Announcement

Collapse
No announcement yet.

New to the forum

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New to the forum

    Hello, posters.

    I came across this site when I was searching for info on knee replacement plus spinal fusion. Lo and behold, there was a thread from a couple of years ago, with a lot of useful information. In the last few days, I've explored various other threads. LOTS of useful information, even though in my case, I'm guessing my scoliosis is secondary to other spinal problems.

    Never mind longstanding knee problems. Both my spine and knee problems seem to be coming to the "Do something NOW!" stage simultaneously. It's like the warranty ran out on my skeleton once I hit 65...

    I have been "buying time" with both knees, with Euflexxa (or Synvisc) injections since 2005, and literally have got a lot of mileage from the shots. Even though both knees have had bone-on-bone spots for years, I keep moving, do my PT, take my Diclofenac, and things go along pretty well.

    A generic "bad back" started over 20 years ago, but the chiropractor has been able to keep that in check. About 1995, a mild L5 spondylolisthesis was discovered during a hip x-ray. So, I've had to play by the rules to keep my back in check, but I got along pretty well. PT and a daily exercise routine also help.

    2012 has been a bad year, though. I've had wicked trouble sitting--not a new thing, but I used to be able to sit long enough to enjoy a meal, drive to see relatives, sit through a church service, etc. (And type several paragraphs without taking twenty standing breaks!) That ended last January. The first thought was ischial tuberosity bursitis, and I had a hip X-ray to rule out other hip problems. Those X-rays showed lumbar scoliosis, so off the The Spine Institute. You don't need a blow-by-blow description of everything that intervened, but I had an MRI a week ago that showed--let's just call it a laundry list of problems, from T9 to S1. The L5 "spondi," as I see you folks call it, has progressed to Grade 3. Degenerative disc disease, stenosis, all that good stuff.

    I have no clue how all this will play out. To complicate matters, I decided several months ago to move closer to relatives in the Boston area, preferably this spring. I'm in Burlington, VT now. No shortage of doctors--both spine and knee--in either place, I'm sure.

    The plan now is a cortisone shot, to buy time, and probable spinal fusion.

    Meanwhile, one question is, knee replacement or spinal fusion first? I understand I have to give up NSAIDS during the whole spinal healing process--not just the acute phase, when I'd be on other painkillers. I don't think my knees can take it. Plus, I know that walking is a key to fusion recovery. I can walk nearly a mile now, but that's with the NSAIDS.

    OTOH, spinal fusion will change the geometry of my upper body, and it would be nice for that to happen before I get bionic knees.

    Anyway, let me know if you have any thoughts. Many thanks.

  • #2
    Welcome to the forum! You will find it helpful as well as inspirational. I know I have!

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

    Comment


    • #3
      hi Emma
      welcome to forum....many nice people on here, much info available...
      many folks who have had surgery have a lot of helpful experience to
      relate...as do folks who have not had surgery...yet...
      i am of the latter group...

      i have bad knees as well...fairly recent development of last couple of
      years...medial meniscus tear in one, cyst in other, degeneration in both...
      they tell me i should not have knee surgery, and offer me shots...i have turned down the shots thus far...gives me the creeps, though i used to get shots in spine all the time...
      i have scoli, DDD, stenosis, listhesis, etc...
      need surgery T11-sacrum....previous recommendation of T4-sacrum
      upper curve of 42 degrees would be left alone...lower curve of now 70 degrees causes most pain, along with bad discs....
      i finally found, after epidurals, facet blocks, and nerve ablation, and some other treatments didn't help me, that sacroiliac joint injections worked for me...but i was given too much steroid last January....causing my cortisol level to drop to near zero....and it took 6 months to come back up...thank goodness it came back...i cannot risk more steroid shots....

      i would ask spine surgeon about what to do first...if one is fused to sacrum
      they say knees are needed for bending, since bending from waist is no
      longer possible, and only bending from hips can be done...carefully....
      i wonder about it too...what to do about bending with bad knees once spine is fused....??!!

      first thing i would do would be get a couple of opinions from top spine
      surgeons...people speak highly of Dr Rand in Boston, amongst others...

      best of luck finding answers....
      jess...& Sparky

      Comment


      • #4
        Thanks, Jess,

        Just wrote a reply about the joys of Euflexxa, and--arrgh--I timed out, and my reply is floating around in cyberspace.

        Anyway, I would heartily recommend the Euflexxa injections--at least to give them a try. I understand people either find they're fantastic, or useless--no in between. Apparently you have to have some residual cartilage to give the Euflexxa (or other, Hyalgan, etc.)something to work with. People who are bone-on-bone over the whole knee surface don't have luck. I think I have had more luck than most.

        You might try it on your better knee first, and see if it works. The injections aren't as creepy as they seem, and they don't have the bad side effects of cortisone.

        Sounds like our knees match. The Baker's Cyst, behind the knee, right? I try to think of it as my friend, that it is like an overflow catchment, when the fluid in your knee is too much. Mine waxes and wanes depending on how my knees are feeling. Puffed right up during the injections; down to almost nothing now, two weeks after the last injection.

        Say, maybe I should join a knee forum? I am so much more comfortable with knee issues, as I've had them-wow, just did the math-over 50 years! When I have problems, I usually have a good handle on what's wrong, and I can advocate for myself. Plus I have an understanding relationship with the surgeon and the PA. So different from these back issues, where I really don't have a good idea of what the future holds. I don't even have a back surgeon at this point.

        Thanks for the Dr. Rand recommendation. If a cortisone shot gives me some relief, I can actually sit to GET to Boston. I should make an appointment there, as well as apartment-shop.

        You say, "if one is fused "to the sacrum" no bending from the waist. Are you referring to a long fusion that ends at S1, or any fusion that involves L5-S1? I'm wondering if a short fusion would take care of the worst problems, and leave me some flexible spine a little further up.

        Thanks for all your input.

        Marjorie (aka Emma Plum)
        Last edited by Emma Plum; 10-16-2012, 04:11 PM. Reason: misspellings

        Comment


        • #5
          Welcome to the forum. I have also heard raving reviews about Dr. Rand. Irene hasn't been on the forum in a while, but she had successful surgery with him approximately two years ago. I think she is about the same age.
          Karen

          Surgery-Jan. 5, 2011-Dr. Lenke
          Fusion T-4-sacrum-2 cages/5 osteotomies
          70 degree thoracolumbar corrected to 25
          Rib Hump-GONE!
          Age-60 at the time of surgery
          Now 66
          Avid Golfer & Tap Dancer
          Retired Kdgn. Teacher

          See photobucket link for:
          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
          Before and After Picture of back 1/7/11
          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
          http://s1119.photobucket.com/albums/k630/pottoff2/

          Comment


          • #6
            hi Emma
            i am sorry your knees have given you problems all these years...
            mine are newly bothersome...the pain is mostly a deep ache...
            and i think the medial meniscus tear, plus arthritis, is doing me in
            more so than the cyst...not sure where the cyst is located...
            i do know the arthritis causes bone on bone pain...

            i would suggest you consider a top spine surgeon consult as well as
            pain management doctor...Rand is a surgeon...sally..."loves to skate"...
            had surgery with him...maybe you can write her....perhaps she knows of
            good pain guys in Boston...she lived in MA but moved to NC a few years
            ago....

            long fusions, or fusions that involve lumbar, i believe do not allow for any
            bending at waist....fusions of thoracic region do, i think...if they do not
            go too low....you can read any of threads about lumbar fusions and see
            what folks on forum say about bending....
            i need fusion to sacrum, so i pretty much just read those posts....
            i do know i would need to bend from my knees...or hips...after fusion
            to sacrum....even L fusions, all lower lumbar i believe will require that...
            but those who have had lumbar fusions could explain it far better...

            jess...& Sparky

            Comment


            • #7
              Thanks for the feedback

              Originally posted by golfnut View Post
              Welcome to the forum. I have also heard raving reviews about Dr. Rand. Irene hasn't been on the forum in a while, but she had successful surgery with him approximately two years ago. I think she is about the same age.
              Many thanks, golfnut. I'll sort strands for "Irene." I'm hoping any fusion can happen in the Boston area, but I have to get there first.

              Marjorie (Aunt M)

              Comment


              • #8
                Hi Auntie Em,

                That’s a tough call on which to do first.....maybe the knee since it will heal faster...Hmmm????

                Im no stranger to Vermont being an old east coast skier. Used to ski Stowe as a kid...of course the Shelburne museum is a really neat place.

                I think Irene is doing well....If she doesn’t respond soon I will send her an e-mail.

                Welcome to the forum
                Ed
                49 yr old male, now 63, the new 64...
                Pre surgery curves T70,L70
                ALIF/PSA 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

                Comment


                • #9
                  Hi Emma,
                  I had lumbar spinal fusion with Dr. Rand at the New England Baptist almost five years ago. Dr. Rand is very kind and thorough and basically gave me my life back. There are three adult scoliosis Doc's in Boston. I got this off of the SRS website for you.

                  Paul A. Glazer, MD
                  Beth Israel Deaconess Medical Center
                  330 Brookline Avenue, CC 2nd Floor
                  Boston, MA 02215
                  Phone: (617) 667-2225
                  Fax: (617) 667-2233
                  Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions

                  Frank F. Rand, III, MD
                  New England Baptist Hospital
                  125 Parker Hill Avenue, Converse 5
                  Boston, MA 02120
                  Phone: (617) 754-5744
                  Fax: (617) 754-5740
                  Specialties: Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions

                  Kirkham B. Wood, MD
                  Massachusetts General Hospital
                  Yawkey Bldg., Suite 3800
                  55 Fruit Street
                  Boston, MA 02114
                  Phone: (617) 724-8636
                  Fax: (617) 726-7587
                  Specialties: Adult Scoliosis, Aging Spine, Degenerative Conditions

                  It would be best if you would consult with one or all of these Doctors, rather than other spine Doctors not familiar with the problems of Scoliosis.

                  I hear you about the warranty running out on your body. My knees and hip are wearing out now, so I didn't have that issue to deal with when I had my back surgery. They are not going to get better on there own, so don't wait until it is too late. I would think that getting your spine done first and then the knees would be best, but I would ask the Doctor about it. I see that you have concerns about the NASADS. You definitely won't need them while on the other stronger meds. I can no longer take any NASAIDS because they were doing damage to my kidneys. The first week I was off of them, I was in a great deal of pain, but after that even though I had some pain, it was no where near as bad as I was expecting. By the way, I can only walk about a mile also. Sometimes I take a Tramadol as needed. So you can see that there are other options when you can't take NASAIDS.

                  Did the question about bending after a lumbar fusion come up? You will be able to bend from the hips and grabbers are a good thing to keep around the house. An occupational therapist will teach you how to do many things differently. If you have other questions you would like to ask me, you may PM me.

                  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


                  • #10
                    Welcome to the Forum.

                    I would be glad to speak with you about my experience with Dr. Rand. As Sally (Loves to Skate) explained, Dr. Rand gave her and me our lives back. I recommend him highly. I am almost 2 years post-op and can walk and stand as much as I have energy for. I can bike, kayak, sail, and hike, something I haven't done ever in my life. I look forward to cross-country skiing or snowshoeing this winter. My cane-seat, which was a constant companion for my years, has been in the closet since 12/7/2010. It isn't an easy recovery but well worth it.

                    Unlike you, I did not have the knee issues so I was taking care of one main issue.

                    Bending is something you get used to because, if you don't use a grabber, you need to get down on one or both knees. But, it can be done. Other people may have found other ways to get down on the floor to pick up something.

                    You really can't tell how far up or down the surgery will go until you get evaluated because the surgeon has to get to a place of stability. They can't just fix the place that is at issue or, at some point, it may collapse.

                    If you want to contact me, please send me a private message and we can set up a time to talk.

                    Good luck!!

                    Irene
                    1996 x-rays (none read recently) 50 degrees thoracic, 40 degrees lumbar
                    Never braced, found out I had scoliosis at age 28
                    At time of surgery, multi-level disc spondylotic degeneration,
                    advanced lumbar degeneration, stenosis
                    65 years young and very active but no lengthy walks or standing without pain
                    Now, 67. walking and standing as much as I want
                    Surgery Dec. 7, 2010
                    T10-S1 posterior
                    Dr. Rand
                    New England Baptist Hospital, Boston,
                    http://s1224.photobucket.com/albums/ee369/itr1/

                    Comment


                    • #11
                      Welcome! Love to see more of us "more finely aged" women on the forum. I am 66 and have not had surgery, but think that it is probably inevitable. I have has cortisone injections and denervation trying to delay the probable inevitable fusion, in my case from T3-sacrum...Ugggg.

                      I get great relief from all of the non-surgical interventions. See my blogs.

                      Like you, or as it appears from what you have said, we both probably have "adult degenertive scoliosis". I see a spine MD in Portland, OR [not anywhere near you] that specializes only in adult spinal surgery and of the 200 cases that he does each year, half are scoliosis.

                      Sally is an awesome source of encouragement and knowledge.

                      Wishing you the best,
                      Susan

                      PS: This is not an opinion that is based on any knowledge, just food for thought. Maybe consider getting the knee problem out of the way first. Getting up and about is SO important postop scoliosis surgery and if you can't move well with your knee, I'm thinking that would increases your rehab issues w/ you back postop. Just my 2 cents worth.
                      Last edited by susancook; 10-19-2012, 04:12 AM.
                      Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                      2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                      2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                      2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                      2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                      2018: Removal L4,5 screw
                      2021: Removal T1 screw & rod

                      Comment


                      • #12
                        Many thanks to all who posted this last day or two. I've read everything, but will get back later. I'm "between" family visits now. Yesterday, cousins from Seattle, whom I hadn't seen in 9 years--wonderful, but short visit! Tomorrow, my niece will be up for to help me do some clearing and sorting in the house, as I need to downsize before I make any Boston-area move. Today, I need to "declutter," before my niece arrives.

                        Got an appointment at the Burlington-area "Spine Institute" on Nov. 14th. That's more for evaluation; I'm guessing they will then refer to a surgeon.

                        Also, an appointment with the knee surgeon on Nov. 19.

                        All for now, Aunt M.

                        Comment


                        • #13
                          Originally posted by Emma Plum View Post
                          Many thanks to all who posted this last day or two. I've read everything, but will get back later. I'm "between" family visits now. Yesterday, cousins from Seattle, whom I hadn't seen in 9 years--wonderful, but short visit! Tomorrow, my niece will be up for to help me do some clearing and sorting in the house, as I need to downsize before I make any Boston-area move. Today, I need to "declutter," before my niece arrives.

                          Got an appointment at the Burlington-area "Spine Institute" on Nov. 14th. That's more for evaluation; I'm guessing they will then refer to a surgeon.

                          Also, an appointment with the knee surgeon on Nov. 19.

                          All for now, Aunt M.
                          I do not know anything about the Burlington-area Spine Institute, but do your homework before you go. Look up the surgeons and see who is an SRS surgeon. Don't let them just give you anybody....make a pro-active choice.

                          Enjoy your vacation! Susan
                          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                          2018: Removal L4,5 screw
                          2021: Removal T1 screw & rod

                          Comment


                          • #14
                            to golfnut, post #5

                            Thanks for the advice about Irene. She's pm'd me. I've seen Dr. Rand's name recommended, with high praise.

                            Aunt M.

                            Comment


                            • #15
                              to jrnyc, Post #6

                              Hi, Jess,

                              Thanks for the advice re choice of a surgeon, and also someone for pain management. I've heard from Sally--"loves to skate"--esp. about Dr. Rand.

                              My knees have surprised me a bit. I was dreading going off anti-inflammatories, prior to what I think will be an epidural cortisone shot tomorrow. Cross fingers, my knees are behaving; the Euflexxa injections seem to have kicked in. Also, I'm able to walk nearly a mile nearly every day, and all that keeps my knees from going into a downward spiral.

                              I hope your knees will start to behave. Are you considering surgery to take care of the meniscus tear? They say arthroscopic meniscus repair doesn't do much for patients with significant arthritis, but I beg to differ.

                              So far, I'm a bit discouraged by the pain management end of things. A TENS unit; didn't work, though at that point no one had identified my spine as being the right place to put it. Also Gabapentin, which made me loopy and non-functional. I'd consider it if I had a staff of servants taking care of my every need

                              Thanks for the input, Aunt M.

                              Comment

                              Working...
                              X