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  • Frustrated =(

    As some of you have read I have an 80degree lumbar curve. I had an apt at the Bringhams and Womens pain management center today. The doctor assistant had asked me how my pain was today and I told him how it fluctuated from a 7 to 8 depending on if I was sitting or walking. Anyways, I was prescibed Norotin 100mg 3x daily about two months ago and stopped taking it because I saw nothing happening, I tried to call the clinic to see if they would up the dosage noone every got back to me! So he decided he wanted to put me back on the norotin 300mg and gradually increase it..Ok fine I decided I would try this again..The assistant started talking to me about taking percoset, and that I could take this medication because it has worked for me in the past..I explain to him the last time I was there they had told me that they didn't want me on any pain meds bc when I have this operation I will need them the most and they feel I would be too immuned..He nodded his head and agreed. So he asked me if I had an apt with the neuro and I told him it was October 15..He looked at me and was like ewww thats sorta awhile away and asked if I would mind seeing one of there specialists I told him that would be fine more feedback the better!!anyways he goes and get my normal pain management Doctor and he comes in glances at my chart and says ok so we are starting you back on norotin great make an apt in 4 wks and was heading to the door..my moms mouth dropped to the floor, she shouted out "umm we are waiting to see the neuro and my daughter is in a lot of pain" and he shrugged and said yah most patients typically wait 3 months to see the doctor.. and walked out ...ok great but its 3 months now I got this appointment 2 months ago..Frustrated we got up got and the assistant told me that they couldnt give me the prescription for the pain meds because I haven't seen the psychologist yet ((YESS I Need to pass to make suree I wont be addicted!!)) I had an apt last week for him but he canceled..the assistant told me to explain that to booking and to have them squeeze me in..so we walk down to the appointment place and she tells me that the next available apt is Sept 2nd. UGH!! I'm just really frustrated..I am in a lot of pain and I can't seem to get anything done here..I've called the neuro surgeons office to see if there were any cancelations and she told me that there is a list a mile long of people waiting for cancelations!! WHAT AM I TO DO?! I've gone to the ER to just only sit there for 8 hrs and have a dr look at my back and say "Oh you sure do have scoliosis, I would call your neuro and see what they can do"...

    I just feel I am out of options..Sorry this is sooo long just really needed to vent =)

    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
    frustrated

    where do you live that you put up with this stuff from doctors?can you find another, or travel to another city? i have a few good ones in nyc & one in CT...i wouldnt want to go through all that, esp while in so much pain!! some of these doctors have no shame!

    jess

    Comment


    • #3
      Hi Megz,

      I wish I could say or do something that would make you feel better. It seems that this time of year is by far the busiest time for spine/neurosurgeons when it comes to operating on adults. Five months is a long time to have to wait for an appointment with Dr. Rand. People from all over the US come to Boston for their surgery and I think they just don't have enough adult scoliosis specialists to keep up with the demand. I don't blame you for being frustrated with your appointment with the Pain Clinic also. It sounds like the right hand doesn't know what the left hand is telling you. That is what I don't like about teaching hospitals. I take it your physical therapy isn't helping too much yet. Unfortunately it takes a long time before you will see positive results with PT, especially with a curve as bad as yours. All I can say is try the Neurontin again and pester the daylights out of your pain management Dr. to make sure they get your dosage right so it will give you some relief for your pain. My thoughts and prayers are with you.

      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.

      Comment


      • #4
        Originally posted by jrnyc View Post
        where do you live that you put up with this stuff from doctors?can you find another, or travel to another city? i have a few good ones in nyc & one in CT...i wouldnt want to go through all that, esp while in so much pain!! some of these doctors have no shame!

        jess
        hey jess..
        I live in MA on the boarder of CT. At this point I am willing to go anywhere..I hear a lot of good things about the Dr. I am about to see and that is probably why he is sooo booked..but I am and too much pain and is really frustrating to sit back and wait..Where in CT is the Dr. or even NYC I wouldn't care at this point =]

        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! ^_^

        Comment


        • #5
          Originally posted by loves to skate View Post
          Hi Megz,

          I wish I could say or do something that would make you feel better. It seems that this time of year is by far the busiest time for spine/neurosurgeons when it comes to operating on adults. Five months is a long time to have to wait for an appointment with Dr. Rand. People from all over the US come to Boston for their surgery and I think they just don't have enough adult scoliosis specialists to keep up with the demand. I don't blame you for being frustrated with your appointment with the Pain Clinic also. It sounds like the right hand doesn't know what the left hand is telling you. That is what I don't like about teaching hospitals. I take it your physical therapy isn't helping too much yet. Unfortunately it takes a long time before you will see positive results with PT, especially with a curve as bad as yours. All I can say is try the Neurontin again and pester the daylights out of your pain management Dr. to make sure they get your dosage right so it will give you some relief for your pain. My thoughts and prayers are with you.

          Sally
          I am really suprised that they have a lot of pediatric spine/neurosurgeons! What is that cut off age?! Geesh I could really pass for a 16 yr old!!=) I can't believe one dr is telling me they don't want to give me the perks, and the other doctor is agreeing but still wanted to write the prescription. Not to mention MY doctor gave me a MINUTE of his time..I don't find that professional at all!! I've started the Neurontin tonight. I am crossing my fingers..The doctor told me a side effect is you become a little loopy geessh!! Aren't you on this?! If you are, have you noticed any side effects?
          PT is going ok, except its a lot of messaging more like poking and cracking, I swear my physical therapist thinks I'm a wishbone and is trying to make a wish..he pulls my hips towards him and pushes my back the opposite way while lying on my side..I end up hurting the following day if not that night!.

          thank you though for the words of encouragement!! =]

          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! ^_^

          Comment


          • #6
            Hi Meg...

            Are you in an HMO or managed care plan? I think you're getting pretty bad treatment. Your curve is huge, and it's hard for me to understand why a specialist wouldn't understand why you'd be in so much pain.

            If you're able to, I would also recommend Dr. Rand. While there are a small number of neurosurgeons who work with spinal implants, they're definitely not the norm. If your surgeon isn't listed here:

            http://www.srs.org/find/

            I would recommend that you at least get another opinion.

            Regards,
            Linda
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • #7
              Originally posted by LindaRacine View Post
              Hi Meg...

              Are you in an HMO or managed care plan? I think you're getting pretty bad treatment. Your curve is huge, and it's hard for me to understand why a specialist wouldn't understand why you'd be in so much pain.

              If you're able to, I would also recommend Dr. Rand. While there are a small number of neurosurgeons who work with spinal implants, they're definitely not the norm. If your surgeon isn't listed here:

              http://www.srs.org/find/

              I would recommend that you at least get another opinion.

              Regards,
              Linda
              Hello Linda.

              Thank you for sending me the link, I found it very helpful. Dr. Rand has been the one I've been waiting to see..I have an apt on October 15..I tried calling to get a cancelation apt but she informed me the list is a mile long..Very frustrating when I am in pain, I have Mass health and Medicare Part A+B
              Last edited by megz; 07-17-2009, 09:09 PM.

              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! ^_^

              Comment


              • #8
                Hi Megz....

                Glad you'll be seeing Dr. Rand. Hopefully, you'll find him worth the wait.

                Since you're having significant pain now, maybe you should look at a lumbar brace. There are all sorts of expensive braces (e.g. Spinecor), but you may find that a simple, elastic lumbar brace (obtainable from any hospital supply store), gives you some relief.

                Good luck.

                Regards,
                Linda
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                Comment


                • #9
                  doctors

                  definitely recommend dr baron lonner in nyc...also, i will consult w/dr neuwirth in nyc next month...(appt in early august)...am making an appt with a surgeon at UCONN as well (dr mohr) as i currently live in CT...IF i have surgery i will probably go w/dr lonner....
                  when i saw dr boachie in nyc, i only waited about 2 weeks for consult appt, & he is one of best scoli surgeons in world! i would not want to be treated the way they are treating you in MA!!
                  most of my general doctors suggested to stick w/nyc surgeons...as long as on east coast & so close to nyc, maybe you would consider going there, at least for consultations

                  best of luck
                  jess

                  Comment


                  • #10
                    Originally posted by jrnyc View Post
                    definitely recommend dr baron lonner in nyc...also, i will consult w/dr neuwirth in nyc next month...(appt in early august)...am making an appt with a surgeon at UCONN as well (dr mohr) as i currently live in CT...IF i have surgery i will probably go w/dr lonner....
                    when i saw dr boachie in nyc, i only waited about 2 weeks for consult appt, & he is one of best scoli surgeons in world! i would not want to be treated the way they are treating you in MA!!
                    most of my general doctors suggested to stick w/nyc surgeons...as long as on east coast & so close to nyc, maybe you would consider going there, at least for consultations

                    best of luck
                    jess
                    How does the insurance work if you see another doctor out of state?! Where is the best place to get your info on these doctors..I have just heard a lot of good stuff about Dr. Rand..Its just the wait that is killing me! I would be willing to travel..Where about in CT are you?

                    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! ^_^

                    Comment


                    • #11
                      frustrated

                      Hi megz
                      i just have an HMO & they cover all aetna doctors in any state with a referral from my GP...i am in northeastern CT near MA border...considered going to your doctors up there...e mailed them & they gave me a dr to contact, but it wasnt Rand, so i didnt pursue it..am very happy w/dr lonner in nyc..known him 5 yrs as he has followed my scoli curves..am getting other opinions tho..saw & liked dr boachie, but he didnt take my insurance , so just saw him once (cash) for consult.....will see neuwirth in nyc august 6, & getting referral for dr mohr at UCONN when see my GP end of july...
                      i would definitely recommend travel, at least for 2nd opinions/consults, tho with severe curve, am pretty sure surgeons will all recommend same thing (surgery)....

                      best of luck to you
                      jess

                      Comment


                      • #12
                        Originally posted by megz View Post
                        Dr. Rand has been the one I've been waiting to see..I have an apt on October 15..I tried calling to get a cancelation apt but she informed me the list is a mile long..Very frustrating when I am in pain, I have Mass health and Medicare Part A+B
                        Hi Megz,
                        If you have Mass health, I doubt very much that you would be able to go to a Dr. in another state. I know that Dr. Rand will accept Mass health and Medicare. I suppose it would be worth a phone call to your insurance or to one of those Dr.'s in NYC just to find out for sure. As far as getting narcotics in Massachusetts prior to surgery, it is almost impossible.
                        Be strong and just know we are all pulling for you and hope you get relief for your pain soon.
                        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.

                        Comment


                        • #13
                          doctors


                          gosh, i never heard of this Mass health thing..glad i dont have it if it limits which state you can go to for doctors...maybe you could call a few drs & see what insurance they take..i have coverage from years of working for nyc bd of ed that continued when i retired (tho of course at a higher cost to me!)..i know i paid cash for some consults, like w/dr boachie (i just wanted the opinion of one of the best)...
                          i had no problem being offered meds from rheumatologist & from pain doctors....they examined my back, saw Xrays, & knew how bad the pain had to be! the spinal stenosis & degenerative disc disease is apparently adding to the pain from scoli...
                          i feel so for you & really hope you can consult w/as many doctors as possible...regardless of surgery decisions, i think pain doctors are really helpful in the meantime...i think they instantly understand living w/severe pain!

                          take care
                          jess

                          Comment


                          • #14
                            Oh Megz! I'm so sorry to hear you are having so much trouble getting in to see Dr Rand and getting help with the pain in the meantime. Your story brings back my own memories of frustration from last summer. I feel like I cried all the time because I couldn't get the help I needed soon enough and nothing I tried seemed to help for any length of time. Ten months after I was sure I couldn't take a day more of pain, I finally had my surgery. I am on the other side now and I can honestly say that Dr Rand is well worth waiting for if you can hang in there. Good luck with whatever you decide to do with choosing a doctor though. It's really difficult to wait when you hurt so badly. Take Care and know that we are thinking of you.
                            -Jo

                            Diagnosed at age 12
                            Milwalkee Brace worn Faithfully 1971-1977
                            Posterior Fusion T-9 to Pelvis- April 28, 2009
                            Dr Frank Rand, NEBH, Boston

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