Question for those with multi level cervical ADR

[Lisibug]

I'm 22 months post 3-level cervical ADR (C3-4, C4-5 and C6-7), with prior fusion at C5-6.

If I tilt my head down for more than about 20 to 40 minutes per day, breaking up that time into smaller increments over the day, I get pretty bad headaches which can wake me up all night long. I fight headaches most of the time anyway, but this makes them worse. If I'm up and around longer than 1-1/2 hours, I'll need prescription meds (on top of the Neurontin I still take 3 times a day) to help with the pain. Meds I take on top of Neurontin (lately 2700mg per day) are: Vicodin, Fioricet, Soma and Imitrex. However, I am definitely better than I was prior to surgery - just wish I was better than this! I just wondered if others of you with multi-level cervical repair have similar problems and/or how are you doing?

Thanks for your help. Also, if you have any advice re: what has helped you - please advise!

[Liz]

Hi Lisa,

I have not had cervical ADR (random that I read this) so hopefully others will respond, but I have suffered with migraines for 24 years and I take similar meds.

Are you taking the Imitrex, Fioricet or Vicodin more than 2-3x/wk? If so, it may be that you are suffering from medication overuse headache. Have you discussed these headaches w/a neurologist and the meds you are taking?

I saw my neurologist recently and he reiterated that triptan meds (like Imitrex) are ineffective if taken more than 2-3x/wk and that frequent use of opiates can cause rebound headaches. I know this too well as I'll often have a few migraines a week and when Imitrex or Maxalt does not work, I'll take a Percocet to try and knock it out before I cut my head off. This is a vicious cycle to be in as you can't get rid of the migraines. I also have post-ADR pain that is difficult to manage b/c of this.

If you think you may suffer from medication overuse headaches I'm happy to send you articles on this or a google search for "medication overuse headache" or "analgesic or opioid rebound headaches" will reveal info too.

Have you tried a preventative migraine med such as Elavil, Topamax, Verapamil, or others?

If the headaches are muscle induced have you tried getting a PT to massage your neck a few times a wk to see if this helps w/the headaches?

Best of luck... sorry you are suffering.

Liz

[Lisibug]

Thanks, Liz. I only take 9 Imitrex per month. I do take amitryptiline - 100 mg at night. I also have back/leg pain and this seems to be the dosage I need to help that calm down enough to sleep well at night. I have recently increased my Neurontin to try to take less of the other meds. I try to get by on just the Neurontin every day - but most days am unable. But, the fact that I can do it some days, leads me to believe that I don't have rebound headaches (yes, I do know about them - thank you for the advice!). I probably go about 8 or 9 days per month without taking any Fioricet - if the headache is light, I'll see if a Vicodin will help (as you know, Vicodin is less effective against headaches than Fioricet). I take about 40 Fioricet per month, 30 Vicodin, 30 Soma. I think increasing the Neurontin recently is helping somewhat.

[maz]

Hi Lisa

I had a 2 level ADR I get different pains now than befoe the op including a dull headache at times, I get bad neackache especially if I bend forward , and befoe the op I could never provoke pain , whereas now I can espcially with the double chin exercise and the sergeant major pose! Its a mystery to be but like you I fell mostly I am better than before. Maybe the headaches are to do with fibro? Maz

[Sandra L]

Lisa,

I have 4 cervical Prodiscs, April 7, 2008. So sorry you are having so much trouble 22 months after your surgery, I don't like hearing that. What disc did you use and who did your surgery?

I can't tilt my head down for long either and I get several headaches a week. I was told to avoid tilting forward. I was told to use the correct position at the computer. Lower your chair until your feet are flat on the floor, place your keyboard so that your arms are at 45 degrees to your body and place the monitor so that you are not tilting your head. When reading place your book on a pillow. Try to improvise in anything you do - riding in the car, driving, paper work - so that your back is straight and your head sits directly over your shoulders, no tilting for long periods, only the natural short movements when you are talking, walking, etc. To show me how my neck felt if it wasn't directly over my shoulders, they gave me a 10 lb. weight and had me hold it out in front of me . Talk about heavy!

Was told that it would take a long time for the muscles in my neck and back to rebuild and be able to hold my neck at positions not directly over my shoulders. First thing was to stretch and then build the little muscles in the back. The exercises they give us seem insignificant, and I think we probably don't work on them enough. I'm always telling myself to lower my shoulders, don't scrunch.

I thought that after the 4 disc replacements, I wasn't going to having any problems, but am finding even after 9 mos this is not true and hearing you are having the same problems at 22 mos. is something that makes me .

I had my surgery in Germany and haven't been able to see anyone that is familiar with ADR until late December when a young surgeon in Columbus, Ohio, doing single level Prodisc-C was willing to talk to me about Dr. B and the multiple levels and look at my x-rays and pre-op MRI. He thought that the placement was excellent and that I had good movement. He wasn't able to answer questions about the post-op pain since he was just getting started and in reading had not found any concrete answers. He told me I might not get rid of the pain since he has read that some are good several months post-op others still in pain. Not what I wanted to hear.

We're going to warmer weather for six weeks and I'm going to try to do more. My husband just made a bed for me in the Yukon since I've not ridden more than a few hours in the car and he doesn't want me.

My doctor took the Lyrica (similar to Neurontin) away from me. Didn't think that would help my pain and I didn't notice any difference. I was taking Oxicodon. After stepping down on Oxi, he put me on Tramadol ER w/Tynenol and a single tram pill to add towards the end (not suppose to take more than 300 mg, interfers with repiratory system). Then down to the regular tablets. These were not helping, in fact my pain seemed to be getting worse. Asked for stronger pain meds, but he put me on Zanaflex (Tizanidine/muscle relaxer) 12 mg a day, kept me on Tramadol, 200 mg a day and tylenol 1250 mg. I am definitely not pain free but am able to do most everything with resting in between.

Harrison listed some problems with Lyrica/Neurontin you might want to search. I know nothing about the meds you are taking and what they might cause. Think you should talk to your doctor and your especially your pharmacist on all the meds your taking and how they interact. Is your doc a pain management specialist? If not it might be wise to go to one. Thats my next step if I'm not pain free after 1 year - I just can't believe we have to live with pain.

Sorry I ramble on and don't offer much. If you want to talk, pm me and give me your phone number. I never use my minutes.

Best to you, Sandy

[Lisibug]

Thanks very much for your reply - and everyone else, too. I also went to Dr. Bertagnoli. I did go to PM docs prior to my surgery and took the same meds, just a couple extra and higher dosages prior to surgery - so this 'mix' has been approved by PM docs and I run things through with my pharmacist pretty frequently. Unfortunately, Dilaudid and morphine make me sick, or else I'd be able to take a lot less in the way of meds and just take them.

Sandy, I PM'd you. I'd love to talk to you and hear what your symptoms are. I've obviously had 4 levels surgically repaired too, although one of them was a fusion. I am better than prior to surgery and grateful for it - I just wish I was better than I am. However, I am able to do fun stuff and enjoy life, friends and family, which I couldn't do before.

Dr. Fenk-Mayer recommended I have an MRI taken of my neck to see what's going on. I haven't done this or pursued any time of treatment or 'trying to figure out' where the pain is coming from. I don't really want to know if another level is going in my neck (C2-3) - so I just want to deal with the pain, which is definitely tolerable with meds and intermittent resting throughout the day. I just figure I had pretty severe problems and I have residual damage/symptoms.

Thank you, everyone! There just isn't much out there as far as how people are doing with multi level cervical ADRs, and it's helpful for me to find out how others are doing and what helps them. Maz- sounds like you're doing pretty well. That's great news. I fight headaches daily and have had a bad one for 3 days now (because I sat in a recliner 3 days ago having a 'Pride & Prejudice' marathon with my youngest daughter - the long version and then the short version) - with not enough being up and around in between. I knew that this would make me hurt and was indeed making me hurt - but I couldn't turn myself away from Elizabeth and Mr. Darcy! Sad, huh? The headache woke me up early this morning - yuk. My fibro is pretty much under control due to chinese herbal meds that keep it nil most of the time - but you're right, Maz - that is definitely a symptom of fibro.

Thanks again, everyone...

Lisa

[maz]

Oh Lisa I am so sorry about your headaches they are just pants arent they? I hope Mr Darcy was worth it which actor?? Wishing this goes for you very soon Maz x

[Lisibug]

Hey Maz, being that I saw two versions, the first was the epic with Colin Firth and the second was with Kiera Knightly (don't know Darcy's name). Both fantastic! Headache from that better - took 1-1/2 weeks, but I think maybe it also had to do with two months of overdoing it. I have to be pretty limited to keep my headaches at a point where I'm okay with just Neurontin (2700mg) - yesterday and today I failed. Oh well! I did a puzzle for a little while day before yesterday but held my head in my hand so it wouldn't strain my neck - turns out it did, anyway. Then, went to LACMA today with kids (Los Angeles Museum of Modern Art) and Amoeba Records in Hollywood - back and head complained quite a bit. I laid down in the car while the kids were in the record store after I walked them in and then came to get them and pay for their purchases...

I'm glad at least I can do this stuff now - I couldn't before. I think I have too many semi long distance outings like that planned this week, I'm probably really gonna pay for it again. Oh well! Sure am grateful for my meds...

Take care everyone and thanks for your help.

[Sandra L]

Hi Lisa,

It was so nice talking to you last week. Hope you're feeling better, know you are coping. I give you lots of credit for your up-beat outlook, keep at it .

Check builder5840 thread on the outcome section. He went to Malaysia and is doing well. Also check my thread in the same section to bring you up to date on what I'm doing.

I remember reading you make soap? For yourself and family, resale, or just for fun? Do you buy your fat? I'm still using the homemade soap my mom used to make!! She didn't add any scents so no aromatherapy benefits, but helps with the dry skin. My grandparents were farmers so we rendered lard and mom saved the grease from cooking. It grosses everyone else out if you tell them how it's made. I still wonder how the soap can be good for you when you use lye!

Am leaving next week for warm weather and hope it helps the healing process.

Best wishes and no more long movies , Sandy

[Lisibug]

Hi Sandra, it was nice to speak to you, too. Thank you! Hope you're enjoying the sun now and are feeling better... It's funny, just before I went onto this post I did read about the guy in Malaysia and read your post, too! A new friend who lives nearby had a 2 level cervical ADR by Bertagnoli yesterday and is doing well. I'm very interested to hear how the next couple of weeks go for her - hope she'll heal really well.

I'm doing okay. I have a lot to be grateful for in that I'm definitely better than I was. I talked to my doc this week, asked him to refer me back to pain management, which he has, and from there we'll probably do scans to see how C7-T1 is (had moderate to marked facet degeneration prior to my surgery) and C2-3 is (was fine). From there, I'll probably request facet joint injections and if there are any disc problems, don't know if they'd also do an epidural along with that - but hey, I'll give it all a try. Hasn't worked in the past, but you never know - it might now! If that doesn't work, then my husband said we can send me for a round of acupuncture (11 treatments - not cheap). If I could feel better than I do, it'd be great, but I've been taking it really easy for over a week and most days I only take the Neurontin (2700 mg) and it's been handling it - so that's great. However, I don't really want to spend 65-70% of the time resting. BORING! I usually do more and hurt more and take meds - that's okay, at least I can still do stuff.

I make the soaps (and jam) for gifts for friends and jewelry for gifts and I sold some for my first time (probably $1000 worth) at a couple of boutiques just before Christmas - but with the cost of the stones, pearls, beads, etc., didn't really make much. Still have a lot of stuff left over and I need to make jewelry out of the rest of it and that would then be pretty much pure profit.

I don't make soap from fat and lye - I'm not nearly that impressive. I buy soap from a craft shop, melt it, add ground herbs, oils to scent, sometimes ground kelp or something like that for exfoliation and sometimes coloring if the herbs don't give enough color. Not really anything too fancy - but fun and the soaps are very nice on the skin. I have shea butter, goat's milk, avocado and olive oil, glycerine, etc. I've been making the jewelry more lately, although have paused for about a month as I have to be careful - can only make one piece a day with my tray placed on top of tall books so I don't have to look down much while I'm making the piece and if I make more than one piece a day, I get pretty bad headaches. I copied a necklace from Ross-Simon (pearls and detailed sterling caps, etc.) - made three that are slightly different and I like my caps better and was really thrilled how they came out! Sold one and so far, wear the other two!