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Thread: Considering Second Opinions

  1. #1
    Join Date
    Oct 2014
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    Montana
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    Considering Second Opinions

    Hi everyone - This is my second post to the forum, last year I tried posting about my scoliosis while doing imaging tests and they found a tumor, which of course threw everyone's thinking off, and I bailed on the forum thinking my problem was something completely different, only to find out in subsequent testing that there is no tumor. I repeat, there is no tumor.

    So, now I'm going over the findings with a new perspective.

    Here's the deal, short and sweet - T/L scoliosis, diagnosed at like 10 or 12 or whenever, 36 degrees at L2, 17 at T9-10. Twisting, of course. Broad based disc bulge in combination with facet arthropathy (osteoarthritis) in L4-5 and L5-S1, both causing "mild to moderate" spinal stenosis. Osteoarthritis of the sacroiliac joint the osteophyte formation and subchondral degeneration (ie, osteoarthritis). Also, although I didn't get imaging, I suspect osteoarthritis in the left knee as well.

    So, you know, mild-moderate scoliosis combined with lumbar disc damage and arthritis.

    I'm 32.

    So here's the deal. Of course, no surgery. I've done PT for years, I've never seen improvement. I live in Montana, and my surgeon basically says two words to me and walks out of the room. He offered to do a cortisone shot (haven't decided on it yet), I tried Gabapentin for about 6 months which helped calm the sciatic but also made me into a zombie, now I take meloxicam and a sleeping pill daily. I use the capsaicin daily as well, which I really, really, really appreciate and recommend. I have low back pain, sciatic pain in bursts (like for a few weeks and then not for a few weeks), and a pain limit of about 2 hours in a chair. More of less depending on the quality of the chair and you know, the alignment of the stars of some such baloney (that's mean, if you can cure me with the stars, I'll take it). Left leg numbness in a patch from hip to knee. Can walk up one flight of stairs most days, two if I take a break and let the pain subside a couple times on the way up. I work out almost every day, but what I can do each day varies. Sometimes I can run 10 miles on the elliptical, sometimes I can just get through the basic scoliosis stretching and call it a day.

    Because I live in Montana, there are no approved doctors here. I can fly to Portland for $120, round trip, and see an approved specialist there, which my primary doctor recommends, but I'm just not sure if there's anything to gain. Like most of you, I can work only certain jobs (standing) for limited amounts of time and $120 plus a room to sleep in plus food is not an insignificant portion of my income. I'm a librarian and a waitress. Don't get mad, I find that serving is a mentally distracting pastime that gets me moving and I practice NO BENDING! at work at all times. It is less painful then sitting in a chair.

    Given this information, what would you do? I can continue to manage it with meds and exercise and occasional complete mental breakdowns, I can try the cortisone shot (I had one in my foot once, it was terrifying, I'm not champing at the bit on that idea), or I can fly to Portlandia and seek a second opinion - with possibly nothing to gain (also consider even if he tells me to do more PT, I only have the PT's here in Montana to choose from, none of which are Schroth or SEAS or any other method trained and all of which are too busy to even look at my imaging). Would that doctor give me any other options? Have any of you tried other non-surgical methods that you recommend? What is the deal with the disc bulging and stenosis, is that like, a forever problem that I just deal with? Does disc "bulge" mean it's eventually going to rupture? (I would ask my doctor those questions but he just walks out of the room). FYI - there is only one spine specialist in my town, the closest town to me that has another is an hour and a half drive, each way, so really the next best option is Portland.

    I've read the adult bracing threads, I used to think I wanted to try it but to relieve the arthritis pain, I need to move. To let it stiffen, and the just allow movement occasionally, that's terrible. I don't think it's something I want to try.

    Thanks for reading - I hate posting to medical forums, I feel like you poor people don't need to read another persons sob story of pain and suffering. But I also wonder if you don't have advice as well. Can't know unless I try.

    Miss Masha, the limping librarian.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    Hi Masha...

    If you're getting some relief from the sciatic pain, I think you might be able to build your core muscles strongly enough to keep that at bay. You might want to take a look at the Yoga for Scoliosis CD. Yoga is pretty effective in terms of core strengthening.

    The size of your curve really is unimportant in terms of the surgery decision. There are plenty of people with small curves who have as much or more pain than people with big curves. If you decide to try Portland, you might want to check out Robert Hart.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  3. #3
    Join Date
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    Quote Originally Posted by Masha View Post
    I've read the adult bracing threads, I used to think I wanted to try it but to relieve the arthritis pain, I need to move. To let it stiffen, and the just allow movement occasionally, that's terrible. I don't think it's something I want to try.
    Spinecor allows any kind of movement.

  4. #4
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    That may explain why nobody credible can get Spincor to work in avoiding surgery.

    Just a thought.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
    Join Date
    Mar 2010
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    Good evidence showing that people trying to convince us that nothing may avoid surgery, are worried about how good may really be something so good as Spinecor is.
    Last edited by flerc; 02-18-2016 at 05:14 PM.

  6. #6
    Join Date
    Sep 2011
    Posts
    237
    Quote Originally Posted by LindaRacine View Post
    Hi Masha...


    The size of your curve really is unimportant in terms of the surgery decision. There are plenty of people with small curves who have as much or more pain than people with big curves. If you decide to try Portland, you might want to check out Robert Hart.

    Regards,
    Linda

    in the UK the size of the curve is all-important- it normally has to be 50 degrees or more for a surgeon to get involved - except if you are still growing and the curve is massively progressing They don't do surgery for pain relief itself but for cosmetic reasons mainly. Of course cosmetic really refers to the size/twisting rib hump etc.
    Last edited by burdle; 02-19-2016 at 10:05 AM.

  7. #7
    Join Date
    Mar 2010
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    2,004
    In many South/Center America countries, 40º is the limit and people use to decide surgery because prevention and cosmetic issues. I saw in a group a women around 35 y. o. with 40º, free of pain and progression, without (at least known) complications, she posted a pic of her back and it was (was) very beautiful and she decided to have surgery. I was the only one not encouraging her to take such decision.
    In my country 50º is also the standard but is exactly the same 50,1º or 170º, surgery is always recommended.

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by burdle View Post
    in the UK the size of the curve is all-important- it normally has to be 50 degrees or more for a surgeon to get involved - except if you are still growing and the curve is massively progressing They don't do surgery for pain relief itself but for cosmetic reasons mainly. Of course cosmetic really refers to the size/twisting rib hump etc.
    I should have made it clear that I'm talking about adults who are old enough to have stenosis.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  9. #9
    Join Date
    Feb 2016
    Posts
    14

    Suggestions

    Masha - This is also my 2nd post. Your history sounds similar to mine.

    Your mileage may vary, but I had success with traction for my disc problems. My therapist had a flat traction bed with a small pump. She told me to never use an incline bed. (You probably already know this, but she also told me never to do crunches again. Apparently they are really bad for lumbar disc problems. Crunches are out. Planks are in.)

    I have had 2 sets of cortisone shots (nerve blocks). The first one worked great. I re-irritated the disc about 3 weeks after the 2nd set. My doctor described the nerve block as bathing the disc in a cooling liquid. The goal is to calm the inflammation so (hopefully) the disc can heal itself.

    The shots actually worked pretty well for me, but ... I do not like the side effects. Everyone is different so you might not experience these side effects. I didn't have a period for several months. If the patient is a female in her 30's, doctors really should mention this! There's nothing like buying a pregnancy test at age 39. I also had horrible skin-peeling acne. My dermatologist said that she sees that a lot after cortisone shots. I could live with the missing cycles and acne, but the worst side effect was hair loss. I lost a lot of hair after the single shot. After the set of 2 shots, I lost at least half my hair. My doctor doesn't believe me. Three months to the day of the shots, my hair started falling out in handfuls.

  10. #10
    Join Date
    Oct 2014
    Location
    Montana
    Posts
    6
    Quote Originally Posted by spitfire View Post
    Masha - This is also my 2nd post. Your history sounds similar to mine.

    Your mileage may vary, but I had success with traction for my disc problems. My therapist had a flat traction bed with a small pump. She told me to never use an incline bed. (You probably already know this, but she also told me never to do crunches again. Apparently they are really bad for lumbar disc problems. Crunches are out. Planks are in.)

    I have had 2 sets of cortisone shots (nerve blocks). The first one worked great. I re-irritated the disc about 3 weeks after the 2nd set. My doctor described the nerve block as bathing the disc in a cooling liquid. The goal is to calm the inflammation so (hopefully) the disc can heal itself.

    The shots actually worked pretty well for me, but ... I do not like the side effects. Everyone is different so you might not experience these side effects. I didn't have a period for several months. If the patient is a female in her 30's, doctors really should mention this! There's nothing like buying a pregnancy test at age 39. I also had horrible skin-peeling acne. My dermatologist said that she sees that a lot after cortisone shots. I could live with the missing cycles and acne, but the worst side effect was hair loss. I lost a lot of hair after the single shot. After the set of 2 shots, I lost at least half my hair. My doctor doesn't believe me. Three months to the day of the shots, my hair started falling out in handfuls.
    Thank you for your super helpful response. I was considering cortisone, but I had never heard of those side effects and I for sure have to investigate now. I'm sorry your history is so similar to mine, I'm sorry for anyone who has to deal with this so young.

    I was told that I could and should do that pilates "crunch" move where you sit up in a crunch position and then bounce your hands to the count of 100. Is that not ok? It's amazing how many different opinions and instructions you get when you live in little poe dunk towns where no one has ever seen this before. I don't think I even know what a plank is. I'll look it up.

    So no inversion table? What about inversion over an exercise ball? I've had therapists tell me to do this as well as "scoliosis you tube videos". I do this and the pilates crunches every single day. I was also told to lay on a foam roller on my curve do the foam roller pushes my spine back into a more straight position for 5 minutes a day. Is that ok?

    I'm going to see a "pain specialist" next week - it was super hard to get into him, apparently his time isn't for the masses. But after sending mris, xrays, pt notes, reg doctor notes, and my left thumb, they have granted me an appointment. He does do "non-surgical disc decompression techniques". Any advice on those?

    What do you do for work, if you don't mind me asking? Do you have any advice for extending your sitting time? Or walking up stairs and hills? This was such a huge lifestyle change for me, I used to live and play daily in the mountains, hiking, skiing, trail running, camping, backpacking, harvesting the yearly catch...now I have to use a hiking pole to walk a mile in the woods, two is almost unbearable. Man, the places I went. At least I got to. I would love to know more about your experience. I'll try to search for your other post. Thanks again.

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Quote Originally Posted by Masha View Post
    He does do "non-surgical disc decompression techniques". Any advice on those?
    I did VAX-D many years ago, it’s a computerized table that pulls like a sophisticated rack.....Painful, expensive, but I have to admit that it did work, temporarily.

    Masha, you are young to be having disc herniation problems.....

    I did battle for several years and had the best luck with NSAID’s and hot water immersion.

    I love Montana.....and try to go to Glacier National Park to hike every couple of years...

    Welcome to the forum

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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