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Old 04-30-2008, 03:26 PM   #1
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I saw the new neurologist today (I am 1 yr post ACDF C5-6)

Hi, All,
I posted this a few weeks ago here:

I had ACDF on c5-6 a year ago. I had been relatively good for a while (played tennis, sports). Then, I had an MRI 6 mos after surgery which revealed that C4-5 and C6-7 had small herniations. The neurosurgeon said he would not operate, just give it time to heal. It got better, but recently I have pain in the upper center of my back (below C5-6), maybe thoracic or C-7. I also have a bunch of pain in my lower back (which frankly has bothered me on and off for years but I have never had it looked at by a doctor). In my lower back, I now have sciatica and nagging moderate low back pain and butt pain.

I made an appt with a neurologist (I feel that the neurosurgeon only wants to see me if I need surgery) on 4/29 to ask about both the upper and lower back pain. I have stalled a little because I worry about having too many MRI's, X-rays, etc.

Also, I take NO pain medicine, but feel that I SHOULD. I am living with pain - anywhere from a 2 to a 7 (on a 1-10 scale) depending on the time of day (eves are the worst).

Here is what happened with the neurologist today:

He looked at my films and reports from before my surgery in 4/07 and MRI films from 11/07. He said that I still have quite a bit of osteophytes (bone spurs) from C4-7 in the 11/07 films - he said this could be a source of my problem in addition to the small herniated disks and the previous spinal cord compression (before surgery).

His recommendations:
- 2x/week PT (UGH!) for 4 wks.
- Lumbar MRI (since that area is bothering me and I have never had an MRI of that)
- Neurontin 300mg 3x/day (I'm very skeptical about this - worry about side effects and skeptical that it will help)
- Ultram (to take as needed)

He said that I have significant issues and that I should try the PT for a month and then see him again. I told him my surgeon saw the 11/07 films and said I did not need more surgery. He said something about maybe referring me to a physiatrist if this doesn't help. He also said he would NOT prescribe me any narcotics (when I told him a low dose of vicodin had been helpful before my previous surgery). BTW, I have NO history of any kind of addiction and am a professional person.

I wanted to hear your thoughts - I feel frustrated living in pain.

Thanks!
Lisa

 
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Old 04-30-2008, 08:09 PM   #2
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

In my recent visit with my surgeon, after having undergone an MRI, CT myelogram and xrays, he determined that osteophytes and foraminal narrowing are what may be causing me to have symptoms again. The osteophytes have not re-absorbed (which he said sometimes they do) and one is getting larger - so I'm going for a cervical posterior foraminotomy in late May.

I tried Neurontin but after a day or so noticed that I felt "spacey" and sort of dizzy. Same with Lyrica. But it does work for some people.

I'm not sure what the PT would do if osteophytes are the problem.

Maybe after the MRI have a consult with an orthopedic spine surgeon? My doc is an OSS and he's very good - very functionally oriented.
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

Last edited by SpineAZ; 04-30-2008 at 08:11 PM.

 
Old 04-30-2008, 10:29 PM   #3
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

Hi all - I haven't been posting much lately trying to rest of computer. I recently started back on Neurontin. I have taken it in the past with great success - although after a while had some side effects. I have take as much as 2400-3600mg for a period along with significant pain medicine. Although, those first weeks of starting taking it does take some adjusting, pain management says any new medicine needs about 2 weeks of use before you say you can't take it because of side effects.

My pain management doctor actually had a different tirate philosophy that has worked for me much better than my surgeons instructions. You might want to try this and see if you tolerate it better. I can say that Neurontin is very effective for my nerve pain - whether the origin is a compressed nerve in neck or peripheral pain. It is definitely worth a trial of it with an open mind. See if this plan might work with a slower tirate up to the dose you need to get to. It takes a little longer, but if it works that means you can take this medicine and hopefully be comfortable.

First week every night: 300 mg at bed (make sure the doses are at least 3 hours after any pain medicine) do not take them close together or you will experience the side effects.

Second week: 300 mg each (noon and bedtime)

Third week: 300mg at 10am, 4pm, bedtime

Fourth week: 300mg at 10am, 300mg at 4pm, 600mg at bed)

if you are going higher -

Fifth week: 600mg at 10am, 300mg at 4 pm, 600 mg at bed

etc.


I totally understand living in pain. I have been reluctant to take proper doses of pain medicine and instead have been miserable. I have finally given in and am trying to take what they recommend and in the past few weeks have started sleeping a little more and getting back in control of the pain versus it over me. Neurontin makes my evenings more comfortable - I know what you are talking about how night gets worst!

Last edited by PNo; 04-30-2008 at 10:31 PM.

 
Old 05-04-2008, 02:13 PM   #4
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

Thanks for posting these comments. I have now been taking the neurontin for about four days. I think it does help a little. I'm not totally sure. The first day I was quite spacey, but I am sort of used to it. I have only been taking 600/total per day. I think I am going to give it more time before I go up to 900. The Ultram helps but makes me zoned out - I can only take it at night. I am trying not to take it every day, only when the Pain is REALLY bad. I have not been taking the muscle relaxants - don't want to 'need' them. But maybe I should? I have trouble admitting I have a really messed up neck/back and fight taking meds. I feel like I don't want to need them.

Take care,
Lisa

 
Old 06-21-2008, 04:27 PM   #5
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

I can so relate to the Dr's not wanting to give you scripts for narcotics! I went through this with my surgeon.He didnt want to give me anything,It really makes me angry I was on pain med's the year and a half prior to my surgery (with no problems I might add) surgeon gave them to me till about my 3rd week post op.Thank GOD I got back in with my ortho and she has put me back on them.I have been treated like a street druggie at the ER also.I have never took pain med's until my neck and shoulder pains.I have done everything PT befor and after surgery.I

I believe we have the right to live pain free!!! If blood pressure medication was a narcotic I bet there would be no issue with getting it prescribed!! It is really sad that they don't think its important that we be able to be as pain free as possible!! Good luck..try to find a pain clinic in your area.Dont let them make you feel wrong for needing pain meds

Last edited by moderator2; 06-21-2008 at 06:22 PM. Reason: disallowed website

 
Old 06-24-2008, 08:04 AM   #6
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

One of the unfortunate risks of ACDF surgery is the possibility of subsequent herniations at the levels above and below the original surgical site. (in your case, C4 and C7) Because the fused vertebrae don't bend or flex like the other vertebrae, the adjoining levels take on new, additional pressure.

While PT won't 'cure' the osteophytes, strengthening the muscles in your neck, shoulders and upper back will give the neck more stability. The hope is that in a stronger neck, the cervical spine will be better aligned and the spurs/osteophytes won't press so much on the nerves.

I'm a little more than two years out from surgery and while I still have some problems, I find I definitely feel better during the times when I am keeping up with the exercises. I am a fairly non-active person (I like to read and watch movies and sit at the computer...) and I definitely get lazy about the exercise at times. During those 'down' times, I have more problems with pain and that 'tired' feeling in my neck.

I think trying to pay attention to posture helps, too, especially at the computer. I tend to get into that classic 'head forward' position and if I do that for a few hours -- ouch! The posture thing has been a real struggle for me, as I'm trying to overcome 40+ years of bad habits, but I know it's important so I keep up my efforts.

I also take Neurontin (400mg x 3/day) and Ultram, with hydrocodone for occasional bad, breakthrough pain. However, I recently switched from regular Ultram to Ultram ER, which is an extended release version, and, coincidence or not, I haven't had to take any hydrocodone since. (I was using the hydro maybe two or three times a month before.....)

The whole pain med thing drives me nuts, too. I took hydrocodone for at least three years before I had surgery and no one ever said a word about it. I was lucky in that it didn't make me tired or goofy or 'floaty', as I had heard some people describe it. I was taking very large doses immediately before surgery and that was the only time I ever noticed any kind of effect, and then it just made me kind of dizzy. I slowly backed off after surgery, but it was a good six months or more. I had to quit suddenly when I developed a 'toxic liver' reaction acetaminaphen, which is included in oral narcotics. (hydrocodone, Vicodin, Percocet, Norco, etc., etc., etc.) A hydrocodone 5/500 is 5mg of narcotic and 500mg of acetaminaphen.

When that happened, I was the one to notice the problem and I immediately stopped taking the hydro. I saw my primary care physician and told him what was going on and he agreed and said just stop taking it for a while.

Well, a few weeks later I saw my surgeon and told him what had happened and you would not believe how it chenged my entire relationship with that office. Despite the fact that I was the one who had identified the problem, and that I had immediately stopped taking hydro, and that I was sitting there telling them about it, they immediately labeled me as "drug seeking". From that point on, everyone was very curt with me, to the point of rudeness, and any time I talked about having pain, it was dismissed.

I started taking Ultram for pain but it didn't work as well, especially on the peripheral nerve pain, as the hydro had. When I told the surgeon's offcie this, they asked - seriously - if I didn't just like the hydro better because it made me "high".

I.....was......FURIOUS!

Told my PCP about all this and when he saw the dosage and directions for the Ultram, he said, "This is ridiculous. This isn't enough to do anything for you." He doubled the dosage and increased the frequency. I told him that the surgeon's office thought I was a druggie and he got furious, too! He even offered to call them for me, but I told him I just appreciated someone being reasonable about it all.

I only just, maybe two or three months ago, started occasionally taking hydro again, and that is in small doses. I admit I was freaked out by the liver thing and worried about taking it again, but both my PCP and (new) physiatrist said it would be OK in small doses and to just see them if I had a problem again.

It's just crazy that I hear about so many people taking narcotics recreationally, or people who are addicted to them and who get them from dozens of doctors, yet on the other hand I hear about so many who have genuine pain and can't get relief because their doctors think they are just looking for drugs. It's all so frustrating!

Did you know that the only reason narcotics have acetaminaphen in them is to keep addicts from abusing them? The physiatrist told me it's a deliberate effort by the government to hinder those who abuse those drugs. Although I doubt that liver disease would stop a hard-core addict. Meanwhile, that same unnecessary acetaminaphen keeps millions of people with real pain from being able to achieve the relief they need.

OK, enough soap opera and soapbox from me! I'm sorry! Because of my personal experience of being labeled "drug seeking", I'm very touchy about the whole topic!

The Neurontin doesn't always have side effects - varies from person to person just like everything else. I don't have any problems with the dose I take -- my husband, who weighs twice as much as me, felt "drunk" on a smaller dose and couldn't continue with it. Some people who can't tolerate Neurontin do better with Lyrica, and some vice versa. I tried Lyrica and it made me stupid. Back to Neurontin for me!

Hopefully the Ultram and Neurontin and the PT will be of some help to you. There are many here on the board who are "two-timers" - those who had to have two ACDFS, but I'm sure you're like me in not wanting to join that club!

Hope you get some relief soon!

 
Old 06-24-2008, 09:33 AM   #7
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

Ember:

Part of the reason narcotics have acetaminophen (tylenol) in them is that acetaminophen is a pain blocker. The narcotic agent works in conjunction with the acetaminophen. There are some narcotics that have ibuprofen (advil) or aspirin (percodan) instead of acetominophen. I do wish that there were narcotics without those agents in them available if it was found to work well.
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Rt&Lt thumb arthroplasty 2012 ; RT TKR & Bilat CTS 2011
Fusions: L5-S1 (87), L4-S1 (93), C5-C7 ('06), L3-S1 ('10)
C5-C7 foraminotomy 08

Last edited by SpineAZ; 06-24-2008 at 09:34 AM. Reason: spelling

 
Old 06-24-2008, 11:23 AM   #8
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Re: I saw the new neurologist today (I am 1 yr post ACDF C5-6)

Quote:
Part of the reason narcotics have acetaminophen (tylenol) in them is that acetaminophen is a pain blocker. The narcotic agent works in conjunction with the acetaminophen. There are some narcotics that have ibuprofen (advil) or aspirin (percodan) instead of acetominophen. I do wish that there were narcotics without those agents in them available if it was found to work well.
You're right, of course, in that narcotics and acetaminophen (or other pain relievers) work on different pain receptors and have been shown to often work better together than separately. I should have been more specific in saying that the narcotics are not available without additives in part because of the concern of even more widespread abuse; i.e, addicts would be able to use higher doses and with more frequency without fear of the liver damage (or the problems, like ulcers and bleeding, etc., that overuse of ibuprofen and aspirin can cause).

I'm not pushing a government conspiracy theory - just quoting the physiatrist. I can't honestly say if I know he's right or not.




Really, I think it's just the same as everything else. A drug becomes labeled "dangerous" because of people using it irresponsibly. If folks would just follow directions and heed warnings and use these drugs reasonably, there'd be a lot of things still more readily available to a larger population.

Hey, I'm just glad to currently be in a situation where I don't need the darn stuff on a regular basis!

Last edited by ember919; 06-24-2008 at 12:09 PM. Reason: boo boo

 
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