Anesthesia And Dys....

[Jennij]

I have to have major surgery for which I will be under anesthesia and I've never had it before. Just wondering if anyone had thoughts/experiences on what this is like for someone who has dysautonomia.

[rgny]

I had gallbladder surgery last year and I'm facing a hysterectomy this fall. For my gallbladder surgery, I made mention of it at my preop screening and also met with the anesthesiologist ahead of time so I could explain POTS. I arrived an hour early so they could pump me full of extra IV fluid. I handled the anesthesia well and was able to leave the hospital the same day. My recovery was pretty straightforward with no complications.

[Jennij]

@rgny- thanks for your reply. I'm also having a hysterectomy (open abdominal) and am worried about blood loss. An hour early for IV fluids is a good idea. What kind of hysterectomy are you having?

[rgny]

My doctor is going to try for a laparoscopic-assisted vaginal hysterectomy with both ovaries removed but my uterus is huge and I don't want morcellation so he may have to convert to total abdominal hysterectomy. He'll make the call once I'm under. I will admit to being a little nervous this time just because my gallbladder surgery only took 30 minutes and the hysterectomy will be 2 to 3 hours so I'm not sure how a longer exposure to anesthetic agents will affect me. Plus I'm in the middle of a flare right now and with my first surgery, I was asymptomatic.

Like you, I'm also worried about blood loss and maintaining blood volume and blood pressure, etc. but I just remember the first time telling everyone (I may have even mentioned it to housekeeping, haha!) that I had POTS and I needed extra IV fluid...I even came around in recovery talking about it. Make sure it is written everywhere in your records...my nurse wrote POTS in great big red letters over all of my paperwork. Good luck!!

[Jennij]

Thanks again. Good tip to double check that POTS is clearly written all over my chart. My neuro is aware to do that but I'm not sure how spelled out it is to the gyn surgeon/anesthesiologist. I will make sure to do that. Good luck to you!

[corina]

Anesthetics hit me quite bad, esp the gen.an.'s. For that reason I decided on an epi while having surgery on a herniated disc last year but unfortunately that doesn't work for me either (it used to be much better but somehow this changed). During surgery my bp got quite low and they gave several shots of epinephrine to get it back up. From that day I got slowly worse again and am still fighting to get back where I was. Right now I need to be in bed again quite often. This doesn't mean it will be like this for you, we are all different, it's just what happened to me. Hope your surgery will go smoothly and wishing you a speedy recovery!

[E Soskis]

Postural orthostatic tachycardia syndrome: anesthetic implications in the obstetric patient:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=
AbstractPlus&list_uids=17179264&query_hl=1&itool=pubmed_docsum

Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=
pubmed&dopt=Abstract&list_uids=16698864&query_hl=1&itool=pubmed_docsum

Preoperative considerations in a patient with orthostatic intolerance syndrome:
http://journals.lww.com/anesthesiology/pages/articleviewer.aspx?year=2000&issue=08000&article=00041&type=fulltext

Autonomic dysfunction - anaesthetic management
http://www.anaesthetist.com/anaes/patient/ans.htm

Baroreflex

The above web sites came from a previous DINET posting on anesthesia and POTS/related conditions

You may find them helpful -

Your anesthesiologist should be informed of your condition well-before surgery so he/she is prepared to handle any potential complications. There are certain medications and anesthetics that work better for dysautonomia and others that should be avoided. If your anesthesiologist is not aware of them or what dysautonomia even is, things may not go very well. I am fortunate enough to work with medical professionals and knew which 2 or 3 physicians would be the best at handling my anesthesia - I would take the time to investigate further your choices of professionals - if you have any friends in the medical profession that could assist you by steering you to a few names, it would be helpful.

I also suggest you look into the robotic-assisted lap/hysterectomy. The hospital here uses the "DaVinci" robot. It worked quite well for me and greatly shortened my recovery time. Your physician must be experienced in using the machine or you would have to find someone who is experienced. I had very few complications and although was told I could go back to work in 4 weeks, it actually took 6 weeks beccause of the dysautonomia. Always add more time for recovery than the "normal" expected recovery time - we are special cases! By the way, my uterus was the size of a 6-month pregnant person yet, the machine had no problem removing it via laparoscopy technique.

[rgny]

Corina, I am definitely worried about blood pressure control which is why I keep pushing the date of my surgery back. My pressures usually run 120-110/85-75 but lately they have been around 90/60 and that's with hydration and compression hose; it's gone as low as 80/50. I've recently lost about 15 pounds but not sure if that would affect my baseline blood pressure that drastically. I trust the surgical team to handle any blood pressure problems but I keep myself awake worrying about recovery and how my body will handle it. I'd love to skip the hysterectomy altogether but every doc I've seen has recommended removal. :-/

[corina]

I've been there too re hysterectomy but in the end I decided to try Mirena which was u huge help. It stopped my way too frequent and very heavy periods. I could cancel the hysterectomy. Ladt years surgery was a must, I'm trying to avoid surgery as much asossible as it's been a trigger to me all my life.

E Soskis, thanks so much for the links, I just new about the first one but will copy and safe the others as they fit me better!

[blueskies]

I've had a laminectomy surgery done since being diagnosed with POTS. I made sure my neurologist and the anaethetist both consulted with my POTS specialist. The actual general was fine. It was my first experience of a general where I did not feel like **** afterwards. Pre diagnosis I'd had quite a few operations and always felt so ill from the general, afterwards. I used dread how I felt when I woke up. So I think that the consultation between my specialists was very beneficial. ( I did feel like **** though, because they were operating on my lower back I had to lie flat for days afterwards. Which is bad for my migraine).

I do suspect that anaesthesiology has really improved markedly since I was young. In leaps and bounds.

I also had those weird things around my lower legs, like big bp cuffs, that inflated and deflated -- keeping the blood pumping.

blue

[imapumpkin]

make sure that both your surgeon and anesthesiologist are aware of your situation. explain that you need extra fluids and that your BP is low. When I had heart surgery last year they were very careful to keep my very well hydrated. don't worry about blood loss...they will be monitoring you very carefully and will give you supplements post-op, and if your hemoglobin is too low, a possible transfusion...but like I said they're going to be very carefully monitoring it so don't let anxiety over it make you crazy.

[Jennij]

@ E Soskis: you said "By the way, my uterus was the size of a 6-month pregnant person yet, the machine had no problem removing it via laparoscopy technique." That's what they're saying my uterus is as well and they said in order to remove laparoscopically it would be with morcellation, is that what you had? They said that a vaginal hysterectomy was not an option due to the size of my uterus although that's the one I would prefer the most.