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just found out about SS

AnonymousUserAAnonymousUser Posts: 49,670
edited 06/11/2012 - 8:40 AM in Spinal Stenosis
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.


  • ps - the PT said exercise will make the problem worse and will not help strengthen my muscles. i've found this to be true because i'd walk A LOT and never build any muscle. i used to think i was really flexible, but it turns out that flexibility is really lack of muscle tone.
  • ps - here is a picture from the latest mri. i guess this is where the problem is? (L5?) looks like a cool picture but is meaning less to me lol

    i have a disc of the mri. i'll look further at them if they will be any help to anyone

  • U kinda understand where you are coming from,I just started with incontinence.And I also just found out you can get curvature when you get older.My problem is in the lumbar.4 of the 5 are shot.They said can't operate.If they did they wanted to take out 4 disc and put in 4 cages.but there was only a 50% chance of feeling better.So I decided against it.I had another mri last week, it showed some major changes for the worse,stenosis and all that crap along with tarlove cyst.As for the finanical problems for your rx's the partnership for america is a big help.Plus calling the company's usually have a patient assistance programs. They have saved my butt for the last 4 months.good luck and let me know how you make out
  • Wow, you have a lot to deal with. We all do. I wanted to just offer some encouragement as much of what you described is very familiar to me.

    I have been seeing a psychologist to help me find the new "me" and learn ways of adapting and living with the disabilities I have.

    One thing I have learned is that yes, there are things I can no longer do, but there are many things I can still do, just in a different way.

    For instance, I found new joy in Christmas shopping online this year. The exhilaration I felt when I would find a great deal was way better than trying to shop with the crowds. Do you know how fun it is to find hot items for 75% off? I spent less than budgeted for much nicer stuff than I would normally get. So rather than being bummed that I can no longer shop in the stores, I now realize that it is "fun" to shop online.

    I was/am a seamstress. For a couple of years I had put my sewing machine away, because I can not look down for any period of time and so I would get frustrated with trying to sew. My psychologist helped me to see that I can still sew in 10-15 minute segments, so I have taken on the new hobby of piecing intricate quilts. I can no longer sew the elaborate costumes or formal gowns for my children. These are too difficult and cause too much stress on my neck. But sewing a block together for a quilt is something that I can do, one square at a time. I sew when I feel like it, not more than a few minutes at a time. But eventually I will have a beautiful quilt to be proud of.

    Sometimes driving is an issue for me. I have learned that it is okay to ask for help, and I have many friends who are willing to take me to doctor appointments. We then take advantage of the time and go somewhere for a burger or salad bar. never anywhere expensive, but the time we are spending together is very rewarding. Again, rather than focus on what I can't do, I found a way to adjust.

    Walking with a cane is a big one for me. I need it, won't do it. So I know where you are coming from. I find that my stubbornness about this is hurting me more than anything. So I have to ask myself why is it such an issue. What I have determined is that using the cane is the first step in giving up what independence I have left. But alternatively I have to hold on to the arm of whomever is with me for assistance, so I've already given up my independence in that area. I would suggest that you do some self analysis as to why this is so difficult for you. It may help you come to terms with it.

    What is SS? I am assuming it has something to do with stenosis. From what I understand about stenosis, remaining still is the worst thing you can do, so please try to keep moving, however small it has to be. Water therapy is good. I'm excited for our local gym to open it's brand new pool this week. I plan to be in it several times a day. If nothing else, sitting in your chair and moving your feet, raising your arms, rolling your shoulders, etc. can help. With stenosis, the longer you sit, the more it hurts, so keep yourself moving as much as you can. I understand that if you do something it hurts, if you don't do it hurts, so you're in a catch 22. I'm there too. Some days I want to give up, but then I realize that isn't good either.

    The physical therapist should have given you some very easy simple stretches or exercises so help with your mobility. He is probably correct in that he can't help "fix" you, but there are always exercises you can do to help yourself. Just go gentle and easy. I find that doing much of anything really flares up the burning "on fire" feeling you are describing. But doing nothing causes me to get weaker and weaker. My goal is to stay out of a wheelchair, and if I do nothing, I am certainly headed for one. It sounds like you are in about the same predicament.

    I too have a neurogenic bladder with incontinence. In some ways this is the most difficult thing to deal with because I can't predict when I will have an accident. But again, you can't let it control your life. Put yourself on a timed voiding schedule and monitor your intake if you are going to go somewhere. Though not ideal, and certainly not fair, this is manageable.

    Good luck, keep moving, and sorry about the situation you are in.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • thank you guys so much. i never heard of SS (spinal stenosis) until the PT told me. my sister reminded me that she told me it sounded like that years ago, only i didn't have internet back then.

    i am going to look into patient assistance rx programs jan 1st. my husband used to get his BP meds that way until medicare instated the Part D prescription drug coverage. after that he didn't qualify for the program.

    i applied for medicare rx assistance and am waiting for the denial letter, so we can send off to patient assistance again. that's the only way you can get the assistance while on medicare. i've been too confused to follow through with it. i notice a lot of things stress me out to tears that were so simple for me.

    that cane thing. i look at the 3 pronger and go to myself, 'that's for a handicapped person'! how stupid is that? lol. i'm going to work on that. it's not pride because i'm pretty laid back. it's more of i don't want to draw any attention to myself.

    i've been waiting for a few of my friends in town to join an indoor pool at the college. one friend has seizures and her mother is in her 70's, so they're under the weather a lot and we haven't been able to hook up. after that flailing experience when i tried to run a couple years ago, i'm scared to death to go in the pool by myself. i know it would help AND they have a hot tub :)

    what scared me the most is i gardened this past spring. pulled weeds, etc. all the while not knowing i was causing further damage. i'm going to keep moving, but just be more careful. i walk the dogs at least 3x a week. they're big dogs so i have to walk them one at a time, so i get several goes around the block.

    i may sound depressed, but i'm not. or at least i don't think i am and then i burst into tears when i get confused and don't understand something.

    i know how good stretching feels. oh man it feels great!! i wish my ankles would flex more. they only stretch so far.

    another problem i'm having is falling a lot. and my feet can be outside the covers and i can't tell it. sometimes i'll touch my leg with my foot and it's ice cold, only my foot doesn't feel cold at all. just really weird stuff like that. I think that's why i fall alot. i have to bang my heel on the back of a step coming down steps to orient where i am.

    i guess this isn't going away. hopefully my doctor can tell me more about what to expect. the way the PT explained it when i pointed to stroke patients getting therapy, they have a brain injury that can make new pathways, but my spine can't do that.

    thx for your insight. it really helps guys

  • I am right behind you

    U kinda understand where you are coming from,I just started with incontinence

    lol the worse part about incontinence is when you think you're done and stand up and realize you weren't ;) it's so weird to not have any sensation that you're going.

    otherwise i use pads and stay close to a bathroom. i thought maybe self cathing would help, but the urodynamics test showed volume and control is like a newborns, so i don't think i'd empty my bladder more fully cathing. it just doesn't have the volume.
  • Has anyone still have neck or ARM & Wrist problems after having cervical surgery. I had a four level fusion Sept 25, 2008 and still have problems with very COLD hands, pain in the wrist and sometimes in the elbow. I also found out that I had some Carpal Tunnell syndrome.
    Please, is there anyone out there with same or similar problems?
  • mrlee said:
    Has anyone still have neck or ARM & Wrist problems after having cervical surgery. I had a four level fusion Sept 25, 2008 and still have problems with very COLD hands, pain in the wrist and sometimes in the elbow. I also found out that I had some Carpal Tunnell syndrome.
    Please, is there anyone out there with same or similar problems?
    Howdy MrLee,

    See my sig. My C5/6 went great! I even woke out of the anesthesia in "happy tears" as all pre surgery issues were gone! Okay, fast forward, my C6/7 at 4 months still has fusion issues on the top - shown via MRI and X-ray. I felt a crunchy pop noise around week 5, and most symptoms came back! My C7/T1 is also now failing...lost my Ulnar for the arm and hand. My index and middle finger are numb again, and without Lyrica, I get the shooting pain in my shoulder blade and upper arm! My Ulnar transposition surgery fixed a lot of the Ulnar issues, but with the other level going, lost all that I gained from that surgery! I am on light duty, and in process of medical disability retirement (Law Enforcement, Pilot).

    Sniff... future surgery for L3/4/5, T5/6 and C2/3 with possible revision for the C6/7 - lovely... Now passing 5 months post op, no change - fusion still not happening on the top of the graph (seen via x-ray a week and a half ago).
    Oh, in 1984 crashed a helicopter, and these are the very areas that were "sprained" (no MRI or CT back then)....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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