Has anyone advice on anesthetics

[beau1988]

Has anyone with any experience with someone with CBD having to go under anesthesia for an operation??? Anything I should know or be concerned about?

[easterncedar]

Please look back through the archives. This question has been discussed, and there is more authoritative information there than I am able to summarize. There are dangers. Damage may be done as the body temperature is lowered for an operation under general anesthesia. Avoiding this should be discussed with the surgeon. I'll take a look back myself and see if I can point you to a relevant exchange. Best, ec

[easterncedar]

Found one. I asked about it 2 years ago. Strelley, who has left the site and now appears as "hidden" answered really well. He was a medical researcher in Australia and always very knowledgeable. . You might find it by looking back through my posts or for searching the word "Anesthesia". Hope this helps, ec

[beau1988 in reply to easterncedar]

Thanks eastercedar I found the info you referred me to. Very informative & helpful though I must admit I am more concerned about this now but I will discuss this info with relevant people & hopefully the outcome will be the best it can be.

[Christine47]

There are three files on anesthesia on the yahoo group site, cbgd_support.   I can send them to you if you send me your email address.  OR you can sign up to be a member of the group.  There is a lot of information there.   The two discussed are propopol and isofluthane (which increase tau hyperphophoylation), and an article on AD and anesthesia,  I used these with the doctors during my husband's operation in December.  

Or is anyone knows how to attach a PDF to this site, I can do it here.

[beau1988 in reply to Christine47]

Thanks Christine47 I have put in a request to join.

[hellebore]

Hi beau1988. My husband has CBD, now 5th year of noticeable symptoms. He had a Superpubic Catheter fitted a month ago. He was in small hospital and was transferred the day before op. General anaesthetic (don't know which one) and back on ward 1 1/2 hrs later. Stayed one more night then back to small hospital. 

For the first half hour after op his speech was slurred and stammering. He was OK. Next week he was slower in thinking but that was tiredness. His condition has progressed but only as expected. Two weeks after he had mild chest infection. Only to be expected after 2 months in hospital. Got over that fine.

He is now in nursing home with his own room and we can have a reasonably normal conversation because there are no distractions for him. The catheter was so worth it. He didn't worry and dosnt get tired out using a bottle. Full nights sleep with night bag on.

He does have large prostate but they won't operate on that because it's a much longer procedure hence more anaesthetic. I was concerned about a general but decided that the worst it would do would speed up the end but the benefits were so much better.

As long as the medics are fully aware of condition I would trust them. Consider this, if you loved one suddenly had appendicitis and needed the operation in an emergency you wouldn't hesitate. What's the worst that can happen?

I am here to help with exchange of views when you need. There are so few CBD sufferers and not wanting to dis you PSP guys but there are some differences. I think we should all be listed as endangered species! Sorry, crazy week.

[beau1988 in reply to hellebore]

Thanks Hellebore. If he could avoid the surgery we would but he is in pain every day. I don't know yet how long he will be under hopefully not too long. May I ask why the catheter? If due to incontinence when did that begin? I wish this condition even if no definite timeline for symptoms at least had a definite order of symptoms. Makes it that much harder to plan for!

[Kevin_1]

The info. I have is simply, "Best avoided if at all possible."

Folk here are, correctly, being cautious in remembering evidence based info.

We were advised that full anaesthesia is liable to result is a marked step down in functioning.

Two anaesthetists I have spoken to were unaware of PSP and this risk.

Check with a PSP aware Neurologist and if necessary get a letter or phone call from them to the anaesthetist.

All the best

[beau1988 in reply to Kevin_1]

Thanks Kevin_1 I will certainly be pushing for some alternative if possible. And I will check in with is specialist on his opinion & advice too. But if it's unavoidable I just want to be prepared.

[hellebore]

Hi beau1988. F really started having pee problems 9 months ago. Having to go a lot, not quite emptying. The large prostate didn't,t help. He was given Tamsulosin, common for men with pee problems. It helped to start with. Then the accidents started. On investigation they found bladder made its mind up when to empty without much warning and just spasmed. I think this is common with CBD as the messages to the muscles from the brain get scrambled. F had the Conveen sheath for while, that's the little plastic funnel on the end of penis to bag. Straight away he felt better. No more getting g out of bed to use bottle 9 times a night. Then the Urologist suggested the catheter. Not the most elegant of devices but F feels more confident and therefore calmer.

I don't know what the cause of your pain is but there has to come a weighing up of pros and cons. Pain is draining, it will take more brain power. I find d that if F does a lot of physical stuff his cognitive function goes and vice versa. Also you may find that pain killers are having an affect.

[beau1988]

Thanks for sharing hellebore. Your a fountain of information.

[Finoni]

My husband, with PSP, is a surgeon and has had so many surgeries himself in the past that I wonder if all that a aesthetics could have contributed to his condition.  He had his hip replaced last year, post diagnosis, and they were able to do the surgery using spinal anesthesia. If the surgeon and anaesthetist  are agreeable  to doing the procedure that way it is preferable to a general. 

[AMJ4]

My husband had a general anaesthetic in June 2014 to cut tendons in his hand. I had spoken to doctors etc about my concerns, but all seemed oblivious to effects of it on someone with Psp, despite me trying to explain how the small sedation required for botox affected him so badly. My husband had the op, which lasted 1.5 hours but he was 5 hours in recovery! His condition then deteriorated rapidly. I should never have agreed for the op, but at that point I still felt a bit intimidated by some of the medics, who said they were the professionals and I wasn't. I have become much better at voicing my opinions as I know my husband best, but it is actually getting someone to listen and act on concerns which is the stumbling block at the Norfolk and Norwich hospital.

I would avoid all anaesthetics if at all possible.

[pbourd]

My Dad has PSP and had a procedure done recently. No problems with the anesthesia at all.

[kryste]

YES what ever you do make sure they put a brand new hose on that goes down the throat insist that you see it being opened and a new one put on that is where most of the infections hide believe me and they are resistant to antibotics my Aunt did real good going under but they did not change the hose and she caught 2 hospital aquired infections one with a 70% fatality rate.  So make sure that hose is new.  Hope all goes well

hugs Kryste