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Old 03-07-2008, 10:41 AM   #1
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Join Date: Oct 2006
Location: california
Posts: 73
KonaKid HB User
Please Help. Time sensitive response desired.

Folks I have only check'd in here a few times over couple years--if that--so I would imagine none of ya know about me. Well, I have had three back surgeries, and two neck surgeries--fusion, blah blah blah...most of ya know the drill I assume. Been ten years of suffering gettin' worse. Been ten years out of work. Been ten years beaten down by State Fund. Been ten years of massive neck and head pain (caused by the double fusion neck surgery) and many years of spine deteriorating--Arthritis, stenosis, inflamed this, inflamed that, buldging disks in neck, thoracic, lumbar; scar tissue, nevere damage, and on and on it goes. In terrible pain every day.

I need your something of someone or of some "manys" here. Please, if you know of a place anywhere in the U.S.A that (somewhere not in California since it doesn't exist as my personal doctor told me) treats people with so many spine problems, then please list those places here. I must find somewhere to go to quick. My physician (not State Fund docs) told me to get out of State Fund situation and find a place to go to treat all this pain and suffering...well, does anyone know where to go? She mentioned Colorado, but wasn't quite sure if there was a center there.

Aloha.........

 
Old 03-07-2008, 04:51 PM   #2
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Join Date: Mar 2008
Location: Waterloo Twp, MI, USA
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KieriSG HB User
Re: Please Help. Time sensitive response desired.

I am sorry you're having to deal with so much pain.

I live near the epicenter of some truly great medical facilities -- Michigan. I'm not far from Ann Arbor, home of the University of Michigan, one of the leading research hospitals in the world. There are so many extension clinics, specialists, etc., I think sometimes I take it for granted. The rest of our state's economy may be down the toilet but our medical field is thriving.

Try looking up U of M's facilities. The place is beyond huge.

Good luck!

Last edited by HBMod07; 03-12-2008 at 10:19 AM. Reason: removed excessive quote

 
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Old 03-07-2008, 06:02 PM   #3
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Join Date: Apr 2005
Location: Gresham, Oregon
Posts: 1,342
Fabrashamx HB User
Re: Please Help. Time sensitive response desired.

I am a little taken aback that you are looking for doctors all over the US, can you be a little more specific?

Any teaching hospital should have a good pain clinic attached, you could start there.

Are you moving to a new area. or planning on travelling a lot? I am not sure what your plans are, but if you are going to be moving around so much that you would consider seeing a doc in any state (except California? some of the best hospitals in the world are in CA, in Los Angeles and in Irvine)
Make SURE you have all your records with you, I have had to wait months for my records to make it across town, and most pain managment doctors will not prescribe anything for you until they have your records in hand, I wouldnt want to have to wait for them to catch up to you in another state.

If your screen name reflects your life style, you may run into problems with testing as well. more and more pain management doctors are relying on UAs and contracts, they are becoming the standard.

Hope this helps. and I hope if you know of one area you will be settling in, you can let us know so we can give you more specific help.

~Fabby

I'm really sorry, I want to help and dont mean to seem dense, but do you live in California, but dont want a referral to a doctor in California? Also, why did your doctor say that about california, isnt he in california? lol sorry I am confuseddddd

Last edited by Fabrashamx; 03-07-2008 at 06:05 PM.

 
Old 03-11-2008, 11:06 AM   #4
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Join Date: Oct 2006
Location: california
Posts: 73
KonaKid HB User
Re: Please Help. Time sensitive response desired.

This is the thing. Ten years on California STate Worker's Comp. Ok, yeah best doctors/surgeons here I've hear this over and over. Heck, my surgeon was supposed to be one of the best in the world. Operated on Collen Powell's son.

Life style...I know I know...I unfortunately chose that name without giving though to what it is meant to many...oi...I was going to ask moderator or whatever the person is here controlling things to allow me to change it. Yeah, I grew up in Kona. Yeah, I should have pick different name. Thinkin' of sunsets actually.

The doctor who told me to search for something outside of California was talking about a comprehensive place with all kinds of doctors/pter/etc etc...working at same facility. She claims California not the place. I have heard of these places she is talkin' about. I think Paula Abdual went to one. What's her face, her mom is Judy Garland, went to one.

It's been ten years. Cali might have some of the best bells and whisltes, but Gov. Arnold gave State Fund so much power that just end up messing with you and letting you suffer and suffer and suffer...

I read and read the post here. Its gets so damn depressing. I wish we could rise up and start some Revolution or something to force someone somewhere to find better ways to stop the nerve pain, fix the bad disks differently, etc, etc...Seven bloody years of massive headaches/neck pain after double fusion neck surgery. Oi. New MRI's of back (double fusion there too..three surgeries on it) and neck--arthritis, stenosis, bigger buldging disks, herniated disk, scar tissue surrounding nerves, inflamed this and that...man...all it is everyday is pain and paralysis and bladder problems and bowel problems and frickin' insurance nightmare. The new law in Cali is yer only allowed 24 visits to P.T.


I'm gettin' fustrated presently. I need to back away and take a breath. I know Cali has great doctors. But the great doctor's don't take State Fund and Medical or Medicare. Yeah, there are some, but if yer a California in the system, ya should know about the cuts and that more and more doctors refusing....anyway....

My personal physician told me to get out of Worker's Comp.....she said I need to find some place, comprehensive place (one place like maybe this U of M mentioned in other posts) for all the spine damage and pain I have...she said there is none in Cali.

Yeah, imagine having ten years of medical records to pass on to each new doctor. Frickin' nightmare.

Revolution People. Not just for our spines but to stop the insanity of all politicians who are decieving the people and takin' more and more...

I'm gonna stop...have flu...gonna see that doctor tomorrow...

hoping that I would have found place as she mentioned by now...

hopefully she will have found one...

I can't keep living like this every frickin' day...

Hey moderator, let me change my moniker, please...

Last edited by HBMod07; 03-12-2008 at 10:20 AM. Reason: it's not necessary to quote a message you are directly responding to

 
Old 03-11-2008, 11:56 AM   #5
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Join Date: Apr 2005
Location: Gresham, Oregon
Posts: 1,342
Fabrashamx HB User
Re: Please Help. Time sensitive response desired.

Hi Kona,

Thanks so much for the update. I am so glad I asked about your name, I think lots of people would jump to that conclusion, as you said, I am glad you cleared it up, The sunsets are beautiful and I think its a fine name if you dont mind the occasional question!

I understand completely now where you are coming from, California was a leader in developing the HMO (kaiser is king) and it has really become a layered system where the rich have freedom of choice and private care and the rest of us have 15 minute office visits and co-pays for everything.

Members of certain HMOs arent even offered the gold standard of care for things like cancer, some of them have lists of approved (what they are willing to pay for) chemo meds, and not only will their members not be offered the state of the art meds, they wont even be told they exist! So yeah, I know where youre coming from!

I would suggest you contact the Mayo clinic in the midwest, or any large teaching hospital, there is one attached to Duke university in NC that is excellent. Try asking a doctor you like where they would take a family member with your problems, they will probably steer you in the right direction.

I usually post on the chronic pain threads, if we can be of any assistance over there, please come on over and post. but the people here are excellent and there is a lot of hard won knowledge and area specific referrals that will help too.

Hang in there, If there is anything I can do to help, please let me know.

Your Friend, Fabby

 
Old 05-07-2008, 12:39 PM   #6
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Join Date: Oct 2006
Location: california
Posts: 73
KonaKid HB User
Re: Please Help. Time sensitive response desired.

Quote:
Originally Posted by Fabrashamx View Post
Hi Kona,

Thanks so much for the update. I am so glad I asked about your name, I think lots of people would jump to that conclusion, as you said, I am glad you cleared it up, The sunsets are beautiful and I think its a fine name if you dont mind the occasional question!

I understand completely now where you are coming from, California was a leader in developing the HMO (kaiser is king) and it has really become a layered system where the rich have freedom of choice and private care and the rest of us have 15 minute office visits and co-pays for everything.

Members of certain HMOs arent even offered the gold standard of care for things like cancer, some of them have lists of approved (what they are willing to pay for) chemo meds, and not only will their members not be offered the state of the art meds, they wont even be told they exist! So yeah, I know where youre coming from!

I would suggest you contact the Mayo clinic in the midwest, or any large teaching hospital, there is one attached to Duke university in NC that is excellent. Try asking a doctor you like where they would take a family member with your problems, they will probably steer you in the right direction.

I usually post on the chronic pain threads, if we can be of any assistance over there, please come on over and post. but the people here are excellent and there is a lot of hard won knowledge and area specific referrals that will help too.

Hang in there, If there is anything I can do to help, please let me know.

Your Friend, Fabby
I've been away dealin' with this and that and not having internet access at home have not found oppertunity until now to respond. Thank you for your input. I have begged and begged my doctors to send me to Mayo...no go. It is now believed that I have arachnoditis. I figured that last year. Not one doctor would take the time to listen. I recently met with AME who suggested that I have arachnoditis--I wept a bit when after the words left his mouth. Worker's Comp is refusing to send me to Neurologist for confirmation of ARC. I was also told I have Complex Regional Pain Syndrome--which seems to me just something that means the doctors don't know why I'm in so much pain. Yet, ya look at my new MRIs--lumbar, thoracic, cervical--and much is seen that testifies to my many spine related pain and organ dysfuctions..ie...bladder and bowel. I was once told I had Caudia; but another doc said "no" without examining the old MRIs. Anyway. I'll be back lookin' for help. I need to find out how ARC is identified and thus prove to Workers Comp I do indeed have it and it is quite dibilitating.

I recently learned that the surgeon who performed my double fusion neck surgery reported to State Fund that I had two herniated disk in neck...not true. Have the MRI to prove it. 1 to 2 milimeter buldge in one disk and some stenosis. The AME wonders why such invasive action was taken to stop neck and arm(s) electrical pain--none that is comparable to what I suffer now.

Five spine surgeries from '98-2001---nothing but terrible pain growing and growing and growing.

Aloha and Mahalo...

 
Old 05-07-2008, 09:55 PM   #7
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Join Date: Dec 2003
Location: Northern Virginia
Posts: 1,691
lfoster21 HB User
Wink Re: Please Help. Time sensitive response desired.

Konakid-First I wanted to let you know that I too have Arachnoditis and left you a post on your other thread, so please look at it as well. I am at the end of treatments and am being told that Arachnoditis is a life long disorder and I am going to be on meds. for the rest of my life. Being that I am 45 and have many years ahead of me, I too am looking for different avenues/spine ceners.

Are you looking for a center to focus on the pain and keeping it under control, or are you looking for other spine centers, that maybe able to fix some of your problems? I am looking into info. about alternative methods such at accupuncture or chiropractors, as well as laser spine procedures. I can't imagine how much damage meds. can do to my body and organs, over the next 40 some years. I am not ready to stop looking for help in relieving my symptoms with less or no meds.

In Virginia, there are 3 places I am planning on looking into. They are The VA Spine Institute and The Laser Spine Institue, and NOVA Spine and Injury Ceter. If I learned more about them, I will update you on them.

What treatments for pain have your tried already? Have you looked into the spinal stimulator? I just had one put in a few weeks ago and I am getting some relief from about 1/2 of my symptoms/pain.

Please keep us posted on your situation. I have never talked with anyone else with Arachnoditis and was thrilled to hear from someone who knew what I was really going through. (Not to say anyone else here does not understand my pain...I know you all do. There is just something about talking with someone wo has the exact same dx.)

Lorie
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Old 06-10-2008, 10:23 AM   #8
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Join Date: Oct 2006
Location: california
Posts: 73
KonaKid HB User
Re: Please Help. Time sensitive response desired.

Quote:
Originally Posted by lfoster21 View Post
Konakid-First I wanted to let you know that I too have Arachnoditis and left you a post on your other thread, so please look at it as well. I am at the end of treatments and am being told that Arachnoditis is a life long disorder and I am going to be on meds. for the rest of my life. Being that I am 45 and have many years ahead of me, I too am looking for different avenues/spine ceners.

Are you looking for a center to focus on the pain and keeping it under control, or are you looking for other spine centers, that maybe able to fix some of your problems? I am looking into info. about alternative methods such at accupuncture or chiropractors, as well as laser spine procedures. I can't imagine how much damage meds. can do to my body and organs, over the next 40 some years. I am not ready to stop looking for help in relieving my symptoms with less or no meds.

In Virginia, there are 3 places I am planning on looking into. They are The VA Spine Institute and The Laser Spine Institue, and NOVA Spine and Injury Ceter. If I learned more about them, I will update you on them.

What treatments for pain have your tried already? Have you looked into the spinal stimulator? I just had one put in a few weeks ago and I am getting some relief from about 1/2 of my symptoms/pain.

Please keep us posted on your situation. I have never talked with anyone else with Arachnoditis and was thrilled to hear from someone who knew what I was really going through. (Not to say anyone else here does not understand my pain...I know you all do. There is just something about talking with someone wo has the exact same dx.)

Lorie
Aloha, Lorie...

I've been so busy with Worker's Comp mess (no treatment for last year--I'm on the 11th year of this nightmare that began with a work injury and was suppose to have just one simple back surgery and all would be well as the surgeon told me) and do not have internet access at home so I have not had chance to return here as I had planned to.

As far as the scar tissue/arachnoiditis I have no idea yet. I heard of a breakthrough in Germany, but have not been able to find it on the Net either.
I'm right there with you...I'm 40 and to think that I could live another, God forbid, 35-40 years is terrifying. As I sit here typing my legs and arms are teeming with cold pins and needles and I have to keep standin' up to stop my legs from "fallen alseep". Oy.

I have been on many meds throughout the years. Last four years on Actiq--24,000 to 36,000mcgs a day, and that was just to battle daily massive neck and headache pain. I was forced in to detox in Feb of '07. I was promised that it was just a trial run to see if being off meds would stop the cervical headaches. Well, didn't work. And then the promise of docs not to just allow me to keep suffering with them without meds ended up being a lie. In and out of ER's again as was the case back in 2000-2002.

I called a place in Florida (laser spine institute) who claimed they can remove scar tissue. But when I called I didn't mention arachnoiditis. I will be back here, hopefully, regularly as I intend to plug in to the Net via home.

I read an article by some Prolotherapist who claims that prolotherapy works in lowering the severity of nerve pain we and all others suffering the plague of spine associated decay battle against daily. I don't know. Worker's Comp is not hip to allowing folks access to Prolotherapy, Rolfing, Chiro, etc because they see it as lackin' scientific proof of it's efficacy (spelling?). Yet, they are hip to all kinds of Psycho therapy even though, as argued by top thinkers of our day, it isn't a science either. Worse, Workers Comp bases all their decisions regarding treatment on whether or not it is a "cure." So if ya have arachnoiditis, they can say well there is no cure therefore all long term treatment needed to battle it's expanding pain is not covered.

I have more to say and more to read.

I wanna go back to my little grass shack in kealakakua, Hawai'i....

Aloha.

 
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