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SewBzzzy
01-07-2016, 05:49 PM
As a long time scoliosis patient, I've done a lot of reading on this site and have been truly impressed with the knowledge and caring by all!! Hopefully you'll have some advice to pass along.....

Here's my short history:
A rural farm girl from mid Michigan, diagnosed with scoliosis ("S" curve of 36 and 45 degrees) at age 17 in 1972 at Henry Ford Hospital in Detroit. A Harrington rod was recommended, but my parents wanted to try the Milwaukee Brace instead....which I wore until age 19 and in college. Yes, it was the BIG monster with the metal head posts along the back of the skull and the chin rest, etc. I wore it 23 out of 24 hours every day for two years. My lower curve was reduced to 26 degrees. I finished college, worked, married, had two lovely daughters, and tolerated the growing curve and pain well through the years with exercise and a busy work schedule. I had L2-L4 fused around age 24 or 25. At age 35, the "hump" on my back was growing larger, and my lower curve measured 68 degrees. I started visiting some doctors and getting advice. At age 45, I took the plunge and had spinal fusion with instrumentation done from S1 to T11 with great success by Doctor Herbert Roth, Beaumont Hospital in Troy. The pain and discomfort was greatly reduced for many years. I then had cervical fusion with instrumentation done in 2011, C4, C5 & C6. Again, great success. Due to increasing pain and "flat back" syndrome (even with the rods, my curves are 39 and 48 degrees), I'm now looking at revision surgery with Dr. Patel at University of Michigan Hospital in Ann Arbor, S1 to T7 or T4. I would love to return to Dr. Herbert Roth, but he has retired. :-(

I meet with Dr. Patel February 2nd to discuss the surgery, as I have more questions. I'm a high school secretary - 60 years old - and was told I could return to work in three months??? Really??? I'm a front desk secretary who is constantly up and down, squatting, bending, etc. I was off 6 months after my fusion 15 years ago, and I was much younger. Dr. Patel said this surgery will be much worse because of having to remove all the old bone and fusions, rods, etc.

I would love to hear ANY and all advice you can offer on time off work, recovery compared to prior surgery, information on doctors, etc. Technology has changed so much! Also, I exist on just cymbalta, ibuprofen, tylenol for arthritis, etc. I have trouble sleeping at night due to the pain. Any ideas or suggestions there? I do not like to take any narcotics as they make me sick to my stomach.

I'm so excited to have found all of you!!! I look forward to your responses!

LindaRacine
01-07-2016, 09:35 PM
Hi...

There seems to be a vast range in terms of recovery rate. On average, the majority of patients who have complex spine surgery get back to work between 3 and 6 months postop. This is purely a guess, but I'd say somewhere around 10-15% of patients take more than 6 months (or never return to work), and about 10-15% take < 3 months.

Surprisingly, sitting can be very difficult after spine surgery. Jobs that require gentle movement are much better than those where one needs to sit for long periods of time.

Good luck with your revision.

Regards,
Linda

susancook
01-08-2016, 12:17 AM
Can you return to work on a reduced schedule/hours?
Susan

SewBzzzy
01-08-2016, 06:03 PM
No, I cannot return part time. I wish I could!!!

Carol56
01-14-2016, 07:30 AM
As a long time scoliosis patient, I've done a lot of reading on this site and have been truly impressed with the knowledge and caring by all!! Hopefully you'll have some advice to pass along.....

Here's my short history:
A rural farm girl from mid Michigan, diagnosed with scoliosis ("S" curve of 36 and 45 degrees) at age 17 in 1972 at Henry Ford Hospital in Detroit. A Harrington rod was recommended, but my parents wanted to try the Milwaukee Brace instead....which I wore until age 19 and in college. Yes, it was the BIG monster with the metal head posts along the back of the skull and the chin rest, etc. I wore it 23 out of 24 hours every day for two years. My lower curve was reduced to 26 degrees. I finished college, worked, married, had two lovely daughters, and tolerated the growing curve and pain well through the years with exercise and a busy work schedule. I had L2-L4 fused around age 24 or 25. At age 35, the "hump" on my back was growing larger, and my lower curve measured 68 degrees. I started visiting some doctors and getting advice. At age 45, I took the plunge and had spinal fusion with instrumentation done from S1 to T11 with great success by Doctor Herbert Roth, Beaumont Hospital in Troy. The pain and discomfort was greatly reduced for many years. I then had cervical fusion with instrumentation done in 2011, C4, C5 & C6. Again, great success. Due to increasing pain and "flat back" syndrome (even with the rods, my curves are 39 and 48 degrees), I'm now looking at revision surgery with Dr. Patel at University of Michigan Hospital in Ann Arbor, S1 to T7 or T4. I would love to return to Dr. Herbert Roth, but he has retired. :-(

I meet with Dr. Patel February 2nd to discuss the surgery, as I have more questions. I'm a high school secretary - 60 years old - and was told I could return to work in three months??? Really??? I'm a front desk secretary who is constantly up and down, squatting, bending, etc. I was off 6 months after my fusion 15 years ago, and I was much younger. Dr. Patel said this surgery will be much worse because of having to remove all the old bone and fusions, rods, etc.

I would love to hear ANY and all advice you can offer on time off work, recovery compared to prior surgery, information on doctors, etc. Technology has changed so much! Also, I exist on just cymbalta, ibuprofen, tylenol for arthritis, etc. I have trouble sleeping at night due to the pain. Any ideas or suggestions there? I do not like to take any narcotics as they make me sick to my stomach.

I'm so excited to have found all of you!!! I look forward to your responses!

Hello.........my name is Carol and I'm very very new to this site......still not even sure if I am doing this right. I have a hunch I'm going to wish I had gotten to this site earlier. So anyway...........I am almost 60 as you are, and I am also a secretary in a high school I have been secretary to the principal of our fairly larger (1200 students) high school for about 18 years. I had spinal fusion surgery w/correction for my scoliosis May 2015. Iwas fused T6 to L4. Long story short (I'll go into a few details later).......but it have not been able to go back to work......and most likely will not be going back because I am facing a revision surgery (yep, after only 7 months). I have pretty much given in to the fact that I won't be able to go back to work after my next surgery (scheduled in two weeks).......just not going to happen.....too much recovery to get through. I'm pretty much ok with it, have figured out my finances and although it will be tight, it will be ok.
I'm going to look into this site on how to seek support for my reason for needing revision surgery. Let me try to make this short.........it seems I am allergic to the stainless steel rods my doctor used. I didn't know he was going to use stainless......I would have told him I am allergic.........i didn't find out about the stainless that was used until 2 months ago. I went to see my surgeon because I am in tremendous pain.......pain pain pain all day long. It just didn't seem right to me......so at my 6 month check up I asked the doc what could be wrong. That is when he told me about the stainless. I am flabergasted.......and have not been able to find much information on similar cases as mine.......so I am hoping to find here, someone else who may have had this problem.
Sorry for such a long reply. Good luck with your revision.............and if you can plan a way to not go back to work.......you deserve the recovery time...sincerely, Carol

SewBzzzy
01-14-2016, 06:52 PM
Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group. :cool:

Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?

LindaRacine
01-14-2016, 09:54 PM
Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group. :cool:

Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?

It really depends on the surgeon. Titanium is brittle, and actually will break faster than stainless steel. The advantage to titanium (and cobalt chrome) is that it interferes less with MRI images. Unfortunately, these metals still cause artifacts on the images, so the value isn't cut and dry.

--Linda

Susie*Bee
01-15-2016, 06:35 AM
Hi SewBzzzy! Welcome to the forum! I don't know if what I say may be a help or not, but I'll go ahead. I had my surgery, T2-L4, when I was 56. I was the elementary school librarian, and I'm sure my surgeon thought that is something like where you just sit and check out books... NOT! I was actively preparing for and teaching 20 classes/week, the library is the hub of the school and huge, and was open for students any time I didn't have a class. I was up and down doing bulletin boards, reshelving books, had lunch and recess duties, etc. We had a circulation of at least 200 books/day... Anyway, this is what my timeline/ schedule was. I had my surgery in earlyish May thinking the summer would be plenty of recovery time. Ha! No way, Jose. So next I applied for medical leave for the 1st semester. By early November they wanted to know if I'd be ready when 2nd semester started in January and I sure didn't know but had to make a decision. I ended up taking the 2nd semester off also and was sooooo glad I did. I had a hard enough time when I did start back the following school year, but managed. (I would go straight home and take a nap and my wonderful husband often did the cooking...) I have never considered myself a wimp, but my surgery really weakened me.

EVERYONE is so different -- and many have returned to their jobs fairly quickly. Others have taken much longer. I am glad that I took medical leave for that long and it worked out. My job also was one where you had to jump back into the whole shebang; all or nothing. If you can ask about one semester with the option of either returning or of taking off the 2nd semester, that might also work for you. They might let you go in and "test" yourself by shadowing your replacement at some point to see if you could actually hack it or not.

BTW - I have stainless steel. There are pros and cons, as Linda said. I am so sorry to hear of Carol's allergy to hers and the need for revision surgery. What a bummer.

One last thought, and that is that it keeps getting better. Each year you should, barring complications, keep getting stronger and more able. You will have to adjust the way you do many of your tasks. But I improved and was so much stronger after the 2nd year, and even more the 3rd year, etc. Best wishes!

Carol56
01-15-2016, 06:51 AM
Can anyone help me with using this site........I would like to see if I can find others who have had metal allergy reactions with their scoliosis fusion surgeries.
As I said yesterday, i am new to this site and I'm not quite sure how to search/seek out others in my situation. I'd appreciate any help.

Thanks so much,
Carol

Carol56
01-15-2016, 06:59 AM
Thank you, Carol, for your words of wisdom! Nice to see another High School Secretary in the group. :cool:

Stainless Steel? I thought all they used was Titanium? I know my existing rods are Titanium. I guess I should ask what they plan on using this time! How did you finally find out you were allergic to the Stainless?

After my surgery last May......naturally I had a lot of pain. The weeks and months were rolling along and the pain was not decreasing........and then I started to feel as if it were 'increasing'..........just not getting any better at all. For the last 3 months or so, I am in extreme pain.......just aweful. I am still taking the same narcotics as when I got home from the hospital. I had been taking a lot of tylenol but got off of that because it made no difference.
I've seen doctors for pain management........I've been going to PT.........but nothing at all is helping.
finally at my 6 month check up my surgeon asked me if I was allergic to jewelry. I said 'yes, I have to wear hypoallergic earrings....nickel free'.......and that's when he told me that I might be allergic and that he indeed used stainless steel. My jaw just about dropped to the floor........he said he could replace the rods with titanium..........but OMG, that can't be an easy task. I am petrified.......two weeks from today is my surgery and i am so scared.

I would love to find someone who has gone through this........I cannot be the only one out there.

Pooka1
01-15-2016, 09:10 AM
Hi Carol,

Apparently sensitivity to metals on the skin does not translate to implanted metals according to a Duke guy... please see this video with that reference.

https://www.youtube.com/watch?v=nP773c0HrHk

So your pain might be from something else. Getting rods replaced for a reason that may not be correct will not help your pain.

Good luck.

Carol56
01-15-2016, 04:34 PM
I have seen that video by Dr Hey before..........i wish he told a little bit more about why he feels that is true. Have you ever heard of the book "Steel Standing" ? It is about a woman who was allergic to her metal implants .....she had an amazing story but long story short, once her metal was 'changed out', she recovered fully.

I have read several articles on medical websites such as "Medscape" which talk about cases of metal allergies........so I do not believe what that doctor in the video says.

My own surgeon was the one who suggested that I my pain may be due to my being 'allergic' to the rods. I'm still hoping that this NSF site can help me find others who have had this problem.

Pooka1
01-15-2016, 04:50 PM
Well I did a short review and I think the results are all over the place. It seems at least possible you are allergic to the SS implants. I hope revision solves your pain.

Carol56
01-15-2016, 05:11 PM
http://reference.medscape.com/medline/abstract/26189276

The above link is a warning to surgeons about metal implants.

A co-worker of mine.....said his mother had a stainless steel implant in her ankle and had terrible problems....once they removed it, she was fine.

Also, as I stated, the book "Steel Standing" is a true testament to metal allergies within the body. Sadly, the author does not take personal correspondence as she was getting too much to handle, otherwise, i would have tried to speak to her. I have found a few people to provide support and will continue to look.

On the other hand, I doubt my surgeon would be able to get clearance from my insurance to do such a drastic surgery if he did not believe this were the problem.

Please, if there is anyone out there with similar problems, I look forward to hearing from you

Carol56
01-15-2016, 05:12 PM
I have found the subject to be 'all over the place' as well. Thanks

susancook
01-15-2016, 06:23 PM
Carol: how do you know that you are allergic to stainless steel?
Susan

Carol56
01-16-2016, 06:01 AM
When I went to see my surgeon for my 6 month follow up.........it was really because I was in terrible terrible pain. I cry just about every night as the pain just gets to me. My surgeon did an exam and asked me a lot of questions. Finally he asked me if I was allergic to jewelry. I said, yes, I need to buy hypoallergic earrings, specifically they must be 'nickel free'. My surgeon then looked at my chart to confirm, and said that my rods are stainless steel, and that stainless stell has nickel in it.........and that I might be having an allergic reaction. I was dumbfounded because I didn't know they were using stainless........and I would have told them not to, because I knew about my allergy to nickel and stainless steel.
I asked him, OMG, what can be done.........and he said he could remove the ss rods and replace them with titanium. I said (in a very nervous flustered voice) "you can do that?" and he very calmly said, "I can do that!", which was good to see his calmness and confidence in his reply, but I also know this means a whole other SURGERY.........and trust me, I am not looking forward to that.

I'm having patch testing done, have had many other tests..........does anyone know about the MELISA test? I have been told that I should ask for this.

I believe in my heart though, that this pain I have is due to allergy. The pain i have goes up/down both of my rods (they are probably each 10 inches long as it was a major fusion/correction) and it feels like there is tissue attached to the rods and that 'tissue' is pulling, tugging, itching at the rods. They don't feel like they are on fire, but the pain is excrutiating....to say the least. I need to be bed ridden most of every day. I can get up and shower but then it's rest rest rest. I might make it out to the grocery store with help, but once we are home, it's incline postion I must be.

I did seek a second opinion with another surgeon in Boston. He seemed reluctant to call it an allergic reaction, but he also said he has no idea what could cause me so much pain. My own surgeon said that "scoliosis surgery does not CAUSE pain, not at this stage'

So, I am at my wits end...........my only hope right now is removing those rods........I am in just so much pain.......and still taking the same narcotics I took right after the surgery.

Pooka1
01-16-2016, 08:18 AM
Are the screws SS? If so will that be a problem?

It would be a shame if you had the rods removed and still had the problem with being allergic to the screws.

leahdragonfly
01-16-2016, 10:13 AM
The screws could be replaced also, if they are stainless. Definitely a very good point, Sharon.

Pooka1
01-16-2016, 10:30 AM
And any cross-linkages. My kids have one or two cross-linkages as I recall which are probably SS.

Carol56
01-16-2016, 12:51 PM
I contacted the manufacturer after obtaining something called the "Implant Log Sheet" from my particular surgery...........the manufacturer has assured me that only the rods were stainless.

I'm glad about that...........as maybe they 'could' replace the screws...........but I'm sure that is a lot more work, and would make for even more risk.

leahdragonfly
01-16-2016, 05:15 PM
If you are solidly fused would it be possible to just remove all the hardware? Then there would be no question about any metal allergy.

Carol56
01-17-2016, 07:05 AM
You know, I did see a 'second opinion surgeon' and he said that would be a possibility..........I was surprised because my own surgeon told me that I'd never be able to survive without my hardware....which I assumed was because i have 'so much of it'..........and it is basically 'holding me up straight'.

The other issue is I'm not sure if I'm completely fused yet........they usually says one year.........and the thought of waiting four more months in my case, is terrifiying to me. I really am in so much pain and I worry about what else this allergy could be doing inside of me.

LindaRacine
01-17-2016, 12:36 PM
You know, I did see a 'second opinion surgeon' and he said that would be a possibility..........I was surprised because my own surgeon told me that I'd never be able to survive without my hardware....which I assumed was because i have 'so much of it'..........and it is basically 'holding me up straight'.

The other issue is I'm not sure if I'm completely fused yet........they usually says one year.........and the thought of waiting four more months in my case, is terrifiying to me. I really am in so much pain and I worry about what else this allergy could be doing inside of me.

Carol...

There is no reason to leave implants in once the spine is solidly fused. I would personally opt for having the implants removed and not replaced until it's verified that the fusion isn't solid.

--Linda

Carol56
01-18-2016, 07:40 AM
even though I had a large 'correction' done to straighten out my spine?

Pooka1
01-18-2016, 08:17 AM
Have they ruled out infection as to why you have pain in the area of instrumentation?

http://www.ncbi.nlm.nih.gov/pubmed/24487974

http://www.ncbi.nlm.nih.gov/pubmed/20032526

titaniumed
01-18-2016, 01:06 PM
Have they ruled out infection as to why you have pain in the area of instrumentation?


That’s what I was thinking, just needed Sharon to come up with it....

Welcome to the forum guys....

Ed

LindaRacine
01-18-2016, 01:20 PM
even though I had a large 'correction' done to straighten out my spine?

That's what the fusion is for. Implants alone will not hold your spine straight. They're there only to hold the spine straight while fusion occurs. The implants will eventually break if there is no fusion.

titaniumed
01-18-2016, 01:23 PM
And thank you Sharon for posting, and I thought it was just me that thought curve progression was risky after implant removal. I guess some surgeons “don’t” reveal all the facts. (For the Facebook group)

Patients should be cautioned that hardware removal after posterior spinal fusion may not provide complete pain relief. Furthermore, there is risk for curve progression following removal of instrumentation, particularly in the setting of infection. Back pain may be an indicator of infection, and intraoperative cultures should be taken at the time of implant removal.

I'm not a surgeon, but I can read. I might not be a revision patient, but it is my business to be informed.

Sorry for the rant.

Ed

susancook
01-19-2016, 02:27 AM
Patients should be cautioned that hardware removal after posterior spinal fusion may not provide complete pain relief. Furthermore, there is risk for curve progression following removal of instrumentation, particularly in the setting of infection. Back pain may be an indicator of infection, and intraoperative cultures should be taken at the time of implant removal.

Ed

Now facing revision #5, I have some insight into pain and instrumentation infection and surgery. In each of my surgeries, the surgeon has said some thing like." maybe" or "probably" what is planned in the surgery will provide pain relief. Hearing the uncertainty that the surgery might not completely eradicate pain is very disconcerting when one is undergoing such a major procedure and the thought that the surgery might even make the pain worse is beyond scary. In the past 2+ years, I have had lots of back pain and even complete paraplegia having: a screw in my spinal cord, 4 broken rods, all vertebrae w/ instrumentation from T3-sacrum showing pseudarthrodesis, and a spinal hardware infection w/ P. Acnes. Fortunately, I have very little pain now and use crutches/wheelchair and will take antibiotics for the rest of my life.

In my opinion, most revision surgery is a "best guess" [be it a very educated/experienced guess] on the surgeon's part of what to do to decrease pain. Most of the time, they get it right. Sometimes, not so much. Chronic pain neural pathways sometimes remain in spite of a surgeon's best efforts. Also, it is very difficult to grow the various pathogens that cause hardware biofilm infections.

I hope that you find relief from your pain.

....and Ed, that did not even sound like a rant!

Susan....also, not a surgeon but I also read a lot!

susancook
01-19-2016, 02:35 AM
Have they ruled out infection as to why you have pain in the area of instrumentation?

http://www.ncbi.nlm.nih.gov/pubmed/24487974

http://www.ncbi.nlm.nih.gov/pubmed/20032526

Sharon, the article about adolescent instrumentation removal was interesting as the #1 reason for removal was "fistula" [I think the # was 38.9%]. Yikes! Exactly what do they mean?
Susan

Pooka1
01-19-2016, 07:13 AM
Sharon, the article about adolescent instrumentation removal was interesting as the #1 reason for removal was "fistula" [I think the # was 38.9%]. Yikes! Exactly what do they mean?
Susan

I don't know what they mean. Maybe Linda can tell us.

leahdragonfly
01-19-2016, 08:10 AM
A fistula is an abnormal channel or opening from one structure into another due to infection.

Doesn't sound good at all!

LindaRacine
01-19-2016, 01:19 PM
And thank you Sharon for posting, and I thought it was just me that thought curve progression was risky after implant removal. I guess some surgeons “don’t” reveal all the facts. (For the Facebook group)

Patients should be cautioned that hardware removal after posterior spinal fusion may not provide complete pain relief. Furthermore, there is risk for curve progression following removal of instrumentation, particularly in the setting of infection. Back pain may be an indicator of infection, and intraoperative cultures should be taken at the time of implant removal.

I'm not a surgeon, but I can read. I might not be a revision patient, but it is my business to be informed.

Sorry for the rant.

Ed

If you're removing implants on a child or young adult, there is a risk of minor curve progression over the patient's lifetime. I think the progression is rarely enough to require treatment, but nonetheless, it's something that should be disclosed. If you're talking older adults, the risk of progression comes from the lack of solid fusion. It is irresponsible for a surgeon to not disclose that information. The risk of reoperation is there whether the implants are removed or not.

LindaRacine
01-19-2016, 01:22 PM
A fistula is an abnormal channel or opening from one structure into another due to infection.

Doesn't sound good at all!

When someone has a deep infection, I think it often (maybe even always) forms a fistula. Without getting too graphic, there has to be somewhere for the biproduct of the infection gets stored.

kennedy
01-19-2016, 06:43 PM
good luck with your surgery

susancook
01-20-2016, 01:41 AM
I get what a fistula is....but why did 38% of the adolescents have fistulas and it is not mentioned at all for the adult population?
What am I missing?
Susan