Aa
TOPIC of the MONTH~~ March 2014
POST OP CARE ~~~
Hi all we were doing questions of the month for a while, took a break and this is a new idea from the MedHelp people.
I choose POST OP CARE as it is non existent...and want those considering surgery to be advised they need to plan for after care b4 u have surgery...this is so important as so many NS's stop seeing u once ur incision is healed....so where do we turn....please add ur suggestions as to what has worked or not worked for u POST OP CARE wise.
Hi all we were doing questions of the month for a while, took a break and this is a new idea from the MedHelp people.
I choose POST OP CARE as it is non existent...and want those considering surgery to be advised they need to plan for after care b4 u have surgery...this is so important as so many NS's stop seeing u once ur incision is healed....so where do we turn....please add ur suggestions as to what has worked or not worked for u POST OP CARE wise.
COMMUNITY LEADER
Very good point, the emotional roller coaster is quite a journey many do not expect.
Keeping hydrated another great reminder we all need to keep in mind.
Yes, I mentioned how Chiari can affect how we experience lights, sounds, tastes, and feelings....we r over sensitive...and I feel our nerves are in over drive post op so something that we may notice an increase of b4 it settles down.
And I will agree, keep a journal or ur own medical booklet of info...it is so helpful when seeing a new Dr by having ur Dr appointments and what was discussed or found, lists of recent testing and results,and lists of ALL ur Drs, names, address and phone #'s which helps when filling out those forms....even ur RX list.....
I would write down my questions b4 going to the Dr as that is when I could think of them, at the office I was like a deer in head lights......
So take someone to do the asking...lol...
Be aware that medications and simply the nature of surgery can turn you into an emotional whirlwind! It doesn't last, but it is like crying because of spilled milk!
Make sure you are on fluids! Mine was disconnected too early and I dehydrated, causing horrendous headaches. Yikes!
Some of your senses can be more sensitive (lights too bright, sounds too loud). This is normal and most often doesn't last. I had super sensitive hearing for about a month.
Write everything down. Times you took meds, who came in your room and for what purpose. Most questions I had was because I forgot what was going, even though I was told repeatedly.
Make sure you are on fluids! Mine was disconnected too early and I dehydrated, causing horrendous headaches. Yikes!
Some of your senses can be more sensitive (lights too bright, sounds too loud). This is normal and most often doesn't last. I had super sensitive hearing for about a month.
Write everything down. Times you took meds, who came in your room and for what purpose. Most questions I had was because I forgot what was going, even though I was told repeatedly.
COMMUNITY LEADER
Neone else have something to add...or suggestions for next Months topic?
BTW... they also need to make sure you are "eliminating" properly. Pain meds can bind you up BAD!!! The LAST thing we need to do after brain surgery is have to strain! I knew that the Vicodin I was on before surgery caused this problem and told the dr. He put me on Percocet instead... it wasn't as bad... but he also had me take a stool softener with a mild laxative in it (Peri-Colace)... that helps too!
Wow... now this could be a "can of worms"! LOL! I had surgery 6 hours from home... was in a room with a nutcase who kept storming through the room, throwing things, calling people all times of the day and night screaming at them, who had me TOTALLY freaked out and caused my head to about burst! (I finally instructed the nursing staff that they WOULD move me or her, or I was filing a complaint! She was gone within 6 hours of that discussion!) At home, visiting nurses were supposed to come in, but my insurance was ending so they didn't return. In the meantime, everyone thought someone else was looking in on me... and so NO ONE did! (I was on some pretty strong meds... sleeping, waking up with pain, so taking meds,... again and again... until mid second week woke up and realized that, #1, I had no clue what time it was... what I had taken... how much I had taken, or when I had taken it. The heck with not eating all day long, I could have died from an accidental overdose during that time!
PLEASE make sure you have something set up for when you come home from the hospital... at least until you have a handle on how you're doing. DO NOT count on loved ones, as they won't know what to do in certain circumstances. If your insurance provides for a visiting nurse... BY ALL MEANS, use them!!!
Our loved ones may mean well, but they are also the ones who "don't want to bother us, as they know we'll probably be sleeping a lot... not feeling well... whatever". UGH! We need someone who is only there to do what's necessary... make sure we are taking our meds correctly, healing correctly, eating at least SOMEWHAT, and don't have new symptoms that may be a sign of something else... or a problem. Our loved ones just aren't trained for that!
PLEASE make sure you have something set up for when you come home from the hospital... at least until you have a handle on how you're doing. DO NOT count on loved ones, as they won't know what to do in certain circumstances. If your insurance provides for a visiting nurse... BY ALL MEANS, use them!!!
Our loved ones may mean well, but they are also the ones who "don't want to bother us, as they know we'll probably be sleeping a lot... not feeling well... whatever". UGH! We need someone who is only there to do what's necessary... make sure we are taking our meds correctly, healing correctly, eating at least SOMEWHAT, and don't have new symptoms that may be a sign of something else... or a problem. Our loved ones just aren't trained for that!
COMMUNITY LEADER
I agree...we are set adrift with no paddles....
But it is not that ALL the NS's feel we r fixed and no longer want to see us bcuz of that....but if the incision is healed and they do surgery unless u have another DX that they can treat via surgery there is nothing they can do as they help via surgery....so we need to find Chiari specialists that are not NS's....that is the problem....there aren't ne that I know of...
For me I was lucky that my PCP was willing to learn as much as possible and to send me to Drs to do the testing needed,.....and listens to me when I have had issues.....that is what we need a Dr willing to learn and listen to us and not discount us,,,,they may not be true Chiari specialists for after care, but they may become one with our help <3
Non-existent is right! Somehow there is this notion about the DC surgery that once they "fix it" you're good to go. Not so much.
One thing I did that was helpful was I sought out a new neurologist. My original one was useless, convinced that I was having migraines and throwing meds at me right and left. After meeting with my NS, I have to wonder if the NL ever actually looked at my MRI and not just the radiologist report, because it was obvious what the problem was.
After my surgery and my final appointments with the NS, I was kind of let loose, because it was "fixed," right? I found a new NL who I met with just as a precaution and an introduction and he seems to be a good one. But I did this on my own.
Also, I'd say be careful with the meds. Some people have issues with the pain killers, but I was hyper-aware of that and probably took way less than I should have, simply out of fear of addiction. What I didn't really think about was the Valium. They gave me boatload of it, with explicit instructions to take it because the muscles couldn't heal if they were tense. So like a good little monkey, I took them. After a few months or so I realized that the meds were making me lethargic and miserable (please understand I am a total type "A" personality, optimist- Polyanna- and the Valium just made me dumb and lazy). So I stopped taking it. You can't do that. Don't abruptly stop your meds. You'll land yourself back in the hospital pretty quick. Learn from my dumb*ss move.
Long story, short: there is very little guidance regarding the medications. Do the research yourself.
One thing I did that was helpful was I sought out a new neurologist. My original one was useless, convinced that I was having migraines and throwing meds at me right and left. After meeting with my NS, I have to wonder if the NL ever actually looked at my MRI and not just the radiologist report, because it was obvious what the problem was.
After my surgery and my final appointments with the NS, I was kind of let loose, because it was "fixed," right? I found a new NL who I met with just as a precaution and an introduction and he seems to be a good one. But I did this on my own.
Also, I'd say be careful with the meds. Some people have issues with the pain killers, but I was hyper-aware of that and probably took way less than I should have, simply out of fear of addiction. What I didn't really think about was the Valium. They gave me boatload of it, with explicit instructions to take it because the muscles couldn't heal if they were tense. So like a good little monkey, I took them. After a few months or so I realized that the meds were making me lethargic and miserable (please understand I am a total type "A" personality, optimist- Polyanna- and the Valium just made me dumb and lazy). So I stopped taking it. You can't do that. Don't abruptly stop your meds. You'll land yourself back in the hospital pretty quick. Learn from my dumb*ss move.
Long story, short: there is very little guidance regarding the medications. Do the research yourself.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
