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angelmate63 11-22-2009 04:46 PM

What can i do now? i,m desperate!
For almost 20yrs now i have been in severe acute chronic pain as a result of a fall down my stairs, i live with constant renal problems and i only have the one kidney, sadly tho i have frequent infection,s and i do not have a bladder, to top it all off my fall was as a result of a kidney infection which made me pass out, when i came to my clavical was fractured and i had already had chronic scatica, thanks to the fall it triggered my scatica and i also have arthritis in my neck, when i first fell i was told in the hospital that i had a simple clavical fracture, 4 week,s later i was still in alot of pain [ i have been told i have a very high pain threshold] i was seen by a very rude surgeon who made me feel my pain was in my head, well i was immediatly admitted and operated on the following day to basically put a few screws in, apparently when i was opened up they found that my simple fracture was in fact a shattered clavicle, when i woke up i had the rude doctor telling me he was sorry that they,d had to spend several hours to remove bone fragments from my chest.
Well that was almost 20yrs ago now i have to take morphine in order to just get a bit oif respite from this hell i,m in, sadly my pain doc has let me down very badly,for over 6yrs i have been on morphine thanks to him and i have to admit had he not put me on morphine i would have taken my own life in sheer desperation, well three years ago my pain doc told me, i think you would be alot better off with a pump which would be inserted into my back with a cathetier which would give me my pain meds through to my spinel fluid,[ i must also state i in between all of this i tried to help myself by seeing reflexlogist to faith healers spending money i could ill afford in my quest to ease my pain, as the pain is in my shoulder with limited mobility in that arm , also due to the chronic scatica i can no loonger walk without a stick, i have tried the patches and all sorts of other meds!] so to be told there may be other hope i jumped at the chance he then told me, i cannot help you but i,m gonna send you to a collegue of mine who does this kind of surgery, so i was sent to a place over 150 mies away where i saw this pain management surgeon who told me you are an ideal candidate for this pumo and i am willing to do this surgery on you as long as someone local to you would be willing to do the refill,s, i told him that my pain doc had told me to tell him that if there was anything he could do i was to tell the surgeon to contact him, [ my pain doc had actually trained this surgeon] i came away so full of hope that maybe here was some hope for this hell i live with 24/7 7days a week, only to be told by my pain consultant sorry i can,t help you, in that one sentence he more or less gave me a kick in the teeth, the one doc who i,d learnt to trust let me down,i contacted our local newspaper who ran a story on my hell but still no one is prepared to help me! i live in the u.k and no health insurance company will take me on because of my kidney problems so i am sat here yet again crying my heart and very fed up with this pain, i have written to the surgeon as well as sending him the newspaper clipping, an old man who lives near me has also written a letter to this surgeon in the hope he can help me,my marriage of 22yrs has broken down because my husband got fed up with me being so misrable [yes i know i,m depressed it has been explained to me that it,s due to my pain, so i am also on anti-depressants] before all this started i led a full and active life even with my chronic kidney problems i still went out to work and i enjoyed my playtimes with my son, as his father was frequently away with the armed services, we still had many many good nights out until this happened to me,on top of all of this i have just had a call back to the hospital as it looks like my breast cancer is back i had a lumpectomy in april followed by 8wks radiotheraphy , i am so desperate now i don,t know who to turn to or what to do? do i ask too much? all i want is to be able to cope with this hell, i would give anything just to have some relief from this pain, now i no longer trust doctors as i was told many times by the urology doc that my frequent infections were in my head until i passed out and they found i had a dead kidney which was to be removed immediatly, as a child my father was told i was attention seeking so everytime i wet myself i git a smack of my dad they then found out when i was 27yrs that i had a non functioning bladder, two years ago my bladder was removed, so i,m sorry if this is a long winded story but i truely don,t know who to turn to anymore so im asking can anyone help me with any advice? i have written so many letters and i have done everything asked of me why then can,t i get this pump, i am aware the pum may not work but surely i could at least be given a chance? i,m just so dammed desperate now what can i do now? i would welcome any advice right now

katlovesdogs 11-23-2009 01:36 PM

Re: What can i do now? i,m desperate!
WOW.... I take it you don't have any insurance. Does your country have teaching hospitals that you could go to for treatment ? They may do one problem area at a time but it is a place to start. They may even have anethesiologists that do Pain Management. You certainly have had a lot of medical issues so you s=have a large medical file to support your claim for medication. Are you looking for the Pain Pump itself or just relief from your pain itself ?

angelmate63 11-24-2009 04:55 AM

Re: What can i do now? i,m desperate!
In answer to your question,s i,m already under a pain management team and i have been to several teaching hospital,s, believe me i have tried all there is to try here,most of our medical health is free they call it the national health service [i live in the u.k] i have tried to get private health insurance again no one is prepared to insure me due to my many long term health issues, i have tried all there is in my quest to get some real relief from this living hell, i have spent money i could ill afford in the hope that this or that treatment may actually work, i am on M.S.T 100mg 3x day plus oralmorph 25ml,s supposed to be for breakthrough pain however i have to have it every 4hrs then i am on anti-depressants and sleeping tablets and antibiotic,s for the frequent infections i have in my only kidney.
I have been to many teaching hospital,s one called "Guy,s hospital" which is a pretty good hospital, also the pain management consultant who sent me to his collegue in essex would you believe trained the doc he sent me too! i have scoured the internet and contacted the pain society in the hope they could help me, they very kindy sent me the address,s of several pain management team,s who work in this country, the nearest hospital that can help me would you believe is the hospital where i was orginally sent to for the pump!, i guess what is really annoying is the fact that i have to wait until the local area health authority decide wether or not they are prepared to fund this pump for me, i have to say i am so desperate for some respite from this pain i,ll do anything!! i have tried acupuncture to chiropracters who would you believe gave me a refund telling me i,m sorry i can,t hep you anymore, so i am praying that the doctor who i was sent to will actually call me back and try me with this pump, i,ve quite frankly had enough and i no longer trust any doctors, so my friend there you have it i am more than a little frustrated

brianpain33 12-16-2009 08:25 PM

Re: What can i do now? i,m desperate!
I can only imagine the frustation and desperation that you are in. I am only 35 years old but my pain is managed fairly well with my medication regiment. however, when it was not I was considering the pain pump. If I were you I would contact all of the different manufacturers of the pain pump (including Medtronic) and ask if they have any type of financial assistance or could help you in any possible way. That is about the only thing that I could think of. Keep coming here and venting and please don't ever give up. I suffer from depression to and have thought about ending my life many times but I finally got to a place where my pain is very manageable. I pray that you find someone that could donate the money or a surgeon that would donate his time and expertise to help you.


angelmate63 12-17-2009 10:58 AM

Re: What can i do now? i,m desperate!
To say i,m upset right now would be a very big understatement! i have just recieved a letter from the surgeon who originally saw me with regards to the pain pump and he has now done a complete u-turn, he now tell,s me via this letter that he now doesn,t think this pump will help me, to be honest i have had enough now i feel very very let down by the very person i trusted he has let me down just like all the other doctor,s! last night my pain was so bad i went to yet another drug dealer who gave me methadone it cost me 35.00 and yes i,m aware it could,ve killed me but what,s the point in asking my g.p to help me? what,s the point in seeing my pain management doctor? all they,ve ever done is let me down! and lie to me.
I am very down now and see no ponit in trying anymore,why do i always fall for the crap these doctors tell me? why do i believe them when they say they want to help me? WHY? i cannot take anymore i haven,t eaten now for a week and to be honest i have no insentive to eat why? i would rather be dead than spend the rest of my life like this, my son now has the same renal problem,s as me and like he said, "Why should i go to the doctor? all he does is lie just like all the other,s!" i shouldn,t have to see my own mother in pain 24/7,7 days a week! all doctor,s do is lie! and that was my son! my kidney problems have got worse and they want me to see the renal team, why? i also have a lump which i,m not going to bother about, i know it sounds like i,m thowing a tantrum, how would you feel? how would you like to be given hope only for that hope to be snatched away from you? i can,t do anything anymore theres no point

Shoreline 12-17-2009 01:22 PM

Re: What can i do now? i,m desperate!
Hi Angel, Sorry to hear your story. I'm sure things are very different in many ways as far as healthcare in the UK. I've had a pump since 2003 for 3 failed back surgeries and a bunch of broken hardware and other isues from a spinal injury. In fact their goping to replace the old one this juse with the new improved model.

The pump helps but it's really not a miracle tool. The only real difference between meds delivered by pump and orals is the the way they effect cognative function. Given equal doses of orals or intrathecal meds to provide the same relief my head is much clearer with a pump. I still have most of the other side efects of opiates and a pump can certainly be increased to the point it's severely impairing just like people could do with orals. A clearer head and equal relief is what I get from a pump. If I take more then enough to just reduce my pain 50% I wouldn't feel safe driving, I would be forgetful, The urinary retention would be unbearable and I would fall asleep if I wasn't actively engaged in something. Anything more than making things tolerable and I feel like a zombie and drugged.

That's really the hard part to accept, when to say when. When is enough relief enough? At what point does managing your pain hinder more than it helps you function? It honestly sounds like your expectations for a pump are so high I don't know if you ever would have been happy with a pump. 50% reduction for me means I live in the 5-6 range on good days but still hit those 8's and 9's where everything feels like a plecebo. Did you do the psych testing or see a PM psychologist? Have you done a trial, what kind, what med and did it help better than your orals? I did two trials after the psych cleared me because the first in patiient trial failed miserably when the cath caused a spinal fluid leak and spinal headache.

Someone may be a good candidate on paper but untill tested in all ways, at best any statement a doc makes as far as expected response to a new dose of a new med delivered entirely differently still has to be put to the test. Was he going to use a 300:1 or 100:1 conversion, what med was going to be the miracle drug that you can't get in another form and can't tolerate now? See how you might have been getting ahead of yourself. I certainly understand the desperation of unmanaged pain, But even with a pump, It was like totally starting over. It took 6 months and 16 adjustments to reach a a level that I could live with. Complete or even 75% relief was never mentioned and your post sounds like that's what someone has taken from you.

I would be more than happy to answer any question, but i would also wonder if there are docs outside of the present loop of docs that could provide the service. They are used in hospice care and more and more patients are choosing to spend their remianing days at home with the newer technology and much more potent meds available. So who is managing hospice patients in your area? Who does the home care for the dying in your area. How do you know they won't manage you if you had one? With the new pumps, once properly titrated you can go 4 times a year between refills which makes a 3-4hour drive reasonable to be refilled if the benefit is worth it.
Good luck, Dave

About a year ago, my docs office decided they were loosing too much money doing the refills at the clinic. Home health agencies and satalites facilities that provide IV Infusion service are becaoming more and more common in the US. In the old days if you had an Infection that required IV antibiotics they would have hospitilized someone for days. Now they have the option of Home health or satalite facilities where people aren't exposed to every germ in a hospital and have proven to recover quicker outside of the hospital setting.

There was a member here last year that had their pump removed for that very reason. Their doc stopped performing the refills because he was loosing money and she couldn't find an alternative way to have it managed. I guess they didn't have a good home health care agency in her area.

A home healthcare nurse now does my refills and adjustements. I still see my doc, If I want a change in dose i would ask him and he would relay the message to adjust the dose to the HHC agency and the nurse that swings by is in and out in 10 minutes or less.

Is home health care an option for the mangament of pumps where you live? It may be something to look into. But it's a big jump from learning about a pump to actually having one implanted. The manufacturer recomends a written psych eval "the MMPI", and an interview with a PhD that specializes in PM, then the trials begin and a succesful trial and a succesful pump is one that relieves 50% of your pain, 100% is never the goal and if somone is obtaining that they shouldn't have been given a pump.

The manufacturer also recomends using plecebos during the trials because the power of the mind is so great. Yes I went through every step, I even did a second trial because the first one failed because it caused a huge spinal fluid leak. I spent so much time barfing I couldn't say it helped at all.

I've met several people that were denied pumps based on reporting pain relief from saline. if you expect relief you may get it. I'm sorry you feel negelected by the medical community for a device, but unless you have had a sucesful trial you really don't know if it would potentially be a better way to go. You may not have been approved for testing if the psychs thought you weren't a good candidate do to your very high expectations of the device. If the doc knows your not going to be satisfied, it's unlikely he is going to want to implant one other than to collect a surgical fee. The manufacturers have guidelines to follow for a reason and it's simply not possible to see you one time, say your a perfect candidate and schedule an implant.

Please do some reading on the forum. I would bet their are more post from people unhappy with their pump than their are happy posts. Not that the odds are against a success when properly screened and used for the right type of pain but people happy with it aren't really posting about it. It's ust part of life and living with CP. It's highly unlikley you would be happy with the reduction in nerve pain like sciatica. Nerve pain is very different and responds very different to opiates. The spinal cord stim is more suited to neuropothy if you have a disc bulging and compressing a nerve, not that surgery might not be the better answer but Sciatica is just a catch all phrase for any type of rear/leg neuropothy.

It's not your local docs fault he isn't trained to do everything in medicine, very few PM docs in the US manage pumps, the only doc that makes money on the pump is the implant surgeon. I don't think you were aware of the process involved or what the expected prognosis with pumps actually is. Yes they can provide equal or better relief with less side effects for some people, but if you never got to the trial phase, you don't know if your one of those people to be so outraged.

Are side effects preventing you from increasing an oral dose now? A doc that you have to fight for an oral increase is going to have the same mind set when it comes to Intrathecal increases. I know one woman that changed docs 5 times before finding a doc willing to go above X number of mgs toa day for her to obtain relief. Some people have pumps put in and never get relief, some have hardware failure, cath leaks, spinal fluid leaks, pocket infections etc etc. Pumps were never presented to me as a miracle that provide complete relief to everyone. They simply deliver meds in a different way.

Good luck and continue to look at alternatives, Pumps and opiates are just one option and neither cure anything, theey are simply one of many tools at a PM docs disposal.

Take care, Dave

zuzu23 12-18-2009 08:02 AM

Re: What can i do now? i,m desperate!
I agree with Shoreline. Once again, he is knowledgeable and I feel pretty accurate with the information presented. I myself have a referral just being processed for a pain pump doctor who is 6 hours away, and I am grateful. As I told my PM doc yesterday, I am grateful & will try anything he suggests. Pill-seeking behavior is a legitimate conclusion when a patient is inflexible & always demands certain medicines.

I would say try the practitioners who treat the dying ONLY if you have not demanded certain medications from your PM doc first. Let him know your concerns, but reinforce MORE strongly that you WILL try any medication, and dose, FIRST.

I was concerned to read that your son has very similar problems, and he now has a very close-minded negative opinion of doctors because of you. You have to stop and think- Do I want my son being closed off to treatments like this? What if as he gets older, he is in the exact same boat as you are now, or worse, how will what I am allowing him to see now impact his attitude towards treatment? Could this be jeopardizing my sons well-being? It's obvious you were a great mom, and still are & love him to death, so I know you won't be offended with what one mother says to another. Just as all great parents do, put your son's problems, medical & otherwise, before yours FIRST, every time, and he will grow up feeling very much secure & loved & have a good foundation with which to begin his adult life.

I have very similar problems as yours, and have 2 boys [13 & 6] and I watch very closely and censor what they see & hear coming out of my mouth in regards to my health hell. Yes, we're probably worse off than those dying in a lot of ways, but we MUST put the kids first, bar none. For my oldest son, although we've a stronger bond than anyone else I've meant, this means him living with my parents & not seeing me everyday. For my littlest son, it may very well come to this as well as he hits 9 or 10 years old. It's very unselfish to know when to admit that maybe the best home environment is not your own home, and work to find a place where the bond isn't broken, but he's not being torn up but watching his mother suffer endlessly. It's just far too much stress on these kids nowadays!

I wish you luck. I would also seriously try not to switch pm doctors, as it sounds like you haven't scraped the surface yet as far as combinations of meds to get you by, always hoping in the back of your mind that there may very well be something new & upcoming that may be even better than your current treatment. If you switch prematurely, you will develop a very bad reputation, and then doctors lose their accountability with you. Also, pls try whenever humanely possible to take care of YOU. Whatever it means for the individual you, I do not know. Every day, make sure to include prayer, self-care, and time for yourself- totally selfish time just for you, doing anything you like. Make yourself a priority. No one else will!! :) And keep following up with the psychiatrist for your depression, as I do mine. Get as long of appointments as they book, try for an hour once a month. Talk to him about more than how the medicine is working & whether you are sleeping.

Take care

angelmate63 12-19-2009 01:49 PM

Re: What can i do now? i,m desperate!
Hey there,
thank you for your message, as for my son, i have told him many times that just because i have had problem,s with doctors doesn,t mean that they are all bad, and believe me i have tried to let him no that just because i have had rough time,that it,s not fair to tar every doc with the same brush, he told me, all my life i have had problems with my ear,s and now my kidneys are playing up but i do not like doctor,s and quite frankly mum, i hate em and i don,t care as i,d rather try alternative treatment,s before i see any doctor,s! and stop trying to get me to see a doctor cuz their all liar,s no matter how many times i have told him that not all doctors are bad, he will not listen, i try not to let him see me so down,he has witnessed 1st hand just what these doctor,s have said and just doesan,t trust them, even his father hates the doctor,s, i believe his dad hasen,t helped in that department, he just won,t listen, as for me? well i feel i no longer have any hope i am sick and tired of being messed about by these doctor,s, i also recieved a letter from myy pain doc asking if i,d like to see him in the new year to disguss what has happened but i really haven,t got the energy to try anymore i just want them all to leave me alone now, my son now lives with his fiancee so i pray she,ll make him see the doctor, sorry i,m just fed up now i really can,t go on like this anymore, thank you again for getting back to me with regards to my thread take care godbless angel x

angelmate63 12-19-2009 02:07 PM

Re: What can i do now? i,m desperate!
Thank you for your reply to my thread, with referance to the pump, i had learnt all about it from my pain management team, it was my pain doctor who told me this pump would work for me, as everything i have done [i.e what they have asked me to do, i,ve done] as have stated before i am under no illusion,s that this is the be all and end all, i am also aware that this pump may not work, but after being asked to do so many things i have done them, but my pain doctor was the one who gave me hope and yes i had hoped this would help me, again i have tried other aternative treatment,s spending money i couldn,t afford but i was so desperate and when your desperate you,ll do anything,now i feel very let down,when i explained it to my parents, my father cried and told me, "I can,t loose another daughter,[i lost a sister when she was 14yrs] i just feel so badly let down now i,m so very tired and fed up with all of it,i even rang the surgeon who told me i was a prime candidate for the pump,he still admit,s that in his medical opinion i would benefit from the pump, when i asked why he had turned his back on me? he admitted that it is due to funding and the distance i would have to travel from my home to his clinic for the pump refill,s, i thanked him and he told me "don,t give up" i told him too late i have,again thank you for your reply and i have taken on board what you have said take care godbless maria x

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