I have auotnomic dysfunction through small fiber neuropathy but also have peripheral neuropathy. No neurologist in our area would see me because they did not feel they had the background. This is a common problem. I had to search for one and three of the places that have neurologists in this area are Vanderbilt, Cleveland Clinic and one of the Mayo clinics . The only way to diagnose the small fiber type of neuropathy is by a punch biopsy. I had mine done at the Mayo clinic in Arizona. They also checked catecholamines and did the QSART test. I do have hypothermia and my temperature has dropped about 7 times in the past year and a half. I have also had several surgeries and am having another next week. They will insert an art line to track my labile BP and take extra precautions for aspiration. I always ask for extra attention for keeping me warm due to my sudden drops in temperature. This last time I requested they not remove the ET tube until I was awake and to keep the head of the bed elevated in RR. Anesthesia muscular effects are reversed before I leave due to muscle weakness. I also have low oxygenation so attention to that as well. I hope anyone with oxygen that is low at night has had a sleep apnea test. I always want a pre op visit eye to eye with the anesthesiologist so we can go over particulars.
I have the same question. I'm suppose to begin proton radiation treatments in the next week or so but before I do, I need to have fiduciary markers placed which basically mean they will have to drill 4 4mm screws in my skull. I'm just starting to experience signs of autonomic nervous system problems like rapid heart rate when standing and feelings of being hot. I was wondering should I proceed with the outpatient procedure.
Can you go to a place where there is real familiarity with dysautonomia? Then, when the anesthesiologist is told about your sensitivities and your condition, hopefully they would carefully choose what you are given. If you are in need of a non-elective type surgery, I hope you will find the place with an anesthesiologist you feel most comfortable with. You may want to find out how many anesthesias that doctor has given (how experienced they are) and if THEY feel comfortable with giving anesthesia to someone who has dysautonomia.
I have a great fear of surgery and anesthesia. I have had bad symptoms after anestesia for 1 to 2 days. I cannot tolerate efedrin (eg. cough medicines), it was given to me twice when cholecystectomy. There are still two other cases of poor recovering from anesthesia (eg. short anesthesia with cardioversion). I have dysautonomia susp. How coud I have my nect operations?
Thank you for you additional comments, rbird. I just found out today that there is a neurologist in Denver who works with patients with dysautonomia, and they suggested that I postpone my surgery until after I have had a chance to speak with the doctor there. It's just a torn miniscus in my knee that we're talking about, so of course I can postpone it until after I meet this neurologist. I so hope he is a humanitarian, and not just in medicine to impress people with his knowledge.
Wishing all of you the best!
Surgery will most likely cause a flare in your symptoms. I would seek a second opinion. most insurances have allowances for that. you need someone who is sensitive to your problems.
As far as the actual surgery itself, you will need to speak to the anesthesiologist who will be providing your care. They do a thorough interview and discuss the different types of anesthesia that can be used - the risks and benefits. they will be the one who is monitoring your pulse, temperature, and oxygen saturation during the surgery - they will need this information. Good luck
I don't know what kind of autonomic dysfunction I have. I haven't seen a Neurologist yet. I'm still waiting to be approved to make an appointment with a Neurologist in my state (my insurance doesn't feel they should have to pay for one out of state), so I have to exhaust my options here first, while I exhaust myself as well. I do have a physiatrist (doctor of physical and rehab medicine) who is working with me. She told me that I have dysautonomia and is trying to help me find a neurologists who works in that area of expertise. In the meantime, my orthopedist wants to do surgery on the torn miniscus in my knee. He doesn't think I will have any problems, because he doesn't think I have a problem. I tried to read through the information on potsplace.com. I'm confused as to what kind it would be. These are my symptoms: Neurogenic bowel and bladder, diminished oxygenation (80%) while sleeping, resting heart rate 120 (tachycardia?), temperature intolerance (I don't sweat). I have had some orthostatic intolerance, but it comes and goes, and have no stomach problems. Other diagnoses are Spinal Stenosis and Peripheral Neuropathy.
Thanks for you help.
I don't know what kind of autonomic dysfunction you have, so it depends. I have HyperAdrenergic POTS and surgery is big NO NO. For me to go under they would have to put an arterial line into my heart for anesthesia. I was supposed to have a complete hysterectomy but it is now cancelled until it becomes life threatening. Do you have tachycardia with your dysfunction? If so, you need to see a cardiologist and make sure it is safe for you to go under anesthesia. I hope this helps. You might want to check out the website www.potsplace.com They have lots of information about POTS and other autonomic dysfunctions.