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ANCY

Advice on upcoming surgery

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Thank you all in advance for your replies. 

I will be having an open jejunal tube replacement on Thursday and was wondering if anyone had some insight to share? Any ways to handle anesthesia better? I am not a novice to anesthesia, just would like to know if there were any tricks for a faster recovery time. The surgeon is concerned because last time my vitals tanked and they had a difficult time getting me to wake up.

Especially to those with EDS what are some more important things to bring up with the surgeon? I do have trouble with wound healing and have a history of dehiscene. Any advice on facilitating the healing process? I am concerned as this will be the 3rd time opening my abdomen in the same location, and a rather large incision. Last time the surgeon resected the old scar tissue but the tension on the site seemed to pull it apart even more. Any advice would be appreciated. Thanks so much!

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I've had 8 ab surgeries. I have EDS too. I react to adhesive so I  have them staple me instead of tape. If you tolerate adhesive it will hold the incision together better. 

I have trouble with anesthesia also. Have to have less and give anti naseau meds IV with it. The doc also gives me cortisol as a support for my adrenals during the surgery.  They try to not completely put me out, if possible. I tanked during my complete hysterectomy and clean up. They almost lost me. Since then they are careful to not put me under too far. 

I know which pain meds work for me and they have that on board before I wake up. Always with anti naseau meds. Zofran works good for me for that. 

Alot of the recovery for me is how positive I can be going in to surgery. I've noticed if I'm a wreck and worried, it has been a worse recovery. 

I hope things go well for you. 

Issie

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Thank you for the advice!

They stapled me last time but after they took them out the wound came apart. They said they could not use glue on such a large wound, would have been nice though! 

I'm sorry you had such difficulty with your surgery, how scary!  We tried to ask the surgeon to forego the anesthesia the first time but she said no way because if I move around at all during it I could do a lot of damage. I will talk with the anesthesia dr to see if they can use as little as possible though.

They did premedicate for nausea and pain last time and I will ask them to do so again. Thanks for the reminder!

Thank you! I hope you are doing as well as can be. 

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Hi, Ancy! How are you feeling since the last update? I hope you are doing well!

For all of us on Ivabradine: I had surgery last summer and had some bradycardia issues ( Into the teens). The anesthesiologist was fantastic and was well prepared, but they felt the Ivabradine could have been the cause combined w/ Dysautonomia/POTS. There is an article I found interesting,  I'm having trouble pasting it atm,  you can google-scholar "ATTENUATION OF HAEMODYNAMIC RESPONSE TO LARYNGOSCOPYAND ENDOTRACHEAL INTUBATION USING INTRA-ORAL IVABRADINE: A CLINICAL STUDY"    Of course, then just the general tips for compression and fluids before and after!  Will keep you in my thoughts!

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2 hours ago, ANCY said:

Thank you for the advice!

They stapled me last time but after they took them out the wound came apart. They said they could not use glue on such a large wound, would have been nice though! 

I'm sorry you had such difficulty with your surgery, how scary!  We tried to ask the surgeon to forego the anesthesia the first time but she said no way because if I move around at all during it I could do a lot of damage. I will talk with the anesthesia dr to see if they can use as little as possible though.

They did premedicate for nausea and pain last time and I will ask them to do so again. Thanks for the reminder!

Thank you! I hope you are doing as well as can be. 

For us EDS people, as you know, it takes alot longer to heal. They have to leave stitches in longer, etc. 

The anesthesia doc had to be sure they had me under enough. You don't want to be too alert and feel things. My last surgery was to reattach my foot. Yes, broke it off my leg. They did a block and that allowed them to not put me under too far. I didn't remember anything though. I did fine through it all. Except had wound issues. Got cellulitis from that one. Horrible pain. Don't wish that on anyone. 

I think the adrenal boost with cortisol has been very important for me too. 

Issie

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Sarah -  thank you so much! I will look for the article. I'm sorry I have not figured out how to edit my tag line, I'm not currently on Ivabradine but thanks for the heads up! Since the concussion, bradycardia, and pacemaker my cardiologist has not put me back on it. I will have my pacemaker check in a couple weeks and then he will decide if he thinks I need it according to what my heart rates been doing. I have been making a lot of progress by the way, hopefully this surgery will not knock me to far back... I will have to stop the exercise for 2 weeks or so so I know I'm going to looose some ground but hopefully not to much.

Issie- Ouch!!! I can't even imagine! One of the marvels of modern medicine though, at least you didn't become a permanent amputee! They did a block for me last time, similar to when they do a hysterectomy, but they left the needles in place and kept a constant flow of the medication. It was so we could try and avoid the narcotics for the pain. I will ask them about it this time but it's a little diffrent since it's outpatient surgery. I will see about the cortisol, however I have a bad history with it... 

 

Thank you both!

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I don't have any advice, but I'm wishing you all the best! Sending much positive energy your way :)

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Jknh9- thank you so much!

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Hi ANCY

For my surgery of a few weeks ago between lots of extra IV fluids, IV Zofran and Reglan and use of many internal sutures and steristrips for the incision I did pretty well. Because of difficulty waking up, tachycardia and hypotension I just end up in the recovery room being monitored longer. It happens every time. When you have to be fully sedated and general intolerance to anesthesia is an issue it's difficult for the docs to try and figure how to adjust the anesthesia to avoid all the side effects we sensitive ones are more prone to.

I wish I could think of something to suggest that might prove helpful. I'm so sorry you are having to go through this yet again.

I'll be praying for you tomorrow.

God bless,

  Janet

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Thank you all for your prayers, support, well wishes, and advice!

Surgery was successful and I did fine while I was under anesthesia, trouble came after though.... My blood pressures were dropping and the more meds they gave me to get pain and naisea under control, the more it droped. we were all set to go home and then they got me up to go to the restroom and things went south... I started going into shock and, for the first time since the pacemaker, came very close to passing  out. I am thanking God that i didnt pass out! So ended up staying at the hospital till yesterday afternoon.  Thankfully by then they had figured out a way to keep my pain under control without my blood pressure bottoming out. 

I was able to ask the surgeon to take extra care in clossing my abdomen, which she did, and stitches instead of stables. Anesthesiologist was very thorough in gathering information to how best take care of me so actually ordered a pacemaker check prior to surgery. It was neat to find out my un-paced heart rate is still sitting low, at that point, it was 41. It is controlling my heart 87% of the time, meaning that if I didn't have the pacemaker I would still be miserable and passing out! So so glad I have it!!!

Thanks again to all of you!

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Well... PT came out today and he took the dressing off of the wounds and it looks like they may be infected. Could you please keep praying! We are unsure what they will do but my PT called MD and MD said go to the ER. So off we go again...?

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I'm so sorry, sending good thoughts and hope things will get in control real soon!

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I'm sorry too. Hope things turn out okay. I did better with staples. The stiches I had in my ankle and leg also got infected. I don't know if my skin just didn't like the suture material or what. Antibiotics helped pretty fast. I had to leave the stiches in alot longer than what the doc would have liked. He said it was the issues with connective tissue due to EDS. Just took alot longer to heal. 

Issie

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Thank you Corina and Issie.

So both the j tube site and the incision are infected. MD wants to give oral antibiotics a try, well I'm putting them through the tube. Has nursing coming out daily to look at it and wants me to see my surgeon earlier, Monday or Tuesday. The hope is that it will be improving by then... if not, well, I don't know what they are going to do... it already looks worse than when we left the ER, and now I've got a fever.?

So of a diffrent nature... Does EDS cause trouble with intubation? Usually by now I would have my voice back and PT is concerned they damaged my vocal cords or something and it could be permanent?... wants to send speach therapy out but I'm not thrilled about that idea... anyone with some ideas? I'm also having trouble choking btw.

Thanks so much!

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We are so fragile. Anything is possible. You may need to see a throat doc and make sure all is okay. May have to take a look with a light/scope. So sorry. 

The antibiotics had helped me by 2 days later. Hope they help. It was really painful so hope you have some tolerable meds. 

Issie

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A good idea for sure! Still hoping it will just go away but this is worse than the other times I've been intubated.

Thank you for caring!

I hope they do work I'm just not so sure that it's only skin deep anymore. I Would describe it more, but suffice to say, it's gross!?

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I am so sorry for your complications and will continue praying!  As for the intubation, I don't know about that and EDS, but I do know that my youngest daughter had a bad cough from a virus that got so bad that it did do damage to her vocal cords and voice box.  Even though it's been about 9 years ago, maybe longer, but she still has to use her Flovent inhaler.  She doesn't have asthma, per se, but there is an inflammatory issue there.  But, the only medicine that would calm it was Benadryl.  Don't know if your body can tolerate it with all your other meds right now, but had we started it in the beginning of the cough, I think there wouldn't have been any damage as she was only about 8 at the time.  The nerves in our bodies and the fragility of our skin makes things like this more complicated. 

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Thank you dizzy girls, I'm sorry your daughter had to go through all that. I hate seeing little ones suffer. Did her voice change from it? Did she work with a speech therapist?

Thanks so much for praying! 

You guessed right, benadryl is not an option right now... Pain med, we think, is knocking my bp down already, unless there's something else going on like sepsis that would explain bp. So because we already know that benadryl drops my bp I wouldn't dare try it. Not to mention with sleep apnea it's better to avoid sedative drugs...

But thank you for the idea!

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The sound of her voice didn't change, but if she doesn't use her Flovent, the tickle and cough start to come back.  I think, though, that we should have worked with a speech therapist, because I think it changed the way that she speaks and is hard to understand sometimes. 

Hope you are doing better today, hang in there and I'll keep praying!

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Thank you dizzy girls! I guess it's speach therapy for me, the home care nurse that was out today concured with PT that i need speach at least for a little while. She is more concerned about the choking though.

Today has been rough, once again spent it in the ER, per home care nurse, with still no real answers as to why my incision is infected or why it's getting worse. They told me to just try and get in to see my surgeon tommorow and let her decide what to do, of that means opening it up, draining it or something. It has been so tiring... usually after surgery you rest but I have not been able to do so yet.

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I saw the surgeon and she said the culprit of the infection is that I'm allergic to the sutures she used, go figure. So she opened the incision in 3 places to allow it to drain. The hope is that the infection will clear with the antibiotics and then next week when I see her she will try and pull the suture out since its continuous. If she did it now the wound would just open up all the way. This is all to avoid having to open it completely and place a wound vac for a month. She said the rest of my symptoms (bp,hr,fevers ect...) are probably just that I have not cleared the anesthesia from my system yet.

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Ancy,

I'm so sorry to hear about the wound infection. I will keep you on my good healing thoughts for a quick resolution to this. 

Katie 

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Thank you Katy! 

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So sorry. I know staples are better for me. The sutures in my foot/leg did the same thing. Hope it starts to clear soon. 

Issie

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