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Fifa's Surgery 11/10/14 with Dr. Buchowski

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  • Fifa's Surgery 11/10/14 with Dr. Buchowski

    Hi, everyone -

    I've been waiting since the end of August to have my account activated so I could post. Finally! For two years now, I've been reading the forum, knowing that one day I would schedule my surgery. Every single one of you has been of great help to me - thank you.

    In 1987, I had back surgery (laminectomy and diskectomy) for a herniated disk at L5-S1. The surgery and recovery went well. Over the years, I've had intermittent bouts of pain and disability, but for the most part I've managed those well. Numerous MRIs showed mild lumbar scoliosis and several herniated disks in the lumbar area, for which I've had steroid injections, physical therapy, anti-inflammatories, etc. About four years ago, the pain got markedly worse after a coughing spell (I heard the "pop"). For the first time in 27 years, my primary care physician decided to order a set of plain films - standing films. Upon standing, my "mild to moderate" lumbar scoliosis increases to "marked scoliosis." When lying down, my lumbar curve is in the 27 degree range. However, upon standing, the curve now becomes 43 degrees. Three years ago, the standing curve was 31 degrees (January, 2011). In June, 2012, the standing curve had increased to 39 degrees, and now (September, 2014) is at 43 degrees.

    Four years ago, when we found out the extent of the scoliosis, I was offered an anterior-posterior fusion with instrumentation from L3-S1. In fact, the ortho group locally put me on the emergency surgery schedule because my bone scan showed the spine was unstable. I have listhesis and subluxation at several levels, plus a couple of broken facet joints. The ortho group locally told me the surgery they offered would fix the problem. Suffice it to say I was skeptical. I sought a second opinion from the university teaching hospital here locally. They offered a posterior approach and a fusion from L4-S1 with instrumentation. They said that if anyone told me they could fix my scoliosis, they were lying. That was December, 2010.

    After much research online, I obtained a third opinion from Dr. Buchowski in St. Louis in June, 2012. He actually told us that both procedures offered locally were contraindicated. He offered a posterior fusion with instrumentation from T10 to the sacrum. Scared the crap out of me, so we went home to consider options and maybe find an alternative. He was fine with "watchful waiting." Dr. Buchowski spent a LOT of time with us that day, acted like he had no other patients except me, and we had a great (but scary) visit.

    Since June of 2012, I've been muddling along, knowing that one day I would have this "giant" surgery. My ability to stand has decreased to where I only have about five minutes before I have to sit. Walking is worse than standing - every step compresses and uncompresses the curve. Hard to explain. However, the absolute worst pain that I have is in my ribcage, right under the right breast. There is a some muscle that feels like it is attached to the sternum, and it spasms like a charley-horse when I bend over. I have to get my hands above my head and arch backward to get it to go away, but it never truly goes away. My pelvis is now tilted, and the psoas muscles on the right are shortened to where the ribs on the right are sitting directly on top of the pelvis. I've lost about three inches in height in the ten years (no osteoporsis yet - DEXA scan is perfect).

    In August of this year, I was doing my usual yoga routine when I twisted at the waist. There was a "pop" in my spine so loud that the dog actually heard it. It actually made me cry out when it happened. When I tried to stand, I couldn't feel my right foot. There was no position I could get into to relieve the pain. Turns out I broke another facet joint. The pain is better now and I can feel my foot again. This whole four years of knowing that I needed surgery and putting it off, never once did I consider that I might actually do something to where I no longer had a choice about surgery. That is hard to explain. I had a "one of these days" mentality...believing I could push through the pain and just limit my activities and I could get through it. So, I'm really sorry now that I put it off, even though it was just a couple of years. Because of the instability in the spine, now I'll have to have the pelvic fixation, too, which I didn't need two years ago when I saw Dr. Buchowski.

    It's been a tough road, but I'm ready. I figure a "planned" intervention is way better than an "emergency" intervention, especially when an emergency would have to be treated here locally. Now, it's on to St. Louis!

    I hope you are all well. The posts in this forum have been extremely beneficial to me and my family as we debate, prepare, and pray. Thank you all very much. If anyone here has any advice, suggestions, anything - I would be grateful to hear from you. Also, if anyone has any specific experience with Dr. Buchowski and/or Barnes Hospital in St. Louis, I would love to hear what you have to say (positive or negative).

    Fifa
    (soon to be bionic)
    Last edited by fifa; 10-04-2014, 01:37 PM. Reason: grammar

  • #2
    I don't have much I can offer; I'm new to this myself. But I'm also a new member, and I just wanted to say hey and I hope your surgery gets you relief!
    Karen

    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
    Surgeries scheduled for Nov 10, 14, and 17.

    Comment


    • #3
      Thanks, Karen. I hope you are doing well. I saw your daughter's x-rays. I haven't figured out how to post mine yet, but will be doing that soon. She sounds like a trooper!

      I had a hard time getting my account activated (I think you did, too?). I e-mailed the scoliosis admin e-mail plus Joe's several times each and finally was activated after MariaF intervened. I was getting anxious!

      Hope you are doing well. I'm hanging in there and pretty scared about what lies ahead recovery-wise, but I'm hopeful. I'm hoping to get my life back soon!

      Fifa
      Last edited by fifa; 10-04-2014, 07:10 PM. Reason: added a sentence

      Comment


      • #4
        hi fifa
        welcome...

        i am just shocked that no "standing" films were taken sooner...
        i thought X rays while standing were the simplest, cheapest to
        do and the first ones doctors ordered, vs. more expensive,
        MRI's, CAT scans, myleograms, etc....especially when dealing
        with insurance companies who will be paying for the radiology.

        best of luck with your surgery
        jess

        Comment


        • #5
          Hi Fifa!

          Welcome to the forum!
          You & I will be having surgery with Dr. Buchowski, just 2 weeks apart!
          I agree, it's better to 'choose' the surgical intervention than to have to deal with an emergency. I've had plenty of time to get our house & lives organized. I know there'll be some things I won't get crossed off my 'to-do' list, but overall, I'm feeling prepared. Every now & then the edge of feeling panic gets a little too close!
          That pop in your back and the resulting pain had to be terrifying!
          How far is St. Louis from your home? We live in Columbus, OH - 400 miles away. Will you be staying in St. Louis for a month? We're renting an apartment for close to the same price as a nice hotel or extended stay. We stayed at the Parkway Hotel for my pre-surgery testing. Very nice.
          Peg
          61 yrs old
          75 degree lumbar curve with thoracic kyphosis
          T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
          Working on healing in Columbus, Ohio!

          Comment


          • #6
            Fifa

            I also waited.....34 years to be exact, but after having talks for 2-1/2 years with my surgeon, my procedure became complicated. I was rejected in the end and I had to beg. I had a massive L1-Pelvis anterior (ALIF) with partial corpectomy due to advanced end plate damage. Degeneration in adults over 50 can really get serious....They flipped me over for the posterior operation 2 days later.

            I often think about the intense amount of pain I endured before my surgeries, and was fortunate. I really had no decision since one doctor gave me a year to live....Decision making on an elective surgery is something we put on the back burner, and pain is a strong signal that organs are suffering. “Jean-Martin Charcot”

            So, I understand your situation completely....

            For anxiety, I ran..... kinda like Forrest Gump. (smiley face) I forgot that movie and why he ran???? I need watch it over again. Running and deep breathing outdoors is what I did. I also ate well, had to lose weight, and wanted my nutritional situation and immune system at its best going in. I also took no meds at that time.

            In the end, after a 2 year recovery and adapting, I came out quite well. I still snow ski after fusion surgery, and post my ski video every once in a awhile to boost people up a bit. Here it is. I’m in the red jacket.
            http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

            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


            • #7
              Hi Fifa and welcome to the forum. Good luck with your surgery. I was also putting mine off for a long time because I just wasn't ready. People on this forum are wonderful...welcome to the family.
              I am stronger than scoliosis, and won't let it rule my life!
              45 years old - diagnosed at age 7
              A/P surgery on March 5/7, 2013 - UCSF

              Comment


              • #8
                Originally posted by fifa View Post
                Thanks, Karen. I hope you are doing well. I saw your daughter's x-rays. I haven't figured out how to post mine yet, but will be doing that soon. She sounds like a trooper!

                I had a hard time getting my account activated (I think you did, too?). I e-mailed the scoliosis admin e-mail plus Joe's several times each and finally was activated after MariaF intervened. I was getting anxious!

                Hope you are doing well. I'm hanging in there and pretty scared about what lies ahead recovery-wise, but I'm hopeful. I'm hoping to get my life back soon!

                Fifa
                I am well, thank you for asking We all have our days and moments, but we're getting through. And yes, I was another one who had trouble getting my account activated. Very frustrating when I wanted to connect with others who had similar experiences, but I'm so thankful we're in now! Your surgery is the same date as my daughter's first surgery, so I'll be thinking of you and keeping fingers crossed that you finally get relief!!
                Karen

                Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
                Surgeries scheduled for Nov 10, 14, and 17.

                Comment


                • #9
                  Oh! And to add pictures/your xrays, scroll down below the reply box and click on "manage attachments". That will give you a dialogue box where you cilck on "add files" then click "select files" to choose files from your computer. Hope that helps!
                  Karen

                  Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
                  Surgeries scheduled for Nov 10, 14, and 17.

                  Comment


                  • #10
                    Originally posted by jrnyc View Post
                    hi fifa
                    welcome...

                    i am just shocked that no "standing" films were taken sooner...
                    i thought X rays while standing were the simplest, cheapest to
                    do and the first ones doctors ordered, vs. more expensive,
                    MRI's, CAT scans, myleograms, etc....especially when dealing
                    with insurance companies who will be paying for the radiology.

                    best of luck with your surgery
                    jess
                    Hi, Jess!

                    Yes, in retrospect, I agree with you. I think the reason was twofold - first, I always went back to the orthopaedic group here locally for my care, and my symptoms have always included radicular pain down to the toes on the right, so they went directly to an MRI every time (obviously lying down) looking for impingement, I guess. My insurance company allows me to see a specialist with no referral from anyone, so for 25 years I bypassed my primary care physician and went straight to the ortho group. The ortho group here now has their own MRI, and I have great health insurance, so I think that is the second reason. I mean, they all knew I was post surgery, so I assume that is why they went that way. I've been in the medical field for 25 years and I never questioned it. Didn't know anything really about scoliosis other than it meant a "curved spine." Truly, I didn't think anything of it, either. I just figured my spine had curved a bit since surgery in 1987. Never thought it would be progressive or eventually debilitating. The ortho doc here that I've seen for 27+ years (who did my surgery) never discussed the scoliosis as being anything other than a curve. I have several herniated disks, stenosis, etc., so that has always been the discussion in the office (never scoliosis). I've gained a lot of knowledge in the last four or five years.

                    My insurance has now changed with regard to the MRI - for the last one I had in August (when I broke another facet joint), I needed pre-authorization and it took several weeks to get it. I haven't needed the pre-auth before for that.

                    I was shocked when the plain films were compared to the MRI. Oh, and the developing rib hump has also gone unnoticed for the last four years, too. Again, I think no one here locally was concerned about the scoliosis since it seemed minimal on MRI, so no one has addressed it, plus no one here locally does adult scoliosis surgery.

                    Hope you are doing well!

                    Comment


                    • #11
                      Originally posted by PeggyS View Post
                      Hi Fifa!

                      Welcome to the forum!
                      You & I will be having surgery with Dr. Buchowski, just 2 weeks apart!
                      I agree, it's better to 'choose' the surgical intervention than to have to deal with an emergency. I've had plenty of time to get our house & lives organized. I know there'll be some things I won't get crossed off my 'to-do' list, but overall, I'm feeling prepared. Every now & then the edge of feeling panic gets a little too close!
                      That pop in your back and the resulting pain had to be terrifying!
                      How far is St. Louis from your home? We live in Columbus, OH - 400 miles away. Will you be staying in St. Louis for a month? We're renting an apartment for close to the same price as a nice hotel or extended stay. We stayed at the Parkway Hotel for my pre-surgery testing. Very nice.
                      Hi, Peggy!

                      Yes, I couldn't wait to talk to you when I saw your signature line about possible surgery with Dr. B. Don't you just love him? Hubby and I both really like him a lot. Yes, we are also getting the house organized and I'm trying to get my workplace organized, too. Hired a yard guy, carpets cleaned, bidet on the way....LOL

                      The day I had the last pop, August 12th, was the day I made the follow up appointment with Dr. B. I just always thought I would have a choice about when I would schedule surgery. The pop just scared me, especially since I couldn't feel the right foot. We discussed driving to Barnes that day, but I couldn't have managed the car ride.

                      We live in Columbia, Missouri, which is about two hours west of Barnes. We can make it to Chesterfield in about 1 1/2 hours. We've been seeing Dr. B at the Chesterfield office. So, I'm not too far away. Initially, when we saw Dr. B two years ago, we were told to plan for a week in the hospital and two weeks in rehab, all in St. Louis. If the insurance wouldn't pay for inpatient rehab, then we would stay at the Parkway and do the rehab as an outpatient. Something must have changed in the last two years, because at our latest visit, they said it would be a week in the hospital and maybe staying over the weekend at the hotel to be close by (especially if I didn't feel like making the trip home). I really don't know what to expect.

                      I'll definitely be at the Parkway the evening of November 9th. I don't want to drive in the morning of the 10th and ruminate about surgery in the car for two hours...I'll be wrecked and won't enjoy the operation. LOL I'm very happy that the Parkway will accept our dog (for a fee). Hubby and I are currently trying to figure out what he will do.

                      Soon, I'll figure out my signature line. I'm 51 years old, just by the way. Will add that to the signature as well as the xrays and such.

                      Did you have your myelogram and all the teaching? I'm set to do that in a couple of weeks. I'm really anxious about the myelogram. The last one I had was ten years ago, and I got a spinal headache as a parting gift. Swore I would never have another one, but apparently, I'm gonna.

                      Hope to meet you in St. Louie, Louie! I don't know how the private messages work yet, but you are welcome to send me one.

                      Fifa

                      Comment


                      • #12
                        Originally posted by titaniumed View Post
                        Fifa

                        I also waited.....34 years to be exact, but after having talks for 2-1/2 years with my surgeon, my procedure became complicated. I was rejected in the end and I had to beg. I had a massive L1-Pelvis anterior (ALIF) with partial corpectomy due to advanced end plate damage. Degeneration in adults over 50 can really get serious....They flipped me over for the posterior operation 2 days later.

                        I often think about the intense amount of pain I endured before my surgeries, and was fortunate. I really had no decision since one doctor gave me a year to live....Decision making on an elective surgery is something we put on the back burner, and pain is a strong signal that organs are suffering. “Jean-Martin Charcot”

                        So, I understand your situation completely....

                        For anxiety, I ran..... kinda like Forrest Gump. (smiley face) I forgot that movie and why he ran???? I need watch it over again. Running and deep breathing outdoors is what I did. I also ate well, had to lose weight, and wanted my nutritional situation and immune system at its best going in. I also took no meds at that time.

                        In the end, after a 2 year recovery and adapting, I came out quite well. I still snow ski after fusion surgery, and post my ski video every once in a awhile to boost people up a bit. Here it is. I’m in the red jacket.
                        http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=plcp

                        Welcome to the forum
                        Ed
                        Hi, Ed -

                        I've enjoyed reading your posts and love your sense of humor! Have to admit that watching you ski in the video you posted made me a bit teary today. That's been happening a LOT lately. I'm not on meds so I can't blame that...it is either stress or perimenopause (or a combination of the two). LOL Glad you posted the video as well as your signature information. Golf Nut's tee shot has been pretty inspirational, too, as has Tap Tap (I think that's the right user name). Susan's story has kept me on the edge of my seat (praying hard for you, Susan). Even though I didn't name the others specifically, I've read all the posts (even in the "sorry I had surgery" thread) and I feel like I know you all even though you don't know me yet. I pray for us all.

                        I wish I could run and relieve some of the stress, improve the lungs, and lose some weight. I've lost about eight pounds just with diet in the last couple of months. I'm exhausted most of the time. With the instability in my spine currently, the only thing really holding me upright is my abdominal muscles. My abdomen is in a constant state of "crunch," if that makes sense. I hold my breath a lot to stay upright. I can't walk very far...can walk less than half a block now and then turn back. This has been quite hard to take because I've been a pretty active person up until a couple of years ago. I'm overweight and just quit smoking, but I really haven't been limited in my activities until the last couple of years. I find myself extremely short of breath with minimal exertion, and while I was a smoker, I've never been a heavy smoker, and my lungs are clear on x-ray. The movement of the ribs on my right side has greatly diminished my lung capacity. The rib hump on the right is getting more pronounced every day. I kept thinking that I could "yoga" (meditate) away the pain and push through it, but just can't anymore. The loss of height (three inches) with the collapse of the spine has just squished everything down - I can't really get my diaphragm to expand the way it should on a deep breath. Also, I'm afraid now to do anything except a few basic yoga moves (no more twisting...yikes!).

                        It's been a very stressful time not just for me, but for my husband. Did you have a support system at home? Did folks stay with you while you were in the hospital?

                        My biggest concerns right now are, in order...
                        1. Do I really need someone to be with me 24/7 at the hospital? This is going to be really hard on my husband mentally and logistically. I worry.
                        2. How limited will I be after surgery long term? Will I be able to toilet without aid? Can I garden? Can I do yoga? Can I swim?

                        There are other concerns, but right now, I'm most worried about my family. My job is secure, my house and office are prepared and ready, and mentally, I'm almost ready. I think there are things in the first couple of days postop that hubby doesn't need to experience, and I'm trying to spare him that, but also am scared to be alone. Hope that makes sense. That's my biggest problem right now. I'm tempted to try to tough it out alone - I mean, there will be nurses, right???? LOL I was going to hire a private nurse to be bedside, but the doc says that's overkill.

                        If any of you have any thoughts and/or advice, I would appreciate hearing from you.

                        Ed, take care, and keep those posts coming! You (and everyone) are helping more than you know, and I'm grateful. Thanks!

                        Fifa

                        Comment


                        • #13
                          Hi FIFA! Welcome to the forum. I too had surgery in COMO and St. Louis. I live a couple hours from COMO and actually travel that direction 1-3 times a week.

                          The hotel connected to Barnes is great. Makes getting around easy and the staff is personable. I didn't have my husband stay in the room over night but he was there till late which is good because they really help with the pain control when you are unable to really address it. He knew the signs of me squeezing my thumbs when it got unbearable (which I didn't realize I did) and was able to address the situation.

                          Good luck! You will be in good hand.

                          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


                          • #14
                            Originally posted by Irina View Post
                            Hi Fifa and welcome to the forum. Good luck with your surgery. I was also putting mine off for a long time because I just wasn't ready. People on this forum are wonderful...welcome to the family.
                            Thanks, Irina! I appreciate your welcoming words!

                            Have to admit that I really wasn't ready, either, but supposed I'm as ready as I'll ever be. It's not like it is going to fix itself and it certainly isn't getting any better! LOL

                            Take care!
                            Fifa

                            Comment


                            • #15
                              Hi Fifa,

                              I am fused T6 to Sacrum and I don't have many limitations. I don't need any toilet aid, I can swim and I do it every weekend, but I only do breast stroke. Any other type of swimming is not comfortable for me, just feels odd. But I was swimming using breast stroke only even before the surgery, so may be that's just my habit.

                              I never gardened, so can't comment on that, but think I would be able to do it if I wanted to. I quit doing yoga. My surgeon told me that I can do yoga, but modified. Honestly, if I wanted to go to my old yoga class, I'd have to modify A LOT and it would not worth it. I won't be able to do much. But I am not heart broken about it. There are many other things that I can do now and could not do before the surgery. Like standing and walking for as long as I want. Before, all I could stomach was 5 min of standing and I needed to sit down. After half-an-hour of walking my lower back was hurting. Now I can stand in the kitchen and cook without any pain, go to museums and cocktail parties and enjoy myself, travel and walk for hours and hours until my feet (not back!) get tired. We are going to Maui for Thanksgiving and I booked a sunrise tour to Haleakala (a dormant volcano) on a windy and bumpy road and a helicopter tour over west Maui and Molokai because I feel confident in my ability to handle bumpy roads and getting in and out of a helicopter.

                              So, am I sad about not being able to do yoga? No!

                              I had my surgery at UCSF and my family was with me most of the time. I was very lucky to have them there. But some people here did it solo. You need to prepare your husband and family to what is coming because people generally don't understand full implications of the early recovery. Educate them. They need to be ready mentally too.

                              Good luck to you!
                              Last edited by Irina; 10-05-2014, 05:04 PM.
                              I am stronger than scoliosis, and won't let it rule my life!
                              45 years old - diagnosed at age 7
                              A/P surgery on March 5/7, 2013 - UCSF

                              Comment

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