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Old 04-22-2012, 12:07 PM   #1
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Need some advice....

Hi....been here before but seems its been in bits and pieces...so here is my situation at present. I had a disectomy 15 years ago and did great for many years. This past Oct. I herniated the same disc (L5/S1). Because I did so well 15 years ago. I had surgery again. The neurosurgeon said right afterwards that he should have done a fusion because my disc was a mess....we had not discussed fusion or I guess ins. Would not have covered it...now I need to take 1200 Mg of neurontin for nerve pain in left leg and foot. I take 300 Mg. 4 times a day. I have started pt.and I think my back is getting stronger but nerve pain is still present.....so here is where I need HELP! I am going to Europe in July so I need to be as healthy as possible. Can I do anything else (oh....I plan to swim soon after.pt) to relieve nerve.pain? After my trip should I consult pain management first or a second opinion (live in eastern NC) to resolve problems. My surgeon is a fellowship trained- highly respected neurosurgeon but would like.to put off fusion as long as possible. I am 54 and in good health otherwise.....thanks in advance....I wish I had consulted you all before my second surgery....

 
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Old 04-22-2012, 09:21 PM   #2
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Re: Need some advice....

How long is your trip and how much walking will you be doing? Travel in general is really hard on the lower lumbar spine -- sitting in all those cramped conditions, bumping along, sleeping on all kinds of mattresses....I think you are very brave to be going. Maybe your situation can improve before July...but I don't know how bad the situation was and how much nerve compression you are dealing with. I got so I couldn't walk to the end of my driveway to get the mail -- I couldn't even imagine trying to travel to Europe in the condition I was in. Do you know if you have any instability at that L5 segment?

If I were in your situation, I would be getting a second opinion, perhaps this time from a fellowship-trained orthopedic spine surgeon...knowing me, I'd be getting a number of opinions...but that's just me! I always think it makes the most sense to determine who you would go to IF you suddenly needed emergency surgery. Once you have determined who you want to do your surgery, then I think you go to that doctor and let him manage your case -- by that, I mean let him diagnose you and guide you in how you should proceed if surgery is not yet an option. Usually a surgeon will have one or two PM or physiatrists that he works with and it keeps the care more coordinated that just picking people randomly on your own. There are exceptions to this...but for the most part, I think this is the best way to manage your care.

You might want to discuss your trip with your surgeon, since he is the only one who has actually seen the condition of your spine with his own eyes. He may want to give you a Medrol pack or something to take on your trip just to make you a bit more comfortable.

 
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Old 04-22-2012, 11:45 PM   #3
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Re: Need some advice....

I have a few things to add to the excellent advice Teri gave. You should ask whether some additional medications might be helpful to take with you on the trip: something for breakthrough pain, maybe a muscle relaxant, as well. I would also ask whether 1200 mgs of neurontin per day is sufficient and how to taper up if you need more while out of the country. (I just started a titration regimen designed to get me up to 3600 mgs per day. I'm also going to have my kidney function tested regularly, since this is a large dose for my body weight. I'm tallish, and my BMI is 25.4, so four pounds over where I should be, but not a huge person.)

You could consider a back brace (like a waist trimmer for exercise) to wear while on the plane or if your pain gets really bad. This would help your posture, but you have to balance this with the possibility of your abs weakening if wearing it all the time. I would also take a small pillow and place it in the small of your back while sitting. And, of course, get up and stretch a lot, don't lift anything into the overhead bin.

I think Teri mentioned a book in other posts -- something like "Heal your back", which has techniques that could help you hold off surgery longer. Some people have had success with Pilates. A regular massage with a careful practitioner can help, too, once your stitches are totally healed. For now, if you have nerve pain, you could have them avoid the lower back and spend extra time on areas with nerve pain. Maybe acupuncture would help, too.

You said you were going to start swimming: if you are a good swimmer, the one technique I can recommend to get your abs in the best shape possible is to find a deep pool, where you can't touch bottom. Rather than treading water with an egg-beater style kick, use a flutter (freestyle/crawl) kick. This will avoid hyper-extending your back, the way that using a kickboard would. Our coach made us do increments of thirty seconds with no arm involvement (fingertips out of water), then up to the elbows out, then arms overhead. Warning: this is really, really challenging. The regular treading water, using your arms, but flutter kicking, is a good place to start. Maybe start with three sets of 30 seconds each. Your abs should be burning ten seconds in. (If you don't have training/coaching in swimming, you might kick with your knees bent. If this is the case, this exercise won't work for you.)

 
Old 04-23-2012, 09:19 PM   #4
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Re: Need some advice....

Thank you both for such wonderful suggestions (by the way...how do I thank and hug you on this site?). To answer some of your questions....I am going to visit family in Europe for 10 days but we are renting a home and a car. Hopefully that will help some ....I am able to walk for 30 min 2 times a day so maybe I will be able to hang with the others. As for my plans after my trip.....it distresses me the surgery in Dec. Was supposed to fix my problem....I forgot to look over your surgery past...have you been successful with fusion? Many I havetalked to have not been any better off. Is fusion the only option for my nerve issue? Would a Nerve block/injection be an option short term? Also..vitamjns were mentioned in another post....do u mean a multivitamin? I do take one....sorry for all the questions....you both are great!

 
Old 04-23-2012, 09:25 PM   #5
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Re: Need some advice....

Oh...I forgot to tell you that both the pa and surgeon agreed that I was able to take this trip but I will call for extra Meds etc...

 
Old 04-23-2012, 10:26 PM   #6
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Re: Need some advice....

Oh that makes a big difference if you are visiting family, staying in one location, etc. I envisioned you on some grand tour, maybe riding on a bus or train, changing hotels every night or two!! (I have a vivid imagination! )

Nerve blocks are often just done for diagnostic purposes. If it turns out to be effective, then there is a procedure where they can desensitize the specific nerve called a rhizotomy or ablation. You will hear it described as nerve "burning", which makes it sound scarier than it really is. When it works, it can be effective for several months, sometimes up to a year or a tad longer. But it can only be done in certain cases. Depending on where your nerve pain is coming from, it may be in a location where this would not be possible...it all depends on what is causing the compression.

The B vitamins are good for nerves.

 
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Old 04-23-2012, 10:29 PM   #7
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Re: Need some advice....

SweetPea -- I have a question about the treading water. Are you talking about being upright in the water, like the "regular" way one is taught to tread water, but moving the legs forward and backward like scissors (with the legs straight and alternating the legs)?

 
Old 04-24-2012, 12:24 AM   #8
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Re: Need some advice....

Exactly -- I was the kid who decided to see how many sit-ups she could do without stopping and got bored at 1000. But, kicking like this (especially arms overhead) would make my abs burn, even back then. You don't have to worry about the hyperextension that comes with holding your body out of the water on a kickboard. I would definitely start out using arms to assist, and kick flutterkick only. Keep the range of motion very small and don't hyperextend the back. (Apparently, this is called vertical kicking if you want to search for videos.)

Alida's other question concerned success with fusions. My fusion is not likely to completely resolve my situation. At my four month appointment, my surgeon seemed very sad, gave me a hug, and said that folks with the best results were doing better than I was at four months. We talked about having another epidural once the fusion is solid. He sent me over to pain management to start neurontin, which has increased my twitches and decreased my radicular pain. Good signs. I am having an increase in lower back pain, but overall I am not worse than before the surgery, except for the CPRS which I am trying aggressively to get under control...

The pain management folks diagnosed me with CPRS: sympathetic and parasympathetic nerves damaged in surgery, and recommended the following vitamins for nerve healing: 2-3 grams of Vitamin C, 1-2 grams fish oil (I'm veggie, so algae oil), 500 mg of acetyl L-carnitine, and 500 mg of alpha lipoic acid. I made the mistake of starting all four supplements at the same time and had a headache for ten days. I traced it back as a potential side effect for the acetyl L-carnitine and the alpha lipoic acid, so now I need to take each one separately to figure out the trigger.

On the upside, the surgeon found a lot of scar tissue at L4-L5, which he said was indicative of long-term instability. So, now that instability and scar tissue are gone and the healing process can start. I'm hoping that I continue to improve, as husband and I want to start a family and I will need to be off the medication to do so.

 
Old 04-24-2012, 01:23 AM   #9
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Re: Need some advice....

I first had a one level fusion at L4-L5 which was successful...but it did not resolve my nerve pain, so, from my perspective, it was not "successful!"

I then had a foraminotomy at L5 which helped temporarily...and a while later it was determined that my lumbar spine was still unstable, so my rods and pedicle screws were removed from the first fusion, and it was added on at either side -- so now am fused from L3 to S1. It was a very long recovery (two years in June) but since my surgeon and I regarded this surgery as my last chance to get it right, he has been very conservative with me and I have been going about it slowly. 4 days post surgery all my nerve pain was gone...and has stayed that way. For the first year I thought I had traded my nerve issues for SI joint issues...but I was able to work through that and as I got stronger, the problems faded. I still have to be really careful doing anything that requires the least bit of bending -- gardening, housework, etc. I'm good for about five bends before lower back pain sets in...but it goes away upon resting....I can now stand and walk as much as I want -- which is a stupendous improvement over the 1 minute I could do before....I am so much back to normal that I have to remind myself what things were like before....I turned out much better than my surgeon had even dared to hope -- so, you just never know ahead of time what the results will be.

 
Old 04-24-2012, 09:36 PM   #10
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Re: Need some advice....

Thanks again for all your helpful suggestions....in your opinion...would you just "continue on" with my back as it is now? I mean my back does not hurt at all....I take no pain meds for it although I know people consider neurontin a pain med for nerve pain. I really have numbness and some stronger pain in my left hip at times. Some days are great! I can walk well on toes and heels and plan to continue pt, walking and swimming ..,....praying every night for a full recovery. Think...knowing what you know now about your surgeries...that I am better off as I am now? Maybe nerves will heal....ok, I know I am
rambling! Thanks so much sweetpea and Terry (my Kendall will not accept your name...see Geri!l)

 
Old 04-24-2012, 09:49 PM   #11
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Re: Need some advice....

If you can live with whatever pain you have, I would choose to carry on. People usually "know" when it is time to have surgery. I would figure out which surgeon you would use if you needed lumbar surgery ASAP...but, I would not rush into it.

 
Old 04-24-2012, 10:24 PM   #12
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Re: Need some advice....

Since your most recent discectomy doesn't sound like it helped with the nerve pain, I'm not sure that a fusion would do much more for nerve pain. I would talk to your doctor about any diagnostic testing that might help determine whether there is instability or disc material on the nerves. (Flexion/extension X-rays or maybe another MRI.) Then, I would ask him whether and how a fusion would solve any ongoing mechanical issues and, most importantly, whether solving the mechanical issues would help with the continuing nerve pain.

 
Old 04-25-2012, 08:59 PM   #13
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Re: Need some advice....

My surgeon explained that there just wasntt room for the nerves to be unrestricted due to calcification. (My understanding anyway).ni started having neck pain and someone explained that the spine was like dominoes?? That if one at the bottom went bad ....it had a domino effect....is this true from what u know? Finally...sweetpea...does neurontin cause drainage and congestion? It also makes me have an itchy throat. Never had these issues before and it could be a coincidence......thanks for the swimming tips....you two are so helpful!

 
Old 04-25-2012, 09:32 PM   #14
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Re: Need some advice....

There is something you'll hear called the "domino effect" which means something along the lines of once you have one level fused, the adjoining level will have more stress put on it, and will deteriorate sooner than if the person hadn't had a fusion procedure.

This is something one needs to be aware of, but it isn't something that happens automatically.

One time when I was having an epidural steroid injection, the nurse was new to the practice. We were chatting before the doctor came in, and she asked me if people ever just had one spine surgery. I laughed at the time, but I've been thinking about her question ever since.

I think once someone has back problems, he/she will always need to be very aware of the spine, of using good posture and proper structural alignment. Sometimes lifestyle choices need to be made.

I never had those symptoms with neurontin, and they aren't common...but in one individual, just about anything is possible so ask your pharmacist if they persist.

 
Old 04-25-2012, 09:45 PM   #15
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Re: Need some advice....

I'm only taking 600 mgs a day of the neurontin, but titrating up to 3600 mgs. Which seems like a lot! Mostly, I've noticed being sleepy and having some trouble focusing. I think that the neurontin can also cause swelling, particularly in the ankle. I would check the official side effects list, though.

As far as lumbar spine damage causing further pain or damage in other areas of the spine, it's definitely possible. Once one area starts to deteriorate, you start to get pain in other areas from compensation.

 
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