OK, thanks. I took a look on the nerve pain link, lots of good info. Nothing better than hearing from others with a similar issue and hearing what worked and what didn't.
Exactly pindy686! I find that the best info is from others in the same situation, not the doctors.
Sad to say, but it's true. The medical system worked great for us when we had an emergency, like sepsis from a pressure sore or kidney infection. They were amazing, really and saved my wife's life. But when it comes to disease processes, like cancer, they can have real problems. The medical system runs like a big business assembly line where individual needs are run over. Even though we were able to cure my wife's cancer using a scientifically derived formula at home, the doctors botched everything badly and crippled her with an unneeded operation that was badly done. Then they abandoned us out of fear of a law suit, evidently.
Sad to say, but it's true. The medical system worked great for us when we had an emergency, like sepsis from a pressure sore or kidney infection. They were amazing, really and saved my wife's life. But when it comes to disease processes, like cancer, they can have real problems. The medical system runs like a big business assembly line where individual needs are run over. Even though we were able to cure my wife's cancer using a scientifically derived formula at home, the doctors botched everything badly and crippled her with an unneeded operation that was badly done. Then they abandoned us out of fear of a law suit, evidently.
That's terrible, I'm really sorry to hear that! Thankfully the cancer is cured. That must have all been a big nightmare!
It certainly has been a bizarre ride for the last five years. The first few seemed to be one catastrophe after another. Now maybe we are out the other side. The leftovers are her spinal cord damage, leaving her almost a full paraplegic. Half of that or more is from the botched operation. She was in a dance class a month before the operation. They said they needed to operate to "protect" her spinal cord function! We only found out a couple of years later the tumor was 905 gone and the operation wasn't even needed. They misread the MRI's as well, because radiologists have to rush through over a hundred a day and they were not familiar with her rare cancer. They are also afraid to contradict colleagues and will just more or less copy the report before them if they don't know what is going on. Since shrinking these tumors was "impossible" by their standards, to report such a thing on the MRI report would have looked bad, just like a pilot that doesn't want to report a "UFO". So they fudged it. It wasn't till we found a true experienced expert to confirm the treatment had worked that we realized what had happened.
It certainly has been a bizarre ride for the last five years. The first few seemed to be one catastrophe after another. Now maybe we are out the other side. The leftovers are her spinal cord damage, leaving her almost a full paraplegic. Half of that or more is from the botched operation. She was in a dance class a month before the operation. They said they needed to operate to "protect" her spinal cord function! We only found out a couple of years later the tumor was 905 gone and the operation wasn't even needed. They misread the MRI's as well, because radiologists have to rush through over a hundred a day and they were not familiar with her rare cancer. They are also afraid to contradict colleagues and will just more or less copy the report before them if they don't know what is going on. Since shrinking these tumors was "impossible" by their standards, to report such a thing on the MRI report would have looked bad, just like a pilot that doesn't want to report a "UFO". So they fudged it. It wasn't till we found a true experienced expert to confirm the treatment had worked that we realized what had happened.
This is really a heartbreaking story, and one that is heard all too often. Very glad to hear that cancer is no longer a concern.
Wow you and wife have definitely gone through a lot pindy686 but you two have been strong and have been overcoming the obstacles thrown at you. Just keep up the amazing work and I'm sure things will start getting better.
pindy686,do you know how to "tag" other members? I just happened to check this thread under "new posts", but if you click on little boxes (to right of "simple tagging" when you compose a post), you can get the attention of a particular member that you want to read your post.
It will increase depression, health, intestinal complications and in general is a major blockage in one's progress.
Methadone is designed to help with nerve pain and has a lot fewer side effects. It is much better for reducing burning sensations from nerve damage. It c is also stronger in dose and can bet used in much smaller quantity than morphine.
Alphalapoic acid is natural and will also reduce nerve pain once you find the best dosage.
OK, just checked back in, thanks again to all for the tips and advice. I will check out the link and look into Methadone. She currently takes 15 mg every day for the nerve pain. She tried the Alphalipoic acid and it increased her tingling, I think it must have decreased the chronic inflammation she has but we have seen that when inflammation is decreased, her pain goes up! Like a cold foot being warmed up after being in the snow. First it's numb, then it really hurts, then tingles, then comes back to normal or something similar. So the Alpha lipoic is probably really good for the nerves...perhaps a higher dose would help or might it just take time for the increased sensation to tone down? Everyone on this board is much more informative (and caring) than any of the doctors we've been to. Thanks again to all!
Sorry to butt in but your tagging is perfect pindy686. I used to be on morphine and it spaced me out and it didnt help with the pain greatly.
Doctors just dont seem to get the perspective right sometimes and need us to direct them. My doctors admit they arent specialized enough so for most things i just contact my spinal unit.
Lαrα, please "butt in" anytime! Thanks for the tip. I will have to look into the methadone. I have also heard that percocet with ibuprofen is a good pain killer but does it work for neuropathic pain? Is methadone available in extended release? The other issue, Lara, we don't have a good "spinal unit" around. We live in the boonies and finding a good neurologist / spinal cord injury expert has been impossible. Even after we went a couple of hours over to Seattle and saw the head of their spinal cord injury center, she wasn't very helpful at all and then she got pregnant and went on leave of absence anyway. As a retired RN, I am stunned at the lack of responsibility for their patients that I see across the board these days. We needed experienced, positive, aggressive intervention and education and creative problem solving and we have NEVER been able to find it in 5 years. The doctors / institutions take a tremendous amount of time and money and half the time they made things much much worse, the other half they took our money and did almost nothing. I do all our own research now and get much better results from that and the people here are far, far more knowledgeable than any doctors I have run across.
Its such a shame there isnt a spinal unit around you, is there phone contact you can have with one? The medication i use that i find effective was advised by my unit and its paracetamol and ibrufen taken at 2 hour intervals between the two but the ibrufen is every 6 hours and paracetamol is every 4 (for me)
Paracetamol probably has a different trade name in the USA ( Im in the UK) The nerve pain thread we have does have some ideas for pain relief but maybe you could ask your doctor for a referral to a pain specialist?
Traditional Treatments
We are equipped with an intricate network to detect pain. Several miles of nerves send messages to the brain indicating when an injury is about to happen or when it has already happened. The brain receives nerve impulses conveying the painful messages.
Nerve pain is different from tissue injury pain, such as a sprain or a more severe damage. If the nervous system that conveys information about pain to the brain is itself damaged, as in the peripheral neuropathies such as GBS, CIDP and "my" Paraproteinaemic Neuropathy, then the message will be flawed. A specific type of pain results, neuropathic pain.
Several other disorders also affect the peripheral nervous system. In all of them there are disorganised, irregular firing patterns. Some changes result in increased firing and in others reduced firing. In this nerve injury pain, sensory nerve fibres increase their excitability and the spinal cord amplifies incoming painful messages. Drugs to ameliorate pain, by reducing the abnormal excitability, are available.
In the treatment of neuropathic pain the main goal is to reduce the pain as much as possible and help the patient to improve coping with any remaining pain.Nerve pain does not typically respond well to available painkillers. It can be very difficult to treat. There are drugs with pain killing abilities but to date there are no true nerve painkillers on the market. Neither are there any drugs that are specific for neuropathic pain. So each form of pain demands its' own unique form of treatment. Some drugs can be used to ameliorate nerve pain. Anti-epileptic or anticonvulsant drugs and/or anti-depressants are logically used because the pain arises from the nervous systems. Yet they only work for about a third of patients who use them.
Anticonvulsants: These are useful drugs that were originally designed for the treatment of epilepsy. The older ones such as carbamazepine, phenytoin and sodium valproate all have a role. They have an inhibitory effect, reducing abnormal and excessive "electrical" excitability in the nervous system. There may be problems. Due to their side effect profile, they are becoming less popular. Sedation is a major concern, along with problems with concentration and memory at the dose levels required for controlling pain. They can cause dizziness, blurred vision, allergies, skin rashes and so on.
Gabapentin: a relatively new anti-epileptic drug, has become more popular among pain clinicians. Having fewer side effects than other anti-convulsants it is better tolerated by patients and does not interfere with other medication being taken.
Anti depressants, such as Amitriptyline: are also used but some people can not tolerate these, as is the case with the anti-convulsants. They work on the nerves dealing with the pain. Amitriptyline has been a first-line drug in this group but it is an old one with side effects, mainly sedation, dry mouth, fast heart rate, weight gain.
These anti-depressants, or tricyclics, increase the levels of neuro transmitter by blocking their re-absorption. Depressed people have fewer neuro transmitters than normal being released, thus leading to reduced stimulation. Other drugs such as imipramine, dothiepin, dofepramine may also be used.