redfathom Posted November 21, 2008 Share Posted November 21, 2008 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. Link to post Share on other sites
Geishawhelk Posted November 21, 2008 Share Posted November 21, 2008 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. Link to post Share on other sites
Kasan Posted November 21, 2008 Share Posted November 21, 2008 Oh Redfathom such a decision to have to make!! 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? So.......which choice would allow you to do this? I wish you all the best. Link to post Share on other sites
Chinook Posted November 21, 2008 Share Posted November 21, 2008 In your shoes - I'd most likely have it done.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. Link to post Share on other sites
Author redfathom Posted November 21, 2008 Author Share Posted November 21, 2008 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. Link to post Share on other sites
Kasan Posted November 21, 2008 Share Posted November 21, 2008 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? Link to post Share on other sites
Author redfathom Posted November 21, 2008 Author Share Posted November 21, 2008 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. Link to post Share on other sites
carhill Posted November 21, 2008 Share Posted November 21, 2008 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 Best wishes! Link to post Share on other sites
Trialbyfire Posted November 21, 2008 Share Posted November 21, 2008 For surgery that's as invasive as this, you're making a smart move of getting a second opinion. All the best, redfathom! Link to post Share on other sites
Author redfathom Posted November 21, 2008 Author Share Posted November 21, 2008 I have asked other people who have had the surgery, when is a good time. Two responses scared me: 1. This guy said, when you can no longer work!! 2. This other woman said when she could no longer control her bladder and she was peeing herself... I don't want those two things to happen to me! Link to post Share on other sites
JamesM Posted November 22, 2008 Share Posted November 22, 2008 Redfathom, this is a tough decision to make. 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 Link to post Share on other sites
Meaplus3 Posted November 22, 2008 Share Posted November 22, 2008 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:) Link to post Share on other sites
Author redfathom Posted November 23, 2008 Author Share Posted November 23, 2008 James, 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! Link to post Share on other sites
baker23 Posted December 1, 2008 Share Posted December 1, 2008 Hi Red, 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. Best of luck, Baker Link to post Share on other sites
Author redfathom Posted December 1, 2008 Author Share Posted December 1, 2008 Thanks Baker! 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... Take care! Link to post Share on other sites
Geishawhelk Posted December 1, 2008 Share Posted December 1, 2008 Yes, please do. We're all thinking about you, we wish you well, and are rooting for you. ((H)) Link to post Share on other sites
Author redfathom Posted December 2, 2008 Author Share Posted December 2, 2008 Thanks Geisha! Everyone on LS is so nice, it's a way different community feeling than any other forum! Link to post Share on other sites
Jilly Bean Posted December 2, 2008 Share Posted December 2, 2008 OMG, Red! I have been away from LS for a while, so I am just getting back on and saw this. Wow. Simply wow. This now explains all those odd symptoms you were having over the summer. While I am sure having a diagnosis is comforting, this isn't the one you were hoping for. As for your question, I would have the prophylactic surgery. Now, while you are young and healthy, and stand better chances of a quick recovery. As you said yourself, waiting could make things more difficult. I also would do as much research as possible, and I would find THE best surgeon possible. Also, maybe there is an online forum/chat room for others with this disorder? This might be great for networking and finding out about the latest and greatest. Research charity events, organizations, foundations, clinical trials, etc. Wishing you all the best, Red. Keep us posted, please. - JB Link to post Share on other sites
Author redfathom Posted December 2, 2008 Author Share Posted December 2, 2008 Hi JB!! It has been a long time! There are two forums I visit daily related to my condition, which has been a big help. I actually had a great conversation with a woman today who had my same health insurance and went through the process of trying to get treatment. Eventually she went on disability and Medicaid and was able to go to the Chiari Institute in New York which has the best of the best doctors working there on this condition. Unfortunately, with my insurance they are considered out of network. On a bright note, open enrollment is coming soon so I may be able to enroll with a more flexible insurance company. I am going to call them tomorrow to find out what health plans they accept. It took 13 years for her to finally get to TCI and have the surgery. When she had the same insurance as me, they just gave her the run around. Even when she finally got the approval just to go see TCI to get a diagnostic done, she got a call while boarding the plane that they decided to deny paying for the visit. She went anyways and the head DR at TCI came out and gave her a hug and told her to come back the next day and that they wouldn't charge her for her visit. I almost cried when she said that! I hope everything goes well for me too and with out so many headaches figuratively and literally. Glad to see you are back! Link to post Share on other sites
Jilly Bean Posted December 2, 2008 Share Posted December 2, 2008 OK, then it sounds like the first order of business is to find new medical insurance so that you can go to the institute! Sounds like this place is the pre-eminent facility, yes? I'm glad you are doing your networking and finding solace in others with the condition. Its comforting at the least, and can yield some great insight and connections at the best! Be well, Red. Link to post Share on other sites
Author redfathom Posted December 3, 2008 Author Share Posted December 3, 2008 Yep, it's the place to go if you want your surgery done right...the first time . It's nice to have people to talk with about it, but it's nice to have an outside pespective. A lot of these people are so far progressed (the condition) that when you ask them when they had surgery you hear things like: when I couldn't walk, when I stopped breathing in my sleep and someone had to wake me, when I couldn't work anymore... I think those all seem "normal" to them, but not to me at all!! Link to post Share on other sites
Kenyth Posted December 3, 2008 Share Posted December 3, 2008 My sympathies on your health problems. I'm no Doctor, but I'm a firm believer in having reasonable procedures done as early as possible. You never know what life throws at you. You may have an insurance problem or health condition develop later that may interfere with having the procedure done at all or complicate it significantly. Permanent damage may result earlier than anticipated. It sounds like a reasonably safe surgical procedure, where the pro's far outweigh the cons. Nothing in life is certain or without risk though, so the final decision must rest with you. The best of luck on a successful and speedy treatment and recovery, and God bless..... Link to post Share on other sites
IfWishesWereHorses Posted December 3, 2008 Share Posted December 3, 2008 RF, You have a tough choice to make. I just wanted to add to the list GW posted. Check infection rates for the MD, surgical area at the hospital as well as the NICU unit. Good luck to you and keep us posted. Link to post Share on other sites
RecordProducer Posted December 3, 2008 Share Posted December 3, 2008 Surgeries sound scary when you think about what they involve, but they are performed by people who know what they're doing. You said the risks are minimal and you're otherwise healthy, so I would go for the surgery. Don't think of it as a scary surgery removing body parts: think of it as a solution with a certain amount of risk. Weigh both options in terms of risk and probability to have a normal life. If the risks are "just like with any surgery" then you should REALLY seriously consider surgery. Don't tell me that you would rather be paralyzed than undergo surgery because of your fears and because any surgery could potentially go wrong. Whatever you choose, I wish you well. I am sorry you're going through this. Link to post Share on other sites
Angel1111 Posted December 3, 2008 Share Posted December 3, 2008 Redfathom, I don't have anything to add in terms of advice but I just wanted to let you know that I'm so sorry you're having to go through this. I just can't imagine what you must be going through. You'll definitely be in my thoughts and I hope you'll keep us updated. Link to post Share on other sites
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