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Posted 10/12/2009 4:13 PM (GMT 0)
I just got and email from a Mark Lindberg from the Laser Spine Institute about a minimally invasive endoscopic outpatient surgery. I called him to get more info. He said they have had 90% success rate. He said that since they started in 2005 they have had 10,000 surgerys and no deaths, no extensive nerve damage, and no paralasis. He also said that they dont take medicaid and if I am a candidate for this type of surgery, self pay cost would be $22,500 out the door. OMG!!! This email said things like "get your life back".

In the info i read about in their attatchment, they do this surger on people with my problem every day. And I even asked him about the fact that there were 3 disks in a row, and thats why traditional surgeons wont touch it, and he said because of the type of surgery it is, that would not be an issue. I actually got my hopes up for a minute, but when he said the price, i was crushed. Now I am left feeling more hopeless than ever. Sure having PM and taking meds helps you get by, but it doesnt fix the problem. If you do too much bc you feel better on the meds, then you end up hurting more later. The meds always stop working eventually, and you always need higher doses. I WANT MY LIFE BACK. I am so angry that it has to be this way. I am so angry that I have to force myself to take every little step in life, and i am so angry that my family has to endure this for me.

Sorry that I got off track, and the typing is horrible bc im looking at the screen through a pool of tears. Anyway, this mark guy said that ther was a free consultation, if i just fax my mri's and fill out a form that probably has questions about my history and such, then they can tell me if I am a candidate, and someone would talk to me about financing, etc. 

Has anyone heard of this or gotten this email? Is it BS? I was thinking about sending my info, just to see if I am a candidate, even though I know they wont finance me (student loans). He did say something about the united way, but I dont know how to get that kind of assistance.

anyway thanks for letting me explode for a minute there,, and please let me know if you have heard of this.

Posted 10/12/2009 5:02 PM (GMT 0)
Pixie beware of this group honey. Key factor that bothers me only a handfull of ins co will pay them anything. I have done alot of reading on this group and feel maybe 15 yrs or so down the line they may be on the cutting edge, but not today. I am always leery of something when it says you may need a tune up later on and this is true with this group. Think of it this way, if they truly correct a problem, a tune-up is not necessary. They are putting a bandaide on the problem. Yes too good to be true. As the old saying goes, if it sounds too good to be true, then it usually is.

There are numerous law suits against them too-thats not good.

I know you are so tired of feeling the way you do. We all are honey, some days are worse than others. I am truly amazed at how you have handled everything to this point. But, remember what I told you awhile back, CP patients are very strong people.

Have you contacted an atty yet about getting your SSI or even SSD going, if not attys give free consults as a rule.

I wish I could type more but this stupid broken arm is wearing me out right now.

Posted 10/12/2009 5:14 PM (GMT 0)
Thanks for that. While it doesnt make me feel better, at least I wont go through years of hassle, and maybe worse problems. Also, I got this email out of the blue, which worried me. My temp. medicaid card that I'm supposed to be able to print from the internet to see a dr immediately, hasent shown up yet, but I will keep checking it. I havent talked to an atty yet, because I'm not sure how good the free ones are, and I know that the ones on tv want a retainer if you already owe SS money for overpayment. They cant get their money from your back pay if you dont get any. When I called one about 3 or 4 years ago, they said the retainer is $500. I'm thinking of hitting up my dad for this, since he just bacame disabled, and retired, and is waiting on a big back payment from SS for his 3 year wait. Dont know what else to do at this point on that subject.

PS I hope your arm gets better soon, that really sucks!
Posted 10/12/2009 5:33 PM (GMT 0)
Pixie, listen please, only sign what is called a contingency contract-never pay money up front. I worked in the legal field over 20 yrs. Stay away from tv guide attys. Find yourself a board certified SS atty. Also, call your local lawyer referral service, they can give names of attys free of charge to you. That is a good source of referrals. But, stay away from tv guide attys, they are slime balls and trust me, you would get lost in the shuffle.
Posted 10/12/2009 5:38 PM (GMT 0)
Thanks, I have been kind of lost in all this.
Posted 10/12/2009 8:20 PM (GMT 0)
Pixie,
Please do listen to Susie. She knows what she's talking about on both the SSI/SSD issue and the laser surgery place.

Got to run now so I can't say much more.

Hugs,

PaLady
Posted 10/12/2009 10:51 PM (GMT 0)
Susie,

I'm sorry for your frustration. I feel it all throughout your post and I will definitely pray for you. I will pray for guidance for you and a prayer for protection -- that you make the right decision for you.

You have been through so much and you are so strong. Remember how strong you really are and that you make good decisions.

I will tell you a story that I will make short. When my kids were young, and after being laid up in bed for two years for a severe back condition, I had lumbar surgery. Because I was totally inactive and in bed prior to the surgery, I had lost the musculature in my abdomen and back and was in a lot of pain. It was suggested to me that I go to a pain clinic. To make a long story short, the Dr., after examining me, determined I could be helped with his exercise program and other modalities there. The cost would be around 29,000. I had insurance, but had put my family way into a financial hole with my condition already. I was heartbroken for a while and I prayed. Several days later, I realized how smart and strong I was and that I could do research and figure out a plan for myself. I mean I'm not a physical therapist, but I was a registered nurse. So I did do the research and implemented a plan of action and I started to rebuild my muscles and get better.

Now, I'm not saying that the same technique is there for you. But what I am saying is keep researching and finding out truths and an answer just may present itself.

I hope this has helped somewhat. God bless and hang in there. I believe in you!

Lindaloo
Posted 10/13/2009 1:56 AM (GMT 0)
LInda, its Pixie we are trying to help out. Susie
Posted 10/13/2009 2:34 PM (GMT 0)
Pixie all I can say is anything that comes in an email I would throw away. If you are really interested in doing something like this start to google and research yourself. Sometimes we all see something that seems to be to good to be true. I would tread this lightly.

Laurie
Posted 10/13/2009 3:52 PM (GMT 0)
Thanks. I think that the problem is just that I am still, after 8 years and many Drs., looking for a fix it. I have been choosing not to accept this bc I dont want to. Why should I have to? I spent all of yesterday crying and feeling sorry for myself, but I guess today I am still carrying on, and I guess that is how it will have to be.

I have an appt on Thurs with a PC, well see what happens. The receptionist said that they are having an extremely difficult time getting people into specialists, because no one will take the low payments of medicaid... I am trying not let it get me down. I havent even started yet, and for some reason I am already wallowing in negativity. I am sure, though that I will get the most basic of care and even that will make a big difference.

Hope everyone is doing well and hurting less!!!
Posted 10/13/2009 9:06 PM (GMT 0)
Pixie,
What you're struggling with emotionally is what we all struggle with at some point - and I'm still struggling. The process of acceptance is just that - a process. And it's a tricky balance because you don't want to give up hope on the one hand, yet spending every day wanting things to be different means we miss out on life in the present. How do we achieve that balance? When I figure it out I'll let you know!

There's a lot of grieving to be done, that much I can say and I know others would agree. There ARE things we will have lost - abilities, activities, etc. - and some of those will never return. Yet that doesn't mean we give up trying to figure out ways to do some of them. I think, though, having periods of tears is a very, very normal part of this. I still have them, and I know I'm not finished. So please don't think you're abnormal in any way. It's normal to want to have our lives back! And maybe a few people (maybe more, because they may not be posting here!) get them back. And medical science is always finding new treatments, medications, etc. But even if we were completey physically healthy, life still hands us things we need to accept that we don't like.

I think that's one reason this forum has been a godsend for me, because talking about all these feelings here, I know I'm "heard" and that others not only understand, but often can help us get through our rough times to see there's a light at the end of the tunnel and it's not always an oncoming train! :-)

Hugs,

PaLady
Posted 10/14/2009 4:26 AM (GMT 0)

Yes indeedy, what PaLady says is the truth whether we like it or not at some point we should do our best to learn to accept things. With this disease as she says we really do grieve for many things we have lost. Crohns Disease literally destroyed my life and nearly me too. That is actually what caused me to become disabled. Any type of life altering medical condition can be very destructive to a person.  Then, once the crohns hit I had many other serious health conditions strike, it was like a domino effect. I would love to have just one health problem. I am after 7 years probably about 85% there on accepting it all. I had a wake up call one day, live or die, I chose to live and fight, its hard, very hard. Some days I hate myself, just as bad as my body does by attacking itself with auto-immune diseases (3) then CP for over 20 yrs, at this point some days I wonder, am I just stupid or am I smart. Still can't answer that one, lol., most likely never will.

I am not sure how old Webster defines the word acceptance, to me it has many definitions. I work every day at accepting and rebuilding. It can be done, you just have to want it bad enough and be willing to accept and build off that acceptance, realize most things in life really does not always stay the same.

I am not on the yellow brick road either. But, secretly, I would like to be the Tinman, his bones do not break when he falls.

     

Posted 10/14/2009 6:38 AM (GMT 0)
Pixie6976
You have gotten allot of outstanding advice from Lindaloo, stradog and PALady, LLPLUV,! You know it is OK and normal to feel the way you do! But with that said, please becarefull and don't jump in and chase after that tempting, but ever elusive mirical fix! There are so many people out there that prey upon a persons desperation and all you get from them in the end is an empty pocket and false hopes and promises, and lots more pain. We are here for you pixie and we all want what is best for you! Rember when you are here your pain is our pain too! PALady really hit the nail on the head! Remember even with accepting your condition, does not mean you have to give up hope! Mayby you will have to go through going to some more Doctors, they are not Gods you know and sometimes you have raise a little ruckus to finally get the proper treatment. But know we are here supporting you and also giving you our ear, when you just need to vent your frustrations.
I give you my prayers Pixie, and I do wish you well!

White Beard
Posted 10/14/2009 12:37 PM (GMT 0)
Thank you all so very much for your replies. While they are very helpful, I think it is time for me to break down and see a psychiatrist about this bc I am having trouble dragging myself out of this deep dark emotional hole I have been in. Even though I can go to the dr now, I just cant seem to find a better attitude. I think its just that block in acceptance... I dont know. Maybe I just need to lighten up. I will give this some thought.

I cant tell you how much all of your advice and stories, and support has helped me in the last week or so, and I am grateful to be here
Posted 10/14/2009 12:45 PM (GMT 0)
Pixie I found a wonderful psychologist that helped me so much. My PCP said I needed to see one, he put me on an antidepressant which really helped, then combined with the psychologist it was very effective for me. Yes, many of us have crawled in that black hole, you may need a little help crawling out. JusT remember that we are extremely strong people, not just anyone could handle what we deal with daily. If you feel you need some help, by all means get it, you have been thru alot for so long to be so young.
Posted 10/14/2009 7:35 PM (GMT 0)
Pixie,
I think finding a good therapist would be an enormous help, and as Susie said many of us need an anti-depressant to help kick-start our bodies. I take one, and I'd see a therapist if I had the resources (I'm in the mental health field, and I'd still go!). So please don't see it as anything you need to be ashamed of at all, even though I know there's a stigma about it. Someone who works with CP may be a help, because they understand all the physiological and psychological aspects of what we have to go through. It's great you came up with this idea yourself, and I think it can be a great resource!

Hugs,

PaLady
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