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    Old 12-06-2007, 01:47 PM   #1
    debsdebs
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    bullied by 3 Pain management doctors

    I went to a meeting to discuss an emergency planfor when my pancreatitis flares up
    I was supposed to be picked up and taken there by my psych, and my mum was to be audioed in.
    None of that happaened
    When I got there I was by myself for ten minutes I tried to get my mum in and they wouldnt let me, I felt like if I did then I wouldnt get an emergency plan for hoospital or a pain pump.
    right now I cant go to a hospital, they have been trying to take my pain meds away.
    They had already written a plan. I have a head injury and they would not let me have a support person I cried for 2 hours in there, they slammed every thing I said, they made me feel like i was a criminal.
    the top health person in this country has decreed that they have a hospital plan with my input thats why there was a meeting.
    I am so upset, I want to die.

    debs

     
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    Old 12-06-2007, 03:41 PM   #2
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    Re: bullied by 3 Pain management doctors dave pls read

    Sorry Deb, Did you see my reply to you last post. Was the doc that is presently prescribing, there taking part in the slam. If not, I would simply ask him to get involved and get the minister involved. If you still have a doc willing to prescribe, if he is able to prescribe meds for home injection so you could cut the ER completely out of the picture. If you don't have home injectables, the next closest thing would be some type of oral/transmucosal Fentanyl like Aqtiq in the US.
    Good luck, Dave

     
    Old 12-06-2007, 06:55 PM   #3
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    Re: bullied by 3 Pain management doctors dave pls read

    Hi Dave

    yes I think I got the last one before I went. The doctor we thought was on our side was a woman psychiatrist in the old nasty pain clinic. She has my Gp under her control and she was there along with head anesthtist from nasty hosp and the new head PM for in akl. They were all there. They are calling me an addict now, and they said to my mum when I went out f the room as I finaly got her in, I was crying so much that I was seeing different docs for pain meds, well yes I have but both my GP and her are part time and so I was not getting meds and going without so I had to go elsewhere a couple of times. They also sent me to a GP who treated me like an addict due to the swedish pain doc who was saying I was morphine in tolerantetc. and I hated him so I went elsewhere.
    here they dont have contracts and pain docs are so few.
    Dave we have let the minister know and he is appalled, and said played into his hands.

    this is such a mess, I am going to see my gastro specialist next week who diagnosed me andask him to support me, as he has done to the minister, the woman shrink was supposed to make sure akl was independant but she spoke to them after we saw him and it was so nasty now its terrible, I believed I would finally get a pump, I am so crushed.
    They said to my mum, well with the pump she may be paralysed, get an infection, and go hunting for meds eg morphine...... i am devestated dave I really am. They have character assassinated me you name it that woman has called me it narcissistic...yeh right..

    i just dont see a way out
    I cant get actiq or injections at home we are in the country and theres noone that could do it unless I misunderstand you

    debs

     
    Old 12-06-2007, 07:54 PM   #4
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    Re: bullied by 3 Pain management doctors dave pls read

    By Injectables I meant proloaded syringes, so that you can give yourself an IM shot in the thigh. As far as the risks with a pump, being paralyzed or getting an infection, yes there are risks, There is also a 1 in 10,000 risk someone that has gen anesthesia won't wake up. I can't imagine the ods of being paralyzed by a pump being greater. They are catastrophizing the possibilities to talk you out of pursuing it for whatever reason. Personally i have never heard of anyone being paralyzed by a pump in the 14 years I've been involved in PM. Infections can hapen. Pumps can fail and need to be replaced and spinal fluid leaks happen, all of which can't be fixed.

    I don't see why the pump is off the table other than some fear you will doc shop with a pump in you and nobody would notice??? If they examine your belly for Panc, they would notice the pump. If anything it would make it harder to doc shop. I really am sorry, i just don;t get it. DID YOU GET A CHANCE TO DISCUSS THE USE OF LONG ACTING vS SHORT ACTING SINCE THE SHORT ACTING SEEMS TO BE THE BULK OF YOUR PM. THAT GOES AGAINST EVERY MANUFACTURERS PRESCRIBING INFO OUT THERE. Sorry bout caps

    I don't know how much pull the minister has as nobody can force a doc to prescribe anything in the US. They can recomend, but it's the docs decsion. The newer pumps alows as much as 6 months between refills. It seems ideal for the type of pain you have and a single trial doesn't tell you any more than taking one pill. If it's not enough, it doesn't mean your'e tolerant to all doses, just the one the gave you. Panc... is one of the 5 great pains and if they feel it's more cost efective to hospitalize you every time you have a flair, maybe you should let them do it. Then measure the cost of manageing your pain in patient VS out patient.

    As far as pumps go, no addict is going to give up the kind of control you have with a 30 day supply of orals sitting in front of you and the ablty to just take more. When you have a pump, you give up that option, you have to trust the docs will do their best to manage your pain and adjust the pump to a level you can function at. Unfortunately were paying the price of every addict and every person that feels entitled to the same meds because their sore at the end of the dayor is unwilling to make lyfestyle changes as long as they believe there is a dose of meds available that could prevent them from having to adapt their life to manage their pain.

    The willingness to do anything that might possibly bring relief means more to most docs than reporting high pain scores, what do the docs suggest you do? Other than blame it all on your personality. Why can't the come up with a treatment plan that suites your DX. Is a nerve block or denervation/abalation an option for panc.

    The important thing is stay calm and rational. I went 7 years and 3 failed back surgeries before opiates were given. Trust me, the thought of sticking around to see what happens tommorow was a deamon I wrestled daily. Had I done something foolish and attempted to check out, it probably would have taken me off the list of patients that should be given these types of meds.

    I hope your mom didn't buy into the addict speech, It's just a couple docs opinion and their opinion seems to change from month to month.

    Have you consulted a lawyer about the way you have been treated. I rarely recomed this because most folks that want to sue don't have any actual damages other than getting their feelings hurt. When their treatment has brought you to the edge and robbed years of your life, It seems you actually do have damages that should be compensable.

    I'm at a loss for words especialy when I think about the Entitled and the belief many have that because they pay a 35 dolar copay, a PM doc is their private doc that should jump when they complain of pain. Every patient a PM doc sees complains of pain, but some are more special than others in their beief system.

    I worked 9 hours today and can't find a comfy spot, Gotta move but I'll check back. Take care, Dave

    Last edited by Shoreline; 12-06-2007 at 09:25 PM.

     
    Old 12-06-2007, 09:12 PM   #5
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    Re: bullied by 3 Pain management doctors

    Hi Dave

    thanks without you and a few other friends on boards i would have checked out long ago. No my mum didnt buy the drug speech she was furious they kept her away and hour and when she rang i was crying uncontrollably.
    Thanks for those facts on the pump.

    the minister here is teh health and disability chairman he can order a hospital or doctor to treat, he can oder them penalties he is like a court of law and is very cautious. he has been informed re the latest fiasco.so they will go through them.
    the hospitals here I go in are not private they are government owned as emergencies cant go private.
    I avent heard of anyone getting injectables, good point maybe cancer paients getthose? what would be in them?
    my condition is probably 2 in 100,000 and of that most are caused by alchol mine was caused by surgery. Of those most with alchol forms around 90 percent most may have no pain. the idiopathic like me well there pain is mind numbingling unrelentingie it has been going on 8 years only when i had the interpleural catheter with local anesthetic in did it

    mum is now getting in touch with the human rights people as well. It seems that this pain clinic has a few other patients that have been treated badly.

    I didnt get that bit about PM docs and patients with beliefs and special. i had a great PM doc john and he was wonderful when he left last year is when all this stuff turned nasty,

    so you hung in there for 7 years with no pain meds, arghh you need a medal, or I am a wimp lol....
    so you have had 9 years in PM thats a long time, can i import you to new zealand
    i wish there was IM here, wouldnt feel like the end of the world then

    below is a little on chronic panc, I gave this to the new pain clinic the day before, they berated me and said its not my job to educate the ED on a rare disease , I said but it would help and they slammed memore, have a look then you can see what I mean by flare up attacks..... I guess I am at the severe stage and when they read this they hated it hahah

    Damage to the pancreas can be diffuse, focused or annular. Diffuse or sclerosing damage is the hardest for the Docs to deal with because they can't point at something and go "A-HA". Since there is no single point of failure it is usually written off as "idiopathic" or no known cause. The deterioration is unpredictable in speed but the progress is steady and frequently accelerating. The pain from this form is just as steady and unrelenting. It can be mild or severe but since it never stops or even slows down it is simply mind numbing. Depression is extremely common among these patients due to the unrelenting nature of the chronic pain

    Focused damage to the pancreas is almost never labelled idiopathic. There will almost always be an obstruction or defect at the root cause. Obstructions can be a stone, tumor, stricture or malfunctioning valve (SOD). Defects that can be at the core of focused damage include Pancreas Divisum, blood flow restrictions and several very rare conditions. Unless the root cause is fixed/removed the deterioration is usually very rapid and excrutiatingly painful. The pain tends to come in peaks and valleys. The longer the obstruction remains in place, the more damage is done, the higher the baseline level of pain becomes. Surgery is very often determined to be an answer for patients with focused damage. If the surgery is early enough then it is highly successful and the patient may never show another symptom. The later in the deterioration it is done, the lower the odds of success.

    Damage known as Annular Pancreas is very rare. In this type the damage basically forms in a ring. As the ring dies and becomes larger it can cut off or strangle sections of the exocrine pancreas behind it. This can go unnoticed until it is too late. You can end up losing a huge amount or all of the pancreas very rapidly. The pain usually doesn't become severe until it is very advanced. A very complicated surgery is almost always required. Many times a Whipple is the only answer if there is any hope of being pain free and insulin independent.

    You'll hear the docs throw around the terms mild, early, severe and end-stage casually. Doctors that throw around the term mild should probably be fired. How can you have irrecoverable damage to a critical organ and have it be "mild"?

    The best way I can tell to categorize CP is by defining early as the stage you're in before they figure out how much damage has really been caused and what the root is. Middle stage is while all of the symptoms are manageable by diet/lifestyle changes or medication and you can still function in your normal life completely. This doesn't mean you are not going to have acute attacks or flare-ups. It just means that your day to day life can go on with little modification.

    Severe CP begins when medication is unable to control one or more of the symptoms on a regular basis. Your life has a severe impact as you are unable to perform to the degree you had in the past. Severe CP is more a state of symptoms than it is a measurement of quantity of damage.

    End-stage is just what it sounds like. The structure of your pancreas has deteriorated to the point of near or complete exocrine dysfunction. Pain is disabling and enzyme supplements are required for even the smallest amount of food. At this point it is possible that the damage has caused irreparable harm to the Islets of Langerhans. Islet cells produce insulin into small pools in the Isles where it is picked up into the blood stream. If the damage has compromised the blood flow or has caused too many of the cells or pool locations to become non-functional then diabetes can occur. Doctors will bring up a complete pancreatectomy for pain control if there is little hope for retention of insulin independence.

    There is a stage that may be the medical equivalent of an Urban Legend. Burnout is the stage where all exocrine cells have been destroyed by the disease. Since there is no more to deteriorate, the pain stops. Enzyme supplements are required but they probably have been a requirement on the table of the CP patient for a long time anyway. Although there is some argument internationally the Doctors here believe it is highly likely that diabetes will result. Still, there is that ray of hope to cling to.

    "Pain free and insulin independent" is the last dream of the CP patient.

    I was told by my Surgeon not to have the Total Pancreatectomy that my GI Doctor had recommended. When a Surgeon tells you not to get cut you have to listen. The fact that he is the Head of the Surgery Department AND the Islet Transplantation Center at one of the top medical schools in the country gives him instant credibility. He also was the Doctor who performed the Whipple Procedure on me.

    He said that we are within 5-10 years of some remarkable breakthroughs in Endocrinology and Transplantation that may change our perceptions completely. That was in 1999 and there are several still on the horizon. Geneticists are rapidly closing in on raising pigs with no genetic rejection markers. Your immune system would not recognize it as a foreign body when transplanted. This would give us a virtually unlimited supply of hearts, livers, pancreii and kidneys available for transplantation without the harsh life with anti-rejection drugs.

    There are also promising technique modifications in the works for harvesting a larger number of Islets from a pancreas during a Pancreatectomy with Islet Cell Auto Transplant. That might make more of the procedures fully successful.

    Living without a pancreas is no picnic and Dr. Brunicardi would have to be convinced that there was no hope before he would take out a non-cancerous pancreas.

    Anytime a Doctor starts taking about cutting the first thing to ask is which surgery the doc has in mind. There are only a few choices. There are endoscopic procedures done under the auspices of an ERCP. They can open up the sphincters by cutting them with a wire lead or placing stents or both. All of the other procedures are open surgeries.

    There is a Puestow procedure which basically is used for ductal problems. They filet the pancreas and sew it directly into the duodenum so the pancreas secretes directly into the small intestine. There is very little tissue that is discarded in the process.

    The other commonly available surgery is the Whipple procedure. This is very major surgery. There are a million options on this one. Questions to be determined are how much will be removed, which part will be taken and how many Whipples has the doc done. There are also differing techniques. My surgeon used a technique he helped refine when he was at UCLA. He has actually done hundreds of them. He saved both my pylorus and the duodenum. He removed my gall bladder, 3/4 of my pancreas and 1/2 of my stomach. There is another variant called a Beger Procedure that reduces recovery time even more as it saves more if not all of the stomach along with the pylorus and duodenum. This is a relatively new procedure in the US but has been used in Germany for quite a while.

    The complications of these surgeries can be bleeding, infection or fistula (leakage). The location and number of drains (Jackson-Pratt) to remove leakage has a definite impact on the time it takes to recover. I was out of the hospital in less than 2 weeks and had my single drain removed after 3 weeks. Recovery is completely based upon the skill of the surgeon and what he/she finds once you're opened up.

    There is an experimental surgery that is available in very few locations with the most notable being the University of Minnesota Fairview Hospital. The Total Pancreatectomy with Islet Cell Autotransplant removes the pancreas, smushes it up and turns it into slurry, isolates the insulin producing Beta cells and injects them into the portal vein where they take up residence in the liver. The Beta cells will hopefully continue to produce insulin and will be absorbed into the bloodstream just as if they were still in their original place. The harvesting process can sometimes be very inefficient. There is no way the surgeons can tell you ahead of time if they will be able to harvest the 300,000 islet cells that are necessary to have full insulin function. Also if the nerve root has been damaged by the deterioration of the pancreas the pain may not go away with the pancreas. There is a very real possibility that you could go through this $125,000 operation and be a brittle diabetic who still has intractable pain. That is why most insurance companies still do not cover the procedure.

    There are a few variations of these surgeries such as a distal Pancreatectomy where they remove the tail of the pancreas and leave the head. This is a relatively easy surgery for the surgeon since there are no blood supply issues. It is simply removing diseased or necrotic tissue. Recovery is usually very quick. I don't want anyone to think I am trivializing this surgery. It is still major surgery of the Alimentary and Endocrine Systems of the body. It is just that complications are few and recovery is fast. The outcome is usually that the patient becomes a type 1 diabetic (insulin dependent).

    There is another surgery that is once again pretty major. It is basically opening you up and surgically cutting open the pancreas to widen the end of the ducts and the sphincters so that the pancreas will drain better. The pancreas doesn't like to be fooled with like this and the initial result is severe acute pancreatitis. Once the attack is controlled the flow should be back to what a non afflicted person considers normal. The biggest complications come when the duct forms scar tissue and/or re-stenoses. That makes the first surgery moot and leaves you in the position of needing a Whipple because of the damage done.

    Occasionally, when the pancreas cells rapidly die off in massive numbers they cannot be sloughed out fast enough. Instead of being passed out of the pancreas along with bile and enzymes they collect in what for all extents and purposes is a balloon of tissue called a pseudocyst.Usually these containers of necrotic tissue dissipate on their own. If they do not then surgery is required.

    There are two main types of intervention to pseudocysts. The first is minimally invasive. Guided by an Endoscopic Ultrasound (EUS) they guide a fine needle into the pseudocyst and drain it with a syringe. This is called fine needle aspiration. I have never heard of anyone having a pseudocyst of any large size, say 7 cm or larger, successfully drained by fine needle aspiration.

    Once a pseudocyst starts to get to a point of danger, either from compromising other organs or fear of rupturing, then more drastic methods must be used. A drain is placed surgically to remove the fluid into either the stomach or small intestine. In extremely rare cases it is drained into the pancreas or the large intestine. Regardless it is not fun either way. Pseudocysts are very painful, upsetting and dangerous.

    If it sounds like pancreatic surgery is all desperate measures for desperate people then you probably understand perfectly. From an ERCP to the Whipple or even a complete Pancreatectomy it is all done because we so very desperately want the pain and the nausea and the pain and the diarrhea and oh, yeah, the pain to just stop.

    Hopefully, this gives you a little bit to talk to your surgeon about. I can't help in any way to steer you to one or the other. Each has it's own justification. Just have the doc tell you why or why not on each.



    talk to you soon

    debs

     
    Old 12-07-2007, 06:26 AM   #6
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    Exclamation Re: bullied by 3 Pain management doctors

    Hi Debs,
    the way you have been treated made me so angry and its wrong on so many levels. Especially when you are a short hop from Australia. Getting pain treatment here is a lot less difficult. Maybe you should pack up and move here! As you might know Australia has Special arrangements with New Zealand, in regards to Visa's, residency and as far as I know, special Social Security provisions allowing you to be here but get paid your allowances, disability at by New Zealand.

    LOL. I think a lot of us would live to import Dave. Maybe you could set up as a Jet setting Advocate and Consultant Dave! You would certainly be good at it.

    keep us in the loop Debs. Do you mind if I ask Debs, is your case a workers Comp one? Because having been through the system myself, You have to watch for Crap being pulled at every angle.

     
    Old 12-07-2007, 09:55 AM   #7
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    Re: bullied by 3 Pain management doctors

    Hey Debs, Home injectables could be morphine, dilaudid, demerol or fentanyl although fent has such a short half life, "minutes" it's a por cjhoice for anything other than continuous delivery. It can come in either a vial you draw the dose out yourself or they may come in preloaded sirynges. My friend in Cananda uses preloaded sirynges of morphine to simply cut the ER out of the picture, He gives himself a shot in the thigh and saves hours at the ER. This may or may not be an option for you at some point.

    I still feel that another pump trial is warrented in your case and that swede screwed you and his negatives notes are still folowing you everywhere you go. Once one doc labels you an addict it's tough for other docs to ignore. It does seem absurd that your govt had to get involved because you hapen to be a unique case or one they don't understand completely.

    When talking to the docs, The important thing is making sure that when you complain about pain you also explain it, how it effects your daily life, what your looking for as far as expectations for relief and function. You may never be pain free, but there are some things even a doc will see as reasonable goals. The goal shouldn't be keep med use below some imaginary number, it should be about improving the quality of your life and you need to be specific as far as what you would settle for if you knew that was the best they could do. When you have no alterantive other than meds, they simply have to observe the benefit Vs the negative aspects. If a doc does his job and follows your case, he should be able to see if a treatment plan is helping or hindering you.

    Hang in there, even if it's one hour at a time for right now. Eventually you will find the help you need.
    Take care, David

     
    Old 12-11-2007, 01:10 PM   #8
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    Re: bullied by 3 Pain management doctors

    Hi Dave

    all my hope has gone , I was never given the referral letter and now those 3 bullies have said the meeting was re the pain pump and turning me down. they said they wanted to discuss one letter . when mum came in they wouldnt talk re the pump. now they say as i have headinjury wouldnt be able to look after it

    i was supposed to see guy who puts them in who mu great old pain doc sent letters seeking help for me
    i told him not to talk to anyone but my hope is gone re pump
    he said you are just as sick as last week... that I dont understand
    they never gave me his referral letter the nasty clinic wasnt supposed to be involved
    its too hard
    i dont know what to do
    it was my one dream hope to get some life back
    now i have none

    debs

     
    Old 12-11-2007, 01:18 PM   #9
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    Re: bullied by 3 Pain management doctors

    Quote:
    Originally Posted by Plakat View Post
    Hi Debs,
    the way you have been treated made me so angry and its wrong on so many levels. Especially when you are a short hop from Australia. Getting pain treatment here is a lot less difficult. Maybe you should pack up and move here! As you might know Australia has Special arrangements with New Zealand, in regards to Visa's, residency and as far as I know, special Social Security provisions allowing you to be here but get paid your allowances, disability at by New Zealand.

    LOL. I think a lot of us would live to import Dave. Maybe you could set up as a Jet setting Advocate and Consultant Dave! You would certainly be good at it.

    keep us in the loop Debs. Do you mind if I ask Debs, is your case a workers Comp one? Because having been through the system myself, You have to watch for Crap being pulled at every angle.


    hi thanks
    my head injury is a workers compo and i am paid they are being terrible too

    please let me know what I could get in aussie? i really am not sure, we talked the other night, and said well i am never going to get help here
    i have given up hope
    i just burst out crying

    debs

     
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