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Posted By : qm2hill - 8/1/2017 8:18 AM
I had a L4-L5 lumbar back fusion 11 years ago. I was diagnosed with fail back surgery syndrome/ failed lamenectomy syndrome. When I wake up in the morning, I can barely walk, the pain is so bad. I take tramadol and Neurontin for pain, but it doesn't help, nor do muscle relaxers. It feels like my muscles are tearing around the fusion area in my lower back and I also feel extreme ache and painful ripping or tearing sensation just to the right and upper right of the fusion in my back.

When I go to VA hospital for mri, the last mri didn't find any significant changes. All I know it I'm tearing up as I write this, it hurts so bad.

Does anybody in this forum have a suggestion as to what I should do for this pain I have? Any advice would be welcome. I do have a titanium cage surrounded by cadaver bone in my spine and screws and rods.

Thanks!

Posted By : straydog - 8/1/2017 9:26 AM
Hello qm2hill & welcome to Healing Well. Very sorry to read that you are struggling so. Your story is like others that posted here in the past. People either do well from surgery or they don't. We have not had any recent members have back surgery lately. It seems to come in spurts. However, one thing we do understand here is pain, so I am very glad you found us.

I am guessing that all of your medical care is through the VA. I have a pretty good understanding on how the VA works with their pain mgt care. They put everyone on the mildest pain medication available. Is your Tramadol an extended release or instant? What dose are you on? If it is extended release has the dr ever discussed giving you something for break through pain? Many times when folks are on an extended release the dr gives something for break through pain. However, knowing the VA system that may not be an option with them. I read an article not long ago about how they are going to be making changes with narcotics.

I know you said you have tried various muscle relaxers that did not help. Have you ever tried a muscle relaxer called Baclofen? Baclofen is not like Flexeril & those type of muscle relaxers. It was originally used for people with MS for severe spasticity, it works on the central nervous system. Regular muscle relaxers do not work this way at all. I have been on every muscle relaxer there is over the years. Several years ago I was switched to Baclofen & it has worked very well for me, much better than anything I have ever tried in the past. I do not get groggy or loopy from it at all. You must take it exactly as prescribed to keep a steady serum level in your system. Some people say they get a little sleepy at first, but that will pass. I suggest that you go to Drugs.com & read about how Baclofen works. Do you have arthritis or any type of nerve pain?

Finding the proper medication that works for you is critical for your existence. Restoring some quality of life is the most important thing. I know you are in bad shape, but do you get any exercise at all, such as walking? Do you have access to a swimming pool? Getting in a pool & just walking around & getting your body to moving may be very helpful to you. You are weightless in a pool & cannot injure yourself. If no access to a pool check into a YMCA in your area & ask if they have a pool. The main thing is you must get up & move or you will not get anywhere.

I know I have asked a lot of questions but I am just trying to get a better picture of your situation. If you don't mind me asking, what is your age? If you would rather not say, no problem. We are not drs here, we just have a lot of experience with living in pain. We will do our best to give you some tips on things to try.

Again, welcome aboard.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : qm2hill - 8/1/2017 10:19 AM
Thanks for your quick response. I am 61 years old; still in chronic severe back pain after lumbar fusion. I take tramadol, which barely helps, twice a day; don't know if it's extended relief ( I assume it is since I only take 2x daily) or instant. I do exercise, walk on treadmill at gym; light weights. I think I may have tried Baclofen, but muscle relaxers don't provide much relief. I could live on Oxycontin but they won't give it to me.

I'm making an appointment asap to go back for the tenth time, but I don't know how to explain. They want to (va pain clinic) give me injections, but they don't help. Why would surgery which indicates a good fusion, cause 1000 times more pain then before surgery. Unfortunately, I needed money, so I settled my workman's comp case. I only make $20,000.00 on va disability and social security disability, so I can't afford secondary insurance on top of my medicare, so I go to va. I wonder if surgery could help; but I need stronger pain meds, and I don't know how to get them. Would a private doctor give them to me? I'm not a dope head, but I tell people I wound'nt mind getting addicted to Oxycontin as long as it helps me live a pain free life (I've suffered for years; sleep a lot cause of the pain and pressure wears me out.)

Thanks!

Posted By : straydog - 8/1/2017 1:35 PM
gm, there are tons of folks out there in your shoes that have surgery & their pain level ends up being much worse after the fact. The drs cannot give us a reason for it either. They look at the scans & say well everything looks fine from a surgery view, hence here comes the failed back syndrome term. Meanwhile, the patient is left to suffer.

Look on your bottle of Tramadol, it will have ER at the end, which stands for extended release. Tramadol is one of those medications that either works or it doesn't. What mg does the dr have you on? Can the dr increase it? If you have been on the same dose for awhile there is a good chance you have become tolerant & could use an increase. In the private sector obtaining decent pain medication is becoming harder & harder. The war on narcotics has had a devastating effect on chronic pain patients. You would be hard pressed to get Oxycontin rx'd these days by any dr.. Nearly everyone see's pain mgt drs & meds & injections are common practice. I know you don't want to try the injections, but many do find relief. The medications used such as steroids can help knock down the inflammation. A very good friend of ours does an injection ever so often to keep things settled down. It would be worth trying anything to get some relief. In many instances there is a lot of inflammation that causes so much pain as in your situation. You could talk with the dr about trying a short burst of oral steroids to see if that helps. A lot of times during surgery the dr will use steroids for that very reason when doing spine surgery.

Again, I will tell you Baclofen is not like regular muscle relaxers, they work in a completely different way. Their make up components are different. It would be worth your time to consider giving it a try, you have nothing to lose. If yo would take them on a schedule for 2 months you may be surprised. I am now taking 20mg 3 times a day. If I were not on Baclofen, I would be in bad shape, getting in & out of bed, being up on my feet, or just getting in & out of my car. I started out on 10mg but after several years needed an increase. You & I are in the same age bracket, I am 64.

Please don't take this the wrong way, but in today's environment with pain mgt, you need to be open minded about trying different things to get relief. Lots of times we can revisit something that did not work as well before & find the 2nd time around it was completely different.

It is great that you have an exercise program. If the gym you go to has a pool or a jacuzzi, try it out. I have both at home & I use them.

As for more surgery, more than likely since the surgeon says the mechanical issues look fine no other surgeon would touch you. If this were me in your shoes, there is no way I would consider another surgery. They cannot operate based on pain, there has to be a mechanical issue to warrant more surgery. However, ask for a copy of your MRI reports after surgery & post the results here.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 8/1/2017 3:44:41 PM (GMT-6)


Posted By : qm2hill - 8/2/2017 4:43 AM
Thanks for your honesty and quick reply. My bottle of tramadol from the VA pharmacy doesn't say ER or extended release. Just says "Tramadol HCL 50mg tab." I take 2 twice daily. I'm requesting an MRI since it's been several years. How do I upload a copy so you can see it? Is there an attachment button on this messaging reply form? Don't see one; please advise. I'll discuss baclofen with pain doctor; and increase dosage on tramadol.

Thanks for your help; I appreciate your advise very much!

qm

Posted By : straydog - 8/2/2017 6:30 AM
qm, I went to Drugs.com & looked, it appears that you are on the instant release and on a very low dose!! No wonder you hurt!! There is no reason for the dr to not increase your dosage. I do know with the VA that you will be limited somewhat, however, considering your surgery not helping the dr should take this into consideration. Explain to the dr that the pain is interfering with your quality of life. Let him know you are trying to exercise at the gym but the pain is making it very difficult, you are limited in carrying out your daily activities. Inflammation & muscles spasms are two of the big instigators of pain, you may want to also discuss doing a short burst of oral steroids to see if that helps. Its a 5 day course with a taper.

As far as trying to upload a report here I do not think it can be uploaded. Unfortunately, our system here is ancient compared to other forums. If you have the patience just type in the conclusion of the report instead of the entire report, lol. While at the VA, I would obtain copies of any MRI's reports from them, tell them you keep records for your own personal use.

Advocating for better healthcare is a must today. We have to educate ourselves about our conditions & the medications we are given. I always go to Drugs.com to look up medications if its something I am not familiar with. How long have you been on Tramadol?

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 8/2/2017 7:41 AM
Qm:
It may be the case that a new MRI does not reveal any physical or anatomical dysfunction that explains your ongoing pain.

"Failed back syndrome" is a diagnosis of exclusion. "Failed back syndrome" is a loosely defined label given when all other known causes for persistent pain have been ruled out.

In most cases, the persistent pain experienced in "failed back syndrome" has origins in sensory processing hypersensitivity. The affected peripheral nerves have become overly sensitized through repeated surgical procedures and the associated surgical trauma, resulting in a hypervigilance to sensory and pain stimuli.

The same mechanism of developed sensory nerve hypersensitivity is at the root of reflex sympathetic dystrophy and complex regional pain syndrome.

In understanding the hypersensitivity of the sensory nerves, it is helpful to provide an analogy. A downed electrical power line, the frayed cable line sparking with electrical current is one way to visually represent a hypersensitive nerve root. A radio with the sound volume turned up to a loud and blasting level is another way to give meaning to sensory nerves registering a high level of pain.

The point being: Sensory nerve hyperesthesia is a common cause of persistent pain that accompanies "failed back syndrome." There is often no physical or anatomical finding that explains the pain (ex. no gross physical defect on MRI air CT imaging). The pain's origin is in an exaggerated sensitivity of the sensory nerves to stimuli (ex. The light touch of a feather on the skin is incorrectly perceived and processed to be many, many times more harsh). There is a mismatch between the actual stimuli and the brain's interpretation of the stimuli.

The best hope for dampening of your lumbar pain is to work on desensitizing the sensory nerves. Gentle yoga, gentle stretching and mobilization. Swimming or active movement in a warm therapy pool. The treatment focus is in flooding the affected sensory nerves with purposeful incoming stimuli. Incoming purposeful stimuli serves to block out the errant self generated sensory impulses that are the basis of the persistent pain. In this approach, the ongoing cyclic pattern of pain = muscle co-contraction = muscle guarding and spasm = less movement = more pain is interrupted.

Additional surgery is to be avoided. Added surgery fuels an underlying basis of RSD and CRPS. Surgery is traumatic. Surgery is itself a trauma that can form the basis for RSD

Keep faith and hope, there is reprieve from pain due to sensory nerve hypersensitivity.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : qm2hill - 8/2/2017 11:45 AM
Thank you so much for your advise. I will avoid surgery if my next mri shows no mechanical issues. I am swimming today and I walked on the treadmill. I can't ween myself off my backbrace, however. I'm just in too much pain and pressure without it.

I will also ask dr. for extra strong pain meds. I've been on 50 mg tramadol for 10 years; I've suffered everyday.

Thanks,

Qm

Posted By : pitmom - 8/2/2017 2:10 PM
Doesn't the VA offer the 'Choice' program? Where you can see the doctor of your choice?

Can't you see a pain management doctor through Medicare?

As for the Tramadol...I'm 4'11" and 94lbs and on the exact same dose! Definitely talk with a doctor about that!

I haven't had back surgery but I do have herniated lumbar discs with narrowing of the nerve openings, etc. I've had injections which did help with the 'nerve shocks' similar to sciatica. I too have constant burning sensation in the lumbar region, meaning I'm on fire from the top of my butt cheeks to just under the ribs, from hip to hip. The only things that have helped with that are massage (temporary) and a t.e.n.s. unit (longer lasting). I don't have access to a pool and even the YMCA a few towns over is too expensive for me to join.

I wonder how old your mattress is? They are usually good for about 10 years and may need to be replaced after that. Last year, I purchased a memory foam mattress which has given me a little relief. Do you use anything like a body pillow or one under the knee for spine alignment while sleeping?

How old are your shoes? Worn out shoes can cause spine problems and pain. I was told not to wear the same pair of shoes 2 days in a row and to make sure they give good support. It's summer now and wearing flip flops has definitely added to my pain levels!

How is your posture while sitting? Do you stay in one position a lot? This can add to fatigue. I recently got a cushion to help take pressure off the tailbone (I have cysts) and it also helps keep my spine in better alignment, taking the pressure off the muscles.

You work out at the gym and that's great. Have you incorporated any 'core strengthening' exercises? "Planking" for instance? Can you, after your surgery?

Can you soak in an Epsom Salt bath? Can you take magnesium supplements? These are supposed to do good for muscles.

Last but not least...THANK YOU FOR YOUR SERVICE! I hope you find solutions that restore some comfort.

Posted By : straydog - 8/3/2017 8:34 AM
QM, you need an increase with Tramadol. Ten yrs at the same dose is just nuts. If a person takes medication long term such as you have, it loses its effectiveness eventually. Again, please go to Drugs.com & look up Tramadol & read about dosages. Now the dr will not make a huge increase, but take whatever he gives & give it a try for a month. See how you do. Going in to see the dr & being informed when you speak to him will help, at least it should. An informed patient, makes a much better patient.

To be very honest, when a person had back surgery such as you have, there is always a risk of potentially having more pain afterwards, even with the mechanical issues being fixed. Some drs will tell a patient this, some don't. Unless you were to have a real big issue show up on an MRI, I would certainly not consider a second surgery. Each time you have this surgery the odds of success goes down somewhat. I totally understand your need to lessen your pain. We are all in the same boat trying to get better relief.

When getting in the pool, please do not start off full blast, lol. Pace yourself on building up, otherwise you may hurt worse.

Braces are controversial, most drs do not like them because they say the braces weaken the muscles. Use to everyone got a brace but all of that has changed & they use them short term. If you have been in one this long, there is a really good chance this has happened to you. At some point you may try weaning yourself from the brace very slowly.

We will do our best to help you out any way we can, lots of experience here with dealing with pain. We can throw things out that has helped us & some may be worth giving a try you have nothing to lose.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

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