TCP Posted July 4, 2018 Report Share Posted July 4, 2018 Hi Everyone I have POTS, EDS, Small Fibre Neuropathy, Mast Cell/Histamine issues, Secondary Adrenal Insufficiency, Low Thyroid and all that goes with these remarkable conditions. I have a macroprolactinoma on the pituitary gland (2.5cm) and I've decided to proceed with surgery. Any tips regarding general anaesthetic would be gratefully received. The last surgery I had triggered (in part) POTS and SFN, so I am concerned about my damaged nerves, my BP and HR. This surgery is transsphenoidal and I will hopefully stay in the hospital for 4 days afterwards. My op and the recovery are a real concern as I am a lot more unwell than I was 11 years ago. I am currently taking Gabapentin, Nebivolol, Hydrocortisone, Levothyroxine, Evorel HRT patch, Nortriptyline and Cabergoline. Many thanks in advance. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 4, 2018 Report Share Posted July 4, 2018 Hi @TCP - I am sorry that you need surgery but then again - it may help you??? - I too have issues with anesthesia but I do not have all of those issues you have to deal with. In my case I have hyperPOTS and often take seizures during or after anesthesia d/t excessive vasoconstriction caused by sympathetic overcompensation. In the past I had a anesthetist who was very knowledgeable in dysautonomia and dealt with all of my anesthesia issues. Once she gave me a spinal while lying down ( usually performed while sitting up ) to prevent BP drops. It went really well! I am not sure if that is something that will work for your procedure. I am sure that any major hospital should be able to educate themselves about your special circumstances - no? -- I am sorry that I have no better advice and I wish you the best of luck. Quote Link to comment Share on other sites More sharing options...
dizzytizzy Posted July 21, 2018 Report Share Posted July 21, 2018 @TCP: I haven't surgery since my diagnosis, but I did talk to my EP about dental surgery and sedation. While yours will be more complex, he mentioned the importance of getting at least a bag of fluids prior and wearing compression. I would push for an anesthesiologist who is familiar with dysautonomia. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted July 22, 2018 Report Share Posted July 22, 2018 I've been knocked out for surgery and testing at least five times since my symptoms showed up. I was well hydrated before my 24 hour fasts, I didn't have any problems except some initial queasiness when I woke up which I suspect was a symptom of depletion because I hadn't drank or eaten anything recently. I was groggy for a couple of hours but that is normal for anesthesia. If you have concerns call the office of the anesthesiologist because it's their call in the OR. Discuss your concerns--ask their advice about what you can do to reduce your symptoms and stress. Quote Link to comment Share on other sites More sharing options...
Don Posted July 22, 2018 Report Share Posted July 22, 2018 I had general anesthesia when I had my thyroid totally removed. I have autonomic neuropathy. I had to fast with nothing to eat or drink after midnight with only a small glass of water to take my medication. The surgery was fine. They had trouble waking me. It took over an hour. They had to use several medications to get me coherent. I was very dizzy and disoriented. The doctors monitored my vitals the whole time. Before surgery I met with the nurse for my preop appointment. We discussed my neuropathy and what it does to my body including cardiac and pulmonary issues. They spent a lot of time with me. I also had to get clearance and physicals from my cardiologist, neurologist, and primary. I brought the surgeon the records. Back to my surgery, there are meds the anesthesiologist can give you during your procedure to control things like your BP and HR. I have a Brady/Tachy rhythm. This was controlled during surgery. They monitored constantly. I actually woke up with a small bruise on my arm from the BP cuff. I did stay the night in the hospital for observation due to high BP. They gave me epi to help me wake up amongst other things and my BP went to 180/120. I think it scared the doctors. I had surgery at a naval hospital and they admitted they don’t see many patients with my condition. They were able to treat it with IV meds to bring it down. By the next morning, it was normal and I went home. Pretty smooth. Quote Link to comment Share on other sites More sharing options...
TCP Posted September 1, 2018 Author Report Share Posted September 1, 2018 Hi everyone and many thanks for your replies. Sorry, I took so long to get back to you but I didn't get any notifications. I think I will try and get to talk to an anaesthetist and may request that I do so when I have my pre-op assessment next week. I have had 6 surgeries before but when I was classed as having ME/CFS and the health problems got worse after my last surgery in 2006. I am guessing that it will be a few weeks before the op and hoping it doesn't get cancelled. Thanks again! Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted October 21, 2018 Report Share Posted October 21, 2018 Hi TCP, just wondering how everything went. I hope you are well! Quote Link to comment Share on other sites More sharing options...
HelenK Posted February 11, 2019 Report Share Posted February 11, 2019 Hi everyone, I hope you don't mind me resurrecting this thread. I've had problems with my teeth over the last few years but have avoided the dentist. It's reached the stage where I couldn't avoid it any more and I need to have the roots of two teeth removed (the teeth themselves have broken off from snapping around a couple of fillings). I visited the dentist and after discussing the POTS with him and showing him my diagnostic letter, he's concluded that the best plan is for me to have general anaesthetic to have them removed. I'm quite relieved as I really don't cope well physically with anything other than very short appointments, but also a little apprehensive as I've never had a general anaesthetic before. One of the reasons that he's decided on a general anaesthetic is he said to remove one of them, which is on my lower jaw, he'd need to sit me up to remove it so that he could get a better angle, but I can only sit up for very short periods without fainting. I don't know how they'll attempt it with me being under general anaesthetic, but I just wondered if they do somehow prop me up to do it, will that still affect my POTS with me being unconscious already? From reading the comments on this thread it sounds like the best advice is to ask for a saline drip either during or after the operation, which is really helpful advice. One of my concerns is that you can't eat or drink for 6 hours before the operation (I think? As I haven't had the appointment letter through yet. I'm in the UK) and I cope with my POTS by eating salty foods regularly and drinking water and salt drinks. Any advice would be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
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