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Thread: ugh pain!!

  1. #1
    Join Date
    Jun 2009
    Location
    Whitinsville, MA
    Posts
    131

    Unhappy ugh pain!!

    This totally sucks.. I have had about 3hrs of sleep each night for the past 2 days!! I got my GP to give me a perscription for perks, but honestly it works for like an hour!! I feel like I was kicked in the back and now have shooting pain down my legs, where it ends right in the bottom of my feet. I can't get comfortable!! I've tried heat, laying in the tub..this just sucks. Its really making my life completely miserable!!

    What kinds of things helped you?! Did u experience this kind of pain!?

    27 year old female
    Upper Curve 110 degrees
    Lower Curve 90 degrees
    Surgery with Dr. Wood at MGH 1/11/10 && 1/14/10
    Fused T2-Pelvis
    Back looks amazing and no more Hump! ^_^

  2. #2
    Join Date
    May 2009
    Location
    Topeka, KS
    Posts
    435
    Hello - I understand your pain completely (seems to effect my fingers typig sometimes too! Ha!) I just returned from a 1-week hospital stay from having a day of severe, untoleratable pain from my scoliosis. I don't see my dr until Aug 19th. Seems my pain is mostly on the left side, but in the evening depending on what I do during the day i have such severe pain it hurts tobreathe or anything else I do,which includes sitting in my chair watching TV. Sometimes I just give in and go to bed, but when I went to the hosp the pain was so horrible and it was only 4:30 in the afternoon. Only thing the hosp did was take x-rays (asking me if I knew how bad my back was!), dope me up no too many pain pills, lay me in bed for a week and send me home. Which, by that time, after lying in bed for a weke of course I felt much better. (Especially after being off their drugs). Now, Im back to the way it was. So, I'm going to do my best to just try not to pay attentiuon to my pain and not let it run my life. (easy forme to say at 12:52 in the aftenroon here!)

  3. #3
    Join Date
    Jun 2009
    Location
    Whitinsville, MA
    Posts
    131
    Rita,
    I wish I could goto the hospital. I just end up sitting in the ER for 8-12hrs and and then finally get called. The dr will come in the room look at my back and say wow you should really call your neuro. And when I explain I have an apt October 15 they will just tell me to take the pain pills and take an easy..Ok great this is easier said than done..Its getting to the point where it hurts to do anything. Walk, sit, lay down. I just can't get comfortable..I am soo tired but I can't even sleep..Even being doped up from the pain meds. it just lasts an hour and will wake me up from a sound sleep. I am trying to maintain a postitive attitude but this is getting me really upset!! How bad is your curve?! Do you suffer from the pain running through your legs? I couldn't imagine it going through my arms as well..ugh!!

    27 year old female
    Upper Curve 110 degrees
    Lower Curve 90 degrees
    Surgery with Dr. Wood at MGH 1/11/10 && 1/14/10
    Fused T2-Pelvis
    Back looks amazing and no more Hump! ^_^

  4. #4
    Join Date
    May 2009
    Posts
    3,729

    pain

    dear megz
    i used to get relief from hydrocodone, now sometimes need oxycontin, which i dont like being on, but the pain wears me down..i had to retire because of it! i now get some relief from pain management doctors, & had my 3rd in a series of epidurals yesterday..i know you have trouble with your insurance, but have you called any pain doctors...would any of them take your insurance?

    i so feel for you, as i know most all scoli patients go thru so much agony!

    take care
    jess

  5. #5
    Join Date
    Jun 2009
    Location
    Whitinsville, MA
    Posts
    131
    hey jess,
    I just saw my pain doctor last friday..He was the one that saw me for 3 minutes and just uped my dose of neurotin..Just a few days ago is when this pain has gotten ridiculious. I can't sit, stand, lay down with out being in sooooo much pain. I was trying to look up treatments, and came across hydrocordezone shots?! Have you had those before?! The first time I saw my pain doctor he told me about the epideural shots, but didn't advise me to have it done if I was plaining on going forth with the operation. He said it would prolong my healing time. I am willing to do just about anything at this point! Its like i take the pain meds and it wears out in an hour. I can't take anymore for another 5 hrs!

    27 year old female
    Upper Curve 110 degrees
    Lower Curve 90 degrees
    Surgery with Dr. Wood at MGH 1/11/10 && 1/14/10
    Fused T2-Pelvis
    Back looks amazing and no more Hump! ^_^

  6. #6
    Join Date
    May 2009
    Posts
    3,729

    pain

    dont know what kind of a pain dr sees you for 3 minutes! i feel for you...i have 2 good pain doctors...neurontin never did anything for me! i asked the doctor what it is supposed to do, cause i took it & felt nothing!! i had cortisone shots & they also did nothing..had them many times too...my dad said they worked for his tennis elbow...we have alot worse than that i think! maybe there are injections you could have that wouldnt interfere with your surgery..what about facet block or nerve ablation...might be worth asking about if you could get more than 3 minutes..see, i told pain docs i dont want surgery, so they threw in everything they could...& i may end up needing surgery, but am trying so hard to avoid it!!

    take care...i am so sorry for all your pain!

    jess

  7. #7
    Join Date
    Jun 2009
    Location
    Whitinsville, MA
    Posts
    131
    jess,

    Thats why I took myself off the neurotin the first time..I felt nothing was happening..So this time they decided to up the dose and assured me that I needed to give it time to get in my system..Blah we will see..If I don't see anything happening soon I will stop taking it!..How bad is your curve?! I HATE surgery and have avoided it for a long time but at this point..I would have it hands down!
    I have an apt in Aug 13 with my pain management dr..So I will bring something up to him this time..I will demand he listen to me haha!! Otherwise I will be seeking out a new pain specialist..I have had the worst luck with doctors lately!! I tried calling CT dR you told me about, but they need a bunch of stuff faxed to them. I had the worst time just getting stuff faxed to Dr. Rand's office..

    27 year old female
    Upper Curve 110 degrees
    Lower Curve 90 degrees
    Surgery with Dr. Wood at MGH 1/11/10 && 1/14/10
    Fused T2-Pelvis
    Back looks amazing and no more Hump! ^_^

  8. #8
    Join Date
    May 2009
    Posts
    84
    Have you tried pillows? I really hope your pain goes away. Keep us posted on how you're doing.

  9. #9
    Join Date
    May 2009
    Posts
    3,729

    pain

    hi megz
    which CT doctor did you try...i know dr mohr wants MRI sent to him...got an MRI & havent sent it yet, cause am first seeing dr neuwirth in nyc aug 6...i have 2 curves...upper 40 degree gets botox shots & most pain is relieved..lower 60 degree got epidurals lately, nerve ablation & facet block injections next (repeated)..all seems like temporary relief, at best...most of severe pain is in lower curve...
    i like dr weaver for pain management in CT & dr starkman for pain management in nyc...know what you mean about surgery...it seems almost inevitable at this point...but i keep resisting....

    i just hope you dont give up..i hate how you have to wait for dr appts...i have both private insurance (at quite a cost) & will have medicare in august...dont know what medicare will offer me, so was told to hold on to private insurance!

    you are in my thoughts & prayers...take care
    jess

  10. #10
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Quote Originally Posted by megz View Post
    The first time I saw my pain doctor he told me about the epideural shots, but didn't advise me to have it done if I was plaining on going forth with the operation. He said it would prolong my healing time.
    Hi megz,
    I just realized I had an epidural shot about three months before I had seen Dr. Rand. By the time you actually get scheduled for surgery with Dr. Rand, the cortisone will have completely worn off. I think you should revisit that with your pain Dr.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  11. #11
    Join Date
    May 2009
    Posts
    3,729

    pain

    dont know if it is always cortisone, as that is a med that never worked for me anywhere in my body...but it was some kind of steroid, & is supposed to last for some months....not sure why they are worried about it interfering w/surgery...my epidurals are supposed to last 6 months, but more likely 3... however, there are other things, even just better oral meds to hold you over...hydrocodone usually works for me, so i try to stay away from oxy whenever i can...

    i so wish there were some way to help you out..can you call other doctors til someone has an opening for you?

    take care, feel better..
    jess

  12. #12
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293

    Exclamation neurontin-do not self-manage

    Neurontin needs to be increased gradually to find the right dose. I was on the maximum post op for about 6 months. That dose is 3600mg a day divided into 3 parts.
    One should never adjust doses without MD supervision. Complications of reducing doses of some medications can result in seizures.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  13. #13
    Join Date
    Jan 2009
    Location
    Virginia Beach, VA
    Posts
    455

    pain..

    Just putting this out there....prior to my surgery in April I delt with a significant amount of pain everyday. I didn't want to be a narcotics because I have 3 boys to take care of so they just weren't an option. My surgeon put my on Tramadol same as Ultram for cronic pain and I had good luck with that. I also used pain patches called Lidoderm that I would use at night. As well as valium. You all may have tried these already ready but I had good luck with them so I just thought I would give my 2 cents here:O) hope it helps. I certainly hope you can all get some relief soon. I had serious pain for 5 years prior to deciding to have surgery so I wouldn't wish it on anyone. As far as nuertonin, I thought that was for nerve pain after surgery as far as when nerves are regenerating themselves. I could be wrong as I do not really now much about the medication and it's uses but that's what I thought. Good luck everyone, hang in there.
    Susan

    Diagnosed at 10, Boston brace from 11-13 yrs old.
    50* Lumbar w/ 5 centimeter shift to the left and slight rib hump...
    Surgery Date: April 15 and April 22, 2009
    X-LIF approach for disc repair L5,L4,L3,L2
    Posterior Approach for fusions L5-T5
    Dr. Fox @ Naval Medical Center Portsmouth
    Nice and straight now!!!!!

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,187
    Hi Megz...

    Karen is giving you good advice. Give the neurontin a chance. If your leg pain is neurological, the neurontin should help considerably.

    The good news is that acute episodes like you're experiencing usually don't last all that long. Hopefully you'll get some relief soon.

    Regards,
    Linda

  15. #15
    Join Date
    Jun 2009
    Location
    Whitinsville, MA
    Posts
    131
    Thank you all for your thoughts and express of concern!! =] I just starting feeling better ((knock on woood =) )) I still want to get something done so this doesn't happen again. I have never had this much pain before..granted its been bad, but this has been far worse!!..usually taking ibprofin would stop the pain, but taking perks would only subside the pain for an hour!! ugh. I am calling my pain doctor on Monday..I have read a few suggestions..Which procedure have any of you had?! What did it intail?! Was it painful?! Did it work?! Just lastnight I have been getting this warming sensation in my foot..Seriously I never experience this before..Its like a hot feeling Odd!! Anyone else ever gotten this?!

    xo. megz

    27 year old female
    Upper Curve 110 degrees
    Lower Curve 90 degrees
    Surgery with Dr. Wood at MGH 1/11/10 && 1/14/10
    Fused T2-Pelvis
    Back looks amazing and no more Hump! ^_^

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