Physical Fitness, Health & Weight ManagementStaying fit and physically healthy is essential! Remember, we aren't subsitutes for your physician! As always, talk to your doctor before following any suggestions or advice!
So I have a condition there is no cure, it effects the nervous system. The condition will most likely get worse overtime and can with out treatment (surgery) cause permanent damage (paralysis is one). But, it might not get worse.
Right now I am a candidate for surgery, but there are risks (as with all surgeries). These risks are minimal, but still present. The doctor said it's up to me to decide what I want to do.
What would you do?
Wait (risk) until your condition and symptoms get worse (risking permanent damage) then have the surgery, knowing that the less your symptoms are at the time of surgery the easier the healing will be? Thus the more successful the surgery.
Or have the surgery now, knowing that you are an otherwise healthy adult, and the surgery if there are complications could cause awful problems? Stroke, nurological damage, or death. The whole time knowing in the back of your mind if things didn't get worse you wouldn't need the surgery.
In the surgery they will cut open my skull and the dura patch which protect the brain (a new synthtic patch will be put in), they will remove part of my skull and part of my top two vertebra's.
It's a question of the surgeon's reputation, and how much you believe you can trust him.
How many times has he performed this procedure?
How many of his patients had favourable results?
it's your right to ask these questions.
It may even be legitimate for you to seek testimonies and referrals.....
It's a terrifying decision to have to make, but I would always err on the side of Hope.
In your shoes - I'd most likely have it done.
Before I would make a decision of this magnitude, I would find the best neurologists that I could and have a second and third opinion.
I would then go to the place within myself (where I feel centered) and meditate on the pros and cons, because I suspect that deep down there somewhere, you have already made your decision.
It's all about living your life to your fullest potential isn't it?
Me too. I have already been in the situation where I had to have a treatment for a life-threatening illness, otherwise I would have died. There were risks with it (and may still be six years later). I have certainly had residual effects. But if I hadn't had the treatment, I wouldn't be here now.
I have an appoitment with another NS in a few weeks to get a 2nd opinion.
The first NS I saw has not given me a straight answer as to the number of surgeries he has done for people with what I have. He did say he has done the same or same type of surgery on others with out what I have. When I asked him about symptoms of pateints post surgery he first said that info was confidential...then he told me when I asked a follow up question that he doesn't monitor anyone after surgery. I do not like this.
Mainly because he won't commit one way or the other to tell me if the symptoms will get better. Now I understand that it's because he doesn't know...
My insurance is for a private health company, they do everything in house. They have their own hospitals and have their own doctors. So I can't go out of "network". I can't find a DR I like and call to find out what insurance he takes. That is a problem for me. Because they don't really have specialist. Yet there is a specialist a few hours away but I can't see him with my current insurance.
I am not sure which would let me live my life to it's fullest potential. Right now I have good days and bad days. My bad days are ones where I crawl into bed and sleep. My good days I can function normally. I have bad days because of symptoms, which might not get better with surgery, but they shouldn't get worse. I can say that I am having more bad days then I used to...
Yet, if there is a complication...then I could be left worse then I am now...
Agggghhhh! I just keep going round and round...
Chinook, I am glad you are okay, I hope you stay that way.
You know, I think there's a website devoted to the rating of doctors.........on their successes, experience, and even bedside manner. These ratings are done by patients.
I'm sure if you google it you might be able to it.
Also, I wonder if your insurance company has a clause, where you can appeal, to go out of network?
Last edited by Kasan; 21st November 2008 at 5:50 PM..
I will have to look into that. I know that you can request to go out of network, I just don't know if they will charge you a % of the bill to do that...
I have see it, rate my md or something. The dr I saw is not rated, but the doctor I am going to see is and he has good reviews.
Based on your description in a prior thread of your symptoms and prognosis and if you're under 40, I'd look real hard at the surgery as a positive solution. IME, the older one gets, the more likely the far-fetched risks begin to become realities. So, find a good neurosurgeon, learn as much as you can, and trust him or her to get you a good outcome. It's possible you may need more than one surgery, so make sure s/he isn't near retirement
The risks will be there no matter when you have the surgery. And while the risk may be death or stroke, I would want to know the percentage of people that get them.
Personally, I think (being honest) I would pretend that I am not sick with such a serious illness, but eventually it would hit. However, my wife who is a nurse, would want me to have it as quickly as possible. She knows how I am. Once it is over (assuming it went well), I would be a better person. I could not be happy living with that over my head.
Getting a second opinion is always wise. I have an example of what could happen if you just listen to one doctor. Eighteen years ago, I had testicular pain, so at the urging of my wife I went to a medical clinic. The doctor there said with great conviction, "You have a hernia. Textbook case."
What! Can't be. My parents suggested that I get the opinion of my dad's surgeon. So I did. He checked me over, then asked, "Which side?" I said, "Right side" expecting bad news. He said, "You have no hernia. It was probably some injury from an accident or trauma."
You gotta be kidding me! So what did the first doctor feel? Who knows. But what if some surgeon did go ahead?
Anyhow, my point is...one doctor may not have the correct answer. And when choosing a doctor, get some opinions from medical professionals (besides your current doctor). Having lived with a nurse for years, I can say that she knows every doc and their reputation.
Good luck. Keep us updated.
BTW, I did a search on the condition you have, and I do not want to presume anything. I an guessing you know alot about it. What I wanted to include is a link to an online support group. It may or may not be helpful to you. http://onlinemeeting.conquerchiari.org/login.asp
__________________ "Keep Calm and Carry On"
Last edited by JamesM; 21st November 2008 at 10:56 PM..
Red, First off I'm real sorry to hear your are going through this. I think your best bet is to gather as much info on the procedure and get a second and even third opinion from a very reputable Surgeon. Best of luck to you. Hugs.
AP
__________________ "Always keep an open mind and a compassionate heart"
You make a very valid point about the risks being there whether I have the surgery now, or later...
I don't try tp pretend it doesn't exist and I would be lying if I said it's not consuming a lot of my thoughts and time, but I am not sad or upset about it. It is what it is, I can't change it so why be upset...but I am scared. Scared of making the wrong descision. I don't have time to be emptional because that just takes up energy I need to spend on logic.
Doctors are funny like that. In my case the doctor I saw doesn't want to be wrong so he just won't commit. It makes me feel like he is indifferent, which maybe he is, or maybe he doesn't want to fail. I am glad to be seeing a second doctor. Either way it still feels like a gamble and I have joked about just flipping a coin...
Thanks for the link, that is one of the best site on the condition, I also have book the guy Rick wrote on the condition. You do have to take your healthcare into your own hands and be responsible for it. Thanks for the thoughtful post!!
Mea, tomorrow I am hanging out with my family and some of their friends. One of the guys there has the same condition and had the surgery, so I am going to steal some of his time to talk about it...thanks for the hugs!
First off I want to tell you I'm really sorry about your condition, and I hope everything gets better soon. I know there is always a risk with any procedure, but I would get as much information as possible, the best doctor available and get the procedure done.
I have my 2nd opinion on Wednesday, hopefully I like the doctor and he can give me better information then the last one. I will post here after my appointment...
Please note: The suggestions and advice offered on this web site are opinions only and are not to be used in the place of professional psychological counseling or medical advice. If you or someone close to you is currently in crisis or in an emergency situation, contact your local law enforcement agency or emergency number.
"Always keep an open mind and a compassionate heart"
Linear Mode
