No where to turn/ can anyone help?

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violadagamba
Regular Member


Date Joined Apr 2011
Total Posts : 25
   Posted 5/6/2011 10:29 AM (GMT -6)   
I have posted several times so some may know my history.  Eleven major surgeries on my right knee, and failed total knee replacement.  Can no longer work, have been to five top teaching hospitals with doctors saying different things.  Some think revision surgery would help some say NO WAY.
I tried accupuncture on Monday and got only two days relief.  At first I thoughty it might help.
It is about noon and I have already taken 120 mg morphione.  I cannot walk and must use my electric power wheelchair every where I go even in my home.
I did find a possible way of dealing with the pain through a new surgery that is only done by a handful of doctors in the U.S.  I am on a six month wait list for seeing the one doctor who may help me.
I have considered elective amputation and even met with a prosthetic maker to see what my options would be.
I called the acupuncture doctor when the pain went off the chart last night and he said he could see me Monday, but if these treatments only last a few day's at $75 a treatment it will be impossible.
I cannot increase my morphine use, as last year I suffered a brain hemorrhage and was in a 6 week coma after the doctors increased my morphine.
I have tried every option, tems units, patches, methadone, morphine oxycodine and when the pain "winds up" there is no help.
Someone on this site has suggested a pain pump inserted below the skin, however my present pain docs do not think it will do much in my case since the morphine does not seem to help.
I am at the point where amputation and new techniques for  phantom pain may be the only option.
I have spoken to a hand full of people who have gone that route and are actually very happy with the decision.  I know that a leg amputation may seem radical but when you can no longer deal with the pain, have tried virtually every option with zero results what else can you do.
If anyone out there has any ideas I would like to hear from you.  Thanks
 
 
(Hello Viola! I took the liberity of editing a portion of you're post, as there was a forum rule violation located within the body of you're post) (Rule #2: States, there is to be "No discussion of medical marijuana") This is just a friendly reminder! Thanks! SE wink  

Post Edited By Moderator (Screaming Eagle) : 5/6/2011 9:41:10 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16410
   Posted 5/6/2011 11:38 AM (GMT -6)   
Hi Viola, I am the one that asked you if a pain pump had ever been suggested. I also suggested that you go to Medtronics.com and take a look at their website as it is ver----y informative. It has a section where it lists conditions that the pain pump can help and one of them is nerve pain, now whether or not anyone can say it would help no one would know until you did a trial with the pump. I am not a dr or a pharmacist, but I would think with the many different medications used in these pump there is a possibility of something that could be used in a dose you could handle without issues and help the pain at the same time. I don't have one medication in my pump I have 4 different ones. If a person has a good pump dr and a smart one, they know how to mix the compounds together to make a cocktail of sorts for the pump. As it is right now I am on less medication with the pump than what I took orally.

My heart goes out to you, as I hear the desperation in your posts and feel you are up against a wall and feel like no place to run to. The dr that had my pump implanted was a complete idiot and moron when it came to pumps. Well, in a sense so was I because I knew very little about them back then. Because of his lack of knowledge and education on pumps I paid a heavy price for quite some time because my pain was so out of control and all the bull he told me was nothing but lies. It wasn't until he quit pain mgt and went back into anesthesiology that I had a new dr that knew all about these pumps and she has made such a difference in my life. I guess my point being is you must have a dr that really knows about these pumps otherwise you are sunk.

Let me know if you decide to go the website and check out the pumps.
Moderator Chronic Pain Forum

violadagamba
Regular Member


Date Joined Apr 2011
Total Posts : 25
   Posted 5/6/2011 12:09 PM (GMT -6)   
Straydog,
Thanks, I am going to a new pain doctor that has a pharmacist on staff, so maybe between the two of them I can get some info. I have looked at the medtronic site. I was under the impression that the pumps usually put out morphione but in much lower doses since it is sent right to the spinal cord. What I have been told is that with such high does of oral morphine over 320 mg a day with NO relief the chance that any amount of a safe does of morphine would help. If I can hold out I will ask the pharmacist about options for other meds in the pump.

By the way I am not a whimp, while I do not want to give my real name I worked for a number of years in the middle east hostage arena, traveling to Syria, Jordan, Lebanon etc. I also served in the Air Force in Vietnam and was shot in the shoulder. I have endured a great deal of physical and emotional pain, but this is relentless, when it winds up it just never stops. Right now it is in one of those modes. One pain doctor has told me that there is something literally called wind up pain where the nerves become so sensative they produce and transmit pain regardless of movement etc. In my case the knee joint fills up with fluid, and even if it is drained the nerves become so sensative they keep producing pain stimuli, sort of similar to phantom pain post amputation.
It might just get to the point where a decisiuon has to be made as to what qulaity of life I have. I was on a real high for a day or two after acupuncture only to have that fall apart.
I do not frankly kjnow if I can hold out the five months until I cansee the Doctor in boston who does the knee deneveration surgery. I called his office again and in near tears asked if there was any way I could literally camp out there until he could see me. I was told that since he is one of the only doctors that does this surgery it is a very long wait list and most of the patients he sees are as desperate as I am.
The only thing I can do is pray for the stregnth to hold on and not do something stupid to get out of this pain.
Thanks.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 5/6/2011 12:39 PM (GMT -6)   
 
 
          Hello Viola!
 
             My sister tried acupuncture, and she was told that it releases endorphins, and you have to keep up the treatments in order to maintain the relief. So yes!..I think it could be quite expensive in the long run, if this is indeed the case.
 
          While I'm not a Dr, I am at odd's with your Dr's statement about the pain pump, in that he does not think it will help since your getting no relief from the morphine anymore. I was thinking that, in itself is a perfectly good reason to give the pump a try. I believe Stray has said they do a trial period as well, so if it were me, I believe, I would certianlly give it a try, before submitting to drastic measures, such as the aputation of your leg.
 
        Good luck to you, and please do stay in touch here with us! I believe, your's is the first case I have heard of considering amputation to rid one's self of pain. Interesting to say the least, but heart breaking as well.
 
        Please know, that we are sincerely interested in your hope for a solution, and we will by all means support you during this ever so troubling tough time of your's.
 
        SE wink
      
Moderator Chronic Pain Forum

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violadagamba
Regular Member


Date Joined Apr 2011
Total Posts : 25
   Posted 5/6/2011 1:59 PM (GMT -6)   
ScreamingEagle,
Thank you, I think in light of some of the reading I have done today on the "pump" I may revisit it. I am no longer a patient of the one pain management doc who suggested it so I will have to contact him and make a new appointment. I will get on that today if possible but it is not a good day so I may wait until Monday.
Re elective amputation, there is a gentleman who has actually appeared on national television and has a web site who had an elective foot amputation and speaks to people in chronic pain with no alternatives about the option.
He has been on Oprah and CNN.
He is today a well known marathon runner with his prosthetic foot.
His situation was similar I will get his web site and post it but on my next post not now. He had many surgeries on his ankle and foot from an accident as I have had on my knee. He had tried many years of pain management and done the entire drill of pain docs, surgeons etc. etc.
He is very careful in corresponding with people not to push them in any specific direction but does provide names and ways to contact patients that have opted for amputation when all other methods of pain rel;ief have failed.

Apparently while most surgeons will not even consider talking about the option there are some orthopedic surgeons good reputation that realize the limitations they have to deal with chronic and life altering limb pain and do work together with their patients to discuss the options. In military medicine it is not unusual for those who have severe trauma to opt for amputation after successive surgeries that do not releive their pain. So regardless of how radical it seems it is a viable option for those who have no other options available.
Please do not think I would ever advocate for anyone, and even though I have considered the option I am not there yet and may not be able to make that leap from the concept to the action, but I am slowly reducing my options and if I want to ever be able to live a normal life I will have to do something because inaction will not solve the problem.
This pain is not from just one accident or a botched surgery. I have undergone eleven major surgeries each one doing its share of nerve and ligament damage in an effort to correct many problems. At least I know that even the top University doctors I have seen all agree I have a very difficult and rather unique case with all of these surgeries. The scar tissue itself from all these surgeries presents it's own issues as even if I did attempt a revision there is the question of whether the incision would heal properly because of the limitations of normal blood circulation due to the scar tissue. While some of it could be removed there is enough to make incision closure an issue unto itself. I will post the name of the gentleman and his web site I refrenced later if I feel better.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/6/2011 3:00 PM (GMT -6)   
hi Viola

I can see that you're in a real predicament. I'm very sorry that you're in such excruciating pain. I really hope that you're able to find some way of getting your pain more manageable. The ones on here that have the pain pump are having less pain with it. I wish you all the luck I can. You take care. I hope your pain is better by now.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 5/6/2011 7:11 PM (GMT -6)   
Hi Viola
As Stray said, there are many , many options of using many other medications in the pump, and morphine is only one of them. There are also numbing medications that can be added to help ease the neuropathic pain and many others as well.
I understand your desperation, I suffered from RSD for many years and was begging my PM doctor to recommend amputation of my arm, shoulder and hand, fingers etc....what you are talking about is something called Central Pain Syndrome , sometimes also called RSD or CRPS . It is a hypersensitivity of the nerves, skin and sympathetic nervous system that causes any sensation, including movement to cause any sensation to be percieved as pain......it also causes swelling, hypersensitivity to clothing, bedding,etc....
It can be treated , and amputation is NOT the only option, in fact, if it is what I suspect it is, amputation will NOT cure it, it can and will continue despite the removal of the offending area.....I spent 7 years looking into it.....
Anyway, do talk to a knowledgeable doctor about the possibility of a pump trial and about the different medications that can be used...while it is true that much smaller doses are used, that is simply because the medications are delivered directly to the spinal nerves, therefore your body doesn't have to go through the stomach, blood stream and then to the area of pain before the meds work.
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

violadagamba
Regular Member


Date Joined Apr 2011
Total Posts : 25
   Posted 5/7/2011 10:58 AM (GMT -6)   
Fellow members, you have no ideal the places I have been to and the number of doctors I have sen I have gone to the following pain management programs as well as orthopedic centers, John Hopkins Hospital, Dr. Mears, Chairman of their Joint Replacement Program; University of Virginia Hospital, George Washington University, Medical Center pain and orthopedic depts;
University of Pittsburgh, orthopedic and pain mgt programs, Dr. Fue; The world known Anderson Orthopedic Institute, Dr Andy Ehng; The Georgetown University Hospital, and several regional hospitals.

While everyone has their bias, I have been put on every possible pain medication and cocktails of meds. The only reason I have not tried the pump is that several doctors have told me they did not think it would work. It is not that I need to answere to anyone, it is just that I do not want people to think I have not gone through more than most inorder to find way out. As far as phantom pain, the NIH and University Medical Centers In Switzerland have used a combination of perpherial nerve blocks and deneveration to succesfully deal with that issue. In fact there is now a physician at Walter Reed who does nothing but that pocedure to help veterans who have lost limbs deal with phantom pain. The results are very successful.

I am not saying I know it all, but I do not want people whom mI am asking for suggestions from to think I have limited myself to one or two doctors or just morphie. The fentanol patches did no better than morpphine at 10x the price, and gabapenten for neuropathic pain did nothing. As I said the best doctors feel I am dealing with "wind up pain" where the nerves have become so sensative to pain stimuli that they virtually do not turn off. That is why I am on the wait list for the nerve deneveration procedure in Boston, or at least to meet with the doctor who does that procedure to see if it might be woth a try. Also since I suffered a massive brain hemorrhage from the high amount of opiates I was taking I am limited by the neurosurgeon to they type and amount of opiates I can take. So I am really between a rock and a hard place.
I am quite sure if I increased my morphine use to 400 mg + a day which many opiate dependent patients can do, I would get some relief but due to the hemorrhage I cannot go over 300mg a day which fro an opiate dependent patient is not all that high a dose.
Thanks for understanding/ God Speed I am still open toi ideas, as I just recently learned of the deneveration procedure, so if you have any ideas please let me know I am not saying I know it all

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16410
   Posted 5/7/2011 11:45 AM (GMT -6)   
Viola, I am getting the feeling that you are offended by us here at the forum and one thing I would like for you to understand is none of us are here to pass judgment on anyone. It is not a matter of how many drs have been seen or the most seen or anything like that. This board is here to offer support and an ear to listen. So, if we have offended you, please know it was not intentional. Everyone deals with CP in their own way because it is such an individualized thing. I noticed someone new named TimeStyle posted here and I am sure it was probably a spammer, they tend to sneak in late at night and this one was on a couple of the other forums being edited. We try to catch them as quick as we can.

I suggested looking at the pump only because I know it is used for different nerve pain, whether its something for you remains to be seen. I know you keep talking about high doses of medications but the medications used in the pump is much stronger than oral medication because it is in concentrated form. A trial is done with a temporary pump and you know right then whether it is going to help or not. Morphine is not the only drug used in these pumps, there is many different types of combination of drugs that can be used. My dr was telling me one day when we were discussing medications used, she has a patient with 7 different medications in his pump, but she said that is what is needed to give him lower pain and quality life.

The denervation process does sound promising for many. It a shame there is such a long waiting list to be seen. Anyway, I wish you the best in whatever process works the best for you.
Moderator Chronic Pain Forum

violadagamba
Regular Member


Date Joined Apr 2011
Total Posts : 25
   Posted 5/7/2011 3:37 PM (GMT -6)   
straydog,
in no way am i offended at all. i know many people XXXXX XXX moan about pain and do little to help themselves, the only reason i wanted to list some of the steps i have taken is so no one will thank all i do is sit and wish this mess away. it is far from that.

in the same way that the deneveration surgery came up in an off handed remark from a doctor, i know that people from all over the world, and all experiences with pain go to this site, so i am throwing my situation up in the hope that someone who has had a similar life altering experience may have a positive experience with something that i am not aware of.

as i said i am not an expert at this, as far as the pump goes, i fully understand that there are trials for it before the actual implant, as a matter of fact at least when it was first brought to my attention Medicare did require a complete psychiatric work up before implantation due to the cost of the procedure and also the high cost of removal if a patient later opted out. that may have changed.

there were actually two reasons i did not continue to move to the trials, first was in speaking to people who had the implant most, not all but most who I spoke to told me they did feel the implant in them, also due to the placement in the lower abdomin or back coupled with the fact that at the time as a performing musician I sat for extended time frames in tight orchestra pits i was led to believe that in the position i need to hold myself to mproperly control my cello the pump would be felt and could be a major problem in my lower stomach or back.

When one sits with a cello they must properly position both their back and legs and are limited in the amount of sitting position options they have, my docs were concerned about that, also in the practice i was seeing at the time only one of the three doctors felt it would be useful. they did mention the trial and maybe i should have gone that route but i am going to revisit it.


also my neuro surgeon did warn me just recently about some drawbacks with the pump, as i mentioned i suffered a near fatal brain hemorrhage due to the high level of opiates i was using as per doctors instructiuons. there have been documented problems with the catheter leading from the pump to the spine that have caused improper doses of medication to be delivered, in fact the internet ran many such recall notices as recently as 2008 on this issue.

According to the most recent data medtronic has still not solved the problem and my doctors are concerned about that and the fact that the pumps have been know to be responsible for overdoses of medicatoion. In the highly concintrated doses that are used in the pumps there is little room for error.
All i can do is listen to the experts, if i did not have to deal with the issue of the brain hemorrhage the doctors may have been more up beat about the pump.


I am very happy that you have found relief form the device, and i know you are trying to help, but it is not a universal fix for all chronic pain and there are many medically sound reasons that it is used infrequently, i am however in the process of revisiting the issue and have made an appointment to visit with the pain physician who first suggested it and his partner who disagreed. I am at the point I am in a holding pattern until i can get to Boston in the fall so i will use every possible lead until i get there.

i am not willing to just sit and wait as the situation i am in just cannot continue, i looked over the pain log i have been asked by my doc's to keep and my average so called score on a 1 through 10 was an 8 for feb/march/april.

i am also aware that the pump is not limited to simply dispensing morphine, but as i mentioned i have been through most all of the natural and synthetic opiates, plus a wide range of drugs designed specifically for neuropathic pain. If it were not for the limitations i am on regarding the maximum level of morphine or methadone i can take i could gain better relief from a regiment of four hundred plus mg morphine daily, but that is a no go due to the brain bleed.

There is little to be gained from restating the situation, and i am thankful for your conern and am open to any ideas that may help and have begun to revisit the medtronic option even with its drawbacks.
May I ask the purpose of the information you passed on regarding an unknown post, i could not connect it to my situation, maybe i missed something, i am remember on drugs.??




(Dear member, I took the liberty to edit you're reply for ease of reading. Please take note and keep you're paragraphs to about five lines or so.) (I also edited you're reply for language abuse. This is a family site and we at times have either members and or visitor's who are minor's) This is a friendly reminder. Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 5/9/2011 3:12:31 AM (GMT-6)


purplereading
Regular Member


Date Joined Nov 2010
Total Posts : 108
   Posted 5/9/2011 12:08 AM (GMT -6)   
Hi, I am an RN, who has undergone more surgeries than I can count on a left knee, that I had a TKR on, that within a year had worn down the spacer to less than1/8 of normal. I , unfortunately, am a tremendous maker o scar tissue, that has caused me many additional problems, ontop of which, I form excessive amount of bloody fluid in my knee, that surprises the Ortho when they try to inject the fluid forces out.

Due to the fluid abundance, there is tremendous pain on the nerves, that, like yours are hyperexcited. I did have a revision for PAIN RELIEF, but to no avail, and in fact, due to the incompetence of my surgeon, and the fact that he did not put in a knee prosthesis that was correct for my situation in the first place. Now that I had the revision I have the extended prosthesis that has rods halfway up my thigh and down my calf.

It usually takes two xray films to get a pic of the entire knee. I have had constant, unrelenting pain since these procedures. Also, the massive swelling begins mid thigh and continues to half way down my calf. The swelling prevents me from wearing jeans or tight fitting pants as it swells too massively, partially down to my foot, often increasing the size of shoe I need. The revision caused all the swelling, which has caused all the increased pain in addition to the already existing pain.

The nerventrapment from the scar tissue adds to it. There is a knee site, that I did not know if you are familiar with : kneeguru.co.uk, there are people from all over the world on there, There is a topic under the scar tissue, that I will go to now, who lists a neuro dr. who someone travels from KC to see who does alot of nerve work, as Pam has such constant nerve pain. She would be great for you to contact. Let me check it out and will get back on here to post the info.




(Dear member, I have edited your reply for ease of reading. Please take note, and do the same in future post or replies) Thanks! SE

Post Edited By Moderator (Screaming Eagle) : 5/9/2011 3:08:04 AM (GMT-6)


purplereading
Regular Member


Date Joined Nov 2010
Total Posts : 108
   Posted 5/9/2011 12:27 AM (GMT -6)   
Hi, go kneeguru.co.uk I cannot remember if you have to join or not click on Bulletin board, and then go to Rehab, and under that subtopic:Soft Tissue Healing Problems : Arthrofibrosis Under that topic : open debridement and proximal Z Plasty by poster MISSMYKNEE .

The first several pages are about a surgery she had, but towards the the end she starts seeing Dr. Lee Dellon, World class peripheral nerve surgeon in Baltimore. He treats her neuromas that have caused her constant unrelenting pain, that is being managed by mutliple meds. She has had neurolysis, nerve resection, denervation, etc.

She lists his website as www. dellon.com, I believe Pam said she emailed him and received an answer in less than 24 hours. Also, I think he is a cash only dr, and you have to pay up front, but she got her insurance to reimburse all but 20%. She had multiple surgical procedures, and has a pain management dr. in KC. I hope this can be of some help to you, esp. with the nerve issues. I do not believe it took Pam very long to get into Dr. Dellon. GOOD LUCK< T

Post Edited By Moderator (Screaming Eagle) : 5/9/2011 3:09:21 AM (GMT-6)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/9/2011 1:05 AM (GMT -6)   
Viola....
 
I just read through your posts here.... I have major focus and tracking issues so it took me a bit to make it through - so if I repeat anything that's already been mentioned, please forgive me.
 
I can hear the desperation in your posts.  I've felt that same feeling concerning my own health issues - so I definitely feel for you, and I'm sorry for all you are going through.  I really am.
 
I've been up/down and around the block w/ all the pain meds, too.  At my highest - I was taking 480mg of morphine (240mg in the morning and at night) plus using breakthrough meds.  Luckily, through a series of events, I'm way down from that number and finding success w/ a combo of drugs.
 
I have had the pump trial and I would highly, highly recommend it in your case.  At least you'll be able to say it worked or didn't work.  For me, we didn't even try morphine since it takes so much to work for me.  We used dilaudid.  Keep in mind - opiods do work differently intrathecally than they do orally.  For me, even though I had a relatively successful pump trial - I'm holding off for as long as possible - because I'm only 37 years old.... but I'm pretty confident I'll end up w/ one at some point.
 
Straydog is so right - you have to find a doctor that knows what they are doing in regards to pain pumps.  That's a major key for it to be success.
 
Anyway, again, I'm sorry if I covered info that was already said - it was just so much for my brain to handle :)  But I wanted to reach out to you and tell you that I'm truly sorry you are suffering so much.  I hope you can find something that works for you; and I encourage you to keep posting here for support.
 
In friendship - Tina

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 5/9/2011 8:14 AM (GMT -6)   
Hi Viola, and a belated welcome from me.

Some things in your posts have struck a chord with me as they did with Sandi - have your doctors ever considered Complex Regional Pain Syndrome (CRPS...formerly known as Reflex Sympathetic Dystrophy) as a cause of your ongoing pain? The chronic sensitisation and wind up is a central feature of CRPS. The pain at its worst... is almost indescribable, even to others who know terrible pain far too well. As well as the pain, CRPS has a few characteristic physical signs - swelling, changes in skin colour and temperature, changes in hair and nail growth, and several other things.

Another pain management option that nobody here has mentioned - whether you are a candidate or not I don't know - is spinal cord stimulation. Obviously some of your pain must come from the joint itself, but if a large part is nerve related then maybe SCS is an option? I'd also agree with what has already been said about not discounting the pain pumps.

Hoping you can find something.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.
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