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  • 3 Years Post Fusion - Is This As Good As It Gets?

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    Old 12-08-2005, 11:22 PM   #1
    Rustysgurl
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    3 Years Post Fusion - Is This As Good As It Gets?

    I haven't been back on the boards in a while, but here I am again. I had a micro-d in 2001, disk deteriorated rather than healed, so had a L4-5 fusion (plates, cages, screws) in late 2002. So here I am 3 years later, still in pain. My neurosurgeon said that my L4-5 nerve root was compressed, and he believed the sciatic nerve was damaged during my initial injury. I have low back pain constantly, and if I try to do anything strenuous (for me), like vacuuming, bending and lifting, jogging, etc., I'm in severe pain for days. I've been on antidepressants since not being able to work (am on disability), and although I'm doing pretty well relatively speaking, I wonder if there's something I could do for myself to make myself better (I'm only 48). I've tried to keep my weight constant (although I need to lose some). Still, it's very hard to start any exercise regimen (and keep with it) given the circumstances. I've done the pain management epidural injections, physical therapy, pain medication, etc., route, with limited success. They even had me on Neurontin for a while, but the 'oatmeal brain' side effect was not worth any nerve pain alleviation. I hate to think I'll be like this for the rest of my life - is there anything new out there that I don't know about? This board helped me so much during all of my surgeries and treatment, and I wanted to let everyone know how much I appreciate it.

     
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    Old 12-09-2005, 05:33 AM   #2
    Quietcook
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    Hi and welcome to the boards,

    Sorry to hear that you are still having pain. I'd like to make a couple of suggestions to you.

    First, you did not say if your neuro surgeon was a true spine specialist ( that he has completed an extensive spine fellowship and he does ONLY spine surgeries and not split his time with other areas, say brain and other areas of the body where there are nerve injuries) or not. If he is a general neurosurgeon as a larger percentage are, consider seeking opinions from several spine specialists. It can indeed make a major difference in your care.

    As someone who has been through 8 spine surgeries and I am active with a 10 level fusion, I do recommend that if fusion is to be had, have a spine specialist. You still have some problems, and it is indeed possible that after this long a time the damage may be permanent, but get opinions from several good specialists. If you don't know how to check them out and locate spine specialists, I have a thread you can find on this board with the search feature. Either look for threads I have started, or by topic "how to find a spine specialist in your area".

    Secondly, not knowing your age, consider too that with surgery, you could have some arthritic changes in your spine which may add to pain. My spine specialist had me to begin taking the triple strength glucosamine and chrondroitin when I had to be off my arthritis meds as the BMP fused. It has helped tremendously, so I stayed on it with my regular doc's blessing. Consider checking with your doctor (primary or neuro) and see if that will help, but it does take anywhere from a couple of weeks to 4-5 weeks to notice a change.

    One thing you are doing though that could make your problems worse is vacuuming, especially if you are doing it the "normal" way. While in the process of my fusion healing, my spine specialist said I could only vacumm while on my knees. That hurt me worse, so I went to vacuuming on my hands and knees, using a smaller hand vac with a beater bar, or the regular vac with the hand tools. Once I could stand, he said only vacuum with keeping my arm tight against my side and no reaching out. It doesn't take long until you learn to do that, just walking every step of the way. No pulling on the lower back if the arm doesn't leave the side. My PT person had recommended I buy one of those lighter weight Oreck type vac's, and that might have helped, but this way there was no additional expense.

    Finally, some people say the patches don't work for them, but as with any medication, it is different for everyone. I use the brand name Lidoderm patches as I have not had good results with several generic medications. My spine doc prescribes that I can use up to 3 a day, which I wear for 12 hrs and get up to 24 hrs relief. Yes, it is absorbed through the skin, and your sciatic nerve is not up close to the skin, but we have many nerves that were injured with surgery. Our bodies react, and for me, these patches allow me pain free days in spite of a 10 level fusion with two long titanium rods, 18 screws and many, many cages. Perhaps you can speak with your doctors about trying these patches. They can be cut into if you are having a good day and don't need but 1/2 or 1 1/2, so very flexible.

    Hope some of this may have potential help for you. Don't accept that you have to suffer for the rest of your life. Your doc may be excellent, but there are so many ways to tackle the same problem, and each doctor has their own methods, their own limits, etc, just as wel do. Sometimes it just takes some searching to find the one that is best for you to have the greatest outcome. It took me visiting about 10 docs before I found the best spine specialist for me after having my first couple of surgeries with general ortho and neuro surgeons and not realizing that there were those who treated NOTHING but the spine. Best gift I could have given myself was searching until I found a doc that was top notch.

    Best wishes and let us know how you are doing.

     
    Old 12-09-2005, 06:22 AM   #3
    BobiM
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    [QUOTE=Quietcook]Hi and welcome to the boards,

    Sorry to hear that you are still having pain. I'd like to make a couple of suggestions to you.

    First, you did not say if your neuro surgeon was a true spine specialist (>>

    Quietcook, who did your surgery and where is he/she located?

     
    Old 12-09-2005, 11:05 AM   #4
    Quietcook
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    [QUOTE=BobiM][QUOTE=Quietcook]Hi and welcome to the boards,

    Sorry to hear that you are still having pain. I'd like to make a couple of suggestions to you.

    First, you did not say if your neuro surgeon was a true spine specialist (>>

    Quietcook, who did your surgery and where is he/she located?[/QUOTE]




    Dr. Melvin Law in Nashville, TN is the wonderful doctor who has worked miracles with my back. Is that a commute you could make? It's only an hour or so for me, but I've spoken with patients who drive about 6 hours in order to see him, so they come the day before their appointments.

    When seeking a spine specialist, I thought he was with another practice called something like TN Spine Ctr. I accepted an appointment with the other partner at that time, but then spoke with several of that doctor's patients who did not provide a favorable review. I only knew that the center told me that they had no appointments open for Dr. Law. Good reason, as he had left there and moved to Centennial Hospital. Someone later told me that there were a siginificant number of patients with bad words on the other doc (and I can't confirm the details as I've not gone back to check records on complaints for that doc since I cancelled my appointment) that this was the reason they had split ways.

    Still, did not make the connection about Dr. Law being the same doctor I had tried to obtain an appointment with, when the doctor I saw at Centennial told me that he would not work on my spine, but wanted me to see their new partner. I so pleased when I returned to see him a couple of days later and it was the doctor I had tried to see elsewhere.

    What a blessing for me not only because of his skill, but because he actually goes over all the details, he listens to the patients and he explains and discusses with the patient and any family they wish to involve. His staff has been absolutely wonderful, as has the staff for the rest of the partners. I never hesitate to recommend them, and have in fact taken several friends and family to see several of the partners when they've had knee and arm problems, just as I also see them.

    Best wishes.

     
    Old 12-09-2005, 12:28 PM   #5
    BobiM
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    [QUOTE=Quietcook][QUOTE=BobiM]




    Dr. Melvin Law in Nashville, TN is the wonderful doctor who has worked miracles with my back. Is that a commute you could make? >>

    I live in Pennsylvania, but would go to CA if need be or anywhere else for that matter. We see my son's neurosurgeon on Monday, but I got the xray report today and it mentions nothing about fusing. It just says the hardware is in place. This is 8 months after his surgery. The report keeps saying there is no change from past xrays and has been saying that after the 1 month xray was taken. I would think it would mention if the spine was fusing. The xrays all look exactly alike with no changes visible to me.

    I'm just wondering who your doctor is because it is obvious that you have great confidence in him and want the name in case I would need it in the future.

    I hope on Monday his neurosurgeon sees something that is not visible to me. Someone on this board said that she heard about someone who was undergoing a second surgery because she did not appear to be fused and when they opened her up, she was fused. I think it was ifoster who mentioned that (but could be wrong).

    Tank you for the name of your doctor. I will put it away for safe keeping and hope I never need it.

    Bobi

     
    Old 12-09-2005, 02:11 PM   #6
    Quietcook
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    Bobi,

    I also hope you never need it, but like you, I would go whatever distance was necessary.

    You didn't say if your surgeon used the BMP, and whether they used your own bone or allograft. Assume you are not taking any nsaids, as that can keep a fusion from taking, but I have heard of general ortho's and neuo surgeons locally not telling their patients that they must stay off nsaids. This is another reason I recommend a spine specialist.

    It took a full year for my first 3 level fusion, which was done prior to BMP. However, without BMP I'm told that it can take up to 2 years. My spine specialist prescribed the electromagnetic belt which created a magnetic field front and back that I had to wear twice a day for that year. He prescribed it for smokers, which I was not, but since I had other medical problems, he thought it was best that we use it. My insurance covered it, and I did great.

    That was the fusion that was broken in a wreck, but by the time we knew we had to redo the fusion, BMP got approved a couple of days before I went in. That was when this spine specialist said he would use another surgeon to move my intestines, because at that time during the clinical trials they found that if the BMP got into unwanted areas by seeping out of the cages, it could cause problems on the nerves, so he decided to go anteriorly to prevent any such problems since he had been involved during the trials. I was totally fused in 4-5 months, as I was the next time. The only difference then was that they had developed the scopes for placing the BMP, so that time he could go posteriorly. Naturally, this last time with 10 levels, I was wide open and he wasn't working with a smaller incision. Even with that many levels I was totally fused at 5 months, but he kept me off my arthritis meds until I was 7 months post op just to make sure everything was cured good.

    The only time I've been in a brace is after this wreck a month ago, and that is just a precaution since the break from the first wreck didn't show up clearly until it began crumbling. As he said, we do not want a repeat of that. He's ordering more tests now to get a better look, because I'm not back to normal yet and he is keeping close tabs.

    I do hope that you get good news very soon. I know that would be one of the greatest Christmas gifts you could have this year. Please have a wonderful Christmas and that you get good news on that fusion, very soon.

     
    Old 12-09-2005, 04:16 PM   #7
    BobiM
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    [QUOTE=Quietcook]Bobi,

    I also hope you never need it, but like you, I would go whatever distance was necessary.

    You didn't say if your surgeon used the BMP, and whether they used your own bone or allograft. Assume you are not taking any nsaids, as that can keep a fusion from taking, but I have heard of general ortho's and neuo surgeons locally not telling their patients that they must stay off nsaids. This is another reason I recommend a spine specialist.
    >>

    They did not use BMP. They used a bone harvest from his iliac crest. After the surgery he had an infection and they had to go back in and wash it out. I hope they didn't wash out the bone chips. Well, time will tell I guess. My son is 35 but you never stop worrying about your kids. He's planning on going to
    Amsterdam and Paris is April and I worry about him carrying his bags. He's still has back pain, but the leg pain is gone.

    Thank you for your kind words.

    Bobi

     
    Old 12-10-2005, 12:15 PM   #8
    Rustysgurl
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    Thanks for all your ideas and encouragement. No, I don't believe my neurosurgeon was a 'spine specialist', as I know he does brain surgery as well. I live in the Kansas City area, and there are several "back" centers, but don't know if their doctors would qualify as spine specialists. Given all the needles, etc., I've had stuck in my back, I'm a little reticent to let just anyone handle me. I may have misled you in what I was saying before. My husband does all the housework (I dust and sometimes cook a little), including the vacuuming and laundry. I'm very careful now to avoid doing those things that really torque me up. Still, I wish there was someone I could see who could reduce my pain level so that I could function more. I went to a pain management doc, but all he wanted to do was epidural injections and Neurontin. I asked about the patches, but he said he didn't have good luck with them. I guess I'm just going to have to be more proactive and find the right doctor for me. I have a very good family physician - maybe she will know someone. I just don't want to grab the phone book and start out blind. Does anyone know any experts in my area?

     
    Old 12-10-2005, 12:41 PM   #9
    Quietcook
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    [QUOTE=Rustysgurl]Thanks for all your ideas and encouragement. No, I don't believe my neurosurgeon was a 'spine specialist', as I know he does brain surgery as well. I live in the Kansas City area, and there are several "back" centers, but don't know if their doctors would qualify as spine specialists. Given all the needles, etc., I've had stuck in my back, I'm a little reticent to let just anyone handle me. I may have misled you in what I was saying before. My husband does all the housework (I dust and sometimes cook a little), including the vacuuming and laundry. I'm very careful now to avoid doing those things that really torque me up. Still, I wish there was someone I could see who could reduce my pain level so that I could function more. I went to a pain management doc, but all he wanted to do was epidural injections and Neurontin. I asked about the patches, but he said he didn't have good luck with them. I guess I'm just going to have to be more proactive and find the right doctor for me. I have a very good family physician - maybe she will know someone. I just don't want to grab the phone book and start out blind. Does anyone know any experts in my area?[/QUOTE]


    Dear,

    You may wish to find my post "How to find a spine specialist in your area" as it includes how to research the doctor's training, etc. It does take time, but then you can do it in small sessions rather than sit at the computer for ages at a time.

    As for the epidural injections, remember that you don't want more than 3 steroid injections total in a 12 month period. While steroids are wonderful, they are also extremely bad on our bones. They have been part of what had made my situation much worse, as a chronic asthmatic, steroids are often the only thing that will allow some of us to breathe.

    Good to hear that hubby is good about helping with things like vacuuming. It is always great to know that many spouses now pitch in, even when there's no medical reason. It's good that "we" doesn't just mean in certain areas.

    Maybe you will soon find a way to relieve the pain. I've not had great success with PM, but it works for many others. I'm just glad that my spine doc as well as my primary are so concerned and work to ensure that I have the best level I can, yet also draw the line such as with the neurontin and say let's go another route. Just stay positive and don't hesitate to let people know if they can help in any way.

    Best wishes.

     
    Old 12-10-2005, 01:01 PM   #10
    Rustysgurl
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    Re: 3 Years Post Fusion - Is This As Good As It Gets?

    Quietcook:

    Thanks for the info. I know what you mean about the steroids and asthma. I have chronic asthma as well. The miracle drug for me has been Advair. I've been using it for over 2 years now, and haven't had to go on prednisone for flare-ups since then (haven't had any flare-ups). Back-wise, I went through 2 rounds of 3 injections (one x-ray guided) within 7 months. He then did a medial branch nerve block. None of them provided any long-term (longer than day or two) relief. So, I'm definitely not going to have any more epidurals. They're not worth it (in my case). I will definitely look for your finding a physician post. I'm definitely motivated, as living like this is starting to get REAL old. I do have a lot of nerve damage (nerve root and sciatic), and have a lot of piriformis symptoms. Sometimes it feels like my hip is about to explode. I'm not has bad as some I've read about, so I'm counting my blessings. Still, I will continue to do more research (with your guidance), and appreciate your help.

     
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