September 19, 2014 at 7:08 pm #730jim456Participant
I’m looking for more information on EDS and the success rate of surgery to repair damage done from dislocations.
I currently have had surgery on my shoulder and knee. With 15 plus years between each surgery. Both surgeries have been horrible failures in my eyes.
I have been hypermobile my whole life. Frequent dislocations are not uncommon and I have learned to be very guarded of my joints. Most of the time I can put whatever joint it is back in with little problem. The exception was my shoulder that dislocated due to trauma. The surgeon decided I had torn my laprum and it needed to be repaired.
My knee was about 15 years before my shoulder and what I’m going to call my first large joint dislocation that i can remember(approx 13 years old) also from trauma. The surgeon decied my knee needed to be repaired.
Either way both joints are 100 times worse in the hypermobility and pain.
These failed surgeries have left me looking for answers. I have a feeling the surgeon will want to do another surgery on my shoulder and if it turns out worse than it is now my arm may become usable.
My research has led me here and to ask myself the question do I have EDS.
I have tried to explore all possibilities and have found myself coming back and reading more about EDS and saying to myself that’s me.
There seems to be a lack of information out there for EDS. I find that articles are made up of all the same information a lot of the time. That’s why I was hoping someone could shed some light on the subject of surgery.
JimOctober 1, 2014 at 8:37 am #5046BarbaraParticipant
Thank you for raising this topic.
My only experience of dislocation (of sorts) was at the head and neck junction, like yourself caused by trauma. Unfortunately I haven’t had fixation surgery, so I cannot comment upon life after surgery. I can however comment upon life without surgery and that has been, that the ligaments did not heal, as they should have done.
There are many varieties of EDS (Ehlers Danlos Syndrome), which in simple terms is the body’s inability to produce the right calibre/strength/type of collagen. Much of the body is made of collagen and therefore there are many different types of collagen, for each different type of job. Where the body has difficulty producing one type of collagen, whatever it lays down may be substandard to one degree or another, so it isn’t quite as strong, or as effective at doing that particular job and this leads to the many difficulties that people encounter.
So what causes this problem ? Well, some people are at a genetic disadvantage, as their genes may be defective in one way or another, which makes it difficult for their bodies to produce that particular type of collagen. Some people on here have had their saliva tested with companies like ’23andme’ to obtain their own genome ‘raw data’ and have been able to check the various genes for problems. For example
for EDS type I/II (COL5A1 and COL5A2 gene),
for EDS type IV (COL3A1 gene),
for EDS types VIIA and VIIB (COL1A1 and COL1A2 gene, respectively)
and EDS type VIA (PLOD1 gene).
Another factor that doesn’t help is nutritional deficiency, especially of Protein and Vitamin C, as both of these elements are essential to make collagen, therefore people whose diets lack the regular intake of these, are not helping themselves to achieve optimum health. So we need to ensure that we are getting sufficient amounts of eggs, meat, poultry, fish and nuts, DAILY to provide the protein and a variety of fruits and vegetables daily to supply adequate Vitamin C.
Hope some of this helps.
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