last.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it was a success with longterm releif.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(10)
1. Year - 2008
2. Hospital - McKay-Dee Hospital, Ogden, UT USA
3. Kind of surgery - Left total knee arthroplasty.
4. Why was it suggested to you? Chronic knee pain not relieved with meds or corticosteroid injections.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 6 months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Very useful as it relieved all pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 4 months and a manipulation to break up scar tissue at 8 weeks for better range of motion.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it is a longterm solution for chronic pain.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(11)
1. Year - 2009
2. Hospital - LDS Hospital, Salt Lake City, UT USA
3. Kind of surgery Redo left hip arthorscopy.
4. Why was it suggested to you? For a work femoral head prosthesis.
5. How long did you stay in the hospital? 1 day
6. How long did you take to you to fully recovery and restart a normal life? 6 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, it relieved pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 4 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
12. Any other comment or idea you want to share about your experience. The total joint replacements by this year are now less invasive and shorter recovery time.
(12)
1. Year - 2010
2. Hospital - LDS Hospital, Salt Lake City, UT USA
3. Kind of surgery - Right total knee replacement.
4. Why was it suggested to you? Worn out joint.
5. How long did you stay in the hospital? 1 day
6. How long did you take to you to fully recovery. and restart a normal life? 12 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, it releived all joint pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 12 weeks of physical therapy with a manipulation to break up scar tissue at 6 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it provides long-term relief.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
12. Any other comment or idea you want to share about your experience. The surgeries are a lot less involved to replace a joint now. 1 day versus 5-day hospital stays with better use of muscles for rehabilitation.
I do follow-upo. Rheumatologists provide the best all-around overall care for this condition in whole. Most orthopaedist specialize in areas of the body, do not perform lab blood work to check on changing chemistires, nor provide chronic pain relief or prescribing. They also research the disease more extensively than general practice doctors and orthopaedists. Also, pain specialist clinics are useful in providing an overall care as they are concerned about the pain experience. Also to note, most pain specialists are now researching bioidentical hormone replacement therapies that help your body stay at its best. A lot of pain medications block hormone production and having their knowledge on this breakthrough therapy for pain control is key.
This is what I did and what I do for pain relief:
PAST: Various NSAIDs; Darvocet; Ultram; Cymbalta; Neurontin. The NSAIDs, Darvocet, and Ultram provided relief. Cymbalta caused miniseizures and body tics. Neurontin didn't provide relief.
PRESENT: NSAIDs (ibuprofen 600 mg 4x daily), Skalexin (muscle relaxant) at night, fentanyl patch 25 mcg/hr changed every 48 hours, and 5 mg of Norco provide excellent relief. Also just began a course of glucosamine, chrondroitin, and MSM one week ago. Planning on bioidentical hormone replacement therapy starting next month.
I don't do any sport.
I have pain after 5-10 minutes of walking. Experience rest pain too after doing activities of daily living at the end of the day.
I feel joint stiffness mornings and evenings.
I can climb stairs with pain, one leg at a time to lead, and very slow.
I am not a good swimmer, I have done water aerobics, but now it hurts even walking in water.
Currently, pain, where 0 is none and 10 is max: left hip pain is 8, bilateral hands 8, and bilateral lateral ankles 8. 4-5 with pain medication regimen.
I am waiting for power chair. Walking devices hurt my thumb bases, help the hip.
I have the Recessive MED form,
COMP19. Not sure how mutated, because it was done back in 1993 with mutations being researched at that time. AI Dupont Children's Hospital, Dr. Scott, Geneticist.
The 3 oldest children of my 5 have been tested, and they have the same gene, but as stated above, mutation research was just underway.
With hip replacement mobility was gained and pain was relieved. Definitely would suggest, as today they have new approaches that are less invasive of a surgical procedure with better personal fits.
I also had another replacement, bilateral knees. One was in 2008 and the other in 2010, and what a difference on technique two years made. On the second, they had customized implants available with prescanning for a customized fit. The hospital stay was overnight compared to 5 days. They did not resect the quadriceps to open the joint up, and you had that muscle to use whereas it wasn't firing for at least 3 weeks on the previous knee replacement.
I can't do anything that requires longstanding weightbearing or significant walking, impact actions, and now hand motions as the thumb bases are severely diseased at age 47. I can't stay crossed legs.
I have high blood pressure, hypothyroidism, hypercholesterolemia/triglyceridemia, and hyperkalemia.
I had depression and anxiety which is definitely caused by MED and its limitations.
There is always a medical condition that could be worse. God doesn't close doors and not open others.
My family situation is this:
Maternal: Mother, grandparents, aunts, uncles negative. Paternal: Not known. Children: Five children all positive for med COMP19 gene.
I have been diagnosed with MED in 1993. I was the first diagnosed member of my family, by Dr. Scott, Retired Geneticist, AI Dupont Children's Hospital, Wilmington, DE USA
We were diagnosed with x-rays and genetic mapping.
I am 5'0" tall and I weight 153 pounds.
I did more then 10 surgeries.
(1)
1. Year 1979 Morton's neuroma removal of left foot between second and third digits for connective tissue neuroma.
2. Hospital - Brigham City Community Hospital, Brigham Utah
3. Kind of surgery - Morton's neuroma removal.
4. Why was it suggested to you? To walk more comfortably and not have a feeling of a marble between the toes.
5. How long did you stay in the hospital? Same day
6. How long did you take to you to fully recovery and restart a normal life? 4 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? No help, just a walking boot.
8. Was it useful or not? Please explain why. Yes. Relieved the pain and have been symptom-free since.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(2) 1. Year - 1988
2. Hospital - University of Utah Medical Center
3. Kind of surgery - Left fibular graft to left hip with revascularization.
4. Why was it suggested to you? Avascular necrosis of left hip with age being too young for replacement in that decade.
5. How long did you stay in the hospital? 10 days
6. How long did you take to you to fully recover and restart a normal life? A year.
7. Did you need constant help after the surgery or could you do anything by yourself? Had to be nonweightbearing for four months. Still worked full-time and had small children, and became quite productive using crutches and a walker.
8. Was it useful or not? Please explain why. No. Still continued to have pain until it was replaced 7 years later.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No rehab, just no weight allowed for 4 months time.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No. It was a very involved 7-hour surgery with microvascular surgery removing and attaching veins, prolonged hospital stay, and 4 months on crutches nonweightbearing.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No, and very few of these surgeries are currently being done.
(3)
1. Year - 1994
2. Hospital - Santa Maria, California (cannot remember which one)
3. Kind of surgery: Left knee arthroscopy with cortical decompression.
4. Why was it suggested to you? Torn soft tissue and full-thickness cartilage defect.
5. How long did you stay in the hospital? Same day surgery. 6. How long did you take to you to fully recovery and restart a normal life? Three months.
7. Did you need constant help after the surgery or could you do anything by yourself? Nonweightbearing for 6 weeks.
8. Was it useful or not? Please explain why. No, still required a knee replacement in 1996.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No rehab or therapy.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No, cortical decompression is only usefuly in early avascular necrosis which is usually difficult to catch in its early stages.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Only if it's an early stage avascular necrosis.
(4)
1. Year - 1996
2. Hospital - Ogden Regional Medical Center, Ogden, UT USA
3. Kind of surgery - Anterior cervical diskectomy and fusion, C4-C7
4. Why was it suggested to you? Narrowing from congenitally narrowed spinal cord and spurring, narrowing the thecal sac of the cord from a normal 10-12-mm down to 5 cm.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 3 months
7. Did you need constant help after the surgery or could you do anything by yourself? Most by myself.
8. Was it useful or not? Please explain why. Yes, it stopped that arm pain and twitching from a compressed spinal cord.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? No.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it relieved symptoms.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(5)
1. Year - 1996
2. Hospital - Ogden Regional Medical Center, Ogden, UT USA
3. Kind of surgery - Total left hip arthroplasty
4. Why was it suggested to you? Complete collapse of the femoral graft from tibia in left hip, disabiling pain and motion.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 3 months.
7. Did you need constant help after the surgery or could you do anything by yourself? Six weeks nonweightbearing.
8. Was it useful or not? Please explain why. Yes, it releived symptoms.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 6 weeks to regain strength and motion.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it was successful at treating a ruined joint.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(6)
1. Year - 1997
2. Hospital - Wilmington, DE USA
3. Kind of surgery - Right knee arthroscopy and cortical decompression.
4. Why was it suggested to you? Pain.
5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? 6 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for six weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it stopped my knee from catching and weakening. 11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(7)
1. Year - 1999
2. Hospital - Houston, TX USA
3. Kind of surgery - Left knee arthroscopy with OATS procedure (transferring cartilage from one spot to another)
4. Why was it suggested to you? For totally worn out spot of cartilage.
5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? 12 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? I could take care of myself.
8. Was it useful or not? Please explain why. No, the OATS was not useful in keeping the knee from further degeneration.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 6 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No, it was not successful and had to repeat the next year. 11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No.
(8)
1. Year - 2000
2. Hospital - Houston, TX USA
3. Kind of surgery - Right knee arthroscopy with OATS procedure.
4. Why was it suggested to you? Full thickness cartilage wear. 5. How long did you stay in the hospital? Same day surgery.
6. How long did you take to you to fully recovery and restart a normal life? Three months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. No, as in surgery (7) reasons.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 6 weeks of physical therapy.
10. If you could travel back to the past...Would you do this surgery again or not? Why? No it was not successful in maintaining cartilage in the knee.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) No.
(9)
1. Year - 2005
2. Hospital - Houston, TX
3. Kind of surgery - Anterior cervical diskectomy and fusion C3 through C7 (new level at C3 and redo at C4).
4. Why was it suggested to you? Chronic headaches and further cervical disk degeneration with spurring.
5. How long did you stay in the hospital? 2 days.
6. How long did you take to you to fully recovery and restart a normal life? 3 months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, alleviated symptoms of headache and arm pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Wore a cervical stimulator this surgery, whereas I didn't on the last.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it was a success with longterm releif.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
(10)
1. Year - 2008
2. Hospital - McKay-Dee Hospital, Ogden, UT USA
3. Kind of surgery - Left total knee arthroplasty.
4. Why was it suggested to you? Chronic knee pain not relieved with meds or corticosteroid injections.
5. How long did you stay in the hospital? 5 days
6. How long did you take to you to fully recovery and restart a normal life? 6 months.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Very useful as it relieved all pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? Physical therapy for 4 months and a manipulation to break up scar tissue at 8 weeks for better range of motion.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it is a longterm solution for chronic pain.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
(11)
1. Year - 2009
2. Hospital - LDS Hospital, Salt Lake City, UT USA
3. Kind of surgery Redo left hip arthorscopy.
4. Why was it suggested to you? For a work femoral head prosthesis.
5. How long did you stay in the hospital? 1 day
6. How long did you take to you to fully recovery and restart a normal life? 6 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, it relieved pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 4 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes
12. Any other comment or idea you want to share about your experience. The total joint replacements by this year are now less invasive and shorter recovery time.
(12)
1. Year - 2010
2. Hospital - LDS Hospital, Salt Lake City, UT USA
3. Kind of surgery - Right total knee replacement.
4. Why was it suggested to you? Worn out joint.
5. How long did you stay in the hospital? 1 day
6. How long did you take to you to fully recovery. and restart a normal life? 12 weeks.
7. Did you need constant help after the surgery or could you do anything by yourself? By myself.
8. Was it useful or not? Please explain why. Yes, it releived all joint pain.
9. Did you need rehabilitation after surgery? What kind? How long did you do it? 12 weeks of physical therapy with a manipulation to break up scar tissue at 6 weeks.
10. If you could travel back to the past...Would you do this surgery again or not? Why? Yes, it provides long-term relief.
11. Do you suggest other people to do this kind of surgery or not? Why? (This is like a 'friend suggestion', not a medical advice) Yes.
12. Any other comment or idea you want to share about your experience. The surgeries are a lot less involved to replace a joint now. 1 day versus 5-day hospital stays with better use of muscles for rehabilitation.
I do follow-upo. Rheumatologists provide the best all-around overall care for this condition in whole. Most orthopaedist specialize in areas of the body, do not perform lab blood work to check on changing chemistires, nor provide chronic pain relief or prescribing. They also research the disease more extensively than general practice doctors and orthopaedists. Also, pain specialist clinics are useful in providing an overall care as they are concerned about the pain experience. Also to note, most pain specialists are now researching bioidentical hormone replacement therapies that help your body stay at its best. A lot of pain medications block hormone production and having their knowledge on this breakthrough therapy for pain control is key.
This is what I did and what I do for pain relief:
PAST: Various NSAIDs; Darvocet; Ultram; Cymbalta; Neurontin. The NSAIDs, Darvocet, and Ultram provided relief. Cymbalta caused miniseizures and body tics. Neurontin didn't provide relief.
PRESENT: NSAIDs (ibuprofen 600 mg 4x daily), Skalexin (muscle relaxant) at night, fentanyl patch 25 mcg/hr changed every 48 hours, and 5 mg of Norco provide excellent relief. Also just began a course of glucosamine, chrondroitin, and MSM one week ago. Planning on bioidentical hormone replacement therapy starting next month.
I don't do any sport.
I have pain after 5-10 minutes of walking. Experience rest pain too after doing activities of daily living at the end of the day.
I feel joint stiffness mornings and evenings.
I can climb stairs with pain, one leg at a time to lead, and very slow.
I am not a good swimmer, I have done water aerobics, but now it hurts even walking in water.
Currently, pain, where 0 is none and 10 is max: left hip pain is 8, bilateral hands 8, and bilateral lateral ankles 8. 4-5 with pain medication regimen.
I am waiting for power chair. Walking devices hurt my thumb bases, help the hip.
I have the Recessive MED form,
COMP19. Not sure how mutated, because it was done back in 1993 with mutations being researched at that time. AI Dupont Children's Hospital, Dr. Scott, Geneticist.
The 3 oldest children of my 5 have been tested, and they have the same gene, but as stated above, mutation research was just underway.
With hip replacement mobility was gained and pain was relieved. Definitely would suggest, as today they have new approaches that are less invasive of a surgical procedure with better personal fits.
I also had another replacement, bilateral knees. One was in 2008 and the other in 2010, and what a difference on technique two years made. On the second, they had customized implants available with prescanning for a customized fit. The hospital stay was overnight compared to 5 days. They did not resect the quadriceps to open the joint up, and you had that muscle to use whereas it wasn't firing for at least 3 weeks on the previous knee replacement.
I can't do anything that requires longstanding weightbearing or significant walking, impact actions, and now hand motions as the thumb bases are severely diseased at age 47. I can't stay crossed legs.
I have high blood pressure, hypothyroidism, hypercholesterolemia/triglyceridemia, and hyperkalemia.
I had depression and anxiety which is definitely caused by MED and its limitations.
There is always a medical condition that could be worse. God doesn't close doors and not open others.