30 replies to this topic

[schao]

Hello this is my first post and I want to ask all of the paralyze brothers and sisters if anyone of you have leg pains because i've been paralyze for the last 13 years and I been having alot of leg pains worst pain you can ever have and i've been on all kinds of meds but still no luck I mean it helps a little but not even near enough to do anything when it hurts i'm talking about 24/7 pain. So if anyone out there like me please shed me some light on how to control the pain.

Thanks and God Bless

[jass1]

hi this my firt post i got the same pain the doctor in germany told me if the med did not work then the only ohter thing we can do is brain opration
i hope this can help you

[schao]

jass1, on Dec 26 2006, 05:00 AM, said:

hi this my firt post i got the same pain the doctor in germany told me if the med did not work then the only ohter thing we can do is brain opration
i hope this can help you

wow brain operation? crazy solution rather have the pain than have brain operation. So what are you going to do? What kind of pain do you have?

[jass1]

HI
the doctor told me to go back to qatar wait for 4 months and see how the new med is working then we will decide if the brain operation is necessary but know I'm doing much better.
this is what the doctor said to me in Germany he said theres 6 type of med he tryed all on me then he said you are like a radio I'm tuning you he really did my pain know down to half
the pain i feel is pressure,heat.niedles going throw my leg and electric shock 24/7
by the way where do you come from

[schao]

jass1, on Dec 27 2006, 05:15 AM, said:

HI
the doctor told me to go back to qatar wait for 4 months and see how the new med is working then we will decide if the brain operation is necessary but know I'm doing much better.
this is what the doctor said to me in Germany he said theres 6 type of med he tryed all on me then he said you are like a radio I'm tuning you he really did my pain know down to half
the pain i feel is pressure,heat.niedles going throw my leg and electric shock 24/7
by the way where do you come from

I'm in California USA. Your pain is about the same as mine. When it hurts it's like burning sharp tingleing pain and it feels like someone stab me with a knife and twisting the knife. I have taken all kinds of medication still no luck..

[jass1]

HI
i will give you the names of my med so you can ask your doctor i hope it help.
i been to California twice its not far from my college my school was Catholic college in Olympia washington its called ST MARTIN COLLEGE and i was married to an American women before i have son he is on his way to Qatar know he was visiting in the USA


lyrica- 150mg twice daily

valoron retard-100/8mg three time daily

saroten-50mg 1/4 tablet daily at night

[Chilepepper]

OPERATE ON YOUR BRIAN IF THE PILLS DO NOT WORK!!!!!!!!!!!!!!!!!!!!!!! What kind of whack off doctor is he anyway. I think he needs to be lobotomized or something. Jeez that is just crazy that a doctor would suggest such a thing without further investing this pain.

Try and stay away from pain relief meds as much as possible , as it does not correct the problem, it only masks the pain. In the long run it could possibly cause more damage.

Here is a website that might be of help to you all. From your profiles you all have low spinal break levels. This is good because you can work your core muscles(ABS) Check out this website for it might give you some ideas. Even better search the web yourself and see what you can find. Be your own doctor when it comes to these kind of things.

http://www.spine-hea...b_res_exer.html

[jass1]

HI Chilepepper
I have to take my med or will not be able to do anything the doctor in germany said that my pain rear its very sever that any movement is too painful for
example if go some where in car its so painful that it take 2 day for to recover in bed i do not like anybody to touch my bed.
sorry it took long to answer because of time deference

[Chilepepper]

Hi Jass1

I'm no doctor but I'm pretty sure it is not your head that is causing this terrible pain you are having. I would think it is caused by the break in your back. The signals coming from your brain to your legs are being partial, so of like a lamp wire that has been damaged. The light will flicker off and on. Your spine is doing the samething.

Just wondering how long you have been injured and are you complete or incomplete, plus is your spine fused?

Edited by Chilepepper, 30 December 2006 - 08:21 AM.

[susiejt]

schao, on Dec 26 2006, 11:50 AM, said:

Hello this is my first post and I want to ask all of the paralyze brothers and sisters if anyone of you have leg pains because i've been paralyze for the last 13 years and I been having alot of leg pains worst pain you can ever have and i've been on all kinds of meds but still no luck I mean it helps a little but not even near enough to do anything when it hurts i'm talking about 24/7 pain. So if anyone out there like me please shed me some light on how to control the pain.

Thanks and God Bless

Hi Schao,

In context - for me managing my pain & weakness, which both effect what i can & can't do drastically eg have not been able to return to work as just can't even sit for long, is a big issue & takes a lot of focus & energy & planning & monitoring & care.
Things that work for me for controlling/ managing terrible pain are:
Medication - Amitryptolin (old fashioned anti depressant that has some effect on nerve pain & taken for that reason; lessened pain so i stopped feeling suicidal all the time; Lyrica a very new nerve pain / epilepsy drug made a big difference but then i could sit longer but that therefore started other physical probs so not on it now;
Magnets - use magnetic therapy 24/7 & could not survive without them, eg if i forget to put my large lumbar magnet on for example within 3 hrs i am nearly crawling the walls in pain in my back &legs, sleep on them etc - happy to give more info if you want;
Zero Gravity / Perfect Chair type systems that tip you fair way back & put your legs above your heart & you start to feel so much better - been using for 12mths & is wonderful for pain management;
Meditation - allows me to just observe a lot of the terrible things but when they are really bad & meditating is hard (could only restart with the above chair because before i was in too much pain) then i just start repeating my list of affirmations, positive messages for the mind that is then going berserk & getting very distressed.
Far Infra Red Sauna - if you can get into one (depending on your injury) they are great. I have one at home, expensive, & it has a very good effect on pain.
Visualisation for healing - imagining healing energy etc going to the areas that are driving you crazy.

Take care, good luck, i hope it eases. If i can be of any other help on any of these things then just let me know.
Susie

[schao]

susiejt, on Dec 30 2006, 05:28 PM, said:

schao, on Dec 26 2006, 11:50 AM, said:

Hello this is my first post and I want to ask all of the paralyze brothers and sisters if anyone of you have leg pains because i've been paralyze for the last 13 years and I been having alot of leg pains worst pain you can ever have and i've been on all kinds of meds but still no luck I mean it helps a little but not even near enough to do anything when it hurts i'm talking about 24/7 pain. So if anyone out there like me please shed me some light on how to control the pain.

Thanks and God Bless

Hi Schao,

In context - for me managing my pain & weakness, which both effect what i can & can't do drastically eg have not been able to return to work as just can't even sit for long, is a big issue & takes a lot of focus & energy & planning & monitoring & care.
Things that work for me for controlling/ managing terrible pain are:
Medication - Amitryptolin (old fashioned anti depressant that has some effect on nerve pain & taken for that reason; lessened pain so i stopped feeling suicidal all the time; Lyrica a very new nerve pain / epilepsy drug made a big difference but then i could sit longer but that therefore started other physical probs so not on it now;
Magnets - use magnetic therapy 24/7 & could not survive without them, eg if i forget to put my large lumbar magnet on for example within 3 hrs i am nearly crawling the walls in pain in my back &legs, sleep on them etc - happy to give more info if you want;
Zero Gravity / Perfect Chair type systems that tip you fair way back & put your legs above your heart & you start to feel so much better - been using for 12mths & is wonderful for pain management;
Meditation - allows me to just observe a lot of the terrible things but when they are really bad & meditating is hard (could only restart with the above chair because before i was in too much pain) then i just start repeating my list of affirmations, positive messages for the mind that is then going berserk & getting very distressed.
Far Infra Red Sauna - if you can get into one (depending on your injury) they are great. I have one at home, expensive, & it has a very good effect on pain.
Visualisation for healing - imagining healing energy etc going to the areas that are driving you crazy.

Take care, good luck, i hope it eases. If i can be of any other help on any of these things then just let me know.
Susie

I've been taking amitriptyline and clonipin ever since I got paralyze and it helps a little. amitriptyline knocks me out to sleep that's mostly the only way I can go to sleep. I took lyrica and it help a little but when the pain starts it seems the pain is more sharper and deeper so I stop taking the lyrica.

[susiejt]

I've been taking amitriptyline and clonipin ever since I got paralyze and it helps a little. amitriptyline knocks me out to sleep that's mostly the only way I can go to sleep. I took lyrica and it help a little but when the pain starts it seems the pain is more sharper and deeper so I stop taking the lyrica.
[/quote]

For me same - Amitryptoline is the only way i can get to sleep. I also have found the Lyrica a bit of a mix too - sometimes good but seemed to cause other pain or was it because i felt i could do more & then kept causing probs / strains for myself, I wasn't sure. It did seem to have some effect on what i can only describe as cellular memory of pain. It seemed to change the messages for a while which was a good thing but the problems were bigger than the benefits for me overall so had to go off it slowly.
Magnets are really one of the important things i rely on to help manage pain, hard to believe they work but for me they definitely do.

[Shiraz]

[quote name='susiejt' date='Dec 31 2006, 08:15 PM' post='25486']
I've been taking amitriptyline and clonipin ever since I got paralyze and it helps a little. amitriptyline knocks me out to sleep that's mostly the only way I can go to sleep. I took lyrica and it help a little but when the pain starts it seems the pain is more sharper and deeper so I stop taking the lyrica.
[/quote]

For me same - Amitryptoline is the only way i can get to sleep. I also have found the Lyrica a bit of a mix too - sometimes good but seemed to cause other pain or was it because i felt i could do more & then kept causing probs / strains for myself, I wasn't sure. It did seem to have some effect on what i can only describe as cellular memory of pain. It seemed to change the messages for a while which was a good thing but the problems were bigger than the benefits for me overall so had to go off it slowly.
Magnets are really one of the important things i rely on to help manage pain, hard to believe they work but for me they definitely do.
[/quote]

Schao, I am dearly encouraged by your fighting spirit, and please know that you have just saved another soul. It has been almost two years post my injury, and I can tell you the only thing I cannot bear is the pain. I am only 28 years old, but I have completely retired from work as the result, because the pains takes charge of your life in a way, and u cannot concentrate on anything that you do when you are deeply attacked.

All this time I have been doing nothing besides learning more about my injury, and also discovering my strength towards total heeling. The brain exercise was the first step, after discovering that the most important tool of my body, which is still intact and can be utilized fully is the brain, of course this could have not been easy without training and recommendations from the Hypnotherapies. Look, I feel I can still persevere after hearing your story, but I for one cannot recommend any workable methodology and a thought of brain operation scares the hell out of me, it’s like the recommendation of one Doctor who said my spinal nerve is partly damaged and if they cut it, I will become complete “para”, then, I will never have to feel the pains anymore!

I gained movement on my legs, regardless that I still do not have sensation on my foot; I can walk with one crutch. I get this pains 24/7 like you guys, it took me about an hour to complete just this note……..!

Hey, happy New Year to everyone lets be thankful that yet another year God has kept us alive.

One more thing, I used to complain if whether will I ever have a child, and this Christmas I got more than I bargained for from Father Christmas, my partner is pregnant without any help from fertility Doctors/or medication. It was God’s blessing, I mean a guy who has bladder and bowel problem, not to mention that I have no feeling in my “Manhood”

Edited by Shiraz, 01 January 2007 - 01:04 PM.

[AHolland]

The pain a lot of you are discussing falls under the category of "Neuropathic Pain". In layman's terms neuropathic pain comes about because of deterioration of the nerve pathways. It is very common in spinal cord injuries because the central nervous system has taken some damage, or is broken completely. Messages from the extremities of the body try to get up to the brain using the traditional pathways. When the messages cannot get up the spinal cord they try to use secondary nerve routes to get around the spinal cord break. When they do this, they usually reach the brain in a garbled fashion. The brain, not understanding the message, simply labels the messages as pain. The messages can come from all the usual things like temperature, moisture, pressure, pretty much anything the body is experiencing.

Some people report very little Neuropathic Pain (NP) while others report killer levels. Common places for NP are areas such as the toes, butt of sides of the legs. NP is not the same as an amputee feeling sensations from the missing limb. That is usually classifeid as phantom pain.

The treatment of NP usually follows a traditional treatment program. The doctor will usually start with drugs like amytryptaline and neurontin. While drugs like amytryptaline were originally designed to treat depression, they later found that it works well for chronic pain such as NP. Dosages of amytriptaline for treatment of NP usually fall into the range of 25-75mg. Beyond that, the common side effect of constipation becomes too great while the benefits tail off.

Neurontin (gabapentine) is a very common second treatment option. Neurontine acts to dull the pain at the source so the messages getting to the brain are weaker. The manufacturers of Neurontin suggest that it only works in dosages up to somewhere around 2000mg, but specialists like mine have suggested treatments up to 4800mg's. Other studies also agree that it can be used at that high a dosage.

I believe Lyrica is made by the same company as Neurontin. It's only been around a few years though. Lyrica acts differently than neurontin. Lyrica trys to block the messages at the brain level. Dosages are usually 75-300mg, but it's new enough that I'm not sure a track record has been defined for it yet.

I have not come across any literature that discusses the combination of drugs, although it is very common that people use a mixture of the antidepressants and one of the neurontin/lyrica drugs. I have not heard of anyone using both of the neurontine/lyrica, but I'm sure it's been tried. I plan to ask the doctor about it myself.

When the pain gets really bad then doctors may suggest the use of additional pin killers like oxycodine, morphine and fentanyl. There are some problems with the use of these as all these drugs seem to constipate people compounding the issues. Morphine is a common, long used pain killer while fentanyl is a bit newer on the market. Fentanyl is also quite expensive to use. Fentanyl is usually applied via a patch system which allows the drug to be pulled from the patch into the skin over time. The patch is usually used over three days when a new patch is applied. Unfortunately a lot of people report that the Fentanyl patch works well the first day, less the second day and not at all the third day, resulting is the user applying the patch every second day. Finally, some people use a short term fix by either applying the fentanyl in liquid form, directly under the tongue or through sucking lollipops with the drug in them.

The last resort to NP is surgery. By using surgery, the doctors are trying to directly cut off the nerve pathways the NP is trying to use. Surgery is not a great idea because the body may simply rework the nervous system and the NP can come back. However, if the pain can be isolated enough, then the doctor may try this approach which does work for some people. The best that can be said of this tactic is that anyone with a spinal cord injury does'nt really care if a nerve is cut because they probably have no use for it anyhow. I do know of one person that actually had a limb removed, under a doctors order, to remove the pain.

Other things a person can try that have found some success is the use of acupuncture, heat (long hot baths or showers). I'm sure some other people can suggest what works for them.

In closing: I have no heard of anyone performing brain surgery to reduce NP. You should really get a second doctors opinion in your case. You may have misunderstood what the original doctor was suggesting: nerve cutting so the pain does'nt get up to the brain, not brain surgery. It also may be that the source of your pain is not neuropathic in nature, but instead something else.

Good luck. I'm still working on it myself

[susiejt]

AHolland, on Jan 2 2007, 07:59 AM, said:

The pain a lot of you are discussing falls under the category of "Neuropathic Pain". In layman's terms neuropathic pain comes about because of ....Good luck. I'm still working on it myself

Thank you so much for all of that very helpful information - i really appreciate your taking the time to explain it to us. it helps. Good luck to you as well.
Susie

[jass1]

thank you AHOLLAND for info
i have question its been 20 months since my accident in the last six months i started feeling like my legs want to move but its too weak does that mean anything
thank you

[Radar]

[quote name='AHolland' date='Jan 1 2007, 03:59 PM' post='25531']

... The last resort to NP is surgery. By using surgery, the doctors are trying to directly cut off the nerve pathways the NP is trying to use. Surgery is not a great idea because the body may simply rework the nervous system and the NP can come back. However, if the pain can be isolated enough, then the doctor may try this approach which does work for some people. The best that can be said of this tactic is that anyone with a spinal cord injury does'nt really care if a nerve is cut because they probably have no use for it anyhow. I do know of one person that actually had a limb removed, under a doctors order, to remove the pain....

AHolland,
As to your write-up, I could not have said it better myself. I bow! One comment about the brain surgery is; what may have been implied was an electrical stimulus implant. However, implants can be done at or near the SCI site. There was a segment about implants done on 20/20 or Dateline so do a search, Jazz1. Implants work well on epilepsy and Parkinson’s. I think the jury is still out for pain. It involves drilling a hole in the skull while the patient is alert. Relax; they might use a local anesthetic. The brain itself supposedly does not feel pain, it only senses it. What a trip! Then they probe around electrically with a thin wire while you answer questions to locate the optimum location. The electrical stimulus confuses the brain so it does not sense pain. I asked my Dr if this would work on me (at the spinal cord) and they discouraged me. Having an L1 injury (and slightly above and below L1) is a special case. The stimulus approach does not work well in this case. The spinal cord ends at that level more or less and injuries below that behave differently than say a T4 or C7 to stimulus therapy. Rats! At this point the spinal cord turns into peripheral nerves. At least that is how I understand it so take all of this with a grain of salt.

A was informed by a Dr that there is a nerve loop near the end of the spinal cord just before it turns into peripheral nerves. This loop controls the walking gait so even if you have a SCI above that, you might be able to go through the motions of walking under zero or near zero gravity conditions such as in a pool. Thiws is the reason injuries below the lop behave differently. With an L1, the loop is actually broken in my case so I am screwed.! I my opinion my best bet to control pain hope is using stem cells or schwan cells to fix the break with neuro surgery. . See the link below. They are working on most of these new methods. Check it out!

[url="http://www.miamiproject.miami.edu/x542.xml"]http://www.miamiproject.miami.edu/x542.xml[/url]

I also have unauthorized pics of their setup I promised I would not distribute! They have an oval track that is about 50'x25' so you can walk in the harness instead of the tread mill. Awesome! The nerves for walking do not have to go to or come directly from the brain. Sort of like a remote intelligence in the spinal cord. Yes, the brain might initiate walking but the actual walking gait is controlled and remembered by the spinal cord. For real!

I personally know a German guy (Joaquin I think was his name) who is an incomplete C5-6(?) that took part in the reduced gravity gait studies. They hung him up on a harness as part of a study and he was able to walk on a treadmill with the lower extremities in 30%(?) gravity conditions without any electrical stimulation. I believe his injury was 10-12 years old at the time. It was amazing seeing him walk. I think he regained some movement of his legs a result but not sufficient to walk. Caution, he was very incomplete so it is not a miracle cure. The study did I belive help with his pain significantly!

We used to chat on Miami's South Beach so I knew him well. I hung around Joaquin because he was a babe magnet sitting on his cycle-one handcycle and I on mine (look but don’t touch is OK with my lovely wife) Nice guy but I lost touch with him. Anyone interested in handcycles; I ride, repair & modify them…its is one of the few thrills left for me.

I was involved in an exercise study for old fart (over 45) in ’99 at the ‘Miami Project to Cure Paralysis’ under Dr Jacobs and I can say nothing but good things about them. I lost about 15-20 lbs(?) in 6 weeks and became ripped. I had never felt better since my SCI. There is a good hint for y’all. Exercise, exercise, exercise!

Jazz1, the Dr is either in the forefront of pain treatment or he is a quack. Get a second opinion from a well known SCI pain specialist that is associated with any medical university such as ‘the Miami Medical School or Harvard for example. With an independent Dr no matter how well advertised, I would be very skeptic about having brain surgery to treat SCI pain on me. A SCI pain specialist I have seen in Massachusetts is Dr Christine Sang of the Brigham & Women’s Hospital Pain Clinic (in Boston). I think she only has pain consults one day a week and works on clinical pain trials the rest of time. Maybe, I’m not sure. I have seen a half dozen or more pain doctors and she is by far the one I rate the highest. The most specialized in SCI pain other than at the Miami Project. The wait for an appointments was longer than my winter in Miami so I never got to see a Dr there. I am from New Hampshire. Gods Country! (coined so for it's beauty). Although those from Maine and Vermont would beg to differ

That’s way more than enough for today.
Radar

Be in touch and fight the good fight. The alternatives are not pretty.

PS, The VA in Arizona and California is also doing wonderful thing in association with local Universities. Check them out. I go to the W. Roxbury Mass VA (my regional SCI center) for yearly checkups and they are very thorough. I have not seen their pain specialist. Just the one in my local Manchester NH VA. Dr Sedon Savage visits once a week. She is based out of the Dartmouth-Hitchcock clinic in Lebanon NH. I am OK with her even though she has kind of given up on my nerve pain lately. She has helped a lot but does not what to do next?

[Radar]

jass1, on Jan 5 2007, 12:14 AM, said:

thank you AHOLLAND for info
i have question its been 20 months since my accident in the last six months i started feeling like my legs want to move but its too weak does that mean anything
thank you

It could be the real thing due to nerve regeneration or phantom sensory or your just recollection of moving your legs. I Think I have experienced the same and after the two years mark the improvements regaining sensory and motion slowed down immensely. Then came the pain!

You need to get into a low gravity environment such a a pool and talk to you legs! Wake them up. Who really knows? Mind over matter used to be my motto.

There is a test called EMG where they can find out if the nerves are still working using shocks and specialized software. In my case, having a partial L1 break, my nerves have atrophied for the most part according to this test I had recently. It will be 12 years for in April I was injured. As was explained to me, the nerves attach to the muscle sort of like a bunch of grapes. In your case as is with me, a few of the grapes may be connected but not in sufficient quantity to actually contract or relax a muscle at will. Now they might not be even normal connections and therefore not even partially functional. There is a lot unknown. That is the problem. Atrophy I was told is common at my level. High T and C level injuries do not have this problem and can thru stimulation artificially move their legs. See

http://www.miamiproj...mi.edu/x542.xml

Such therapy might even allow you to regain movement as the brain starts to reroute a path to the legs or find an old one. It may not be permanent as if you do not use it, you loose it.

I know a guy that did just that. First electrical stimulus (not sure about the stimulus part) and then I know he rigged up a recumbent bike where both the hands and feet powered the cycle simultaneously. The feet where strapped into the pedals and initially just went for the ride as a hand cycle. After I think about 1-1/2 yrs of this (maybe more) he was able to walk with just canes. It has been a while and I lost touch with him probably around ’98. He was from NH or Vermont somewhere near White River Junction.

Radar

[jass1]

HI RADAr
I thought wash state is god country that where i went to school by the way.
i was checked by a research doctor in spinal cord pain from the military hospital in KOLENZ GERMANY he is the one how gave the treatment.
what happened i was i asking the doctor if the does not go a way do cut the spinal cord he said we do not do that anymore but we do brain surgery and i saw 20/20 because we get American tv her in Qatar i was just watching dallas&seattle live.
another thing when i rube my legs i feel numbness and my pain gets worse i have more feeling in my left leg so is the pain the pain is much wore in left side
one more thing the doctor how operated on me is know the head of research center in Switzerland he was having dinner with my sister he told her in 3 to 5 years we have treatment or good idea about stem cell treatment he is one of to ten doctors in europe and

[Radar]

jass1, on Jan 6 2007, 11:47 PM, said:

HI RADAr
I thought wash state is god country that where i went to school by the way.
i was checked by a research doctor in spinal cord pain from the military hospital in KOLENZ GERMANY he is the one how gave the treatment.
what happened i was i asking the doctor if the does not go a way do cut the spinal cord he said we do not do that anymore but we do brain surgery and i saw 20/20 because we get American tv her in Qatar i was just watching dallas&seattle live.
another thing when i rube my legs i feel numbness and my pain gets worse i have more feeling in my left leg so is the pain the pain is much wore in left side
one more thing the doctor how operated on me is know the head of research center in Switzerland he was having dinner with my sister he told her in 3 to 5 years we have treatment or good idea about stem cell treatment he is one of to ten doctors in europe and

Hi Jazz1,
It is probably day break or later in Qatar. I am waiting for my nerve pain to settle down just to go to the toilet at 4AM. Nothing worst than pain spikes while sitting on the throne from the med cycle doing my thing for an hour . Then I can try to get some sleep. Pain has done a number on my sleep cycle.

So how did you end up in a German military hospital if you are from Qatar? Or are you German and stationed in Qatar? Just curious..

You need to ask the Dr if you can tape the consult due to a possible language barrier as there might be one. Only you would know the answer to that question. I know a little about that as I was born in Cuba and came to the US at age 9 in '61. Even after 45 years my father still misunderstand a lot of things now. He is fairly fluent but when technical terns or slang is used he gets lost. I am sure some of my slang is not understood. It just makes the text a little less boring! Saddle up, lock and load for instance is Vietnam era slang. It can be used today to indicate that we do what ever it takes to go on. The now generation might say what? If the Drs let you, tape it! Sign a waiver if you need assuring them it will not be distributed or otherwise used for capital gains etc. I could even benefit myself from a tape. My wife and I never agree on what the Dr has said sometimes.

I do not believe brain surgery as a solution for naturopathic pain but who am I to say so. I also rub my legs and for an unknown reason it provides some relief. Maybe it is just the fact that I am doing something and not just waiting for the pain spike to go away.or the added stimulus just like electrical shock can calms down the brain's response. I tend to think the latter. The Drs for the most part just lump me into the phantom pain group and dismiss all this info. Extremely frustrating.

I do sense pain. For instance if I sit on an object for a while, I all of a sudden can tell by the pain. It can take minutes. I take the object away and the pain goes away too. How can that be phantom pain? This area I am talking about is below L1 at around L3. The sensory regeneration is partial as it is very spotty. Move a half an inch or 2 cm and I might feel nothing.

By the way my nerve pain started on my right knee just above the knee on the lower quad (L3 or L4, not sure). It prevented me from walking (hobbling is more like it) with braces and forearm crutches. You need to lock your knee to walk with this type of brace. The nerve pain has migrated to my posterior thigh (back of my leg) and occasionally on really bad days runs right up to my gluts (butt check). Wow is that excruciating! It can affect either leg now and tends to alternate at times from one leg to the other. You realize that you only fell the area that has the most pain. Any other area with less pain is overlooked by the brain. I am fairly certain that is true. The Drs outlook was fairly grim as he and my Physical Therapist believe the pain will eventually migrate and not stop unstill it reaches the injury site at L1. Pretty grim but we do what we have to. What ever it takes.and march on. As I wrote before, the alternatives are not pretty.

You had an operation already? For the SCI?

Later,
Radar

[Radar]

jass1, on Jan 6 2007, 11:47 PM, said:

HI RADAr
I thought wash state is god country that where i went to school by the way.
i was checked by a research doctor in spinal cord pain from the military hospital in KOLENZ GERMANY he is the one how gave the treatment.
what happened i was i asking the doctor if the does not go a way do cut the spinal cord he said we do not do that anymore but we do brain surgery and i saw 20/20 because we get American tv her in Qatar i was just watching dallas&seattle live.
another thing when i rube my legs i feel numbness and my pain gets worse i have more feeling in my left leg so is the pain the pain is much wore in left side
one more thing the doctor how operated on me is know the head of research center in Switzerland he was having dinner with my sister he told her in 3 to 5 years we have treatment or good idea about stem cell treatment he is one of to ten doctors in europe and

Or are you US military stationed in Qatar? Knowing a little about your backgrond can help me formulate my responce, that's all.



Radar

[AHolland]

I briefly read over the previous postings. Briefly as I am getting into that hurt mode again where I will have to lay down. Hopefully I won't say something that has not already been said. Here are two points I would like to make.

Firstly (is that a word??). People new to SCI injuries may start to fell areas of NP pain as the nerves reconnect or more acurately stabalise after the trauma and surgery. What the patient may feel is small areas of pain that later grow larger and start in secondary areas. This is because of the regrowth/regeneration/re-routing of the nerves. This can be frustrating because the new patient may begin to get some good progress in feeling and body control, but also get more pain in the process. It's a two edged sword. In order to get the new feeling and such the nerves have to repair themselves. That repair can also, but not always, bring new pain. Frustrating. This repair typically goes on for a couple of years, but can continue for 5-8 years in special cases. Our body never really stops repairing itself, it's just that the majority of the repair comes in the first couple of years.

I have heard of a number of different ways that doctors are trying to get around the damage done by an SCI injury. Stem cells, processor implant, nerve jumping (building bridges over the breaks). The list goes on. All of this seems exciting to the new person as it gives hope. People that have been injured longer realise that while there is hope, it is more reasonable to think of the fix being at least a decade off. In reality the fix will start with the partially injured and progress to the heavily damaged (like me) patient well down the line. I don't want to put people off, but people must understand to deal with what they have now, and not just wait for the fix to come in the next couple of years. We have all been hearing that for a long time now. Real progress goes through a process of: research for a number of years. Specialised testing on specialised patients for another 3-5 years. Wider scope testing for again 3-5 years and finally, and only if applicable use in the public. I'm sorry to say for both myself and others that a decade is a minimum reasonable time to hope for the final cure. A minimum. That may only apply to the partially injured, not completely severed like myself.

Bringing this back to the pain issue. Not everyone gets severe pain. It's really like a normal distribution. Most people get a little pain that is manageable. Some get no pain at all. Some small number of us get severe pain. The good news is that severe pain is not that common, given the number of people that have SCI injuries. The ones that do get some level of pain race around trying to find anything that works. I did forget to add that TEMS/ EMS may be a method that works to reduce pain. Strange as it may seem, it works to a 25% degree in myself some times, and not at all other times.

TENS and EMS are simply the application of electrical stimulation in order to reduce pain or problems in muscles. You normally apply two or more electrical pads at the pain area. The pads are normally placed a pad width or two apart. You then select a method of electrical stimulation: long pulses, short pulses, combined with an electrical amplitude. EMS is usually used for muscle stimulation/ tonning for muscles while TENS is in the higher frequencies and may work better for pain. The silly abdominable growth ads push the EMS machines...hey use it twice a day and you will have abs of steel.... It does work to stimulate the muscles and may hold muscle tone. It's very dubious that is will grow muscles.

Anyhow, I hope this helps a bit. I have to go lay down before I fall out of my chair.... I will check back in a couple of days to see if there are any questions I can help with....I'm sure others will give you some good tips.

I would only touch brain surgery from a very experienced doctor who also agrees you need this kind of surgery. I have very severe pain and have never had anyone suggest this for me.

[jass1]

HI
i agree with you about the brain surgery I'm not going to rush into something like that special know i have control over my pain and sorry i did not get back to you sooner because i was having pain and i was laying down most of the time its painful to set up in bed for more then 2min but I'm ok know.
i spent 6 months in rehab in koblenz germany te town was very good its on the reihan river,old churches,good cafes just beautiful the hospital is one the best in germany spcialy for rehab because they only take 36 paient at time so they really take care of you the coast for privet room is 600euro or 780$
qatar goverment paid for that also they paid for
e-chair which i do not use and i get all of my supples of cath,pads and so on free every month
know i remember something the doctor told me before i left the hospital he said you will walk someday short distance and the number 2 doctor said you will stand with help yet they Classified me as complete but they say complete to be on the safe side so they do not give fouls hope
i hope I'm not making to many mistake because english is my mother tounge

[jass1]

HI RADAR
I'm from qatar i learned English in seattle unevrcity then i moved to olympia WASH to Catholic college its small but very good school there i met my X-wife she was American indian or native American i have son with her he live most of his life in the states know he is living with me her he 23 years old i also have for girls from my qatari wife.
in we have the largest American base out side the USA
i used to meet alot of American solders and officers in the bar of resort near the base and on the beach where go fish every weekend
me and my friend used to take the America service men and women to the beach in the car also drive over the sand dones at 3AM drunk
funny story a latino solder she P standing its so funny its like shock to me it was night and we stoed because some of the us want P i was driving and i looked to my left and i saw her she was not standing up shes kind of bending a little.
i had an accident in toyota landcruiser nobody of my friends and family willing to show me what happened to the car all they its bad.
what i know is that the people how found me they covered me up and called 999 like 911 in us they said there is an accident and one died person when ambulance came they found barley a life my heart had stoped in the ambulance and twice in surgery I'm sure its was worse but nobody want to tell me the truth
if there is any ? please ask

[Radar]

AHolland,
Apologies if I caused you any pain. I tend to write a little on the long side. Well actually a whole lot.

I agree 99% on your view of the cure and of our future. A well done treatise! Once again I bow. I like you think the cure will take some time to get around to us after one is found. The whole time we wait our bodies continue to gradually succumb to the unavoidable complications. That puts us further down the ‘cure list’. That has been my experience in any event. In the last 8 years my calves have slowly but significantly atrophied. My tone has simultaneously gone down the tubes. Does this not put me further down the cure list?

The important thing is one has to remain positive and look forward to the coming peaks. For there is always hope just as there are highs and lows. One must stay positive and not go down the darker side. In actuality I caught my self down just that just now. Do as I say and not as I do. I just deleted several paragraph of rambling thoughts on the darker side. It is a constants struggle to stay positive. What does this all have to do with pain? Well, I never would have gone to the darker side were it not for the pain. It is what woke me up. Pain is what drove me to this forum at this wee hours in the AM.

An import issue to me is: I wish that pain did not run my life like it does. Everyone in my circle of acquaintances seems to have solutions. But they are not paralyzed. So their solutions seem so simple and even obvious.

About TENS, I initially had a slight improvement using big 2x2 inch pads. So it seemed ever so slightly using the large reusable ones that came with the unit. When I got replacement pads, they were small ones and it stopped working. Seems like an easy fix. Just get some like the original ones. But I stopped using it. The HMO's just would not listen to me. It all makes sense as a larger pad can carry more current into a larger area.

Finally here is the 64,000 dollar question. How do y’all cope with pain so that it does not run your life? No matter how hard I try I cannot take back control except for brief moments. Pain controls me. For the most part I have very little control of it. Meds don’t work well and the alternative approaches are not my thing. The acupuncturist told me not to come back for instance after 6 visits. I got kicked out of a pain management class years ago. I still smile thinking about it. All these stupid forms and list they wanted filled out! My pain can be a 2 now and an 8 the next second. What is the point of asking me on a form what is my pain now?

Mind control seems the answer. But realistically how does one do that? Unfortunately it escapes me.

Later,
Radar

[Radar]

jass1, on Jan 9 2007, 03:23 AM, said:

HI RADAR
I'm from qatar i learned English in seattle unevrcity then i moved to olympia WASH to Catholic college its small but very good school there i met my X-wife she was American indian or native American i have son with her he live most of his life in the states know he is living with me her he 23 years old i also have for girls from my qatari wife.
in we have the largest American base out side the USA
i used to meet alot of American solders and officers in the bar of resort near the base and on the beach where go fish every weekend
me and my friend used to take the America service men and women to the beach in the car also drive over the sand dones at 3AM drunk
funny story a latino solder she P standing its so funny its like shock to me it was night and we stoed because some of the us want P i was driving and i looked to my left and i saw her she was not standing up shes kind of bending a little.
i had an accident in toyota landcruiser nobody of my friends and family willing to show me what happened to the car all they its bad.
what i know is that the people how found me they covered me up and called 999 like 911 in us they said there is an accident and one died person when ambulance came they found barley a life my heart had stoped in the ambulance and twice in surgery I'm sure its was worse but nobody want to tell me the truth
if there is any ? please ask

Hi Jazz1
Your last post is a little difficult to read. Not sure if that is the alcohol talking or your haste writing. I use MS WORD to help me write and then cut and paste into the forum response. I do this because my English grammar and spelling is horrible. The WORD grammar and spell checker helps me an awful lot! This method also prevents me from accidentally loosing the text typed in the forum should I get side tracked or timed out. I hate when that happens. I lost several paragraph my first time on the forum.

So you re a recent T10-12 para? Then you are about the same level as I am (L1)). I am fused T12-L2. Not considering incompleteness of the SCI, I should have just a little more function of the hip area and balance. I used to walk very very short distances with braces and forearm crutches at around year 2-3. You might be able to do that too while we wait for a cure. The key is whether you have any glut function or not. It is harder to walk without the gluts which I think are lower than T11. I am not sure. Everyone is a little different.

I would not dwell on the accident too much. I do not remember my fall. It is called traumatic amnesia. The mind as a form of self preservation has blanked out a slice of time. I do not remember the fall at all until I woke up and tried to stand up. I hate heights so it is a good thing I do not remember! Don’t dwell on the accident. What will it accomplish if you do find out what happened?

Too bad about the Land Cruiser. They are nice! I love Toyotas but they are all too high and I cant self transfer into them. The JX is very nice. I drive Chevy S-10s. I have 2 of them; a '97 S-10 and a '03 Extreme. I set them up myself with hand controls etc back when the pain was not so horrible. Chevy is a piece of crap compared to Toyotas but it the best suited to my needs. They were available factory lowered 2 inches to the ground. Actually I cannot complain too much about the Xtreme as it is a much better updated design of the ’94-’97 S-10. More reliable too. Both are very gimp friendly.

You started a funny story about the latino babe and left me hanging…

Cuba Libre!
Radar

[jass1]

HI Radar
MY FRIEND YOUR RIGHT I HAD FEW DRINKS PLUS SOMTHING GONE WRONG WITH MY LAPTOP I GOT NEW ONE .
THE LATIO GIRL SHE 19 YEARS OLD US ARMY SHE URINAT SATNING.
I JUST HAD FEW DRINKS AND STARTED THINKING OF GOOD OLD TIMES

[AHolland]

Hi Radar,

Like you I find that pain controls a large part of my life. It's always hard to know if the pain is getting worse, our tolerance getting lower, or more likely, our body is adapting to our pain medications. It's a fairly well known fact that our body adjusts to most of the higher level pain medications and we need more and more over time. I have never looked into the long term affects of using high strength pain medications. I was reading an article recently about a study of people who took as many as 10 fentanyl patches at a time and the majority of the people had no adverse effects. That's a whole lot of pain medications.

I would agree that the brain is central to living with pain. Unfortunatley it's near impossible to overcome the pain my adjusting your mental thinking. I think a person could do it if they started out with no pain and slowly dialed it in.

Most people do not really understand pain. Really, how could they understand the 24/7/365 relationship of a black tentacled beast that constantly flays you. People who could probably best understand would be POW's, in torture camps.

I'm sorry that I really have no magical cure I can send your way. Trust me, I would do it if I could. I would have to treat myself first though. Stangely enough our local pain clinic phoned me up[ and aksed if I wanted to come down for another visit. It's mainly because they want to keep a check on people who had a high 8/9/10 out of 10 rating. Probably to see if we killed ourselves off or something. I'm not there yet. I decided to go because I wanted to ask some questions about the theory of rotating medications. That line of thinking sais that a body becomes adapted to certain medications and the medications become ineffective over time. If you flip to something new, then you get some time before that second medication becomes ineffective. Through some trial and testing a person could rotate different medications over time for some pain relief. This idea unfortunately relies in some part on the patient making the decision to switch and to which level. Really, going to a doctor just legitimises the whole thing. I'm fairly lucky that my doctor lets me pretty much dictate my levels.

I have found that both Lyrica and Neurotin are both effective for short periods of time, but eventually the effect wears off. I would like to be able to try switching from 4000mg of Neurotin to 300mg of lyrica. There is no way you could do it quickly without your body blowing up, but you should be able to roll one down while you roll one up. As a side note, people who would think this is dangerous, would be right, but the consequences of letting a person in high pain just sit there could be worse. Here is my own completely undocumented or substantiated theory about high pain levels, based on a few people I know who deal with it. I wonder if this fits what you have experienced Radar?

The person in question usually goes through a couple of years trying different pain medications with limited success. At first, friends and family are supportive and sympathetic towards the person. Over time, the person in pain tries different things, none which really work. At the same time the person in pain finds the people around them start getting tired of being sympathetic and comments like, "well, you will just have to live with it", or "you are going to have to suck it up", start being said by family or friends. At the same time the person in pain starts to get grumpy, partially because it's getting hard to live with the pain and partially because the people around them are no longer supportive and have started to ignore the comments on pain. A little after this, the person in pain starts to notice that some friends or family are no longer comming over for a visit or phone calls. Those people are tired of the "pain this, pain that" stories. In essence they are more concerned with their own lives and don't want a person who is a downer in their lives. This is the point where you learn who are your friends and who is'nt. Pretty much all the disabled people I know have hit a point where certain people in their lives no longer want to associate with the disabled person because of either the disability, or a consequence of the disability. The person in pain often drives away even more people than the normal (is there an average disabled person??) disabled person because the pain has made them more caustic. This thinning of friends and family only drives the person in pain into a worse condition. There is less room to vent about the pain and less people to help with the difficult chores or whatever which only makes the person in pain in a worse situation. Eventually the person finds themselves in a somewhat limited and unhappy life and serious depression usually sets in. There are lots of studies that show depression causes pain. That's right, depression causes pain, most usually because with depression a person has more issues on their plate to deal with and less cognitive ability to fight the pain. It's one more nail in the coffin so to speak.

Sorry for the dark rant. I've seen it a few too many times in people around me. Fortunate for me, I still have a family and most of my friends. I say most of my freinds. The person who put me in this situation has recently said that they do no like comming over much anymore because I can be a downer to be around. Thankfully for me, although I am dealing with a lot of pain, I still believe in myself. I recognise that "my friend" is dealing with some issues with his wife and is not as mentally strong as I am, so he is running away from any potentially depressing situations. He has no idea how bad a life he could have.

Funny, but with all the difficulties that most of us have to deal with: bowels, bladder, pain, not walking, you name it... I am still plesantly surprised at how happy a lot of my disabled associates are given their situations. I think a lot of it is because we have gone through the fire that purges us, and tempers us to life. We find in life the simple things that make life happy and can ignore the more mundain issues that normal people complain about. Onward and upward..

[MissCaroline]

Hi!

I have the same experience the same kind of pain ("burning sharp tingleing pain and it feels like someone stab me with a knife and twisting the knife") = neurologic pain) and Neurontin has help a lot. Have you ever tried it?

Caroline

[Radar]

AHolland, on Jan 18 2007, 10:41 PM, said:

Hi Radar,

Like you I find that pain controls a large part of my life. It's always hard to know if the pain is getting worse, our tolerance getting lower, or more likely, our body is adapting to our pain medications. It's a fairly well known fact that our body adjusts to most of the higher level pain medications and we need more and more over time. I have never looked into the long term affects of using high strength pain medications. I was reading an article recently about a study of people who took as many as 10 fentanyl patches at a time and the majority of the people had no adverse effects. That's a whole lot of pain medications.

...

Hi AHolland,
Your theory is pretty much dead on as my experience with family and friends has shown me. I never had that may friends but I can probably say there are only a couple that turned out to be a real friend. The rest do not call or visit anymore. The only other comment I have to add is that my family has sort of gotten immune to my pain issues. This does not sits well. Life goes on and they start concentrating on their own issues and problems. My wife in particular has her own battles to fight with rheumatoid arthritis. When she seeks sympathy from me, I unfortunately do not have much to give. I am running on empty. She is close to 100% functional most of the time while I am highly dysfunctional most of the time these days. I will occasionally ask how she is doing, if it is a good or bad day. Yet she complains I have no sympathy. I have tried to way over simplify the issues as it is very complicated. I also think her tolerance is low while mine is relatively high. I do not completely understand this pain help/complain interaction as her problems in my estimation is in the 1-4 range compared to my 2-8 range (on my scale, at a ten one does not want to live just to seek relief, a 4 will not let you sleep). I say this based on experience. She goes bananas when I take out a splinter or lance an infected boil or pimple. Yes I enjoy doing minor surgery. You get the picture? I prefer some strong pain for a short duration just to get it over with while she is a complete wimp. Not being able to take the initial short duration pain to solve the problem she just prefers to stays miserable hoping it goes away. So getting back on track, if she is so casual about and forgets the little thing that help me, am I a horrible person by not being so sympathetic toward her wimpy 1-4 pain?

I should add that to her credit she is still with me after almost 12 years (another long and involved analysis) while most wives decide to leave soon after a SCI. On one hand her level of support has decreased while it has increased in other ways. She has become more reliable.

My dad likewise talks the concerned talk but the actions do not say the same anymore (another complicated situation).

One has to find something that they like a lot commensurate with their injury level. I like riding my handcycle and to work on it for instance. I have the three original wheels (soon to go on eBay) plus four others I build. I am now working on two more for the winter. It is very therapeutic to end up with a nearly perfect wheel built to my specifications. I am also hoping to switch over to disc brakes if I can find a qualified welder. I have already done that with my wheelchairs. First I installed road cycle brakes from a company no longer in business. Then I designed brakes using mostly bike disc brake components for my everyday chair. Basically anything to keep you busy that you really like. I find that while I am engrossed in such activities I have very little pain until I stop. Then whammo! ]

By the way, handcycling does a good job of strengthening the core torso muscles. Even at T4-6, you might be surprised how much it will strengthen or wakeup the upper torso and help with your balance. Not so much on a trainer as I use it now but outdoors if you can use the torso somewhat. After just a few weeks of cycling outdoors, it is amazing how much strength I can regain. So if you like cycling...

Radar

Edited by Radar, 30 January 2007 - 08:20 AM.