View Full Version : Update
11-14-2006, 11:41 AM
I can't find any threads here which provide the basics about who I am, so a quick repeat: axonal, length-dependent, idiopathic pn since 1996. In Feb, was diagnosed with a spinal cyst causing spinal stenosis and radiculopathy and had a laminectomy and fusion.
Since Feb I've been dealing with recovering from the surgery, and can say I've made great progress. I've used a lot of bodyworkers, and have found Feldenkrais, and deep muscle massage both very helpful. Yesterday I had my first acupuncture, and immediately was able to bend easily and put on my shoes to leave. My back had been stiff, and achy, and that totally lifted.
But I still have pain in my left butt, going down the left leg, which began several months after the surgery. I had an MRI in August which didn't show a cause, and a CT which showed I wasn't completely fused yet, but the rods and screws were okay.
Today I saw my neurologist, and he says that the butt pain is definitely due to spinal stenosis at the level of L4. He doesn't seem to think that this means surgical revision is the only answer, and tells me he thinks I'll be okay to take an active vacation with my kids in January. He thinks the MRI will show the docs where to put a needle for an epidural. But I can't help thinking that if it's spinal stenosis, there will be a re-do surgery in my future.
BTW: I am feeling very good. I've gotten back my flexibility and do not have unremitting pain. I just have pain with sitting (butt) and extension. If I'm a bit flexed, I'm okay. And my overall health seems good, so I am still optimistic. I think the healing from the surgery is near complete, and that's good.
11-14-2006, 02:16 PM
If you can say you feel good (with all the stuff you have going on in your body), that is indeed a miracle. Way to go. Alan once had acupuncture treatments. He danced all the way to the car. I will never forget him doing the Teaberry Shuffle as we exited Coney Island Hospital. He danced right in the middle of the street. People were hysterical. He had had his first acupuncture treatment. He had been sceptical at first but it did work. So as long as he went, he felt good. Unfortunately his insurance changed and didn't cover it any more. But it did work, and that's the main thing.
Here's to continued feeling good!!!!!!
11-14-2006, 04:57 PM
Well, My favorite-est ever fortune cookie had the wise saying: "Patience is the Art of HOPING". In case you all have missed it, well, I try very hard to practice that, keep all things in perspective and try to constructively challenge my DOCS to want to DO me GOOD!.
Sounds like you may be there, tho not quite yet. Don't get down with 'setbacks', they are simply PART OF THE D****####$$$$!!! process?
The last 7 characters in that 'above' word kind of say it All?
As for the pain in the butt aspect....well, you and I are far from alone in that quarter. While there are times when the grumps make me well, beyond, I'd like to think that the pain keeps me sharper in most quarters. I keep 'coming to terms' with my pain[s], but it keeps on changing. I realize I am not a lab rat, nor a hot-house flower [incubating], I like to pretend I've a life out there, albeit different from what I'd planned or imagined. But, It is there for the TAKING! I plan on grabbing as much as my dullard fingers can hold!!!
Hugs and all the pain free moments you can stand! -- j
11-15-2006, 09:28 AM
Hi Liza, i am glad to read that you are making great progress, have you thought of trying a heat bag around the painfull area whilst sitting ? then followed with a couple of strong magnets right on the spot thats troubling you, they shouldn't affect those screws from the op' because magnets only attract to steel, and i pretty sure [but best to ask the doc] that they would be made up from stainless steel or titanium.
The magnets will increase circulation just like a massage will do, i have been doing the same thing with heat and the magnets because i am having a total hip replacement in about 8 weeks time and i get constant awfull pain that goes from my hip then right down the outside of my leg to my foot and i have had a lot of relief from just doing that, it might be worth a thought.
all the best
11-15-2006, 10:32 AM
I remember your name from OBT, but not the detail about you, and I've just looked for your other posts here so I could reply more personally, but find that this is your first. Please remind me, I don't want to be rude, who are you from OBT. And, Welcome to NeuroTalk, it's a lovely, warm, inviting and safe place to post. What's OBG stand for?
Brian: I don't know much about magnets, well, I don't really know anything about them. I do use heat at night. You are thinking magnets over the painful site might help?
11-15-2006, 01:47 PM
Brian is sold on magnet therapy. For that matter. so is my wife. she wears 'em day & nite- swears by them as the relief from 24/7 pain from cysts on her spinal column (not operable-so sez the 'chief' at Hopkins).
Glad you are feeling better and BTW, magnets are non invasive.
I'd check with your doc, tho-I think even stainless steel is still a ferrous metal. If he says 'couldn't hurt' (he might be skeptical, tho) give 'em a try.
At least now you can tell people they are a 'pain in the butt'.....and mean it! ;)
11-15-2006, 03:09 PM
This post was to me from Brian and I think Nide. http://neurotalk.psychcentral.com/showthread.php?t=4832&highlight=magnets
Go all the way to the end of the thread and then back up. There are several posts about magnets and how to use them.
11-15-2006, 04:04 PM
Thanks for the info about magnets--I'll read it more deeply later.
For now, I just want to pass this on. After my doctor said there's something "anatomical" and it's causing spinal stenosis and radiculopathy, I was worried. But an old spiney wrote me, someone I met on the spine board when i was preop, and said that hey, everyone scars, and sometimes the scars are inconvenient and press on nerves or cord. Not to worry too much. Try some epidurals and if it doesn't get better, put off surgery a couple of years.
So I told my massage therapist that it was likely there were scars pulling on L4. And he spent an hour working deeply around all lumbar vertebrae, painfully, achingly deep, the deep that has you feeling something so deep inside the pain feels psychic. I went with it and just kept breathing, because at no time did the pain feel like a hurtful thing, just a hard thing.
He says L2 down are covered with scar tissue; he can feel it, so he's ripping it free and loosening the grip of the muscles. Will it last? Well, it's the nature of scars to want to contract, he said, and the nature of muscles to do that also. But if I keep working at keeping them released, I shouldn't have pain from them.
So here I am sitting at my desk all day, and my butt does not hurt one whit.
11-15-2006, 05:14 PM
you got a little relief.
A few random comments.
1. Are you absolutely sure you don't just have sciatica? It sure sounds that way from your sx.
2. The working-out-of-scars-through-massage is very real. I've had them in a couple of places. They're called adhesions, as you know, and if they are not very old or very enormous they can be broken up and reabsorbed by massage.
3. Whatever you have, therapies like massage and PT are proven effective in compression neuropathies like sciatica. Sometimes it's a tight piriformis muscle squeezing the nerve, sometimes its tight connective tissue, or something else, but in many cases the whole thing can be stretched, gently exercised or massaged away.
I would NOT be putting HEAT on that spine every night!:eek:
I'd do cold pack for 20 minutes. Heat aggravates nerves big time!
11-15-2006, 09:43 PM
Now I know why Alan loves it when I massage him every night.
I'm massaging away his adhesions.....
11-16-2006, 01:25 AM
Brian: I don't know much about magnets, well, I don't really know anything about them. I do use heat at night. You are thinking magnets over the painful site might help?[/QUOTE]
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Liza, i would very surprized if they did not help, but i would still tread carefully before putting any magnets near your spine, because there are all differant classes of stainless steel, if the ortho's use a high quality stainless steel screws thats got substantial chromium and especialy nickel, as the nickel content can make all the differance between the metal being magnetic or non magnetic, so best ask your orthopedic surgeon, but if you can place them away from your spine on any sore spot, then you may be able to benefit from them.
11-16-2006, 01:29 PM
is a TREASURE!
I once had an experience with a massage therapist who on first touch, simply stated 'You did X, Y & Z about Q years ago to your back, didn't you?' That person was exactly on target with the time of injury!
I'm glad to hear of your final progress. I know it's been a hurting path to get to any relief. Keep it up and inspire us all. HUGS - j
11-16-2006, 02:01 PM
Mrs D: Dr Theirl had suggested the heating pads at night, and they do help my back let go when I finally get into bed. But I don't stay on it all night, rest assured. I couldn't deal with ice. I can't explain it, but it's just not what my body is asking for just now. Thank you for your concern.
steve: It's not sciatica in any typical way. Here's why. When the neuro moves my leg, doing straight leg raises, having me turn the hip in and out, he can't find any way of reproducing the pain. That says that nothing is going on peripherally, because the peripheral nerve feels fine. However, when I bend sideways or extend my back, I get pain. He says that means the problem is anatomically adjacent to the cord at the level of L4. He knows it's L4 because the pain goes down the front of my leg and my knee jerk is diminished on that side.
But I made so much gain between Monday's acupuncture and Wednesday's deep massage that I'm wondering about postponing the MRI for next week.
I get one more massage tomorrow, and then I"ll see how I'm feeling. If the gains last, I think I'll ask him if he has a problem with me postponing it.
In terms of magnets, btw, it's titanium and it's okay to get an mri, so I'd think it's okay to use magnets.
If you won't try the cold packs....do this...
Stop the heat treatments, but do nothing else. Use Flexeril if you have to, or magnesium to relax the muscles.
Stimulating nerves with heat leads to a vicious cycle of pain for some people.
So DO NOTHING for a while and see if your sciatica improves.
I used to think heat helped.... but not for the last 10 yrs or so!
And if I want an MP attack I can arrange that in a steam room or a hot tub!
Since using my old lady shower stool, and no hot baths any longer, my MP went to sleep. It was agony for YEARS. And I did get addicted to my hot soaks, then.
Heat increases blood flow, increases inflammation. If you have sore muscles from overdoing it, then a temp 10 minute heat will help remove lactic acid etc and help with muscle pain. If you have pain from nerves overfiring and stimulating muscles when you don't want that effect, then you put the nerves to sleep. You don't feed them with heat. I think since you are still having pain, you should consider alternate modalities!
11-17-2006, 02:36 AM
In terms of magnets, btw, it's titanium and it's okay to get an mri, so I'd think it's okay to use magnets.[/QUOTE]
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As far as i know about titanium its just like alloy metals, nonmagnetic, so if you did decide one day to give them a try, then there is no reason to pay big bucks for them, i can buy them in OZ for about $4 each, so if they happen to fall off and loose them its no big deal to replace them, i use rare earth magnets [Neodymium] 3,000 gauss reading and they work very well for me.
I have found the longer you leave them on the better the results, i only take them off for bathing and its important to put a small peice of moleskin the size of the magnet on the skin first before you stick the magnet on, its to stop any magnetic burn that can happen with strong magnets [a very good tip from Mrs, D]
I use a product called Elastoplast to stick them on with, its a very strong water proof adhesive tape.
11-17-2006, 11:08 AM
Mrs D: You logic is unassailable. You win! No more heat for me. I have a drug called Soma for muscle relaxation. I don't know anything about it, except that it was given to me after the surgery. What is it and do you think it's a good choice?
Brian: Okay, you, too, win! :) How do I go about getting magnets? Can you explain what to do in simple language for me? I'm getting overwhelmed here. (no, I'm not doing worse, I'm okay, but there's an impending death from cancer in my family, and the vigil and help caretaking are draining)
Just be careful with it. People will KILL you to get their hands on it, depending.
And they will go to JAIL for it! :p
It is very popular on the street. It is related to meprobamate, and can lead to
dependence. However, many people say it is the "best" muscle relaxer. Do not mix it with alot of opiates or alcohol. But I suspect you are careful with that, anyway.
I use Flexeril myself 5mg is plenty for me!
11-17-2006, 01:17 PM
...I couldn't deal with ice. I can't explain it, but it's just not what my body is asking for just now...
I don't think that our feelings about things are necessarily a good guide to action, because feelings often spring from anxiety about what we think will happen based on memories of what happened in the past. Those memories and that anxiety may not apply to the present situation.
The idea of ice on the back is horrible. The reality of ice on inflamed sore tissue is wonderful. If it's the anticipation of a shock of cold wet that makes you hesitate, you can use a dry cold pack from the freezer wrapped in one layer of terry cloth towel. Leave it on for twenty minutes at a time, and wait at least twenty minutes for the next application.
Believe me, you'll look forward to the relief and healing engendered by ice. It's the first thing I think of for joint or nerve pain, especially when inflammation is present. Athletic trainers have a maxim that heat on an injury my help or may hurt, but cold ALWAYS helps.
My favorite ice pack is to fill an appropriate size plastic zip-lock bag about 3/4 full of ice cubes. Add enough water to fill the bag loosely, so it can conform to your body. The water makes for better body contact, and makes frostbite impossible. Place the bag in another same size zip-lock bag to insure a leak free experience. Then apply to the sore area for twenty minutes. You can start with a towel on the skin to avoid that initial cold shock, but you'll soon graduate to just putting the pack on the sore area, eager for the blessed numbing relief and the ensuing warmth as the area totally cools down and then rewarms from body heat after you remove the pack. The reduced pain lasts for a long time, and you can almost feel the healing after an ice pack treatment.
11-17-2006, 02:48 PM
Ok Ok, My aversion to ice is purely psychological. I'll give it a try. I do remember that early in the course of my neuropathy, my feet burned, and I'd use bags of frozen greenpeas. It was a nice, flexible ice pak!
I'll be careful with the Soma. I've taken it at night, and I guess that's why I've been sleeping so surprisingly well. I had no idea!
Just came from an amazing 90 minute massage, deep in my muscles and through the abs to the psoas. I'm putting my money on this. Literally.
11-18-2006, 11:47 PM
Brian: Okay, you, too, win! :) How do I go about getting magnets? Can you explain what to do in simple language for me? I'm getting overwhelmed here. (no, I'm not doing worse, I'm okay, but there's an impending death from cancer in my family, and the vigil and help caretaking are draining)[/QUOTE]
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We are all hoping that you win really,
Magnets are really easy to work with, general rule is were its sore is were you put them, all I do is push my thumb into the sore area looking for the most sensitive spot, sometimes you may need to push in pretty firmly until you hit the spot, other times just a light press will let you know, but seeing that you are having deep massaging you should have a pretty good idea were the most sensitive spots are already, so that’s were I would be putting the magnets, it helps if you can get someone to help you put them on, it gets a bit hard when your trying to place them on behind you.
You will need some strong water proof adhesive tape, otherwise when you start sweating they will just full off., also a small piece of moleskin the size of the magnets, to put on the skin before the magnets gets stuck on, if you don’t, you can get a magnetic burn were the magnets was.[ a real red color skin spot].
I have been looking around for you on the net and I come across the web address below, so I emailed the company asking were they were, apparently they are situated down south in Texas, :confused: i wouldn't have a clue, delivery wouldn’t be a problem because but they do deliver world wide..
CMS Magnetic’s Secure Online store .
On the home page to the left you will see Neodymium magnets d/click then go to page 13
Page 13, the very last one down the bottom of the page.
Material: Neodymium magnets, grade N40
Magnetization: through 0.25"
Rating: 12,900 gauss
Pulling Force: 32 lbs.
Plating: Ni+Cu+Ni 3 layer plated, the best coating available
Application: Physical massage.
These ones read to be very strong,, I think they are very good value for money at $3.18 each, but you have to buy minimum of 4 magnets.
These particular magnets read to be really strong [thats great] so if you did decide to buy them , please handle with care as opposite poles attract to each other and they can slam togther with an almighty force and if your fingers are in the way , well, it hurts believe me, but as long as you are carefull with them there shouldn’t be any problems at all.
They normally come all together and are seperated by plastic between them, but once you separate them, place them down well away from each other.just in case they attract to each other.
If it was me , because of the strength of these ones I would just take one off for now and place it on the sore spot , it doesn’t matter what side of the magnet you use and see how it goes, if you need to put extra ones on, just let me know and I will explain it a bit further.
If you happen to find some magnets elsewere, i reckon anything above 3,000 gauss is good.
I wish you luck and I hope that they help you.
11-19-2006, 10:58 PM
I just wanted to say "hi" and sorry to hear about the impending death. They are never easy.
Also, glad you are doing better than you were. I hope it continues.
11-19-2006, 11:09 PM
Don't know if you remember me posting about these wonderful ice packs or not, but you might want to give these a try, if you opt for the ice. They are not at all like regular ice packs and don't get you all wet. They are called ColPak by Chattanooga and are available online. An 11x14 placed in a hand towel folded in half feels so good on what hurts.
These are filled with a gel and come in a very heavy blue bag-you keep these in the freezer. I think they use these in sports medicine, but I am not positive. A friend gave me the first one, which she had gotten from her Chiropractor. It sold me on them. They are not at all like the ones you buy in the store or get in the hospital. I have several and change them around at night. They are amazing.
Hope you are doing OK.
11-20-2006, 06:46 PM
My acupuncturist today tells me--HEAT!
I give up. I think it's 6 of one, half dozen of another, as to what helps different people.
Has anybody here heard of RSD? I have the gene for this, and I'm beginning to wonder if the persistence of pain down my leg isn't something more unique than a structural problem.
I carry autoimmune markers for: the neuropathy associated with gluten intolerance; psoriasis and psoriatic arthritis, narcolepsy, RSD.
Interesting, but I hardly know what to make of it.
My internist says I have enough markers to justify going onto methotrexate, as my rheumatologist has suggested, but I've continued to say no for about 6years now.
The acupuncture is helping me to be able to move my back, and it's helped the low back pain from the surgery. That is much better. And the relief is immediate. But I still have pain in my left butt down the front of the leg. The acupuncturist, Feldenkrais worker, and massage therapist, all say it's a tight ITB (connective tissue band down front of leg). My neuro says he thinks it's something structural, and has ordered another MRI (tomorrow).
And I have no idea who is right: heat/cold; muscle/nerve; autoimmune/idiopathic?
11-20-2006, 06:54 PM
I have a friend who got RSD following a routine abdominal surgery several years ago (the docs said it was probably nerve damage during the surgery) - the first couple of years she suffered pretty severe abdominal pain, has seen many specilists - endured more surguires that revealed nothing - and is now seeing docs that supposedly specialize in RSD and give her some type of injections....
When I first met her - she was homebound and in constant pain - while still in pain - she is now able to drive again, travel, clean, cook, etc..... and on bad days takes I believe vicodin to help her thru.... she is actually doing very well overall however, shes actually out of town right now for a week for some pain treatments in Philadelphia - will let you know what they are and if they help her when she gets back on-line....
11-20-2006, 10:06 PM
Still resisting the methotrexate huh?? You know I think you should give it a try. You can always stop it if you don't get better after a period of time. You and the rheumatologist can agree ahead of time what is reasonable. Another thing I've suggested to you is a regular anti-inflammatory. I know we mentioned Indomethecin. That one is pretty high powered stuff but there are others that aren't and maybe taking one on a regular basis would help.
I learned a lot about Reflex Sympathetic Distrophy (RSD) when I first developed this mess I have. I had a couple of the sympathetic blocks but didn't benefit from any of them. There is a RSD forum here on BT2 and probably one on the old Braintalk 1.
11-20-2006, 10:15 PM
Billye--Well after looking over my genetics and seeing all the liabilities I have, I decided, once again, to call the rheumie. But it was 5pm, and his office was closed. Tomorrow I may feel better, and forget to call him. It does seem that my handling of this recovery is very much based on how I am feeling day to day.
I read a bit about RSD tonight, and this is defintely NOT that. So that's good.
I am taking Ibuprofen, Billye, regularly, (or sort of regularly) and it does help.
Oh, the "impending death" by cancer of a family member--it's NOT happening. He's in hospital and doing really well. This is a great relief.
11-22-2006, 12:17 PM
The MRI was totally normal, so the radiologist threw in a CT scan. He thinks the pain is coming from a facet, and wants to see if the fusion took. I don't have the result yet, but he seems to think I need a facet injection and all will be fine.
12-02-2006, 01:57 AM
(Oy, I've just looked at this and it is way too long. I'll try to edit when I'm less tired and more focussed.)
No real good news today. I've been having more sciatic type pain, and my lower back has been gripping more. The "sciatic pain" is a shooting pain from my butt down the side of my leg that occurs when I do anything twisting. If I roll onto my left side, or bend to the left, it's a pain that knocks the wind out of me and near brings me to the floor. On the other hand, it's not constant. My right butt has caught some of this pain, and now there's some aching there too. And because of this, I think, my lower back is gripping more, undoing most of the good results from feldenkrais and acupuncture.
I had an MRI and CT last week. And saw my neuro today. He said there's evidence of irritation at L4, L5, and S1. My knee jerk is way down, and I've lost sensation on the top of my foot. I get tingling down the back of the leg. That's a lot of irritation. He moved me around and saw that it was all positional and said this is clearly something mechanical. Since the MRI and CT were read as healing perfectly, he couldn't find a reason for it. Maybe, he thought, a pedicle screw was irritating the nerves, and taking out the hardware would be required. At the time, he was thinking the fusion worked.
It's not arachnoiditis, and everything is in place, so he was puzzled.
But he just phoned me. He talked more iwth the radiologist, and I'm not at all fused. This leads them to think that maybe I'm unstable. I shouldn't be being held together by the nuts and bolts, he said. So Monday I have to call to set up plain films with bending and extension and such.
I do feel like my back is totally unstable. I feel like I'm swaying in the wind: if I get bumped, I'm both off balance and the pain feels like my spine is being torn. I took a subway last week and the swaying made me sway, and hurt. Sitting having dinner tonight and talking and gesticulating a bit---it felt like my spine snapped--kind of like cracking a joint, but this is happening in my lower spine, like a vertebrae just snapping out of place for a second, and unlike when your neck "cracks", this causes major pain in the spine, nerve type pain, lasting briefly. But it's a second of scariness. Turning in bed is the hardest--the twisting that tugs my spine causes sciatic type pain down my leg--like lightening pain. It just feels like it blows with the wind--no stability at all.
In the meantime he offered me Lyrica, and then thought that maybe since Soma works for getting me to sleep (and I'm scared of being tired during the day) I'll be okay with what I'm doing now: Soma, Klonopin, and Oxycodone.
But I do need more Oxycodone to pull the level down down.
My son has a suggestion. Looking wet-eyed, he said: why don't you just get your back casted and lie in bed for a month, just drinking lots of milk and taking calcium. Somehow, he has a point. But is it too late? I have no idea.
My surgeon had told me to be as active as I could after the surgery. The rods and posts would hold my spine rigid enough for the bone to fuse, and nothing I could do moving could interfere with it. I haven't found anybody else on the spine site who had this advice. Everyone else was put into a heavy corset and told not to move for several months.
I've just rethought this, and think maybe we should have gone with the Lyrica, and starting on a weekend would be good. So I"ll call and ask him to phone my pharmacy.
That's where I"m at. I'm not pleased, but people/patients who know, say this isn't that unexpected, and reallydoesn't qualify as Failed Back yet, being under a year. I don't know--it feels like a failure to me. Like it's going in the wrong direction, if any direction.
So that's the update. I just have no idea how worried to be about long-term, so I'm trying to stick in the moment.
affect fusion negatively. Our old threads at spinal at OBT mentioned that alot.
You might want to have a serum Vit D run, to see if you need to
12-03-2006, 06:30 PM
Mrs D--Good thought about Vit D--my endo ran it and said it's okay. And while prednisone and nsaids might interfere with healing, at this point they help inflammation and pain, and I think it's 6 of one, half dozen of the other, as to which is affecting me worse--inflammation or failure to fuse.
I can't find any good information on how long it should take to fuse, either on the forums or on pubmed. I'm sure it must be out there, but I can't find it. If anyone knows about this, I'd like to hear. Also, whether the instruments are expected to hold a person as if they are fused for over a year or how long?
because my surgeon doesn't care that I'm not fused, because he says the screws are so tight they do just as good as fusion.
I am totally at a loss here.
Haven't taken the Lyrica. Got it, but shied away at the last minute.
12-12-2006, 10:04 PM
Last writing, I had had an MRI and CT of the spine which showed no particular reason for continuing pain after the laminectomy and fusion.
I was then sent for flexion and extension films to see if my back is stable or not, and the radiologist actually TALKED to me about what he found. (Actually, as I was sitting in the waiting room, he called several people in to tell them what he found, when he found nothing---told them to go enjoy their weekend and not to worry! A gem this guy)
He found my back is stable. The screws and rods are holding well. The bone transplant did not fuse at all, but that shouldn't be causing pain because the screws are okay. There's new arthritis below the fusion, which is common because after fusion the levels above and below are stressed. He thinks that may cause butt pain when I sit, and suggests a facet block.
Otherwise he says there's lots of scarring along the spine, which is NORMAL after fusion, and accounts for the pain people have starting at around 3 months. He said usually it goes away on its own at about a year.
I spent the last week concentrating more on massage and imagining anything which would break up scar tissue, and was actually feeling a bit better today when I saw my rheumatologist.
Once again, he recommended I take methotrexate. He says I have evidence of lots of tendinitis and low level inflammation at joints. He says this is what happens with sero-negative arthritis. He does not think I have osteoarthritis, rather inflammatory. Even though I'm not at all sure, myself, that I have any arthritis other than the spine.
He wants me to take 15 mg of methotrexate once a week, with folinic and folic acid. His idea is that I rate how fatigued I am and how much pain and stiffness I have daily for 6 weeks. If I'm improved, I can decide to stay on it. If there's no change, then I stop, and don't have to revisit this ad nauseum.
Six weeks seems manageable. Mrs D?
Also, he suggests I start Lyrica, 50mg at night.
I'm thinking both are reasonable, but if I do both together, how do I know which is working?
As an aside, especially for Mrs D, but for anybody: I take dexamethasone nasal spray and amphotericin nasal spray for fungal sinusitis. I haven't had an infection since last March, which is an amazingly long time for me. Also take diflucan, 100mg daily. I have just realized that I have totally lost my sense of smell. Is this from either of these meds? If so, do you know which? Is this reversible? I do miss smelling.
Brian--Only realized while re-reading this thread that I had lost track of the magnets. So I went back to the page, and I can't find a page 13. Can you send a direct link?
Overall, I'm feeling not bad. The back pain, while still there, may be less with more massage and feldenkrais type movements. Sinuses are good, and neuropathy is stable. Just tired--of dealing with the pain and, just tired from the pain.
12-13-2006, 07:29 AM
Brian--Only realized while re-reading this thread that I had lost track of the magnets. So I went back to the page, and I can't find a page 13. Can you send a direct link?
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Here you go - :) https://www.magnet4sale.com/xcart4/home.php?cat=256&sort=productcode&sort_direction=0&page=13
I have never taken immune suppressing drugs. I was tempted last year, but I stuck it out. However, I did find a food link to joint/tendon issues.
For me it was orange juice and other citrus. I bought the book by Dr. Kittley
Obesity's Answer ( www.obesitysanswer.com) and followed some of the
elimination diets. (Dr. Kittley is a GF advocate and linked to OBT on her site) I found onions and oranges were problematic for me.
The onions were mostly GI. But when I stopped all orange juice,(and oranges) which I love,
my knees stopped hurting. I was pretty awful last winter with the PT and then my knees flared up. I have tested it once recently with grapefruit..and the next 2 days I had knee pain. I have removed citrus from my diet now, and I have
far less pain (some stiffness remains).
I have read anecdotal things over the years, but never a direct link. Since I do not drink OJ at our summer place (hard to keep and get) I always feel better there. As soon as I get home, within a couple of weeks, my knees would act up again. I thought it was all the stairs I climb. But it is turning out to be the OJ. Since I responded so well to GF diet, I suspected other things..as Dr. Kittley points out in her book.
I really MISS my oranges too! I had to sit with a colleague at lunch and she had the most lovely Cara Orange last week. It was hard. But there is a lesson there. Often in allergy screening they will look first to what you CRAVE. That is what you should eliminate first for the experiment. Onions too, were a huge staple in my cooking. So I have had to make changes.
I don't know if 6 weeks is enough. So I can't answer that. Sorry
12-14-2006, 11:05 AM
I've done a google search on low-dose methotrexate, and there are reports of death from bone marrow suppression. This is probably why I've said no in the past. Each time the doctor recommends it, I think I google it, find that some people have died, and tell myself: I'm not going to die from having pain, so it's not worth the risk. However small it is.
12-14-2006, 03:34 PM
I can't think of many medicines without some fatal risk. The new January Discover Magazine has a chilling article in "Vital Signs" about a poor woman who died from pseudomembranous colitis caused by a short course of the antibiotic Clindamycin. The article points out that many antibiotics including the penicillins carry this risk, as does acid reducing medication (I take Aciphex daily).
The author is Dr. Tony Dajer, Interim Chief of ER Medicine at New York Downtown Hospital.
I have questions about your Methotrexate concerns. Is the bone marrow supression asymptomatic? Can it be detected through testing before it progresses to dangerous levels? If so, is that testing normal procedure? Is the bone marrow supression reversable if caught early and the Methotrexate stopped?
12-14-2006, 03:47 PM
I just looked up the Warnings and Precautions section for Methotrexate at www.rxlist.com ( http://www.rxlist.com/cgi/generic/mtx_wcp.htm ). That is serious and scary stuff. If I were in your situation, I think I'd also not take Methotrexate for other than seriously debilitating or life threatening conditions.
It seems wise to me to look up and understand the side effects and risks of every drug one takes to weigh risks vrs. benefits. Negative consequences are far more serious for us patients than for the prescribing physician.
12-14-2006, 04:35 PM
Exactly! My doctor hasn't seen any fatalities, and he's very gung-ho about this med. He's sure that close monitoring will keep me from developing anything serious. But in articles I've read, there was a series of 35 deaths from this. Were all those patients poorly followed?
Also, he didn't explain to me the risks or drug interactions at all, leaving me to look them up. I'm having a better week this week, and am in a clearer state of mind when I'm in less pain. So I figured I'd just say no.
But I have begun Lyrica, 50mg. Can't say anything one way or the other yet. One thing that has helped---the radiologist says he thinks the sciatic type pain is due to scar tissue, so I've been assiduously self-massaging along my spine and butt each night, and you know? it's really helped!
12-14-2006, 05:23 PM
Was that cadaver bone or your own?
My friend here and I both have had trigger point injections along the spine, which has helped with pain and inflammation considerably. I have tried to hold back on these a lot, because they contain cortisol (Ketamine and maybe something else???) and I am already on Prednisone, which is not good on the bones and probably not good there around the joints, I would suspect.
Meanwhile, my friend has had BUNCHES of them and she is going to have to have some kind of fusion next month...
P. S. I thought you had to be really careful on Diflucan, because of its effect on liver. Is someone monitoring enzymes?
12-14-2006, 05:24 PM
Was that cadaver bone or your own?
My friend here and I both have had trigger point injections along the spine, which has helped with pain and inflammation considerably. I have tried to hold back on these a lot, because they contain cortisol (Ketamine and maybe something else???) and I am already on Prednisone, which is not good on the bones and probably not too good there around the joints, I would suspect.
Meanwhile, my friend has had BUNCHES of them and she is going to have to have some kind of fusion next month...
12-14-2006, 05:30 PM
They used my own bone for the fusion, as well as bone matrix protein, which is supposed to stimulate the bone formation needed for fusion.
I'm scheduled for a facet block in a couple of weeks, and I expect that will help, too.
12-14-2006, 10:33 PM
Was that OP1 that they used?
12-15-2006, 01:48 AM
Hey Joe---I guess not, because I never heard of OP1. All I know is that the laminectomy was "generous", and because he removed a LOT of spine, he had lots of pieces to use. The plan was to supplement that bone with bone from hip, plus the BMP to enhance the chance/rate of fusion.
Get this, though: BMP costs a lot, and the hospital absorbs the cost. Usually, one bag of this sushi textured material is used with a fusion. But when I woke up, the doc says to me: I just had an urge; I thought, What the Hell! I'm going to just throw in an extra bag and let the hospital deal with it. That way, I won't have to use her hip. I've since heard rumors, on the spine board (nothing about healing from spine surgery seems well studied), that one reason for failure to fuse is TOO MUCH BMP!
On the other hand, my doctor went against what every other spine surgeon people on the spine board used have said. He told me to NOT use a brace; he did not use a bone stimulator; he said do whatever activities I could, with no limitations. The implanted hardware was so strong that there was nothingI could do to move my spine and hinder fusion.
Again, nobody else has gotten this advice. Patients on the spine board are typically corsetted for months after surgery, told to not twist, not bend, not exercise, and some are given bone stimulators--electrodes whichsound to me kind of like the Rebulder/TENS type of thing.
And you know, I'll never have any idea what it was that kept me from fusing; nor will I understand what the long-term meaning of it isfor quite a while.
It's hard to get info.
As you know, I love to research topics, such as looking up treatments for Silverlady, whose suffering has troubled me greatly; or composing a complete list of diagnostic tests, and setting up Lizajane.org. But for the spine---there is just no information out there. I don't know why.
Why did you ask about the OP1?
And here I am, a tad insomniac, and signing on in hopes of a note from Billye. I urged her so strongly to go to Mayo, that I am feeling resonsible for hersuffering, and am afraid i will feel extremely guilty and presumptuous in my "work on her behalf", if nothing comes out of it for her except the misery of the trip. I'm already feeling quite guilty.
12-15-2006, 06:46 AM
--don't feel guilty. Without your advocacy, Billye would never have been accepted as a patient at Mayo. (Her doctors certainly weren't going to push for it.)
I understand the feeling that it would suck if Billye goes through all this and there is no further progress on diagnosis or treatment, but you did a good thing. (A mitzvah.)
I do hope that the Mayo people are conscientious enough to send her all the testing results/clinical impressions without a lot of pressured asking--and, IF something definitive is found, to follow up with her physicians regarding therapeutic or other recommendations.
(We may all want to gear up to flood her physicians with IVIg evidence. ;) )
12-15-2006, 08:36 AM
OP1 is BMP7 and is very expensive, I believe 5,000 dollars a bottle. My wife went through a 3year non union of the tibia resulting in 27 operations and 4 external fixators. The OP1 was brand new at the time ( 2003). It did not work for her either. She eventually fused only after having a taylor spatial frame put on, which is an external fixator that is tightened everyday at home. She also started taking calcium and of course having to bear weight on it. If bone isnt stressed it doesnt heal completely.
12-15-2006, 08:44 AM
Don't you ever feel guilty again about this trip!! I cannot even begin to know how to thank you for the effort and work you did to help me with this trip. There is more for you in the email I sent you. But for all to know..this trip saved my life..literally!!! I cannot thank you enough.
12-15-2006, 11:56 AM
golden spinal issue nuggets...post here or PM me any truly unique key words and I might amaze even my own self in which I 'mine'. There is People Speak, Doctor Speak then there's Specialist Doc Speak. As long as I've some clues as to those quirky key words...I can usually find stuff. Otherwise it's like finding a specific treatment for 'cancer'..they are both big fields. The more I can get specific the more stuff leads to other stuff that get one to the GOOD stuff!.
We all should have some basics in any/many spinal issues as all those nerves ARE connected to the brain via that Spine... Having a basic overview that channels into the specifics CAN occasionally lead to EUREKA! moments. We all need those on occasion.
Super duper good thoughts for now - j
12-17-2006, 01:23 PM
I'm going to take you up on your offer to datamine--Here are things I don't understand about fusions:
1. How long does it take for fusion to be complete?
2. Do "bone-stimulators" only work early on, or do they stimulate bone growth after almost a year
3. How important is fusion? If you don't fuse, but have rods and screws, does it matter if you fuse or not?
4. What's the definition of "failed back"? Is it something only diagnosed after 2 years, or can a person be called a "failed back" at 10 months?
5. What happens to scar tissue that forms around nerves?
Dahlek--If you can figure out the answers to any of these questions, I'd be mighty grateful. Because I can't seem to get any straight answers--people disagree on the most basic aspects of this.
12-17-2006, 02:28 PM
I have a small amt of knowledge about some of this.
1. Bone stimulator - I had spontaneous stress fractures of the tibia's. One was on going for 2 years. They finally put a stimulator on my leg and it healed after 2 years. We were then able to put the same one on the other leg when it fractured. I'd recommend it from my experience. They are a lot of trouble, but I found that I could sleep in it and also carried it with me and put it on at work when sitting under my desk.
I also remember something in my reading about botox being used to break up scar tissue.
Hope this helps,
12-17-2006, 07:52 PM
I posted this earlier. Decided this to cancel this post. Same info. Almost a duplicate, Don't know what is wrong with my computer..maybe it's a gremlin in my mind or machine.
The gist is the bone growth stimulator worked after I suffered for almost two years. Wouldn't hesitate to recommend it.
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