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Surgery With Pots And Probable Eds

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Daughter #3 (17 years old) has to have another surgery. Surgery #7 to be exact. Anyway since she has now been diagnosed with POTS and probable EDS, I just thought I should ask everyone on here if we need to be aware of any extra risks. This surgery will be an ulner nerve transposition. This is where the dr. tucks the ulner nerve (which is in the elbow) under the muscle of the forearm so the nerve is covered. She can probably have it done without general anesthesia. She has not had any problems during her last two surgeries which required general anesthesia. She had an umbilical hernia repaired in Mar 08, but did have problems with healing of the incision. So in Oct 08, the surgeon went in and repaired the incision( took out scar tissue, etc.). This particular surgeon is amazingly intelligent and actually knows about POTS. She helped get my daughter diagnosed. She also is the first doctor who suspected a connective tissue disorder because of the difficulty with the wound healing. Her partner will be doing this next surgery so I feel very confident that my daughter will be in good hands. The new surgeon is going to call a collegue and see if she needs to do anything differently because of the probable EDS. We don't see genetics until August to get the EDS diagnosis confirmed.

So does anybody have any suggestions/comments/things to be aware of that I should know about before she gets this surgery done? I don't know much about EDS yet and since this surgery will require a lot of connective tissue work I thought I should get some opinions from those who do know about EDS and POTS.

Thanks for any input!


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There are some factors to be considered if your daughter does have Ehlers-Danlos Syndrome.

Wound healing - as you have already found out, people with EDS often have problems with slow healing of wounds and often develop large stretched out scars. (Where I had my reveal device put in I have a scar 5cm x 2cm, usually there would be just a thin line).

Local anaesthetic - some people with EDS don't get the full benefit from local anaesthetic (ie still feel pain after the numbing injections). I don't know why that happens possibly that the anaesthetic gets carried away from the area too quickly by the blood stream. That then raises local with or without epinepherine. Adding epi to local makes the blood vessels constrict keeping the local in the tissues where is was injected, so makes the numbing effect last longer. Some people worry about the epi causing tachycardia so prefer local without epi. However if the lack of benefit is due to clearing of the local then adding epi should help. It is worth thinking if she has ever had dental anaesthetic and if that had any problems?

Some operations (particularly orthopaedic and sports injury repairs) are not as successful in people with EDS because the soft tissues don't behave like normal people's soft tissue.

It is good that the surgeon is finding out about EDS before doing the operation. They may want your daughter to be evaluated for EDS before deciding about doing the surgery. As with any surgery you need to discuss the benefits and possible outcomes with the surgeon so that you and your daughter can make the right decision for her.


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