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One step forward, two steps back
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foreversore posted:
So, I had an appointment with a neurologist today for an EMG and supposedly a consult for a spinal cord stimulator. Well, the Neuro my primary doc sent me to doesn't do pain management of any kind. No pain pumps and no stimulators. She did do the EMG of my legs and she redid my right arm which I had had done 2 years ago with a negative result. The good news is that there is no nerve damage in my legs from the discs pressing on nerve roots (or at least none yet). However when she redid my arm, I have a pinched nerve in my right elbow and she is referring me out for surgery on that elbow. She is also going to refer me to one of her colleagues for the consult for the SCS. Now to wait for the phone calls with the referrals.

Still no pain meds so still suffering but I am trying to be optimistic and hoping for relief soon.
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ctbeth responded:
Hi Jenifer,

Well, the good news seems to out-weigh the bad.

In my geographical area, neurologists, not neurosurgeons do the EMG testing.

I would guess that she's referring you to a neurosurgeon for the SCS consult.

Will your primary care MD or neurologist, or even neurosurgeon PLEASE refer you to a pain management MD!

Your positive attitude is inspiring <3

Keep in touch,

CTB
 
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foreversore replied to ctbeth's response:
I've already been to pain management and all they did was epidural steroid injections and even though he made me permanently worse he wouldn't do pain meds for me....he sent me back to my primary care. I feel like a hot potato...this next neuro I will be seeing will be doctor #9 I will have seen for my back issues.
 
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tdgibs responded:
have a spine a cord stimulator, no help at all, 90 % of the people i have talked too, they had no luck with them. but others, they say they work well. the only thing that helped me, was my pain pump, but it took my doctor over 9 months, to get it set right. but now i am having problem with my pump. the best thing to do, is find a good pain management doctor, that puts in the stimulator and pain pumps. he will be able to tell you which one would work the best for you. but, you can have side effects with both. just don't jump to fast, know what you are getting into. i have suffered for over 13 1/2 yrs. with failed back problems. and over 7 back surgeries. try other doctors, you will know, when you find to right one. and keep praying to the good Lord, the lead you to the right doctor, that will help you in your needs. read in your bible James 5: 14-15. hope this helped you.
 
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ctbeth replied to foreversore's response:
Holy s**t, Jenifer.

Are you going back to the PM? Not the NP, but the MD?

I remember reading about the epidurals, I think. Am I correct that the lumbar was horrible for you and the cervical did nothing?

It doesn't make sense, Jen, that the MD is convinced of your pain to inject into your epidural space, but not in pain to medicate you.

I'm frustrated and angry for you.

Since you have a FM diagnosis, do you have a rheumatologist? How can all these MDs be involved, but none will properly medicate you?

I wish that I was an MD so I could drive over (or fly depending upon where you live) and write you a prescription for whatever you need to get you some pain relief.

Wouldn't it be something to have a pain management MD who actually knows what it feels like to live the way we do?

Please keep in touch. I am concerned about you and I am disgusted about how you're being treated.

I had an awful time during the first two years after my accident.

The insurance company's attys claim was that I had a pre-existing spine issue and that a normal spine wouldn't have incurred the same damage.

It took a long time for me to get the care and pain management that I needed. When I read your situation it takes my mind back to that time of my life.

I am taking your situation very personally as I know your frustration and fear.

I wish that I could help you
 
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foreversore replied to ctbeth's response:
Yep, Beth it sucks I have seen an occupational specialist, 2 ortho spine surgeon, rheumatology, my regular doctor, pain management and now neurology (Those are just the docs, I didn't count the NP's). They all know what kind of pain I am in and not one will prescribe anything other than Norco which to me is like taking a sugar pill so I refuse them. And yes pain management DID make me worse and still he refused to medicate me. I am going to call my primary's office tomorrow and let them know he made a mistake in the referral and see if they will give me something to get by until I can see the other neuro. Now I am sure why you can see why I was in such despair for so long. I am trying to hold out hope that the next neuro can help me....it's all I have left to hold on to. If that doc tells me that he/she can't help me I have no idea what I will be able to do other than turn to illegal street drugs which I really don't want to do since I still have a 10 yr old at home.

tdgibs, I appreciate your input. I know that nothing is guaranteed to work but at this point in time an SCS or pain pump are my only remaining options. I have had fibro and lower back issues (mild scoliosis) for as long as I can remember, and then when the DDD hit my entire spine in full force I have REALLY been suffering and under medicated for the last 4 years. It also doesn't help my back that I have cartilage deformities in my knees causing me to be knock kneed which has caused a lot of hip/knee/ankle issues and now right shoulder issues too...I am just grasping at straws and jumping at any treatment options since all I have tried so far has failed. I will discuss with the neuro a trial of both to see which is the best fit for me.

I am going to try my best to be positive and hopeful and not despair until every single option has been tried.
 
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MattyB13 replied to foreversore's response:
Hey there, can I ask why they wont prescribe pain medicine? Why wont your primary doctor help?
Hope you feel better
 
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foreversore replied to MattyB13's response:
For one I am on Medicaid and for 2 unless you have cancer or a severe injury they usually wont prescribe anything other than Norco and for me Norco is useless....
 
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MattyB13 replied to foreversore's response:
That sucks. I'm worried because I may need to see the pain doctor that kicked me out of his office while on fetanyl because workers compensation was acting up. So sorry for you and I really do hope you feel better.
 
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ctbeth replied to tdgibs's response:
tdgibs,

Have you performed, or read, a survey to say that 90% of people...have no luck with them?

Have you surveyed more-than 90 people to make this conclusion, or is this just embellishment or an opinion?

If a particular modality is not right for you, this does not mean that it is not helpful for others.

A trial is required before a permanent unit is implanted. The potential candidate will have an opportunity to feel the sensations before making a decision.

If it took your MD over nine months to get your pump set right, did you have the company rep. adjust your settings on the SCS before deciding that it does not work for 90%?

What, may I ask, was your problem with your SCS?
Did you have it explanted?
Did you have a trial? If so, how was the trial?

Which company's SCS did you have?

The benefit of the SCS is that it it not a chemical process; the "pain pump" is filled with an opiate solution.
 
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ctbeth replied to foreversore's response:
Hi Forever,

You really have been hopeful and have not expressed any form of despair or self pity.

I think you're holding up like a champion, but that's not going to help. I want you to know, though, that you do express yourself very well.

This is just awful!

Is this PM that you'll be returning the same one who did the epidurals?

This is the worst part- that he/ she knows that your pain is real or he wouldn't have done the epidurals. Your pain syndromes are very real and you have objective evidence of this.

Did the rheumatologist refuse to write you an RX, or was the problem that the other MDs all want your PM to prescribe?

I'm sure that you've thought of just about anything that any of us can suggest, but I'll try.

Maybe if your husband accompanies you to the PM appt and explains to the MD just what is going on and how he watches you suffer.

Are there any fibromyalgia support groups in your area? If so, maybe the persons who attend this kind of group can refer you to an MD who is compassionate about fibro.

Do you visit the Fibromyalgia group on Web MD? They may have some good suggestions.

Even if it's the discs, not the fibro, that are causing you the worst problem, the pain med, if you can get something, the pain med doesn't know which pain it's treating, right?

You have my email address. Write any time. If you'd like to have a phone call, I'll give you my number.

Sometimes having someone to talk to- even just to vent- can help.

I'm a very good listener.

I keep you in my thoughts and prayers.

Bet
 
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foreversore replied to ctbeth's response:
Oh, Beth I have definitely been in the depths of despair and after the news I got today I am back on the verge. The neurologist I went to yesterday had her colleague review my chart. I was told that I am not a candidate for SCS or a morphine pump. They suggested that I go back and do all of the same things I have done before (PT, injections and meds I have already taken and failed). So now it seems my ONLY hope is my primary care doctor. I just had a very teary conversation with his nurse. She is gong to have him completely review my chart including the notes from the specialists and then call me back with what they want to do to treat me. I likely wont hear from them until Monday and I swear if all they wanna give me is more Norco I am gonna scream.

What little bit of hope I have is fading fast but I am trying so hard not to let it go. If I can't get the help I need from my primary care I will absolutely be crushed. Chronic pain has completely taken over my life and I have been fighting so hard to try to get even a little of it back, but I am tired.

I wish it were easy to just find a different set of doctors to see but in my state with Medicaid to change doctors requires a lot of paper work and hassle and it wouldn't be wise to change primary care docs in the middle of a disability determination case.
 
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lorigibs40734 responded:
I had this same problem back in 2006 when I was diagnosed with carpal/ cubital tunnel. The worker's comp doctor sent me to a neurosurgeon who recommended physical therapy but ONLY for my right elbow, where the pinched nerve was. It didn't help any and they prescribed Lyrica for the nerve pain. That only made my elbow tingle worse.

I've had 8 EMG's over the years since, but the last time w/c sent me to get an EMG by one of their neurologists, the report was clean.. didn't even show the carpal tunnel. That in November 2008. The neurosurgeon said he couldn't help me anymore, not that he did anything in the past, but while he said that, I had a muscle spasm that went all the way down my arm, and made the fingers of my right hand clench, not a fist, but they got stiff. I asked him about that, and he said that "according to this report, that shouldn't be happening." To which I replied, "well, I can't MAKE it do that."

The worker's comp case was closed in December 2008 on his recommendation.

In May 2009, I had carpal tunnel release, and they "moved" the ulnar nerve to see if that would help get the kink out of it where it was pinched so long, thanks to my own doctor who sent me a great ortho at Lexington Clinic.

I still have the pain in my elbow and sometimes if I move it wrong, it's like I cracked my funny bone and tingles all the way down to my pinky (which is "hooked" like and I can't straighten it or the ring finger next to it). So the nerve is still pinched and I have carpal tunnel again, but "not bad enough this time to warrant another surgery".

It's very frustrating I know.

You might can try a heating pad on it to see if that could help with some of the pain. I have an old tube sock, filled with dry white rice that I put in the microwave for 60 seconds. (I can't do anything cold because that only makes it worse). I wrap it around my elbow and reheat for my wrist. It helps some.

Hope this helps, and I hope you get some relief soon!

Lori
 
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foreversore replied to lorigibs40734's response:
I also can't use cold anywhere on my body it makes thing so much worse. My elbow/hand only has intermittent shooting pains. For the most part my pinky, ring finger and that whole side of my hand is numb and tingly. Most of my pain is caused by DDD, Fibro, and a cartilage deformity in my knees that causes hip/knee/ankle pain.

I do the rice filled sock thing around my neck a few times a day and I use Icy Hot type of stuff on almost my entire body. It barely takes some of the edge off but for right now I will do anything for even the slightest relief. I also sleep on a heated mattress pad. I am still stiff when I get up in the morning but not as stiff as I was before I had that.

I knew I wouldn't hear back from my doc yesterday, so I hope they call me early on Monday. I did some house work yesterday and as usual I over did it and am still paying the price for it today. I didn't even really do all that much. I want to at least be able to clean my house or take my dogs for a short walk without ending up in bed for the rest of the day.

My mom had carpal tunnel surgery on both wrists/hands and she had the same elbow surgery I am having on the same elbow I think. She took a long time to recover from all of it but I think that's because her diabetes is out of control. My only worry is that Fibro will extend my recovery or make it more painful than usual. All I can do is cross my fingers and hope for the best.
 
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blessedladyptl replied to foreversore's response:
foreversore,
I know this doesn't help the pain, but it might shed some light on what you're up against. http://www.cms.gov/Medicare-Medicaid-Coordination/Fraud-Prevention/MedicaidIntegrityProgram/Downloads/drugdiversion.pdf


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