I think making sure you surgeon is accessable is the first thing that should be done. In this you've all hit the nail on the head. Its important to establish before hand as much as possible what sort of communication line in regards to simple after care questions, but most especially in the event of complications. You want the whole package, a surgeon whom is competant but also one that listens. Perhaps do a little experimenting prior to surgery and note any red flags that tell you your doctor is or is not listening to you. Some complications (like mine) were insiduous but still life threatening and serious. There is a level of "denial" that goes on with all human beings involved. Some surgeons egos will not allow them to comprehend just how much trouble you are in. I thought I might help here and list some ideas I'd recommend based on my own experience w/serious complications post op and my operated facility not being local. (400 miles away) Frankly "it takes a village" more then most here I think are realizing or able to comprehend without having an experience to draw from. In otherwords, its hard to anticipate the holes in your own system. "System" being how you handle yourself, your support from family and friends, doctors attitudes, busyness level of doctor, willingness of doctor to listen and be accessible, your willingness to communicate concerns, local doctors involvement in your care, on and on. So hopefully some of my ideas here will help you shore up any holes. As I think of more ideas I'll come back here and add to it!
1. Have a local physician, either neurologist or primary care that will readily examine you and directly report concerns to your surgeons.
2. Have your op reports and follow up notes sent to your local physicians. If I have to, I'll have the reports sent to me and forward the reports to my local doctors. In fact, I keep my own chart. Anyway, keep you local docs in the loop. A break down in communications can contribute to problems.
3. After I see my surgeon for follow up I either fax or email my primary care or local neurologist to let him/her know what transpired.
4. Also I send my local doctors and long distance surgeons my own "update reports" either via fax or email when I sense something is off. I like to do all this faxing and emailing because it allows the doctors to read my notes when they are not in the middle of their frantic days and the message does not go thru their staff whom can often misinterpret my news --plus it forms a paper trail.
5. Make sure your own primary care physician (PCP) is not burnt out prior to your surgery. Make sure he/she is on the same page and will be there for you if some sort of emergency arises.
6. Find out how he/she (PCP) manages his/her patients if you do become admitted to your local hospital. Often (this happened to me) if you are admitted to a local hospital for a complication from surgery you'll be managed at the hospital by a hospitalist whom is a physician whom manages the hospital patients. Very often your own physicians will not have any involvement in your care while you are hospitalized unless he/she choses to confer with your hospitalist. These hospitalists can be wonderful but the problem arises because of further breakdowns in communications. Namely you can become twice removed from your surgeons care. Usually though they did call my surgeon or infectious disease doctor directly. But weird things and circumstances can alter this communication too. This happened to me when I headed to the ER on Xmas eve w/a rare reaction to the IV antibiotics I was on for the epidural abscess. The reaction mimiced a gallbladder attack, there was a huge disconnect between the various physicians whom were manageing me due to the holidays and I ended up unnecessarily having my gallbladder out on Christmas day. It was one of the most demoralizing experiences of my life. This is why I now have a primary care physician whom I can call via cellphone anytime I need to. Thru my medical crisis i came to realize just how disconnected my primary care physican then CHOSE to be! She was terrific one on one during office visits for regular issues but because my circumstances where "too esoteric" as she put it, she copped out. I'd done all the things above to make sure she was part of the loop and make it as easy as possible for her. One day when I was visiting and relaying a message to her from my neurosurgeon she blurted "I'm too busy, I don't have time to listen to you." She was not interested in understanding my care needs and there was only so far my surgeon could go. She was busy with diabetics, cardiovascular diseases, cancer, etc. I was a cast off.
7. If you are looking to get a better PCP perhpas visit your local ER at a time of day when they aren't so busy and ask the staff about primary care doctors whom they might recommend and see if they do come visit their patients while in the hospital. Also see if they have a neuroscience ward. Just a few days after returning home from my second craniotomy I was admitted in one local hospital and they seemed clueless about my care needs.
8. Have a friend or family member be your advocate. When it comes to anything surrounding our brains its sometimes hard to convince physicians of your concerns that things are not right. I'm a real cowgirl when it comes to pain. And I've never had any complaint that was not proven to be something. Your family or friends know you and can communicate this often better then you.
Like I said I'll add more hne I think of things...
Tricia
