new member scared & in pain

[wildfire1385]

I am a 39 year old female who has a spinal cord disease called syringomyelia. I have a cyst in my spinal cord that is not supposed to be there, and it is causing pain, numbness & weakness in my shoulders, arms and hands. For the past four years I have had reoccurring pain and recently I have taken a turn for the worse. The pain has become so severe I am just crying in agony. I am taking neurontin, elavil & oxycodone (for breakthrough) but it seems not to help very much. I told my husband I feel like my left arm is on fire and I am in an electrical outlet. It is up and down. I am scared for the future because I don't know how I am going to be able to live with this. (I have three children to care for) I am hoping some of you may be experiencing what I feel and can give me helpful suggestions for what I can do to relieve this agony. What can I suggest to my NS? I am trying to stay positive and relax with heating pads and reading, but I don't know how to fight this. I know another wave of pain is going to hit soon and I want to be ready for it. thank you all so much.

[maryonwheels46]

Welcome Wildfire to CC. Sorry to here you have syringomyalia. It's a tough one. First of all, how long have you been on your meds? When were you diagnosed? Your pain is a lot like most here in CC.

I understand your feeling of being plugged up to electricity and the numbness. Your on some strong narcotics but it does take a while for Neurotin to work. If it does at all. What mgs are you taking?

I can't answer any questions now because I need to know the answers I have asked. You are at the right place here and will find many people that can be helpful. Pain is the most horrible thing to deal with. I am a T8 paraplegic. I stay in pain. God bless you and your family and hang in there. You do have plenty to worry about with three children.
Mary

[wildfire1385]

thank you mary for making me feel welcome. I was diagnosed with syringomyelia about four years ago. C6-7 I have been taking neurontin & elavil for three years, and I am on a max dosage, so they cannot be increased. For the most part they keep the pain at bay, but it is never really gone. The "new pain" I call it, is incredible in its intensity. I feel like a baby when it sets in, and sleep is the only thing that gives me relief. The oxycodone doesn't seem to take the edge off the pain, but it does knock me out so I try to only use it in the evening. It is the only narcotic I have used, besides vicodin. I realize it is difficult to come here and ask questions, when everyone is different in their own pain, but I feel desperate. I don't know what my NS is going to do with me. He told me (and he is highly respected NS) that he would not touch me, because I am too risky. and basically there is nothing any doctor can do for me. So I am here trying to find a formula that can work for me, and hopefully others who read this will respond and share their advice & views also. I hope this info helps mary, thank you.

[metronycguy]

what is your dose of neurontin? are you taking it 4 times a day? you need to get to a pain management doctor. neurosurgeons do what they do good, but pain management is it own specialty. lyrica may work better for you , it is like neurontin
have you tried ultram/tramadol? it works pretty well with my neuropain, works well in conjunction with neurontin and elavil.
i think i am the only one here where sleep is the worse for me, if i fall asleep in a chair the pain wakes me up, if i don't premeditate before sleep time , i will be up and out of bed with pain.

[rfbdorf]

I agree with Metronycguy - if you haven't already, see a pain specialist. They are much more likely to be able to help you.
- Richard

[David Berg]

Pain specialists come in different "flavors". Unfortunately, there really isn't any one formal specialty, you have to find someone who simply has made that their own focus. Sometimes it's a neurologist (but usually not a neurosurgeon), sometimes a physiatrist, or an anesthesialogist, or even just your GP. It may take some digging to find the one right for you.

[wildfire1385]

I have been to a pain specialist. I was given injections and when I told my NS this, he adamantly told me not to do that. He said it was dangerous for me, and was angry that the neurologist had done that. My neurontin dose is 600mg x 4 a day, my elavil is 150 at bedtime. I have not tried the lyrica and at my last NS visit he suggested it, but did not prescribe it. I am wondering if it is because I have been on the Neurontin so long, maybe it is hard to switch meds? Is it a good medicine for pain? When I had tried to lower my neurontin dose in the past, my arms began to ache terribly. So I know it is working, but maybe it is not enough. I have not tried ultram or tramadol. are there any strong meds for breakthrough pain that do not knock you out? I need to take something for the daytime that does not leave me spinning. thank you all so much.

[razzle51]

wildfire have you been to www.asap.org . I have SM/CM too. Do you have chiari also . Pain specialist would be good or maybe you just need to up your meds . Go to www.asap message board and there are alot of good people there to help. Roz

[wildfire1385]

thanks razzle I will check it out. I am still hoping to hear from others.

[maryonwheels46]

Wildfire, I'm glad you are getting some information. You will be very welcome here at CC.
Mary

[mike]

Wildfire, I was told my physiatrist that Neurontin's benefit will peak out at a certain point while lyrica will still provide potency. Might be worth giving it a try. I have found it helpful when I changed over.

Have you tried another NS opinion. Perhaps untethering surgery would help you. They do this at Craig hospital in Denver and I understand are very successful with collapsing syrinxs. Dr Falci who has a nurse who assists him and arranges appointments might be helpful if you call her.

[firesmurf]

I do feel for you wildfire,and welcome.we all kind of feel the same thing and the same feeling of helplessness as you do.we are at the mercy of this hidious pain,but we do not have to succumb to it or let it take over our lives completely.you have ALOT of options ,really that you have not even tried yet.first thing is to get to a real pain management specialist.if your NS feels that injections would somehow be a dangerous thing for you,ask him why.and then follow up according to that.have you ever had a second opiion on this?has this been pretty much the only NS you have been getting your info from all these years?different NSs have sometimes BIG differences in what they 'feel" is and isn't inoperable.i saw three seperate NSs for my cavernoma that was inside my cord at the c 7 t 1 level and got very very differeing info from them as what my risks were and whther or not i could actually have this removed from my cord or not and not end up paralyzed.i saw the third NS at the university of MN for basically a 'tie breaker" type of opinion.have you gone to any teaching hospital that may possibly be in your area,even if it is a couple hours away,it is worth just seeing another NS there.they usually see the worst of the worst type cases,and those who have been given no options in the past from other NSs.thats really where i was at with my cavernoma and the pain.

i would really seriously consider dropping the neurontinall together and trying something like lyrica.lyrica was the only med i tried that really had any effect at all on my RSD and central pain.unfortunetly because of the side effects that i had with this i had to give it up.but i have heard others here and other places who have wonderful results with it.neurontin never did squat for me at all,absolutely nothing,and i stayed on this for two and a half years mostly because i wasn't aware of any other options.there are also many other meds like neurontin that can also be tried.also being on a long acting round the clock type of oxy would probably help you much more than taking just at night time.you just DO have some options here that you can try to calm down your type of pain.its just a matter of trial and error to see what will work for you.

i also have had much better luck in treating my RSD and the central with more of the "outside" treatments,or topicals?have you ever tried the lidocaine patches or the gel?the patches i use for the 'hot spots' i will sometimes get that just start jabbing me put of nowhere out of the blue.they do help minimize the intensity of the overall pain.also,trying prudoxin cream? this is actually doxipin cream?my physiatrist started using this on me almost right away when i was transferrd from the surgical hosp over to the rehab hosp after my spinal cord sugery.you just apply the cream over that area a few times a day and it actually appears to lessen the overall intensity and sensitivity this pain has.i have no clue why it works,it just does.these are just some things that you can try that you don't have to take orally and are quicker acting too.unfortunetly,this type of pain historically does not respond well to narcotics but the narcotics can help with the more structural mechanical type of pain that is most tlikely going on inside your c spine during this.

but you DO need some other good experienced knowledgable NS opinions on your situation.i couldn't believe the overall differences i was hearing with different "specialists" as to what i was really looking at and what they could and couldn't do for me.also,going to a real pain management clinic with people who really do understand pain,and your type of pain would be much much better than seeing any NS for pain control,really.you need to tap into these other sources in order to obtain the best possible treatments for yourself.they ARE out there.i do wish you lots of luck with this and can get some better pain control options for yourself.good luck and please stick around.sorry you have to be here tho.Marcia

[JonnyC]

Sorry to hear you're in so much pain.
Oxycodone is one of the strong narcotics but it may be worth trying some of the other stronger ones.
I think you have a choice of Oxycontin (which may be the one you're on now), Methadone and the one that some of us have been discussing lately called Morphine Sulphate.
I'm on the latter and have tried all at some point or other.

Go seek out a Pain management team and see what works best for you.

Good luck.

[David Berg]

Wildfire, I just realized I missed when you posted your dose of Neurontin. That's a pretty low dose compared to what a lot of people take when they're using it for pain. There's a supposed max of 3600, but it's common for folks to go well above that when they're taking it for pain if they can tolerate the effects. It's worth considering before you give it up. Also, some folks notice a dramatically better effect from the name-brand version over generic.