12 replies to this topic

[willow]

Hi all,

I am 2 weeks post op a C5-C6 spinal fusion and doing well. The cold weather has kicked in and so has the spasticity and associated pain. My neurologist wants me to try a Fentanyl patch for pain. I have had pain issues before I got my pump 12/04 and was hoping the Baclofen would help more. It has helped but I am still sore and working the Baclofen dose up,{385 currently} so I hope the use of the patch won't be a long period of time.

I have had four surgeries in less than a year {One for the pump, two cath. revisons and the spinal fusion} so I am pooped.

Does anyone else here take supplemental pain meds?

Lyn

[AHolland]

Hi Lyn, err Willow.

Quite a few SCI patients use pain medications in one way or another. I don't know the numbers, but I would'nt be surprised to see 50% of the people on these forums taking pain killers either regularly or as needed.

I certainly live in the pain department and use both Fentanyl and oxycodien. I am now using the Fentanyl patch every second day (instead of the usual 3 days) and the oxy above that as needed.

Others here probably use drugs like morphene, percoset (codiene/tylenol based), pot, etc. It would be interesting to have a poll as to how many of us are on drugs full time, part time, never, and the types. A lot of the drugs can become addictive, but it's that or pain. It's my feeling that too much pain can interfer in both quality of life and the healing process in general. Treat the pain for now, heal up and then walk yourself down or off the medications.

A large number of us also use baclophen as do I. I do find that as my pain goes up, so does my spasticity. I am on a fairly low dosage of baclophen as I try to keep my legs a bit active (they like to run around by themselves...lol) and I just hate taking any more chemicals than I have to.

[Joed]

Hi Lyn...

I take Methadone for my pain and Lortabs for breakthrough. I also use Lidoderm patches occasionally.

I'd like to think that I won't need the pain meds indefinitely, but it's very probable that I will. Still, I try to keep it at a good balance....as long as I can function in my everyday life, even with some residual pain, then I'm doing okay.

[knowthill]

I am T6/7 and just had my 11th anniversary of the car accident. From day one pain has been one of the biggest problems. Trying to explain the pain to someone not in our situation is not possible. There is a constant pain from by burst level down to the tip of my toes. Because of adduction problems I have I do not use the types of Medication mentioned. And because of extreme spasms I just became eligible for a Baclofen Pump.

For pain I can not take anything but Tylenol (Acetaminophen) Extra Strength 500mg as needed. And just keep my mouth shut about the pain. Not to give any bad news but even now the pain is chronic and extreme.

Jeff

[AHolland]

Hi Knowthill,

I know what you mean about trying to explain the consequece of having pain continuously. A lot of people give me the "well either try something different or you'll just have to suck it up." About then I want to jump down their throats and pummle them.

My only answer is that I am trying different medicines (obviously) and doing all I can to search other forums to see what other people are trying. There is no "suck it up". Gee why did'nt I think of that... If I could suck it up, I would. Unfortunately the pain is there 24/7/365 and eventually it wins the race. I am borg, you will be assimilated...resistance is futile...

I'm having another bad day so I might be a little caustic right now. Not at you, just the world in general. I'm terribly frustrated at my insurance company who thinks I should be able to suck it up and go back to work right now. I would make a wonderfull employee given all my issues, pain being just one of them.

Getting back on track. I think it is important to try different medications and combination of medicatins until one can be found. Unfortunately that may take a long time and from what I have read, it may never happen. Now that's a happy thought. Still I persist.

We are some much individualistic that what works for one person may not work for another. You can get a general idea of what people have tried and what works, but there is no guarantee that it will work for you. Here is a brief, uneducated, route that people usually take in trying to treat neuropathic pain.

Try nerve dampening agents such as Neurotin, of tygertol
Try Pain killers along with the nerve dampeners: codeine, morphine etc.
Try higher level pain killers such as Fentanyl,
Try higher level pain killers in conjuntion with antidepresents such as amytriptyline (not sure I typed that AD right)

I am not sure what comes after this. I know that if the pain becomes bad enough then some people have the nerve endings cut completely to isolate the pain. This of course is a one way trip and in my opinion will make any future recover that much more difficult, should a cure ever become available. I know of one person who had his legs amputated in order to stop the pain and as the legs were dead weight he would prefer to be without them. I sort of shudder to think of the mindset of a person who went this far, but I guess if the pain gets ahold of you enough them any relief is welcome.

[willow]

Well it took a while but between me and my neuro. I think I am going to give MS contin a go.
He first suggested a fentanyl patch. That made me a bit nervous. I have heard of rare fatalities and then after I did try it and it helped I heard it may be pulled. So he gave me some other meds to thnk about. Oxycontin, Methadone or MS Contin. My neck pain is gone. This is for pain from my neurogentic disease that the Baclofen pump, Keppra {like Neurontin} does not relieve. My pump doctor doesn't like the use of narcotics. My neuro. has been with me for years and knows I have tried everything willingly and am respndsible. I don't want the pain meds. I think my pain is a combo of spasticity that is still a bear {esp. at night} and the neruopathic crap. Last week my baclofen went up to 442 and my Keppra was increased. I am now going to try the MS Contin-have for a day or two, but not as ordered. Been taking it either at night or am-still anxious about taking it. Was told to try it every 12 hours for a while consistently to see how it works. I walk better with my Baclofen pump, now it is the pain. I want to be more active and the pain is now weighing me down too. Hoping to decrease the pain meds as Iget the spasticty under more control and my body in better shape. I always got to try and have hope. Lyn

[peleuno]

Wish I could respond to the last post, but my prob is a bit different. T-5 complete for 23 1/2 years. Didn't feel narry a whisper of any sensation from T-5 down for the 1st 17 years, spasms were totally controlled with 80mg of Baclofen.

6.5 years ago got the 'rod of life' stuck where the sun don't shine in order to stimulate me & extract sperm, wife & I did the in vitro thing & were blessed with a daughter our first try. When they turned the juice on with the rod in place, I felt uncomfortable & pressure above my line of feeling but felt nothing below T-5.

Not to complain, but 2 months before my daughter was born I started feeling pain, the headquarters of which is where the sun don't shine and it emanates up my back and down my legs. At its worst, it feels like my butt hole is being torn in two & I'm being split in half.

I took neurontin, nortriptyline, oxycontin, fentanyl & dilaudid for breakthrough pain for 5.5 years. Got off the oxy & fentanyl 6 months ago & reduced the neurontin from 3600 to 1200mg/day and reduced the nortriptyline from 100 to 50mg/day. My pain is greatly increased but I'm not a zombi anymore.

BUT, all that to say that my spasms have now become a problem. I live on the edge of a spasm-a twitching nose hair can send me off into spazville which, of course, stirs the hornets nest of pain. AND, I'm exhausted all the time-nodding off in the middle of work. I'm currently taking 120mg/day of Baclofen. My neuro has asked me to consider getting a pump. He says we can take care of the spasms & I won't be exhausted. He also says we might consider putting some painkiller in the pump.

I would appreciate any comments on the B-pump & any experience out there with morphine in the pump?

Thanks, peleuno

[TE50]

Hi i am a T11-T12 injury incomplete post 8yrs, from surgery not an accident. The last two yrs i have had severe nuropathic pain which i think is skin hypersensitivity related. Basically from my pelvis down to my feet i feel as though i am on fire.

I am on the highest dose of nurontine, 100mg of edep, 100mg of baclofen, 150mg of dantrolene and two panadol every four hours and i am not feeling any releif. I have tried some oxycodone and tramadol with no improvment.

I have been told by my the spinal doctors that narcotics will most likely have no effect on this type of pain so i haven't tried any to date. I have to take valium and sleeping pills to get some sleep at night otherwise within a couple of days i am a trainwreck from no good sleep.

Sorry for the rant, just feels good to discuss your condition with people who can relate to it.

[knowthill]

As a T7/T9 Paraplegic from a car accident a little over eleven years now my spasms became so sever I became the first person in my area to received a new style Baclofen pump in September. After two weeks I returned to my Nero surgeon to find I had spinal fluid leaking and had to have a second operation. At this point I was put on a minimum dosage until they knew they had my pump installed correctly. I returned to the Nero surgeon two weeks later and to my relief they seemed to think the pump was now working and upped my dosage slightly telling me to now go to my regular therapy Doctor for further adjustments.

Last Tuesday December 06, 2005 I meet with this Doctor and had my dosage increased. I still take all the same oral medication (Valum 15mg daily, Tizanidine 6mg daily, Macrobid 100 mg daily, Baclofen 60mg daily, Amitriptylin 25mg daily, and Neuronton 300 mg. daily). However the pain has increased severely.

Now the Doctors believe they did not leave enough play in the tube going from my pump to the point where it is inserted in my spin and this is causing pressure on my nerves every time I move my arms. Because this is so close to the Christmas season they are not going to do anything about it until after the first of the year.

I still believe this system will eventually help my quality of life, I just had to tell my story of the journey to this new experience. I maybe an optimist because hope is the only thing I have in order to endure these set backs.

Jeff

[AHolland]

I always hate to read posts like this because it means others are in as much pain as I am. It's really bad to think that others have days where they just hope to survive to the next one. I go for days waiting to go to bed because the only time I am out of pain is when I sleep. It's pretty scary because the day may come when all I will want to do is sleep....and not wake up, if you get my drift.

I'm still on the 75 Fentanyl patch and some oxycodeine. Add to that Amytriptline at 100mg-125mg and more recently Lyrica at 150mg or more as I see fit.

I tried different levels of Amytriptiline up to 125mg. At higher levels there is a bit less pain, but the constipation that is comming with it is not worth it. I'm going to work my way down to 75 mg and see how the bowels like that.

More recently my doctor has put me on Lyrica. Lyrica is a new drug made by the same company that makes Neurotin. My understanding is that Neurotin works at the nerve ending where Lyrica works at the brain level. So far the lyrica does seem to work to a degree. I have only been on it a few days. It really makes me sleepy. So much so that I find myself catching a nap each day. It is supposed to take at least a week or more to settle in so I will let you guys know as I take it for longer periods of time. So far I still have pain, but not as much. I'm still not a happy camper but less of a grouchy one.

[Joed]

Hi josiejose...

Here in the US, methadone is given in tablet form. The herion addiction clinics use the liquid form...I'm not sure of the reason for that difference...other than controlling the potential abuse for it, making it harder for the recovering addicts to get on the street. (?) Methadone has given me back my life, but every one is different in how they respond to various meds.

I've had two tethered cord releases, and in looking back, I wish like hell I had never let them operate on the first one. It's been a downhill slide ever since, and the thing is, I was symptom-free at the time. They convinced me that I would end up totally paralyzed if I didn't have the cord release surgery. But what they don't tell you is that the surgery itself will almost always insure the need for another surgery down the road, usually in 15-20 yr. cycles, although I've heard of cords re-tethering within a year. Yours must tether quite quickly, considering your age and the number of releases you've had.

I'll refuse the next cord untethering and just take my chances. This last one paralyzed me...the one thing I was trying to avoid. Wouldn't it be great if they could just figure out a way to inhibit the formation of scar tissue post-op? I'd be the first in line for that trial.