had L5/s1 formaminatomy, discectomy, fusion, laminectomy in the 80's and have had intermittent back pain and trouble walking on/off since then.
about 9 yrs ago i noticed i was leaning forward and to the left when i'd walk. caught a glimpse of myself in a storefront window and did a wth? lol
didn't have insurance at the time, but i am now on SSD w/medicare, so i began having some tests done last year. I quickly got tapped out financially with the 20% co-pay so I'm done and have to learn how to deal with it.
the MRI of my spine showed stenosis, but the neuro-muscular doctor never told me. the family doctor that sent me there never told me either. all i heard was 'your leg pain/weakness if from your back and no it can't be fixed'.
at the time they got sidetracked with bone scans, etc after the thoracic part of the mri because of a growth inside the spine bone there. fortunately it was no cancer, but apparently that was the only interest the doctor had. after that it was, 'i'll send a report to your doctor'
apparently my lower spine has started to get curvature of the spine, which i never had years ago according to MRI's i had done back then. can you get curvature of the spine as an adult??
i recently asked our new family doctor for a script for PT because i can no longer climb stairs safely, i have drop foot in both feet, neurogenic bladder stated after urodynamics test, all my sphincters below the waist are pretty well shot and i have bowel, bladder incontinence.
the script for PT said SS and bilateral drop foot.
so i go to the PT and he talks with me a few minutes and then checks my reflexes, has me walk and has me cross my legs. then he calls me over and says the spinal stenosis is very bad and he can't help me. every time i would argue with him that i just want to know what muscles aren't working right so i can figure out how to walk, etc, he said they are working right, but they are too weak and that's why like when i step over a door threshold (couple inches?) i have to jut my upper body forward to get in the doorway, climbing stairs, baby step walking, etc.
i've been reading a little bit of this forum and ppl have said bending forward relieves pain, exercise can help etc., but the PT said, i need a motorized wheelchair or i will do MORE damage every time i am in pain. he also said to see a mental health counselor to learn how to deal with this.
he was VERY nice. he specializes in backs and is not fresh out of school. he was very concerned and kept driving home the severity of it. when i continued to argue that i could be helped if i just learned what muscles to use, he finally said if i could find a PT that could give me exercises to help me, he would pay for it. he was that confident.
i know he was only trying to help and had to do a little tough love to drive home the point, but i was pretty well shocked that no one told me i even had SS, let alone that my daily life was making it worse.
so now i have to call my family doctor back and ask him what's up with that and what can i do? before when i told him i was in a lot of pain, he said because it is chronic pain he can't give me anything for pain. he can only offer neurontin, elavil, etc which i have taken in the past for RSD. those pills may help a little, but the side effects are too crappy to deal with for the minimal pain relief. plus neurontin is about $200 for a months supply, so it's not doable.
i got a cheaper AD that was supposed to help with my bladder and i think it did, but the nausea was unbearable. I got another cheapo drug and the metallic salty taste was so bad, everything i ate or drank tasted like i had just brushed my teeth with baking soda and forgot to rinse.
the only medication i take is paxil which i've taken for about 3 yrs and it's great. i really don't want to go down that AD road for nerve pain again. I was allergic to most everything. i call paxil my miracle anti-ahole pill. it really is everything i need in that dept and i can't see messing with a good thing for neuro pain relief that is minimal.
i just signed up for a medicare RX plan, but will still have co-pays so i don't know that i will be any better off pharma wise
i'm going to call my family doctor this week. what should i ask him other than WTH why didn't anyone tell me?
i really, really don't want to use a WC. i have an old cane that i'm sure could use some updated version, but even there i looked at the 3 prong canes on amazon and went, 'oh hell no'. in that respect, yeah i do need counseling. i can't make it across the store or in/out of my truck very easily and yet i refuse to use the motorized cart at walmart. I guess because i always heard, use it or lose it and now the tables have turned and it's use it and you will lose it further.
i am on fire from the waist down most days. i get muscle spasms in my feet really bad, and if i bend over to pick something up (can't squat at all) it rips the muscles in the back of my thighs instantly. I've found that happens when i walk over a door threshold too and i guess that's why i have to jut my shoulders forward to get through. Sometimes just bending my leg in bed while laying on my side will cause that muscle to feel like it's ripping. i have to be very careful in my body movements to keep muscles from doing that.
has anyone else gotten to this point too? what do you do?
sorry for the long winded intro. i'm sure there's more i could say, but you all know the drill = drop foot, spastic baby step walk (like you have parkinsons), can't climb stairs, can't run anymore (total spaz), blah blah.
it's no fun and i'm in my mid 50s and figured i was just getting old, although i know ppl in their 80's that get around much better than i do. my body acts like it's about 25 yrs old than i am.
i don't ask for much in life. i'd like to be able to walk my dogs (3 of them - bruisers and my baby step walking isn't giving them any exercise), shop occasionally, do animal rescue work, visit neighbors, etc. my circle of what i can do has gotten that small! i'm afraid it will get even smaller if i don't get some answers.
oh yeah, i can't sit in any chair or stand without getting on fire instantly, so i lay in bed a lot. i do get up often with the dogs, etc, but even there, getting up/down/up down, after awhile, i feel like i'm in walmart and can't take another step. ie: i'm done unless i totally stop and rest.
thanks for any helpful tips you guys can provide. i know i should rip my doctors a new one, but that's not going to help. all i really need to know is what can i do to work with them to help me function. this new family doctor is really nice. he genuinely wants to help, although i don't understand the no pain pills thing. i've never had a problem with narcotics and really can't stand them. i just don't know what else will work that is affordable.