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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Anyone had an implanted port?

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Old 04-29-2016, 05:17 PM   #1
lovefamilypets
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Confused Anyone had an implanted port?

Hi All,

My Dr has recommended I get an implanted port put in in my upper chest (I think they also call them Port-A-Cath) b/c every time I get an IV or blood drawn it causes a huge flare. I'm worried about this since it's surgery and also bc I have full body CRPS. I'm afraid it could cause huge flares in my chest region or something to that effect. Or that my body won't be able to handle this foreign object and the CRPS will go nuts.

If any of you have had a port put in since having CRPS, how has it gone? Did it cause a flare or cause the CRPS to spread?

Thank you for sharing!
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Old 04-30-2016, 08:26 AM   #2
SandyRI
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I have had a port for several years. The first one that was implanted was done on my right side, which is my affected side, and it caused such a horrible flare I needed it removed. I waited a whole, then had another put in on the left side. I coordinated the surgery with a ketamine infusion and did fairly well.

Good luck!
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Old 04-30-2016, 12:34 PM   #3
lovefamilypets
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Quote:
Originally Posted by SandyRI View Post
I have had a port for several years. The first one that was implanted was done on my right side, which is my affected side, and it caused such a horrible flare I needed it removed. I waited a whole, then had another put in on the left side. I coordinated the surgery with a ketamine infusion and did fairly well.

Good luck!
Thanks Sandy for your reply. That was my concern, especially since both of my sides are severely affected.
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Old 04-30-2016, 02:25 PM   #4
NurseKris
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I don't have a port but I have accessed many while working. One thing to keep in mind is accessing a port does involve a needle. It's a small needle but still a needle.

Unfortunately there is no way to tell exactly how your body will respond. How often are you getting an IV or blood draw? Is it possible to decrease the frequency of the test?

Good luck!
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Old 04-30-2016, 05:43 PM   #5
lovefamilypets
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Quote:
Originally Posted by NurseKris View Post
I don't have a port but I have accessed many while working. One thing to keep in mind is accessing a port does involve a needle. It's a small needle but still a needle.

Unfortunately there is no way to tell exactly how your body will respond. How often are you getting an IV or blood draw? Is it possible to decrease the frequency of the test?

Good luck!
Nurse Kris- thank you for this information! The doctor and nurse did not tell me that! They made it seem like this would bypass any needle stick completely once I had the port implanted.

I'm getting IVIG 2x every 3 - 4 weeks; I'm going to see if my Dr. would consider 1x every 3-4 weeks or what his thoughts would be on that. THank you so much!
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Old 06-06-2019, 01:00 PM   #6
Hford80
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Default Will you be more specific?

Which did you do first, port or ketamine? How much time between the two? Also, do you remember th dose of ketamine? I typically get ketamine every 8 weeks and am now having to get IV fluids for autonomic neuropathy over the summer. Needle sticks are now causing flares of my previously unaffected hand. I see every member of my team this month so want to be informed and ready to prepare my case.

Thank you in advance!
Holly


Quote:
Originally Posted by SandyRI View Post
I have had a port for several years. The first one that was implanted was done on my right side, which is my affected side, and it caused such a horrible flare I needed it removed. I waited a whole, then had another put in on the left side. I coordinated the surgery with a ketamine infusion and did fairly well.

Good luck!
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Old 06-24-2019, 10:00 PM   #7
gigicnm
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Holly,

You may get more responses if you post this question as a new thread.

If there are no issues accessing your veins (if it's pretty easy to put an IV in) and the problem is with pain and flaring from an IV stick you could ask your doctor for a prescription for EMLA cream. You apply the EMLA cream to wherever area they usually put an IV in an hour before you are scheduled to have the IV put in. The cream numbs the skin so you can't feel the IV going in.
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