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griffism

Surgeon To Place Portacath

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I think that this is the first time that I have posted, so I will give a brief overview of my condition. I was diagnosed with hypovolemic POTS almost two years ago. I have tried all of the medications in any combination that you can think of. The only treatment that has helped me feel remotely normal is IV saline therapy. As a result, I am hoping to get a portacath placed so that I can receive this treatment regularly. However, I, also, have EDS-Classical Type, so I am hoping to find a surgeon that is familiar with EDS. I was wondering if anyone knows what type of surgeon places a port? Also, I was wondering if anyone knows of such a surgeon in the Dallas or Houston, TX area? Any thoughts are greatly appreciated, as I am hoping this will allow me to go back to school.

Stefanie

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Hi Stefanie,

I am glad to hear you are finding some relief from the IV saline. I wanted to say that I have a port that was placed about 3 years ago. I also have EDS and the surgery was no problem. I had more issues with the anaesthesia. The local anesthesia didn't numb me at all so they knocked me out and when I woke up I had a brand new port.

I love my port, it is so easy to take care of. I also have a picc line and I am not as thrilled with that as I am of the port. ( keeping the picc line dry is hard )

Your port will make your IV's much much easier, I think you will be pretty happy with it. My doctor was just a basic surgeon at Stanford, I don't really know what his title was, he knew very little about EDS, but he had put in many ports.

I think the ports can be put in under a local anesthesia but since you have EDS I am not sure if you can get numb.

I hope you find a doctor soon and can get back to school !

Hugs,

Rebecca

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Good luck Stefanie. I hope this goes well, happens soon, and helps you get to where you want to go.

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I'm getting a port placed on Thursday. I get regular IVIG infusions and the low blood volume from POTS has made it difficult to find a good vein to stick. My doctor referred me to an interventional radiologist to do the the surgery. They are part of the hospital system where I receive my infusions. Good luck!

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Stefanie,

I apologize in advance if I've missed any posts where you've mentioned this procedure. I wanted to see if you had the portacath placed and how you were doing. Hoping your search for a surgeon went smoothly!

Clb75,

Was also just checking in to hear how the procedure went. Have you had your infusions with it yet??

Sarah

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Hi Sarah,

Yes, I had it placed about two weeks ago. I was nervous about the anesthesia part, but everything went smoothly. I'm still a little sore but doing ok. The surgery itself didn't take that long, I spent more time checking in and getting ready than the actual procedure itself. I had an infusion about a week after it was placed and it worked great. They put a numbing spray on it since I was still sore from the surgery but said I probably wouldn't need it next time. The infusion worked the same as usual and I didn't notice any differences. Everything is working well so far.

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Im sure everything is going to go just fine when you meet with the surgeon. If for whatever reason he isn't 100% comfortable, I bet he can refer you to another surgeon who will be able to do the procedure.

I'll be really happy for you when all of this is over and you can get back to school and your normal routine! Hang in there ;)

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Hope everything goes well for you. Tyler is doing great with his and has not had any problems.

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