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Jennij

Desperate For Help

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Please if anyone can give me advice I would greatly appreciate it....I need to have a hysterectomy for fibroids and am very worried about surgery. I am really sick with dysautonomia and react very strongly to my body having anything foreign/painful happen to it. I just had a couple questionable skin spots removed on my back and the soreness from the skin shave biopsy and my bodies negative reaction to the adhesive from bandages and I'm having a full blown dysautonomia episode. I'm petrified of how my body will handle major abdominal surgery. Please - I'm desperate for answers - how does anyone get through this?? I've never had anesthesia and don't know how I will handle it. I do know that most of the meds I've ever tried for pain make me really sick. Thanks to you all for any advice.

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i had a totally different kind of surgery (cardiac) so obviously it wasn't exactly a similar experience, but it was quite an invasive procedure as a hysterectomy is. Everyone reacts differently to the trauma of surgery and since my surgery was a different type than yours I can only speak to a few general things. As far as the anesthesia goes, make sure your surgeon and anesthesiologist are made aware ahead of time that you have dysautonomia and tell them that your vitals should be monitored even more carefully than normal, and that you will most likely need extra hydration via IV fluids during the procedure. Sometimes anesthesia can make people sick, (nausea, vomitting, etc) but that includes EVERYONE not just people with dysautonomia.

As far as pain meds go, I'm the same way; most of them make me sick and I had a severe chemical sensitivity to both morphine and another morphine-related narcotic they gave me post-op so i did all of my recovery on a high dose of ibuprofen. I'll be honest, it was pretty uncomfortable, but certainly doable. I don't know if this would possibly apply to your situation but I found the thing that helped my pain the most were lidocaine patches, so perhaps that is worth inquiring about?

sending good vibes your way.

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Try not to worry that won't make things better. You could talk to your doctors and provide them with as much info as needed on what you may need (like fluid loading). Express your worries and fears so they know, they may be able to answer your questions! Sneding good thoughts and hope things will work out well for you

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Thanks for your support. I know that worrying is no help and I'm trying to keep that in mind. I think the more knowledge I have going in as well as the more communication I feel I have with the surgical team the better. The surgeon I thought I was going to go with seemed to think it wouldn't be necessary for me to meet with the anesthesiologist ahead of time. This makes me uneasy and now I have less confidence in her as my surgeon. How has it worked for all of you? Were you able to be put in touch with the anesthesiologist who would be doing your surgery ahead of time?

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I was and was taken very seriously. I'm scheduled for surgery where most likely I will get a new joint in my foot. As I'm doing pretty bad with surgery I'll be put in IC after surgery for hopefully a short time. It's not necessary for all of us and may be not even for me but they don't want to take any riscs. I think it would be best you'd let your surgeon know that you feel uncomfortable not meeting the anesthesiologist and ask to change her mind as it could make your mind put at ease!

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I only met my anesthesiologist about 10 minutes before my surgery, but I was able to communicate everything I needed to in that time and he was very receptive. I wouldn't think less of your surgeon for thinking a meeting is not necessary. If you feel like it's something you need to do, by all means make contact with the anesthesiologist but in all likelihood, your surgeon doesn't think it's necessary because she's confident that your care will be under control given that she knows what your health situation is. but I definitely second what corina says, putting your mind at ease is very important so certainly do what you need to so you're in the best emotional/psychological space going into your surgery.

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Regarding the skin reaction from your previous dressing.

If any adhesive product is left on the skin for too long, or when you have an adhesive sensitivity it can result in significant skin irritation including - raised red and blistered areas that often open when the adhesive is removed. It is likely you will require more adhesive products post op for your surgical wounds. I suggest making sure your surgeon and post op nurses are aware that you have a sensitivity to adhesive products. There are dressing that have a lower incidence of causing skin irritation that can be used. For example Mepilex bordered dressing have an absobing center and gentle adhesive edges, Tegaderm film is a clear thin adhesive that is also better on the skin an can be used like tape. Otherwise paper tape change regularly (daily) and use sparingly may also help reduce skin irritation. Another product called "skin prep" can be used to create a film/barrier between the tape and your skin without stopping tape form sticking. ( you likely had white cloth tape called medipore which is quite harsh but often used because it's inexpensive and sticks well )

Good luck!

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I had surgery in May, the anaesthesia really set me back, took me a couple months to get back to where I was before the surgery. It was an abdominal surgery. The benefits of the surgery were worth it, just took a long time to recover and I couldn't take pain meds cause they made my dysautonomia even worse.

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