Suffering life threatening disease but blacklisted by all Specialists in WA without reason

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magpiei
New Member


Date Joined May 2011
Total Posts : 5
   Posted 5/12/2011 5:31 AM (GMT -6)   
Hi Everyone
I'm new here in the hope of finding some desperately needed help & info. I also want to share my knowledge of severe illness/disabilities with anyone who could benefit from it.
I suffer from a barely heard of disease called Adhesive Arachnoiditis, the result of a botched proceedure in a NZ public hospital. I have medical records which contain documents with this diagnosis from NZ Specialists, a NZ Pain Clinic & the NZ Health dept, but since moving back to WA 3 years ago I havent been able to get any urgent medical treatment from Specialists & Emergency depts.
 
I have struggled to find a GP, with most stating they know nothing about my disease & dont want to. Many took me on only to dump me without warning or reason, leaving me without the meds that keep me alive. My Pain Specialist of 9 months also dumped me in the middle of trialing me on new meds for breakthrough pain & my GP now tells us that all Pain Specialists & Neurologists in WA refuse to see me because I dont have private medical insurance. I do but they didnt even ask so there is obviously something else going on.
 
I have become bedridden again as the disease is progressing more rapidly than it should be but my flatmate has been left to provide full time care around his job & my GP refuses to do anything other than write monthly scripts. I dont want to die in agony & trapped in bed through neglect, when with the right meds I could once more enjoy some participation living assisted within the community.
 
 To make life harder the dept of housing promised me an old house after 3 years on the waiting list as a priority one, only to renege at the last minute, leaving me, my flatmate/Carer, jack russell & cat homeless. I was forced to purchase a caravan & awning for us all & a van for my wheelchairs, from the proceeds of the sale of my house in NZ & now have to pay for furniture storage as well. I was hoping to save this money to pay for a possible cure in Germany but it is fast dwindling. If anyone can help me in anyway I would be so gratefull. Thank you. Regards, Jai
 
 
 
 
(Edited for eaiser reading)

Post Edited By Moderator (Screaming Eagle) : 5/17/2011 7:13:28 AM (GMT-6)


Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/12/2011 8:09 AM (GMT -6)   
 
     Good morning magpiei!
 
           Welcome to the "Chronic Pain" forum!
 
               You know...I have read through your post several times and it just does not make any sence to me.
    I even looked up the "Adhesive Arachnoiditis that you suffer from, and yes it does seem incurable and very little is known about it. It looks like to me the tissue surrounding the spinal cord is inflamed? is that right?
 
      The WA saying that no one will treat you, because you do not have Ins is way off the chart of understanding for me, if indeed you have it. I know of no medical facility that does not ask for your Ins information when you sign in for treatment.
 
          While there is no known treatment, it does look like the best corse of comfort comes from Pain Med's.
 
    Maybe one of our members will understand this better than I do, and can suggest a better answer. The only thing I can think of is to call your insurance provider and have them refer you to a PCD that they work with.
 
          I wish the best for you, I really do!
 
              Take care,
 
    SE
Moderator Chronic Pain Forum

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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16416
   Posted 5/12/2011 12:32 PM (GMT -6)   
Hi Jai and welcome to Healing Well's chronic pain forum. I have read your post and I am not understanding either when you say no dr in the state will treat you. One thing you did not mention is how you contracted this condition. I am assuming you were living in NZ at some point is that correct? What treatment did the drs render there for you?

It is rare but specialist do know about this disease and they should know how to treat it. What kind of treatment have you had to date? Perhaps if you could give some more info here it would help. Have you tried getting in to any of the teaching hospitals in your area? That may be a good place to start is in a teaching hospital.

If you don't mind please give us some more info here. Take care.
Moderator Chronic Pain Forum

purplereading
Regular Member


Date Joined Nov 2010
Total Posts : 108
   Posted 5/12/2011 4:45 PM (GMT -6)   
I would, first, contact my insurance carrier, and get a list of providers for the insurance, then call one of the providers on the list. They are under contract to provide service for the carriers of that insurance. If the first , probably GP, you see does not feel comfortable seeing you, and treating the disease, then ask for a referal to a specialist on the list of providers. Take the list with you.

I live in MO, but if you had abig savings,you would not be allowed to live in our HUD housing, as it is for those with limited income. The housing that serves the elderly might be available, based on your condition, but the rent woud be too high.It would be better to rent publicly.\

If you left the practices owing huge amounts of money, that could be a reason. Call those you have seen in the past, and give them your insurnace information, so they can file for payment, or if you have paid in cash, for reinbursement for you.

That is the best I can come up with, based on what I was able to understand of your post.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/13/2011 8:28 AM (GMT -6)   
I have adhesive arachnoiditis from my two myelograms and post op scarring around the spinal nerves from my first surgery.
Adhesive arachnoiditis is caused by trauma, or damage to the spinal canal covering, and depending on the severity can be seriously disabling. There is no cure for it. Treatment is directed at minimizing symptoms, and providing pain relief as necessary.
I am also confused by your post- if you have insurance, then there is no reason if you have not been blacklisted /flagged for abusing your pain medications in the past. Have you failed a drug or urine screen? Or been flagged for taking more medication than you were supposed to?Going to multiple doctors and recieving prescriptions for pain medications from more than one doctor?  I am only asking to try to help you figure out where to go from here....if you have, then that will make finding another doctor willing to prescribe pain medications to you more difficult. Most doctors don't just drop a patient for no reason, no explanation. And especially multiple doctors.
Verifying your insurance is only as difficult as making a phone call to the insurance company.
If you have documentation of your condition, then you should be able to see a pain management doctor for consultation and a neurologist to follow you. Call your insurance company for a list of participating providers in your area and then start calling to make an appointment.
Some doctors may not want to do anything more , other than provide pain medications to help manage the pain, since further injections can make the arach worse, and surgery does nothing but cause more scar tissue to form.
You don't mention the degree of arach that you are dealing with but start with finding a neuro and a pain management doctor and make appointments.
Unfortunately, you aren't going to find help for the pain in the Emergency departments of your local hospitals, although you can call them during the day and ask for names of local pain management doctors and neurologists. Compare those names with those that participate in your insurance and make appointments.
 

krw135
Regular Member


Date Joined Mar 2010
Total Posts : 186
   Posted 5/13/2011 9:35 AM (GMT -6)   
magpiei,
 
Are you by chance referring to Dr K in Germany?  The adhesion removal surgery with the blue spray gel?
I am a 29 yo female, Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa, imuran, VSP
99- multiple failed remicade treatments, more hospital stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis which was awful!!
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck

magpiei
New Member


Date Joined May 2011
Total Posts : 5
   Posted 5/14/2011 1:50 AM (GMT -6)   
Screaming Eagle said...
 
     Good morning magpiei!
 
           Welcome to the "Chronic Pain" forum!
 
               You know...I have read through your post several times and it just does not make any sence to me.
    I even looked up the "Adhesive Arachnoiditis that you suffer from, and yes it does seem incurable and very little is known about it. It looks like to me the tissue surrounding the spinal cord is inflamed? is that right?
 
      The WA saying that no one will treat you, because you do not have Ins is way off the chart of understanding for me, if indeed you have it. I know of no medical facility that does not ask for your Ins information when you sign in for treatment.
 
          While there is no known treatment, it does look like the best corse of comfort comes from Pain Med's.
 
    Maybe one of our members will understand this better than I do, and can suggest a better answer. The only thing I can think of is to call your insurance provider and have them refer you to a PCD that they work with.
 
          I wish the best for you, I really do!
 
              Take care,
 
    SE
 
Hi Screaming Eagle, Thanx for your reply. Sorry Im not sure if Im replying to you correctly as Ive been bedridden & isolated for 16 years now with no-one to show me how to use internet, forums etc. So please have patience with my mistakes. I must also apologize for my delay in responding as I am not always well enough to do so & my old laptop doesnt always work.
 
I need to buy a notebook with guaranteed support as I am not computer savvy. We know of only 1 correct explanation online of Adhesive Arachnoiditis (AA) by Dr Burton, worlds leading expert & researcher of AA in USA. AA appears to be very political with most Doctors refusing to discuss, investigate or diagnose it. I have been frustrated & neglected because of this attitude & though my Carer & I have done everything possible to find out what the problem is we have not been able to in all these yrs.
 
Some groups for AA think drs are protecting medical insurance companies by deliberately preventing Patients from claiming compensation. But it is the Specialist who orders a myelogram & they are carried out in public hospitals. AA was first recognised as a major risk of myelograms in 1925 & most countries banned there use in the 30s. Except Australia, NZ & USA who do not inform Patients of the risk. They can do this because drs refuse to diagnose AA, therefore there are no true statistics of AA. So "recorded" cases are rare, ergo there is no risk to justify drs having to inform Patients of any risk.
 
Most sufferers never hear of AA & spend their lives in frustrated agony, unaware of the horrific disease they have & what is in store for them. In addition AA can take up to 15 yrs to present & drs take advantage of this lapse by saying that Patients symptoms are from other injuries sufferered during these yrs. Although AA is relatively easy to diagnose from the insideous symptoms & the fact that Patients have had a myelogram.
 
Often Patients encounter no other injuries so drs tell them their symptoms are all in their mind. Its incredible how they get away with false diagnosis as AA symptoms are v. severe & include paralysis which only develops from nerve damage. AA causes the spinal nerves to stick together causing major nerve damage & inflamation of the 3 membranes & spider like nerves within, encasing the spinal cord.
 
 Pain is only 1 of the symptoms which include; Excrutiating nerve pain throughout the body as the nerves degenerate, bodily dysfunction as the damaged nerves fail to send the correct instructions to limbs etc, Creeping paralysis as the nerves degenerate, shortened lifespan up to 20 yrs, Bladder & bowel dysfunction & incontenince, Contaminated spinal fluid from the injected dye causing intense spinal headaches lasting up to 3 months, vertigo & vomitting, chronic fatigue & exhaustion from having to deal with intense pain 24/7, Lowered immune system, Burning feet & other neuropathic pain sensations & a myriad of other insideous symptoms depending what stage of the disease the Patient is at.
 
But the worst symptom Patients must endure is the unbearable nerve pain which is likened to the pain levels of Cancer & treated with the same meds. AA is not rare at all, it is simply never suggested or diagnosed so there are v.few recorded cases. We have only ever heard of 2 Patients with diagnosed AA who have won compensation claims & both were made to agree to a different diagnosis in order to receive their payouts.
 
 MRIs will not normally show AA unless the magnets are on a v.specific setting but this setting is never used by the Radiologists. So most MRIs fail to show AA, allowing drs to deny cases of AA. Interestingly MRIs are the only proof drs will accept as a diagnosis of AA.  I will do another reply to give more info as I think I am limited by the accepted lengths of posts? Warm regards, Jai
 
 
 
 
(Edited for eaiser reading)

Post Edited By Moderator (Screaming Eagle) : 5/17/2011 7:15:39 AM (GMT-6)


magpiei
New Member


Date Joined May 2011
Total Posts : 5
   Posted 5/14/2011 2:57 AM (GMT -6)   
krw135 said...
magpiei,
 
Are you by chance referring to Dr K in Germany?  The adhesion removal surgery with the blue spray gel?
 
Hi krw & thanx for responding.
No, I think we are talking about different proceedures. The one on offer from a German Clinic involves collecting stem cells from the Patients bone marrow & injecting them into the myelogram site (sacrum area/lower back) in the hope they will grow new nerve cells to replace the damaged ones.
 
Sorry I dont understand the names you have used for treatments so it doesnt appear any of your treatments have been for Adhesive Arachnoiditis (AA). There are no treatments for AA just painkillers to help with the unbearable nerve pain which include morphine & nerve blocks. It sounds like no-one has diagnosed you yet & I commiserate with you as I know it is extremely frustrating not knowing why your body is doing abnormal things & terrifying not knowing what is in store for you from your illness.
 
If you had adhesion removal surgery you must have had adhesions somewhere. I understood that any invasive proceedure could cause adhesions from the scar tissue resulting & these adhesions are v.painful as they rub against the nerves. AA often comes with spinal adhesions but it sounds like you have something else? You could read my reply to Screaming Eagle for more info on symptoms of AA . You might find it helpful to investigate Crohns disease if your drs are considering this, as you will know if you have those symptoms or not.
 
 However Crohns disease is not a nice disease. My cousin suffers from Chrons disease & has really struggled with it, but I dont know enough about it to advise you. It is difficult to sort through all the symptoms & illnesses you might have, as symptoms can often appear the same for many illnesses. But if you are getting nowhere with doctors it might be worthwhile investigating online by your symptoms, if you havent already done so. Sorry I cant be of more help to you. Keep going, I know its v.hard but dont lose hope you deserve to know.  All the best, Jai
 
 
 
(Edited for eaiser reading)

Post Edited By Moderator (Screaming Eagle) : 5/17/2011 7:16:51 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16416
   Posted 5/14/2011 6:59 AM (GMT -6)   
Jai have you been to any of the teaching hospitals here in the states? How did you get AA? We also have a lady on here named Mrs 123 that has AA and she responded to you too.

Take care.
Moderator Chronic Pain Forum

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 5/14/2011 8:48 AM (GMT -6)   
Hello Jai, I am so appalled by what you are going thru, I hardly know where to begin.
 
First I am not at all familiar with AA., but that doesnt mean anything, I have to tell I am not familiar with various diseases that different people have on this cp forum.  But all that means is I need to do research, not that they dont exist, but they certainly do.
 
I have an awful feeling that the lack of treatment you are not getting and the rude (and thats mild considering what I really want to say) way you are being treated is that clearly this disease is directly caused by the very doctors who were supposed to be treating you.  I have not researched AA yet, but from reading the postings of others who either have it or have done some research on it, it is clearly caused by the doctor who first treated you or somewhere down the line the treatment seems to be directly caused by physician error.
 
I know a little about that as mistakes were made various times during my 11 years of being a cp patient, and one thing I am sure of doctors will raley around each other and never tell you that maybe one of your doctors made a mistake.  Unfortunatley they are more afraid of lawsuits then a persons health.
 
On that note, while you try to get the help you so badly need by following the suggestions of the postings of many people that are trying hard to get you some help, you might just want to get in touch with a lawyer.  I have never sued anyone in my life even though I have thought of it many times.  Maybe a little push from a lawyer could get you the help you so desperatley need.
 
My hopes and prayers are with you, I will be thinking of you and doing some research of my own, if I find anything at all I will certainly let you know.  It seems that the postings you have alreadly received tells me everybody is out there trying to find you some help.  That for right now I hope is a little comforting.
 
Gentle hugs, and many prayers for you.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/15/2011 9:02 PM (GMT -6)   
If I were you Id definetly hit up the teaching hospitals and University medical centers in the state because they are the number one accepters of say medicare type insurance, meaning anything that not private. Alot of doctors are not accepting non-private insurance right now because they do not know with the Presidents health care bill if they will even get paid what they've already negotiated in the past, or if they will get paid at all. I've had lots of trouble trying to get just a primary care/general practitioner to take me on as a patient, I either have to have private insurance or pay cash, even though in my eyes medicare is garunteeing they'll get paid as with private insurance your not necessarily getting your payment, and might not be the payment you want or think it should be.

Thats why to me, congress should pass a bill saying that every doctor in this country of the United States of America, primary care/general practitioner or specialist, private practice or medical school/teaching hospital/ university medical center environment, it should not matter, they should HAVE TO BY LAW accept medicare, and medicaid. To m there is no true reason why to not accept either except for that your afraid you wont get paid, and in other words, your worried about money over patients health.

And any congressman or senator who votes against a bill such as that should really be voted out of office, because how can you vote to fund medicare and medicaid and then turn around and not expect doctors to have to serve those same individuals. Doesn't anyone ever think when they talk about PCP shortages, how much the TRUE SHORTAGE would be if they included how PCP's wont even accept people even though them as a doctor IS ACCEPTING PATIENTS, just not THOSE PATIENTS.

I also understand a lot of us need specialist here on the forums but the reality of the world today is, a primary care doctor is so set on basically being a 'referrer' instead of a true doctor, they want to get paid as if they are a doctor when all they are doing is seeing you and writing you a referral to a specialist... no wonder why no new medical students are going into primary care and they all go into specialties. And we wonder why there is 60 billion in medicare fraud every year? and they wonder why medicare costs go up each and every year? We need to get representatives in government that have the minds of george washington, and thomas jefferson, people who used common sense when voting and introducing bills to the country. Where is our george washington , where is our thomas jefferson of today? Has he even been born yet? Has he passed away and not got his chance?(ok I'm done being a philosopher lol)

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/16/2011 11:33 PM (GMT -6)   
Let me see if I can make this explanation of AA a little easier. It is most similar to scar tissue only it is inside the spinal nerve covering. It can be caused by myelograms but that is not the only way, it can also be caused by steroids injected too near the spinal nerve covering as well. Usually referred to as scar tissue. In the spinal nerve covering ( dura) it causes the spinal nerves to stick together, and depending on the severity, will eventually cause them to adhere to the sides of the canal covering walls- looks very similar to over cooked spaghetti.
It was far more common during 1920-1970's , when a different oil based dye was used during myelograms but even the newer , water based scan contrasts can cause it. In fact, it wasn't until a few years ago that it was even a recognized "complication" of the oil based contrast agents- even though it was acknowledged as one of the complications in journals and such.....
Magpie is right, many times doctors don't want to tell a patient they have it, because of the litigation issue- I was never told about myelograms causing AA, and I had mine in 2006 and 2007 and 2008.....I only found out that I had it because of the debilitating problems that I was having trying to walk and asked specifically about it after my revision surgery. Once I asked specifically if that was an issue, and was told it was, I started to look into it.
Rates of progression vary considerably in people who have it- some progress much faster than others, some do very slowly- no one seems to know why that is. And given that this is caused by "treatments" and tests that we are told we need, very little is being done in the way of research and treatment for it.
Having surgery to try to remove the adhesions doesn't work- and in fact, can cause the progression to go faster, so treatment directed at pain control is about the only option and attempting to manage the other physical problems as they occur is about as good as it gets for "cure".
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/17/2011 3:05 AM (GMT -6)   
Magpiei, are you in Western Australia, or in Washington State, USA?

If in Western Aus, is there any chance you can get east (with help) and see the specialists there?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

magpiei
New Member


Date Joined May 2011
Total Posts : 5
   Posted 8/1/2011 6:56 AM (GMT -6)   
ivy6 said...
Magpiei, are you in Western Australia, or in Washington State, USA?

If in Western Aus, is there any chance you can get east (with help) and see the specialists there?   
Hi ivy, Sorry I have been too ill lately to reply... Im trapped in Western Australia because the only GP in WA I have found who will issue the meds Im prescribed (morphine & nerve blocks) will not write a decent referral letter for me. I cant stand this place because I have been scammed with absolutely everything I have paid for here in the 3 years I have been back and cannot believe how corrupt the MPs, govt depts, banks etc have been in stealing my money from me.
This GP has no problem with me being bedridden just because he refuses to increase my dose after 6 years on it. I have never even  met him because the new practice manager will not allow GPs there to do any more home visits. He has treated me for this disease for a year now but refuses to write my diagnosis in referral letters, leaving me better off without one. Even the Registar at the hospital refused to; Read my 16yr history and diagnosis made by several Specialists, talk to me, or even examine me. His report to my GP said nothing was wrong with me, although he gave me a script for nerve block meds, telling my GP to continue the morphine if he wanted to. This Registar has now created a new hospital file for me, wiping all my history, so I can no longer go to emergency or be admitted to any hospital. My GP will not give me enough meds to fly East, find a new GP & fly back. So I am not allowed to go on holiday or anywhere else.
 I have tried to find a GP over East online but none will tell me if they will continue my meds or not & if I had to spend any time without any I would rather die. The pain is too unbearable and I struggle to get through each day on the meds Im on now. 
But I do appreciate your attempts to help me, I had pretty much given up on any assistance and its nice to know not everyone I come into contact with is without compassion for those who have nothing else... Thank you

magpiei
New Member


Date Joined May 2011
Total Posts : 5
   Posted 8/1/2011 9:04 AM (GMT -6)   
mrsm123 said...
Let me see if I can make this explanation of AA a little easier. It is most similar to scar tissue only it is inside the spinal nerve covering. It can be caused by myelograms but that is not the only way, it can also be caused by steroids injected too near the spinal nerve covering as well. Usually referred to as scar tissue. In the spinal nerve covering ( dura) it causes the spinal nerves to stick together, and depending on the severity, will eventually cause them to adhere to the sides of the canal covering walls- looks very similar to over cooked spaghetti.
It was far more common during 1920-1970's , when a different oil based dye was used during myelograms but even the newer , water based scan contrasts can cause it. In fact, it wasn't until a few years ago that it was even a recognized "complication" of the oil based contrast agents- even though it was acknowledged as one of the complications in journals and such.....
Magpie is right, many times doctors don't want to tell a patient they have it, because of the litigation issue- I was never told about myelograms causing AA, and I had mine in 2006 and 2007 and 2008.....I only found out that I had it because of the debilitating problems that I was having trying to walk and asked specifically about it after my revision surgery. Once I asked specifically if that was an issue, and was told it was, I started to look into it.
Rates of progression vary considerably in people who have it- some progress much faster than others, some do very slowly- no one seems to know why that is. And given that this is caused by "treatments" and tests that we are told we need, very little is being done in the way of research and treatment for it.
Having surgery to try to remove the adhesions doesn't work- and in fact, can cause the progression to go faster, so treatment directed at pain control is about the only option and attempting to manage the other physical problems as they occur is about as good as it gets for "cure".
hi mrsm, thanx for your explanation,
Im not much good at it as I have no knowledge of human biology & have never met a Dr willing to discuss AA with me. My GP told me I had it and would die from it. He said I would need increased doses of morphine as the pain increased with the diseases progression. He also said it was likely I would be slowly paralysed since I have already had incidents of paralysis lasting several months. It was v.difficult to get this much out of him. I am still learning to use internet & have had to research my disease this way. For the first 10 years I had no idea what was happening to my body & drs refused to do any investigation, telling me it was all in my head. By chance I happened to meet the instigator of the NZ AA support group who filled me in. But at first I tried to pretend I didnt have the bad version of Arachnoiditis, believing I would get better. Unfortunately my disease has been blatantly obvious as I have not been able to function normally since the day of my myelogram and blood patch. Prior to this I was very healthy with no illness and nothing else had happened to me that could possibly cause AA. Now I know my myelogram was unnecessary and they should never have done it. I was not told of any risks from it. Even my hospital notes admit my myelogram was badly botched in every aspect, so I cant deny it anymore and I am going downhill quickly.  
Are you in USA? I live in Australia and have seen online a treatment where stem cells from Patients own bone marrow are injected at the myleogram site, which may or may not repair some of the damage. This treatment was in Germany, have you any knowledge of this? Also I have tried to contact Dr John Burton (leading expert in AA) who lives in USA, to ask for the correct magnet settings required to "see" AA on an MRI, but I cannot find a contact address or email for him. Have you consulted with him? or do you know where he is now? There are too many false cures for AA and I wanted to ask him about stem cell replacement for AA as he is the only Dr I have heard of who is knowledgable about AA and is not afraid to write papers on the truth about it. It is hard to believe that all Drs in USA, NZ & Oz have sworn to be silent about AA. They continue to diagnose AA Patients with chronic pain instead, which simply means; undiagnosed pain lasting more than 3 months. Although they pretend otherwise; this is not even a diagnosis, let alone some new kind of pain which is all in the Patients mind, as they would have us believe. Many symptoms prove otherwise yet they are all ignored. I dont know of any other illness which is so blatantly discriminated against.  NZ copied USAs stance, even employing USA Lawyers experienced in Medical Insurance Claims to squash any AA claim. By denying AA, NZ have few recorded cases & have used this as an excuse not to inform Patients of any risks. Saying there are not enough cases to warrant this. Australia are now doing the same with all Drs Practices being taken over by large USA Medical Insurance companies. A conflict of interest??? The govt plan to force all Patents with long term pain to attend vigorous exercise programme,s along with employment re-education and counselling with Psychiatrists. Instead of meds Patients must practice self healing for the pain and distraction methods. They obviously dont have any idea how excrutiatingly painfull this disease can be. Unbelievably the govt is even saying that Cancer Patients will be made to attend these programmes at Pain Clinics. Many Pain Specialists have already closed their Private Practices in Oz. GOD HELP US ALL!
Thank you, I really appreciate your honesty and v.useful shared knowledge,,, magpiei
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/2/2011 1:44 AM (GMT -6)   
Whoa. That's awful, Magpei, and (surely!!!) illegal, too?

Have you tried talking to the health ombudsman? Are they able to assist at all? I'd think so, especially if you have been scammed.

I'm also wondering if perhaps District Nursing (RDNS) can help - it sounds as if you need a good advocate there.

A lot of hospitals have patient advocates, and you could perhaps approach him / her for help next time you need to go to hospital.

Um... still thinking...

Chronic Pain Australia might be able to help with advice / support / advocacy, too: ph. 1800 218 921


I apologise if these are already routes you've tried, Magpei, but *something* has to be wrong and fixable here. It's not right that you're suffering so much, and without assistance.

Has Centrelink done anything to help you?

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 8/2/2011 6:20 PM (GMT -6)   
Requiem..just FYI but Magpiei is in Western Australia...not in WA in the US...So while it's great info about Medicare/Medicaid....it's unfortunately not applicable to her...
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 
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