[krugen68]

Hi all. ongoing infection or operation ?

A brief recap
Two and a half years ago I had a 3 inch square hole cut in my butt to remove a badly infected pilonidal abscess. 2 nights in hospital then 4 weeks in bed.
It was after that that the first symptoms of PD occurred - tremor, frozen shoulder, arm not swinging when walking etc.
The abscess never cleared, so I have lived with it ever since. (It has a 40% chance of reoccurring after surgery so I was reluctant to try again)

Today I saw a haemotoligist for a high platelet count, one possible reason being the ongoing infection.
So which is worse for my PD ? The ongoing infection, or further surgery and recuperation with no guarantee of success ?
Hmmmmmmmmmm lol

Flips a coin

[shakyjon]

Sounds like one of those damned if you do and damned if you don't scenarios. Any surgery comes with risks. At the same time, infection can worsen your PD symptoms, too, in some cases, permanantly. I have no advice for this as either route comes with its pros and cons. I wish it was as easy as, "yes, have the surgery" or "no, don't have it." Here's hoping that you make the right choice for you. Follow your heart sounds corny, but that's all we have left to follow. Our brains just aren't up to the task anymore.

[krugen68]

Originally Posted by shakyjon

Sounds like one of those damned if you do and damned if you don't scenarios. Any surgery comes with risks. At the same time, infection can worsen your PD symptoms, too, in some cases, permanantly. I have no advice for this as either route comes with its pros and cons. I wish it was as easy as, "yes, have the surgery" or "no, don't have it." Here's hoping that you make the right choice for you. Follow your heart sounds corny, but that's all we have left to follow. Our brains just aren't up to the task anymore.

......being a devout coward, I'll probably stick my head in the sand and do nuffink

[reverett123]

One of the key foundations underlying PD is an overly zealous immune response in the brain. <Pause to inform the new faces that everything that I post has an implied IMHO attached. >

As a result of that response, infection anywhere in the body causes a flareup in the brain that does two things: it kills neurons and it puts neuroactive chemicals into the soup that disrupts everything else.

Read all about it in mind numbing detail on my blog here.

[krugen68]

Originally Posted by reverett123

One of the key foundations underlying PD is an overly zealous immune response in the brain. <Pause to inform the new faces that everything that I post has an implied IMHO attached. >

As a result of that response, infection anywhere in the body causes a flareup in the brain that does two things: it kills neurons and it puts neuroactive chemicals into the soup that disrupts everything else.

Read all about it in mind numbing detail on my blog here.

Thanks reverett, especially for the link to your blog, what you say makes perfect sense. I've immersed myself in past posts from all of you (bows and waves ) over the last 4 months, and you've given me an understanding of PD I couldn't find elsewhere ( except for when the high level tekky stuff leaves me gawping, mouth open !)

My indecision stems from :
1. No guarantee that the surgery will cure the infection (as last time). If it was 80/90% guaranteed to work I'd go for it
2. That the last surgery (or the massive infection leading to it) kicked off the onset of my discernable PD symptoms
3. That perhaps the anaesthetics themselves (again I refer to prior posts) or the trauma of the operation promoted the changes.

What I really need is a Magic Wand

[tulip girl]

Hi Krugen,
This is what I would do if it were me
1. Find out the cause of your high platelet count and deal with that issue first. Besides the cause for this, it puts you at greater risk for blood clots - possibly to the lungs or to the brain neither of which is good
2. Get a 2nd opinion for your cyst. No surgeon is going to give you any guarantee for successful removal and clean up infection.
3.. I assume you have been thru multiple antibiotic rounds. Do you have MRSA? C-Dificile? Super bugs ASK hospital infectious disease department what their numbers are for these superbugs.
4. Chronic infection is bad for your PD, General anesthesia is not good for PD
5. My decision would be find the right surgeon who has low infection rates (ASK)to clean out the cyst using a local anesthesia (blocks) and lots of versed and fentanyl to keep you asleep during the proceedure. As soon as you are awake enough, leave the hospital for home care to decrease risk of hospital related infections. That is the only way of getting rid of embedded, resistant infections IMHO. It is a 50-50 risk either way.

I am not giving you medical advise, just my opinion as to what I would do in your situation. Good luck

Tulip girl

[olsen]

I'll weigh in here and echo Rick's information. I personally would consult an infectious disease specialist for input about potential use of antibiotics now and also prior to undergoing additional surgery to make certain correct antibiotics are prescribed before, during and after procedure to drain infected site. I might also want to get a second opinion from another surgeon.
and i would discuss potential anesthetics to determine ones which interfere with mitochondrial function, and request these not be used if there are other options. did the anesthesist discuss spinal anesthesia or local plus whatever else is used with locals ?
above is what i would do;
best of luck to you! madelyn

[krugen68]

Thanks for the input TG and madelyn

Finding surgeons and doctors you can talk to ? Unlikely sounding creatures in the UK !

Perhaps I'll wait to see the results of the platelet/bone marrow tests, but apparently they're only accurate in 50% of cases. Otherwise it's a process of elimination - sounds familiar lol

Both antibiotics and anaesthetics seem to be a minefield though I'm not taking any meds currently. If i do get it done, I'll certainly escape from the hospital as soon as humanly possible, last time I virtually crawled to the car

I will have to find out about the anaesthetics, though I'm not sure that it could be done under a 'local'. It depends if it's draining or excising the area as before. Is it accepted practice for PWP to receive different anaesthetics to usual ?
Peter

[shakyjon]

Harry Potter style, eh? If you find that magic wand, please do share. I'd like to borrow it and then no more worries.

[tulip girl]

http://images.wolfpk.com/parkinsonsr...nformation.pdf

PD & SURGERY:
1. See note above regarding stopping Eldepryl/selegiline two weeks prior to surgery.
2. There should be no reason to skip PD medications prior to surgery even if directions are NPO
(nothing by mouth) for 6-10 hours prior to surgery. Discuss with surgeon or anesthesiologist.
3. Restart PD medications (except eldepryl) as soon as possible after surgery even if NPO;
discuss with surgeon.
4. Be aware that PD patients have a lower threshold response to analgesics (sedation/pain
medications) and could experience hallucinations; however, this is not a contraindication
(reason to avoid) their administration.
Other medications which may worsen Parkinsonian symptoms and should not, in general, be
prescribed for a person with PD include:
NEUROLEPTICS GI / ANTI-NAUSEA RX
Haloperidol (Haldol®) metoclopramide (Reglan®)
Chlorpromazine (Thorazine®) prochlorperazine (Compazine®)
Thioridazine (Mellaril®) trimethobenzamide (Tigan®)
Molindone (Moban®)
Perphenazine (Trilafon®)
Perpenazine and amitriptyline (Triavil®)
Thiothixene (Navane®)
Flufenzaine (Prolixin®)

This is an excellent document to have available in case you land in the hospital - in fact take extra copies as most MD/RN know so little about PD.

Peter, there should not be any obstacle for local anesthesia/block - like an epidural for childbirth. I had bone taken from my hip and grafted into my foot along with 2 plates and 8 screws all under a local with sedation. Did they ever put a PICC line in for long term home administered IV antibiotics?

Again, I suggest figuring out why your platlet count is high before further surgery. Keep us posted
Tulip Girl