Frustrated Newcomer

[ParrotOtis]

Hi everyone. I wanted to take this opportunity to introduce myself.

I was diagnosed with AIS when I was in 5th grade. After watching and bracing, I had a posterior fusion from T2-L1 in 1995 when I was 17. Luckily, the last 12 years have been uneventful. Life pretty much went on normally - up until about 6 months ago. That's when I started to see something sticking out near the bottom of my fusion. I decided not to continue treatment with my original surgeon, as I have moved out of the area where he practices. After researching other surgeons, I chose one and have been seeing him over the last few months. The CT scan, MRI and X-rays indicate a non-union at the T10-T11 space and my rods have become displaced. Here's the frustrating part. I saw my doctor earlier this week with the intention of scheduling a revision surgery for later this year, when he tells me he will no longer be seeing patients after June 15! Now I feel like I'm back to square one . . . having to find a new surgeon. Being comfortable with the surgeon is so important, and now I have to start all over.

I found this forum a few months back when I starting having these problems. I am so impressed by the amount of information and support that is here. I only wish this was here when I was getting ready for my first sugery! I have already searched the forum and read everything I can about the surgeons in my area and I think I know who I will try next.

So, thanks to all of you for the information on this site. Hopefully I can help some of you by sharing my experiences, too.

[SARAHK]

I have a great Chicago surgeon!

Hey- I'm new to this site too. Your posting is the first one I've read and replied to and it just so happens that I just had a revision surgery in Chicago (you live here correct?). I went to Dr. Purnendu Gupta at Univ. of Chicago Hospital. He is an AMAZING surgeon. I have a friend who attends the university there and he says that Dr. Gupta is the best one there. Also the staff there are wonderful. I saw another doctor at Rush Memorial last year, Dr. Hammerberg. He wasn't personable at all and didn't listen or believe me when I told him I was in a lot of pain.

I'm going to tell you my story in hopes that it will help you or anyone else questioning a revision surgery. I had a spinal fusion with rods in 2000 when I was 19 for a 75 degree curve. Most of my back is fused, I can't remember the Ts and the Ls exactly . I started having a lot of pain about 4 years later. One of my rods had broken but both surgeons felt like that wasn't going to be an issue. After the CT Scan showed that the fusion had healed, Dr. Gupta gave me the option of having the rods removed, although he warned me that only two thirds of patients have had less pain as a result. He said he was only offering it because he believed me when I said I was having a lot of pain. I had tried physical therapy and nothing had worked. He is a very compassionate doctor and listens to your concerns. BUT he won't pressure anyone into surgery unless it's absolutely necessary. So after telling him I didn't want to live with this pain for the rest of my life, he decided that having the rods removed was an option that could possibly help and was something he would be willing to do. He said there was also a small chance that there are areas that the CT Scan doesn't show where the bone might not have healed completely like he thought it had. And if that was the case, he would have to put new instrumentation in and put new bone in those areas. Well long story short, that's what he found when he went in...my fusion from the first surgery hadn't healed completely. So he put new instrumentation in and also did a thoracoplasty procedure where they reduce the hump in your ribs. He used the rib bone to fix my fusion as well as a bone catalyst to ensure it grows this time.

Whew! I hope I didn't bore you out of your mind! I just think my story might be helpful to you, and hopefully others. It is hard to make a surgery decision when you're not a teenager anymore. Younger people can bounce right back from this kind of thing but once you hit 25 the healing process is much harder. I'm 3 weeks out and there are good and bad days. But overall I'm SO happy I did this because they found the problem. Dr. Gupta said that was definitely why I was having so much pain. Hope that helps. And let me know if you'd like Dr. Gupta's info. Take care

[ParrotOtis]

SarahK - thanks for responding. It sounds like your revision was a success. Good luck with the rest of your recovery.

Thanks for the info on Dr. Gupta. I am still waiting to hear from my surgeon to see if Dr. Schafer can fit me in soon. He's at Northwestern. If he's too busy, I'm considering Dr Gupta or Dr DeWald (at Rush). I'm hoping to hear more this week so I can schedule appointments soon. I really don't want to put off the surgery much past June.

[CHRIS WBS]

So I was right about Dr. Schafer. He must be retiring. That was my impression when I saw him at Northwestern in January. He strongly recommended surgery then and advised me to bring my family in the following month. He then gave me his opinion of the surgeons I had previously consulted with. That's when I suspected he might be retiring. I felt that as a courtesy he was giving me his professional opinion in the event I elect to postpone surgery. Of the surgeons I have seen, he said Dr. Bridwell in St. Louis is brilliant and outstanding, Dr. Hammerberg is excellent, but added he would not recommend Dr. Gupta for me.

Sarah, who did your original surgery in 2000?

Chris

[ParrotOtis]

Actually, I had been seeing Dr Matthew Hepler. He is the one who told me he will not be seeing patients after June. He is going to consult with Schafer to see if Schafer will be able to do my surgery. I find it a bit troubling that you got the impression that Dr Schafer might be retiring soon. I would hate to invest the time with Schafer only to have him gone soon too. Hmm. Maybe I should head to Rush or Univ of Chicago.

[LindaRacine]

Sarah, who did your original surgery in 2000?

Chris

That may or may not mean anything. Professional jealousies abound. Dr. Gupta operates with Dr. Boachie when they travel for FOCOS, so if he wasn't a great surgeon to start with, he almost certainly is now.

--Linda

[SARAHK]

Sarah, who did your original surgery in 2000?

Chris

I had my first surgery at Shriners Hopsital in Greenville, SC. Originally Dr. Peter Stasikelis was supposed to perform my surgery but the day before they had to change to Dr. Benjamin Allen. So both were on my case but Dr. Allen and his resident Dr. Lee actually performed my surgery.

[CHRIS WBS]

Professional jealousies abound.

Hi Linda,

I don’t think it has anything to do with professional jealousy. I sought an opinion from Dr. Schafer after coming across an issue of “Chicago” magazine from last year that profiled Chicago’s top docs. These doctors were named by their peers as being the best in their area of practice. Dr. Schafer was voted best in the area of orthopedics. I sensed he has a genuine concern for his patients and is as compassionate a doctor as Dr. Gupta. When I asked him why he would not recommend Dr. Gupta, he said because I mentioned to him that Dr. Gupta suggested the possibility of stopping my fusion at L-5. And that’s when he told me that he’s been doing this long enough to know the consequences of stopping a fusion at L-5. Interestingly, a woman from Florida who I’ve been corresponding with and who had revision surgery last year was told by her revision surgeon that part of her problem stemmed from not being fused to the pelvis in the first place. Over the years her spine pitched forward, her hardware broke causing her to lean forward and she lost five inches of height. And who was her original surgeon? Dr. Schafer did her surgery when she lived in Chicago in the 80s. I think these doctors who have been in practice a long time have learned a lot from experience. This woman in question is in the medical profession and asked me why I am postponing surgery. I told her my main reason is a lack of a support system. I also mentioned that while I have some discomfort (mostly arthritic), I can pretty much do anything that I want, although there are days when I do experience spinal fatigue. Her advice to me is that if I can manage the discomfort and live with a deformity, then avoid surgery. She added that while there are benefits to this surgery, once I have spine surgery, my spine will never be the same. She was originally treated surgically as an adolescent and everyone, including the doctor, thought she was fixed for life. She subsequently underwent four more surgeries over the years.

Chris

[SARAHK]

Dr. Gupta

I can't say enough good things about Dr. Gupta. He has been so informative and knowledgeable from the very beginning. He consulted my case with other doctors in the field as well. Dr. Hammerberg was obviously very busy and didn't have a lot of time for me. When I told him I was in a ton of pain and asked him if there was anything he could recommend to take he just hurriedly said "take Alleve" and walked out of the room. It literally brought me to tears. I felt like he didn't believe a word I was saying and that I was just there to try and get some drugs off of him. I should say though that I have a friend who does like him a lot. But she has never needed surgery so her case was not as severe. I just don't think he really listened and spent any time trying to get to the root of my problem like Dr. Gupta did.

Dr. Gupta also has a wonderful nurse associate, Maria, working with him. I've called her quite a few times with questions and she always gets back to me with a response from the doctor. There aren't many physicians who really care about your case enough to spend that much time with you. Dr. Schafer sounds great too. I work in advertising and so I inevitably will probably move away from Chicago eventually. Living in a large city like Chicago, it's easier to find a better pool of physicians. I can only hope that I can find one like Dr. Gupta in the next city I live in.

[LindaRacine]

Hi Chris...

I absolutely think that the best reason to choose the best surgeon is so that one has the best shot at a good outcome because the proper fusion levels were chosen. With that said, my understanding is that the jury is still out in terms of whether to fusion to L5 or the sacrum. My impression is that many patients are being given the option of saving the last disc, with the knowledge that there's a fairly good possibility that an extension to the sacrum will be needed in the future.

Here's some research on the topic:

Spine. 2003 Oct 15;28(20):S234-42.Click here to read Links
The pros and cons to saving the L5-S1 motion segment in a long scoliosis fusion construct.

* Bridwell KH,
* Edwards CC 2nd,
* Lenke LG.

Department of Orthopaedic Surgery, Washington University, St. Louis, Missouri 63110, USA. bridwellk@msnotes.wustl.edu

STUDY DESIGN: This is a review of the literature and personal experience as it pertains to whether a long fusion should be stopped at L5 or S1 in a patient with adult lumbar scoliosis and degenerative changes. OBJECTIVES: To summarize the problems with decision-making and to point out the strengths and limitations of past studies. SUMMARY OF BACKGROUND DATA: There is a paucity of data on this subject. Problems with stopping at L5 include fixation at that segment and subsequent breakdown at L5-S1. The problems with stopping at the sacrum include the additional surgical requirements and increased potential for pseudarthrosis. METHODS: Summarized is past literature and, to some extent, personal experience of the author(s). RESULTS: There are situations where it is clearly preferable to stop at the sacrum. However, there are many borderline circumstances in which whether it is better to stop at L5 or the sacrum is not clear cut. CONCLUSIONS: The answer to this question requires further study. Multicenter data collection, consistency of approach, and potential randomization in a prospective fashion might help provide an answer.

Spine. 2003 Oct 15;28(20):S234-42.Click here to read Links
The pros and cons to saving the L5-S1 motion segment in a long scoliosis fusion construct.

* Bridwell KH,
* Edwards CC 2nd,
* Lenke LG.

Department of Orthopaedic Surgery, Washington University, St. Louis, Missouri 63110, USA. bridwellk@msnotes.wustl.edu

STUDY DESIGN: This is a review of the literature and personal experience as it pertains to whether a long fusion should be stopped at L5 or S1 in a patient with adult lumbar scoliosis and degenerative changes. OBJECTIVES: To summarize the problems with decision-making and to point out the strengths and limitations of past studies. SUMMARY OF BACKGROUND DATA: There is a paucity of data on this subject. Problems with stopping at L5 include fixation at that segment and subsequent breakdown at L5-S1. The problems with stopping at the sacrum include the additional surgical requirements and increased potential for pseudarthrosis. METHODS: Summarized is past literature and, to some extent, personal experience of the author(s). RESULTS: There are situations where it is clearly preferable to stop at the sacrum. However, there are many borderline circumstances in which whether it is better to stop at L5 or the sacrum is not clear cut. CONCLUSIONS: The answer to this question requires further study. Multicenter data collection, consistency of approach, and potential randomization in a prospective fashion might help provide an answer.

Spine. 2001 May 1;26(9):E182-92.Click here to read Links
Complications and results of long adult deformity fusions down to l4, l5, and the sacrum.

* Eck KR,
* Bridwell KH,
* Ungacta FF,
* Riew KD,
* Lapp MA,
* Lenke LG,
* Baldus C,
* Blanke K.

Department of Orthopaedic Surgery, Barnes-Jewish Hospital at Washington University, St. Louis, Missouri 63110, USA.

STUDY DESIGN: This is a consecutive study of patients having undergone surgical treatment of adult lumbar scoliosis. Follow-up ranged from 2 to 13 years (average 5 years). OBJECTIVES: To assess the complications and outcomes of patients with long fusions to L4 (n=23), L5 (n=21), or the sacrum (n=15) and determine if a "deeply seated" L5 segment is protective. SUMMARY OF BACKGROUND DATA: Few studies assess outcomes and complications in adults fused from the thoracic spine to L4, L5, or the sacrum with minimum 2-year follow-up. METHODS: Fifty-eight patients (59 cases; average age 43 years; range 21 to 60) with minimum 2-year follow-up were analyzed for subsequent spinal degeneration and complications. Outcomes were assessed from questionnaires administered at latest follow-up. RESULTS: Sixteen percent of cases (7 of 44) fused short of the sacrum displayed subsequent postoperative distal spinal degeneration, although only three patients were symptomatic. Compared with the group with no subsequent degeneration, this group had a lower improvement in function and pain relief. Other complications for patients fused short of the sacrum included two cases with crosslink breakage, one with neurologic deficit, three with pseudarthroses, one with hook pullout, and one with L5 screw pullout. For cases fused to the sacrum, two cases with deep wound infections and one with loose iliac screw requiring removal were observed. Because two of four cases fused to L5 with subsequent degeneration at L5-S1 were observed to have "deeply seated" L5 segments and two of the four did not, the authors could conclude only that "deep seating" of L5 is not absolute protection. CONCLUSIONS: Fusions short of the sacrum did not have predictable long-term results. Those fused short of the sacrum who developed distal spinal degeneration had worse outcomes. Patients fused to the sacrum did not have a higher complication rate. A "deeply seated" L5 segment does not necessarily protect the L5-S1 disc.

So, if you went back to Dr. Gupta, he might recommend that you not go with Dr. Schaefer because he mentioned that he wanted to fuse you to the sacrum. My point is that I don't think we lay people can judge who is the best surgeon based on their opinions of one another. All we can do is go with our instincts, and with what we hear from other patients.

Regards,
Linda

[CHRIS WBS]

Here's what was presented at the most recent SRS annual meeting by Bridwell & company.

Paper #22
Thoracolumbar Deformity Arthrodesis Stopping at L5: Fate of the L5-Sl Disc with a Minimum S-year Follow-up
Craig A. Kuhns, MD (Washington University School of Medicine); Keith H. Bridwell, MD; Lawrence G. Lenke, MD; Courtney Amor; Ronald A. Lehman, Jr., MD; Jacob Buchowski. MD; Christine Baldus, LPN; Charles Edwards, 11, MD
Background: Two previous studies reported the results of long deformity fusions terminating at L5 with minimum 2-year follow-up only.
Purpose: Evaluate the fate of L5-S1 disc analyzing subsequent disc degeneration and associated risk factors for degeneration.
Methods: Thirty consecutive patients with an average age of 45 years (20-62yo) were fused from the thoracic spine to L5 and were evaluated at a mean follow-up of 8.7 years (5-15.5). Patients were evaluated preoperatively, postoperatively, and latest follow-up with radiographs and SRS scores. Disc degeneration utilizing validated radiographic Weiner grades. Grade 0-1 discs were "healthy" and grade 2-3 were degenerated. Patients with "healthy" discs preop that subsequently degenerated were designated subsequent advanced degeneration (SAD).
Results: 2/30 patients had preoperative advanced degeneration of the L5-Sl disc (Weiner Grade 2-3). 28/30 patients were assessed as "healthy discs" preop (Weiner Grade 0-1). By latest follow-up, subsequent advanced L5-Sl disc degeneration (SA.D) developed in 19 of these 28 patients (68%) who had "healthy" discs. Younger age at the time of surgery is an associated risk factor for developing SAD (p=0.04). Preop sagittal balance was not significantly different between those patients that developed SAD and those who did not. 17/30 patients (57%) were noted to have sagittal imbalance >5cm at follow-up. At most recent follow-up the average sagittal imbalance in the SAD group was 72mm. In the "healthy" group it was 3mm (p =0.001). 6/30 patients (20%) were revised with extension to the sacrum. There was a trend toward inferior SRS pain scores at follow-up in SAD patients (avg. score − 4.0 vs 3.2,p=0.08).
Conclusion: Advanced L5-S l DDD developed in 68% of deformity patients after long fusions to L5 with 5-15 year follow-up. SAD frequently results in significant positive sagittal balance with minimum 5 year follow-up.

[ParrotOtis]

Just wanted to follow up to my original post -

I met with Dr. Schafer yesterday and the appointment went great. I was impressed by Dr. Schafer and have scheduled my revision surgery for August 30. Now the long wait begins.

[CHRIS WBS]

I'm happy to hear that your appointment went well and you were able to secure a surgery date with Dr. Schafer. You are young and will do just fine.

Chris