Hospitals & Surgery Experiences & Advice
 

I also posted this over at the NPF Forum site. I'm aware of the risks of PWP being in hospital for any reason. I have to have back surgery soon for severe lumbar stenosis and want to minimize possible problems. I do have the NPF Aware in Care Kit, which covers what you should be concerned about (meds interactions, meds to avoid, getting PD meds on time, etc.). Would love to hear the experiences of others who've gone through this. I personally know of two PWP who had very bad outcomes due to meds not being given on time, etc. Any comments much appreciated.

No responses at all? Has anyone had surgery with general anesthesia and had problems? Or any other problems related to hospitalization and surgery? Sure would appreciate comments. Many thanks.

Peony,
I'm not sure if this varies from hospital to hospital or in different countries but I've had a few surgeries and have always self medicated.
Tell your anaesthetist so he can be aware of your special needs in medicating if necessary with a tiny sip of water as needed when you're fasting (its still ok then)
Have someone you know well with you post surgery to assist you with PD meds and make sure if you feel queazy that you aren't given the usual anti emetic meds like Stemetil and Maxalon but instead be given domperidone (name may be different in U.S.)

The one thing I have found is that you must be proactive when dealing with hospital personnel. On 3 different occasions that I have had surgery, I had to tell the nurses that I could not take reglan. This is a pill that is given before the surgery to help combat nausea caused by the anesthesia. Reglan in a person with Parkinsons may cause extreme confusion that could last for quite some time after your surgery. Each time the nurses told me they were not aware of the effects of this drug. Now, to make sure I am not given this drug, I list it as something I am allergic to.

John Muir hospital
 

Two weeks ago I had TURP surgery on the prostate at John Muir hospital in Concord. They were excellent in every respect, food, cleanliness, technology, competent, caring staff. Having PD concerned me, especially since I mix Hinz's powders every 3 hours.

My urologist left orders to cater to my special needs. I brought my jars of powders to the hospital and post-op, the nurses dutifully brought them out at the right times and mixed me up a batch right there at my bedside. I was impressed.

Since you are in northern California this is an option for you.

hi peony,
i had 4 spine surgeries last year--2 on the lumbar vertebrae and 2 on the cervical area.My experience in the hospital ranged from excellent to awful, depending on which nurse was on duty. I agree with all the suggestions already made, and can add a few more observations.

the NPF kit was very useful. you need to go over it with each shift. some of the nurses were very resistant to7 giving me my pd meds on a 3 hr. schedule. everyone else was on 4 hrs. you can ask yout doc to order a med schedule on your chart.

also ask them to order physical therapy from day 1. mine didn't start until i got to rehab and by then i was too weak to sit up.

educate every staff member you can about pd. many of them are clueless.

discuss what anesthesia and pain killers will be used with you docs. Tell your family what to expect. i gave them the npf list of meds tol avoid and they said they don't use any of them, but i still had bad reaction -- hallucinations and disorientation and fogginess for a few days. my husband said i was having conversations with my dog, but didn't knnow that my family was there....

HHope all goes well for you.
linda

Horrible hospital stay
 

I would have to be close to death to go to the hospital again. I was extremely sick and went to the hospital last year and it was a horrific experience. Meds not given on time.... like a couple hours late. Then I was taken to get some gastric tests done, and told the nurse I would have to have my meds brought to me. Well, you'd think I'd asked her for her first born!!! She not only had a huge attitude but shared my unreasonable request in the hallway for all to hear!!!
I spent a week in the hospital. No one cared that I didn't eat the food brought to me. No one noted that I was unable to have a bowel movement. I finally in sheer survival mode asked to go home and was released. What if I had been a little sicker and unable to complain????
In comparison, I went later last year to another hospital to have DBS and received outstanding care. I did have my kit with me to let everyone know about my needs. My nurse took a great interest in the kit and the specific needs of PWP and turned it into a learning experience. I really recommend the kit!!!!!

Scandal of hospital care for Parkinson’s patients
 

Thought you might be interested in this article I saw today:

http://www.yorkshirepost.co.uk/news/...ents-1-6545665

Hi Peony
 

Most of the time these days, what they use to put you to sleep is pretty easy. Not too many experience bad side effects. If you get a bit nauseated they can help with that too.
Sorry you have to have back surgery. Are they doing a decompression or doing something with hardware? I am sure you already received a second opinion and done all the conservative things you can do.
Hope the surgery goes OK, and that you have no problems with the medications you are on, and what they give you in the hospital. Be pro-active, and question everything. If some drug is missing, or they fail to give it to you on time, speak up. Same with pain medication after.
I hope all goes well for you. Sometimes it takes a bit for our members to post back to you. You will make some friends here. The PD forum has some of the nicest people I have ever met. ginnie:grouphug: