Dear all, I’m hoping you wise and knowledgeable people will be able to help.
I have tried to research about having a General Anaesthetic when you have PD. My current general neurologist has advised trying to avoid surgery because GA can mean some patients get significantly worse and don’t recover neurologically post surgery even after months. I couldn’t find anything that mentions this in my search so far. I’m waiting to see a more experienced movement disorder specialist with interest in YOPD but that’s not till March. What do you guys think or what had been your experience on this?
My dilemma is as well as YOPD, I have two other niche conditions that require and may require surgery- thoracic outlet syndrome and severe funnel chest/ Pectus Excavatum that compresses the right side of my heart and causes a lot of issues. The second surgery causing the heart compression cannot be done until the thoracic outlet is addressed if I decide to proceed with it.
The thoracic outlet syndrome is on the same side as my PD and as it affects the blood flow to my arm and back out again I’m sure they are interrelated. It causes pain, weakness, claudation, stiffness and my arm/ hand is usually purplish/ freezing. Some overlapping of PD symptoms. My vascular surgeon thinks it would be helpful to do the surgery to remove the first rib and make more space for the nerves, artery and veins passing through thoracic outlet to reduce the compression. But I don’t want to make my PD significantly worse as a result of undergoing GA. I have two daughters aged 9 and 12 and want to be as well as I can for as long as possible.
As per my other posts I’m not on any medication for PD at the moment as only 6 months diagnosed. I use red light therapy, supplements, good diet and intermittent fasting, exercise and meditation.
Thank you for any insights in advance.
I wish there was a doctor who saw you as a whole person rather than looking at just their part of the body! I’m sure my issues are interrelated.
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Chastar
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I’ve had 2 GAs in my life. One a year and a half before PD DX. One a few years later. DXd coming up 5 years ago (Feb 2020)
Both interventions in my case (v. subjective, n=1) made things worse. I didn’t take detailed notes but in the immediate aftermath of the procedures I am certain I developed breakthrough symptoms that never really disappeared - in the first case leading to the DX. The trouble is that if you need a GA then you need a GA. I don’t believe the chemicals alone caused the damage but I truly believe they accelerated matters to a degree. Many doctors wouldn’t entertain this kind of analysis or encourage any sort of debate in this area. I think that will change. Very best of luck. And a HNY ‘25.
Thank you for explaining how GA affected you. I’m sorry to hear your procedures made symptoms worse/ accelerated PD emergence. It’s very difficult having PD and co- morbid conditions and manage it at the same time if surgery is needed.
hi ! As a former hospital risk manager at a surgical hospital i’m going to chime in. Hospitals are not safe places…for anyone, but especially us parkies. There are several reasons for this, but as you are newly diagnosed, YOPD (I assume under 52) and not on meds the main ones (getting your meds on time, contraindicated meds, falling) don’t really appky to you. There are 3 things that you can do to stay safer in the hospital : don’t go alone!! Have someone with you, every step of the way and spend the night with you. If you don’t have someone pay a sitter to stay with you. Having that extra set of eyes, ears and hands is important. Second, tell EVERYONE you encounter you have Parkinson’s, especially the nurses and the anesthesia team. Do not assume anyone talks to each other or knows anything about you. Do it over and over. Be annoying about it. Thirdly, make them MOVE you! Insist on a PT eval immediately and get on your feet and moving as soon as you can. As soon as its safe of course. For god sake don’t go to the bathroom without assistance that’s literally how most people fall in the hospital, if I had a dollar for everytime someone fell trying to get to the bathroom i’d be rich. anyway the main thing is stay as short a time as you have to and get home safe. The Parkinson’s Foundation has a good guide parkinson.org/hospitalsafety i highly recommend it. Best of luck! Oh and i had GA twice this year and was fine, met a nurse who was just diagnosed YOPD himself and a phlebotomist whos dad has PSP, if you speak up you meet cool people too! Oh and heres some science
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I think your point about moving as soon as possible is so important. Even resting in bed a few days when ill has set me back due to the lack of moving, so I reckon that the main reason for deterioration after GA may well be due to the post op inertia. Must keep moving folks 🤸♀️
Thanks Parkie! I agree with what you say. Any days I don’t do physical activity I’m much stiffer and my walking is worse next day. If I’m in bed for any length of time ill it takes me much longer to get back to baseline.
I had TOS surgery and C4 discectomy before I was diagnosed with PD. My PD symptoms had already begun but I wasn’t aware. Both surgeries were necessary for healing. I had put off the TOS surgery until I had no use of my R arm and it took a year for my swelling to go down. But when I was tested for cognition etc. before my DBS five years later my scores were in the 99th percentile in some categories. I kept on a no sugar low inflammatory diet and I think that was important. I will avoid GA as much as possible because it only makes sense for it to effect brain health but I am glad to have had my surgery options at the time.
I was diagnosed with mild TOS in 2013 then was in a car accident in 2015 which heavily impacted my neck. My first PD symptoms appeared 6 months after when my right arm became stiff and rigid on the same arm affected by TOS. I didn’t realize it was PD until after I had two surgeries so yes, it seems interrelated.
Ok- thanks for this. Sorry you had TOS troubles too. It is a complete pain and hard to find specialists who know about it/ believe in it. I was kind of hoping fixing the TOS would help my PD symptoms some but again nobody can answer.
I avoided GA all of my life, had it twice up until this fall. I had to have an MRI prior to DBS under a general and then twice with DBS surgeries. Other than a sore throat I had no issues or exacerbation of my symptoms. However, there are certain meds to be avoided. Do a search on Parkinson’s and anesthesia and you should come across a list of meds to avoid. Once you have that, make sure to talk to your anesthesiologist before surgery.
Thank you everyone, very kind of you to reply. I really appreciate your thoughts and experience on this. Food for thought on both positive and negative experiences of GA with PD and how to proceed!
just been reading about everyone's experience of GA
I have had GA for 3 cataract ops 1 knee op, DBS and replacement of battery op, broken nose realignment and MRI scans since diagnosed with PD 23 years ago
I have had no problems after but did make very clear to all of team had PD and found the anaesthetists very helpful and reassuring . Also husband there to ensure all ok re meds etc
I hope this reassures you that generally GA an d PD do not necessarily mean problems
Thank you Cleo, that is encouraging to hear that you’ve done fine with GA. I’ll definitely take a list of drugs that aren’t recommended if I go ahead with surgery. I appreciate you taking the time to respond.
I’d try as far as humanly possible to get your surgeon to use an epidural or similar. They’re reluctant to but a full anaesthetic isn’t good for a poorly brain 🧠. But then again I’ve just re-read your post and notice that you’ve only been diagnosed 6 months. In that case have the general: I had to have two for my DBS and had no problems.
Hi A... ..........Hope things good with you. I was very persistent with shoulder surgery to get a nerve block plus a regional type anasthetic- who wants to take a chance if you don’t have to.Dbs getting closer for me as an option.
The surgeon I would use told me GA can be avoided in main surgery, but unlikely when putting controls in as it could be painful.
A, off GA topic, is protein the same problem with dbs as prior to the procedure? Thanks mate.
Thank you Jeeves. If I go ahead with surgery I will ask about non GA options to get the full picture/ see if there is an option. I don’t know how I would fare with being awake and hearing my first rib being removed and the dissection of the scalene muscles. I feel less able to tolerate high stress situations now I have PD!
I, too, try to avoid GA as much as possible. I had a knee replacement almost 10 years go and within several days of the surgery, exhibited my first Parkinson’s symptoms. I didn’t know it was Parkinson’s then; I just thought I was having a rough recovery. My theory is that I may have developed it later in life but the GA and anti anxiety meds exacerbated the process. I had my other knee done with an epidural and a lumpectomy done this year with light anesthesia and both recoveries were much easier.. This was after demanding to meet with the anesthesiologist and giving everyone the printed list of contraindicated medications for Parkinson’s. I could tell the hospital staff thought I was overreacting but I wasn’t there to make friends. Best wishes for you on your journey!
Thanks Diane, I think it’s great if you can do without the GA for some procedures, it seems to be more and more an option . The operation I may have is resection of the first rib and removal of some of scalene muscle to make more space for artery, veins and nerves in the thoracic outlet near shoulder. I don’t think they can do epidural for this kind of surgery unfortunately.
I understand they will need to use GA but there are different combos of drugs they can use. I have a list of contraindicated anesthesia meds that I found on line. It’s a lot of work but you have to educate yourself and be prepared to advocate for yourself
hi. I had over 4hrs ga for a cardiac ablation in 2018. Age 67. Not on meds at that time. Woke in a confused state. My tremors appeared strongly on my right side for the first time and a jaw tremor began. Didn’t go away but responded to pd meds. Could have been the radio frequency lesioning of the heart tissue also caught the vagus nerve. That is quite common. Could have been the GA. My wife had been told she could be there when I came out of theatre but she wasn’t allowed when it came to it! (UCH London). The ablation was successful in stopping my afib and allowing me to exercise so that worked but I would not repeat it! Great advice from other posts especially having someone to fight your corner and bring daily food parcels!
I would avoid general anesthesia if it all possible. Both movement disorder specialists that I have seen in my lifetime have told me if it all possible to avoid it. Similarly I received the same recommendation from an anesthesiologist in the family. Recovery from anesthesia can be quite slow. I never had any Parkinson's symptom until awakening from a sinus surgery when I was 35. I awoke with Tremor in my left pinky finger and severe anxiety. Never went away and a couple of years later was diagnosed with Parkinson's. Recently had back surgery and chose a minimaly invasive endoscopic conscious sedation for that reason. would only choose GA if there was absolutely no other alternative. No need to have 20 people chime in attempting to contradict. I've done my research. Good luck to you
surfdoc1 I presume you include me amongst the 20 people chiming in attempting to contradict you which you seem to consider unnecessary.
I was relating my personal experience and that was not posted in opposition to research you had not posted about.
I also happen to be a now retired GP and strongly agree that drug choice with anaesthesia and someone to make sure your meds are given on time are most important .
but I dont agree listen to you and ignore everyone else because you say so
Hi Sundoc, thanks for taking the time to reply and sharing your knowledge you’ve gleaned from MDS/ anesthatist . I will research what other options I have if surgery does go ahead.
My HWP had hernia surgery a year ago. His PD was much worse after the surgery and he never recovered his former status. I was unaware at the time of the list of anesthesias to avoid. I'd find that list and keep it handy.
Hi Tired Puppy, thanks for your reply. Sorry to hear your hubby had this experience. It’s frightening that there seems to be no protocol for hospitals to follow when treating PD patients with co morbid conditions!
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