1 1/2 year post L3-S1 fusion new diagnosis
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So i got a multilevel spinal fusion june 15 2016 and six months after that was diagnosed with scoliosis in my thoracic. The pain is absolutely terrible. i know for a fat i will never win this battle with my back so i have been putting it off going to the doctors. Im trying to figure out since i am done growing (im actually shrinking now.... im 28 and lost 1 1/2 inches) if there is even anything they can do. also my neck hurts too.. so basically the remainder of my spine is crapped out. I am gonna call the doctors to see what ii should do. i also get pain down my arms to my finger tips on both arms and my neck goes numb. so here we go again! I've had 5 back surgeries and this crap isn't going to end! sorry needed to vent! haha
1 like, 14 replies
mike92384 Devilwearspaula
Posted
Devilwearspaula...I'm sorry you're life has become a living Hell because of yours spine. I have problems in the cervical spine, which causes severely sore shoulders, muscle spasms in the back of my neck, & headaches, along with light-headedness. Yes, I go to therapy, but I don't hold out much enthusiasm that this will alleviate the problem.
I fail to understand how neural foraminal openings can be widened by physio, but I'm told working the muscles can relieve tension on the impinged nerves. Go figure.
A lot of doctors tread very carefully when it comes to spinal surgery. The surgery itself may not do much good, or it can cause serious problems...even to the point of crippling the patient. I know of a young man in his 20's who 2 years ago, was having problems with his legs giving out on him. Finally after he went to hospital, it was discovered he had a massive growth & a smaller one on his spine. Two surgeries were performed. Then radiation. I wondered about radiaton when the tumours were not cancerous but a nurse friend of mine explained that if there were just remnants of the tumour, the radiation would likely kill them off, preventing them from growing. Two years later...the young man is still not working & is in a wheelchair. I think perhaps something may have gone sideways during the surgery, i.e. a nerve may have been nicked???
You have pain down your arms, & into the fingertips. This may be caused by a pinched nerve in the cervical spine. Same for the numbness in your neck.
Having problems in the spine is a real b*tch. No two ways about it. Please let me know how you get on.
Devilwearspaula mike92384
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Yukonjak Devilwearspaula
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The numbness and tingling you're feeling down your arms are similar to the symptoms I had several years ago. I fell backward on an icy driveway, and hit the back of my head on the pavement. A few hours later, I had lost most of the strength in my arms and had simultaneous numbness and tingling down my arms (one side more noticeable than the other). A Neurosurgeon first sent me for X-rays, an MRI, and physical therapy (which did nothing to restore the lost strength). He then replaced 2 cervical disks with cadaver bones, and stitched the assembly together with tiny titanium plates. Apparently, when the back of my head hit the pavement, it jarred some arthritis spurs loose, and they were impinging on the spinal cord in my neck. They went in through the front of my neck, and you can't see any scar today. That was the easiest surgery I've ever had, and the numbness and tingling were gone by the time I left the recovery room. I chose to use cadaver bone, rather than have him take bone segments out of my leg. I'd heard that the recovery from the removal of bone from your leg is much tougher than the recovery from the cervical surgery. At that time (about 15 years ago), they radiated the cadaver bones to make sure I wouldn't get an infection from the donor's unknown health history. I believe they now use a synthetic bone material, rather then either of the 2 sources they used at that time. Following that surgery, I went back to PT to strengthen the muscles that had deteriorated over the time span of about 2 months. The surgery probably took no more than an hour, but they insisted on keeping me overnight as outpatient surgery to make sure nothing went wrong.
?Since then, I've had spinal neurosurgery (L4-S1) to remove more arthritis spurs that are causing peripheral neuropathy (PN) in my feet. I feel fortunate that the PN pains are intermittent, so that they only cause me problems when I stretch out on the couch to watch TV in the evenings, and when I lie down to go to sleep. That surgery was partially successful as it removed the numbness I used to feel in my legs, which made walking difficult. However, the PN pains are more intense now, and getting worse. I tried a spinal cord stimulator (SCS) trial 2 years ago, and that was a total failure. The stimulator doesn't block the PN pains; it tries to mask them by superimposing a "constant nerve stimulation going in the opposite direction", which is what I was told would happen. The pain from the stimulator was worse than the PN pain coming from my feet, so I had them remove the trial stimulator after 3 days. That's why they try a stimulator for a trial period before installing it permanently inside your abdomen. Since then, I've read too many horror stories on this website about SCS devices that don't perform in the same way as they did during the trial, and installing or removing a permanent SCS is a much more intense surgery compared to the installation of the trial SCS. The neurosurgeon that did the spinal surgery proposed a newer, higher frequency SCS a few months ago, but I've chosen not to even undergo that trial, because of the numerous complaints on this website about a variety of SCS manufacturers products that had to be removed. I've also tried a specialized TENS unit that is supposedly designed to encounter and neutralize the specific frequency of PN pains. It seems to work sometimes, but not always. It does enable me to fall asleep because I can set it on a timer to run for 15-45 minutes. If I haven't been able to fall asleep by the time it goes off (about once a week), I then have to resort to taking a pain pill (Tramadol), but I hesitate to take any pain medication for fear of becoming hooked on it.
?Hope these experiences are of some help to you. As you can tell from some of my wording above, I'm not a Doc, so I'm clearly not offering you any advice. I don't want to be accused of practicing medicine without a license!
Devilwearspaula Yukonjak
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oh my goodness!!!!! i am so so sorry you had to deal with that! that's so scary. are you feeling better? i have been on so many medications i finally said no. and thank god im not on any pain medications. yuck!
I appreciate everyones responses on here! thank you so much for the advice! <3
mike92384 Yukonjak
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Yukonjak...I read with great interest, what seemed to have started your troubles..the fall.
You went on to mention L4-S1 & arthritis spurs were removed, which was causing peripheral neuropathy in your feet. I have moderate-severe narrowing at L5-S1. My feet will burn at times, & become quite red along the bottoms. My toes (in between) are pinkish. The tops of my feet are not red. The Neurologist has done EMG on my legs, it the result was normal. I walk normally, reflexes are normal, etc.etc. MRI of the brain, cervical spine, & lumbar spine show deterioration, the worst of the deterioration in the neck. Yes, I have some issues in the lumbar spine, but nothing compared to the cervical spine. As mentioned the L5-S1 is mentioned twice in the MRI report. The 1st MRI done 16-18 months ago, said "severe" narrowing at the neural foraminal at L5-S1,while the test done in Aug./2017 says "moderate". I suppose it's the opinion of the one who reads the MRI's. The Neuro says I don't truly have a neuropathy, but "think's" the burning in my feet & mildly in my legs are of the 'sensory' nature. Quite frankly,I think this is all horseradish. I do think the burning is caused by L5-S1. I do not have shooting pains going down my leg..but the most annoying thing is the burning...both feet...both legs at times. I also experience pins/needles although mildly in my legs. Yet again, EMG etc. is normal. Do you think the L5-S1 is causing my problems in the feet? Here in Canada, a Neurosurgeon would not operate unless I were to lose control of my bowels/urinary habit.
I guess I just have to tolerate it.
As for my neck...what's going on bothers my shoulders a lot..the muscles along the top of my shoulders are very sore, & there's severe narrowing at C5.
I'd appreciate anything you might suggest.Thanks in advance.
mike92384 Devilwearspaula
Posted
Hello again, Devilwearspaula...medications??? Why bother? All they do is mask what's going on.
I found Gabapentin to be absolutely useless. I have also read about many people taking high doses of it, then when they wanted off, they had to wean for a long time. Apparently, it's a real b*ggar to withdraw.
I was on only about 400mg/day...but it wasn't doing much..yet the Dr.said I could titrate the meds. No way, Jose. I simply stopped taking the Gabapentin, & found that I could tolerate my pins/needles without the help of the meds...besides, the Gabapentin did absolutely nothing for the burning sensations in my feet.
Luckily for me, if my feet are burning when I lie down, when it comes time to go to sleep, I have a pillow between my legs. I turn on my side, & the burning stops.Mystery?...I don't know, but if that stops the burning, then so be it.
Yukonjak mike92384
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Mike,
?I forgot to mention that I also had EMG studies done twice, and both times, they came back showing good conductivity to my feet/toes. Another item I didn't mention is that a different neurosurgeon looked at my MRI and X-rays following the L4-L5-S1 surgery, and told me not to consider any more surgery on my spine, as it "could become unstable". He reviewed those records as a courtesy to my son who is a Physical Therapist out in Utah, and this neurosurgeon sends a lot of his patients to my son's In-Patient rehab facility following surgery. Thus, I haven't been examined by this second neuro Doc, but hearing his prognosis convinced me not to make the effort to fly out to Utah to be examined by him. His opinion that my spine could become unstable is what led me to try the Spinal Cord Stimulator, without success.
?I've concluded that the cause of my peripheral neuropathy is related to when I "unweight" my spine by stretching out on a couch to watch TV, and when I go to bed for the night. That's when the pains fire up intermittently. I can't correlate why they occur when they do. I've tried holding my breath for as long as possible, and remaining as motionless as possible, but the pains still occur randomly. I have a fairly high pain threshold, thanks to numerous other surgeries (both knees and 1 hip replaced, and numerous cleaning out of torn meniscus, broken arms, etc.), but these PN pains are tough to ignore. They build up to a pain level 6-7 over a few seconds, stay at that level for 20-30 seconds, and then gradually taper off. The best scenario is if I can fall asleep between these bursts of pain, but sometimes, I can't get to sleep without resorting to the Tramadol. I have been on 600mg of Gabapentin and 50mg of Amitriptyline daily for several years. I've tried going off them, but when I do, I have to resort to the Tramadol or go sleepless. I've also read the horror stories about Gabapentin and Amitriptyline in long term use, and wish I could go off them totally. The Neurologist that initially diagnosed the PN and prescribed those 2 meds told me that he had patients taking as much as 2,400mg/day of the Gabapentin, with "no bad side effects". When I ask my Family Practice Doc about the long term effects of those drugs, and my suspicion that my memory isn't what it used to be, he runs a 5 minute memory test, and says there's nothing unusual about my memory at age 75. No promises about what my memory will be like at age 85!
?Reading about the requirement to have a loss of bladder control before the Canadian healthcare system will approve operating on your spine confirms my opinion that most Americans have no clue about how healthcare is rationed in Canada. When I had my lumbar surgery, the neurosurgeon's staff input the wrong billing code to Medicare, and they challenged the billing because there was no prior evidence that I had any problems with bladder control. I wasn't aware of the possible connection between spine issues and bladder control until you reminded me of that fact. I can talk about rationing of services in Canada as a former Canadian myself, and having seen the poor care that's being provided to relatives still living in Canada. Also, Americans have no idea about the levels of taxation in Canada to pay for your healthcare. I'm not trying to bash your system, but it infuriates me when I hear the talking bobble-heads on American TV extoling the merits of the Canadian healthcare system, when they have no knowledge of the rationing and taxes. I shudder to think of the disaster if we adopted some form of socialized medicine down here, with the incompetents in Washington deciding who gets what treatments. Just look at how badly the Veterans Affairs system operates down here, and they want to put everyone on Medicare? No thanks! Bernie Sanders should go back to the USSR (where he went on his honeymoon!), and try out their healthcare system before he tries to foist it onto unsuspecting Americans.
Sorry to go off tangent about politics!
?Yukonjak
mike92384 Yukonjak
Posted
Yukonjak...no need to apologize for your "tangent". I'm almost ashamed of the "healthcare" we get here in Canada. A specialist may not know what the problem is, just sits & scratches his/her head...but doesn't offer to send you to anyone who might know what's going on. They say "the EMG, NCD is normal..signals are normal in the muscles, etc."...so just because those tests are normal, they are at a quandry as to what's wrong with you. The latest Neuro said he doubted the narrowing at L5-S1 was the cause of the burning sensations, while the original Neuro said she believed it was the culprit. However, she was a bit of a lazy lump..not ordering an MRI of the brain because she said in her opinion it would be overkill because likely there wouldn't be any difference in the results. The newer Neuro did MRI on the complete spine, including the brain. As mentioned in my previous post, the majority of my problems are in the cervical (neck). There is severe narrowing at C5 which affects my right shoulder, & to some extent, the right arm, along with some pins/needles in my fingers. There is also narrowing on the left side. There is moderate narrowing of the neural foraminal openings in the lumbar spine. The written report of the latest MRI mentioned the narrowing at L5-S1 twice. The wording is "Grade 1/11 anterolisthesis x9mm, associated with bilateral pars interarticularis defects"
Then in the summary, it says. "Degenerative changes in the lumbar spine. In particular, there is grade 1/11 L5-S1 spondylolisthesis associated with a moderate left neural foramen stenosis".. I draw your attention to the word "moderate". The original MRI dated some 16 months prior to this, stated "severe".I would assume it's based on the opinion of the person reading the MRI result. So which is it...moderate or severe. I'm not asking you...I'm questioning outloud. Now the newer Neuro said that it was quite possible that area could be the culprit causing the burning.
He says "I think the problem is sensory". I'd surely like to know what causes my feet & lower legs to burn just out of the blue. Something is bothering the nerves, & nobody will convince me differently. If I've got too many blankets on, then the burning should subside immediately if I uncover the feet & legs. I'd like to know how my skin or whatever it is can be so very sensitive, IF indeed 'sensory' is the cause.
Today's medicine in my opinion isn't nearly as accurate as it was in years gone by. It's a business, not a caring organization. People have surgeries & are sent home the same day. While I do agree that some very minor surgeries don't require admission to hospital, the likes of a double-mastectomy certainly do, yet I know of a woman who was being sent home the same day after having double-mastectomy. She was in pieces worrying about that. My advice to her was to ask to see her Dr.before she entered the operating room. He told her she'd be in hospital 2-3 days, but the nurse who prepped her for surgery told her she was going home because there weren't any available beds. The mind boggles. It isn't healthcare anymore...it's "healthREPAIR". They truly don't give a damn about you.
If you look up just about any sort of disease, somewhere there will be a paragraph or sentence that says.."there is no cure". How is it they know how to treat the disease, but can't cure it!!??????
Enjoy your day. Sorry for the rant.
dawniesback Yukonjak
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mike92384 dawniesback
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dawniesback...I don't know where you live, but having to buy an insurance policy to cover our health costs to me, just shouldn't be. Here in Canada, we have a healthcare system. Each Province has their coverage. I can go to the Dr. or hospital as many times as necessary, & it doesn't cost me a cent. This doesn't mean the system is great (read my post). IF I were to travel to another Province, it is recommended that I take out travel insurance...because sometimes a Province will bill the other (mine) directly, or you must pay the Dr. up front, then submit the claim to my provincial plan. I think this is shameful., & pre-existing conditions just may not or likely will not be covered by the travel insurance., yet I'm travelling within my own country.
dawniesback mike92384
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mike92384 dawniesback
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dawniesback...I'm sensing what feels like some hostility here. I was not in any way criticizing what you had written, but merely explaining what goes on here in Canada. I do understand the cost of medical care in the U.S. is astronomical., but just why the citizens tolerate it is beyond comprehension.
dawniesback mike92384
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Terry_the_Tumor Devilwearspaula
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