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gardenia
04-14-2015, 08:27 PM
Who should do your Spinal Fusion? Was your surgeon a specialist in SCOLIOSIS???
Is any surgeon specializing in the Spine and its branches good enough to handle a back with this particular deformity?

Question is:
After consulting with a well known head of the Orthopeadic Spine Surgery Dept at a well known California Medical School who recommended removal of implants because they are causing problems (iliac pedicle screws and surrounding back instrumentation after fusion) i.e. debilitating pains.

I am in doubt because my original surgeon said: I am a specialist in Scoliosis and your other doctor is degenerative doctor, so does not deal with scoliosis patients

Is this a valid statement? Please I need to know if that is an important consideration. I am assuming that everyone here has scoliosis so did everyone had surgery by an scoliosis surgeon?

Lizardacres
04-15-2015, 09:47 AM
If it were me, I would stick with one of the docs on the SRS list as they do specialize in scoliosis and have demonstrated experience. But you want somebody who does a lot of adults and not just teenagers as our problems include degeneration. You really need both, in my opinion.

But for you, if surgery caused your problems, why are you considering another major surgery? If you have a focused spot that is irritated, it's not a big deal to have a screw removed, but I would want to be pretty certain that additional surgery is warranted.

gardenia
04-15-2015, 12:39 PM
One one hand the doctor who placed the hardware a Scolio expert is against removal.

The other hand, my pain is so great on a daily basis and this other SPINE doctor head of orthopeadic at UC San Diego is proposing removal of hardware. He makes total sense as each time he pushes on the points, I jump 3 floors up.

My husband and I scheduled a 4 day trip from home to St louis (4 hours drive + 5 hours plane ride) to see my original surgeon and find out why he does not want the removal. This is for peace of mind. Whatever he propose will have to be schedule for another trip.

But, the doctor in San Diego makes sense, I trust his ability to remove and MAYBE take away the pain. BUT, I still have scoliosis and if I live another 15-25 years what is the quality.

Wish I can go to psychic with a white glass ball to tell me the future.

JenniferG
04-16-2015, 04:02 AM
My awesome doctor specializes in scoliosis surgery. He does around three per week. He does certain other spinal surgeries but it's for his skills as a scoliosis surgeon that he's known.

gardenia
04-17-2015, 01:51 PM
My awesome doctor specializes in scoliosis surgery. He does around three per week. He does certain other spinal surgeries but it's for his skills as a scoliosis surgeon that he's known.

Thanks, Jennifer

I wanted to know if I would be safe in the hands of a Spine (weekly) specialist removing the hardware if or versus the original surgeon who is an Scolio expert.

I am feeling worse everyday.

JenniferG
04-18-2015, 04:39 AM
I'm so sorry Gardenia. I can't imagine your disappointment after all you've already been through. I'm not the person to say which surgeon would be the one but I wish you great success. I hope others who've had their rods removed can help you.

Tableone
04-19-2015, 01:23 PM
Gardenia:

When I had my hardware removal, I had on ordinary spine surgeon, not a Scoliosis specialist, do it. The two Scoliosis surgeons I asked about it told me the metal would not be causing me pain and even went so far as to say that bone didn't hurt! Of course this was twenty years ago. Anyway, I went for a third consult and booked the surgery the next week with a new, young spine surgeon. Taking the hardware out is not the same as putting it in as you are not correcting anything, you are just taking it out. Back then they didn't have MRI's, so it was done by an X ray only. I was told it would take three hours, it took eight plus hours as the bone had grown over the metal. It was the best thing in the world to get all the hardware removed, and if I have fusion to the sacrum, which, with my pain being what it is, I will almost certainly have to, I will DEFINITELY book a hardware removal as soon as possible afterwards. If you type in "hardware removal scoliosis surgery" on youtube you will see videos of people talking about it. Also, feel free to PM me about it was well. Good luck, do what's best for YOUR body, you're the one who has to live with it.

gardenia
04-20-2015, 12:21 AM
Gardenia:

When I had my hardware removal, I had on ordinary spine surgeon, not a Scoliosis specialist, do it. The two Scoliosis surgeons I asked about it told me the metal would not be causing me pain and even went so far as to say that bone didn't hurt! Of course this was twenty years ago. Anyway, I went for a third consult and booked the surgery the next week with a new, young spine surgeon. Taking the hardware out is not the same as putting it in as you are not correcting anything, you are just taking it out. Back then they didn't have MRI's, so it was done by an X ray only. I was told it would take three hours, it took eight plus hours as the bone had grown over the metal. It was the best thing in the world to get all the hardware removed, and if I have fusion to the sacrum, which, with my pain being what it is, I will almost certainly have to, I will DEFINITELY book a hardware removal as soon as possible afterwards. If you type in "hardware removal scoliosis surgery" on youtube you will see videos of people talking about it. Also, feel free to PM me about it was well. Good luck, do what's best for YOUR body, you're the one who has to live with it.

I was looking exactly for this answer.

My husband and I are flying to st Louis a week from wednesday April 26 or so just to get/hear why Dr Bridwell, one of the best scolio tell me why not to remove or offer me an alternative. My husband is in San Francisco on business for two days and visiting my old neighborhood (Belmont, Ca) which I miss dearly. I am alone because I am in so much pain & can't take a step.

We had to go all the way to ST LOUIS to not leave any question/answers untold. However dismal, I have scheduled for removal by dr Garfin (solely) a spine surgeon on May 28th @UCSD

I trust and am glad that you can validate that he can do the job. Dr Garfin told me this is not his first time. He also specializes on iliac pain and has a lonng lenghty CV. I would have never doubted him except when dr B. mentioned a scolio specialist vs a spine deformity doctor, !what?!##!?

Of course, I would not have a plumber try to tune my piano, would I?

However, without the hardware what is my curve depend on from collapsing? I hope never to have a 3rd surgery. I find myself already at a dead end. With this pain in the last month, I am so close to be dead rather than suffer more each day. NO, nothing other than depression for now. I have two wonderful girls getting their hard earned PhD in about 2-3yrs and I have to ba alive to brag and wait for grandbabies.

Thanks TableOne

Tableone
04-21-2015, 08:20 PM
Hi Gardenia:

Once the bone is fused, it is my understanding that you no longer need the hardware. My curve had not gotten worse or anything since my hardware removal twenty years ago; it is a solid 47 degrees. However, I don't know if this is different in the sacrum area, but I'm assuming not as I was told by a Scoliosis surgeon at Stanford that after I'm fused to the sacrum that I can indeed have a hardware removal surgery done. It's just that people don't do it that often, and that is why you don't hear about it that much. Your pain might not be all reduced, but it feels DAMN GOOD to get all that junk out of there, I can tell you. Plus no more leaning back against hard chairs and feeling metal. One thing to be warned about, and I'm posting this for everyone else reading: my body went into a sort of shock when I got home without the metal and I shook violently for several days because I was so cold. My physical therapist (the doctors had never heard of this and didn't know what to say) said it was from my body adjusting to losing the metal. So, have some hot water bottles and heating pads around and a hospital bed rental would be a good idea. However, maybe for you this won't happen (the cold thing) as you have less hardware to remove than I did. Good luck, I'm excited for you!

TwinmomTN
07-22-2015, 10:13 PM
Gardenia, I had my surgery done by LENKE, same office in St. Louis. I'm curios how you are doing since you had hardware removal. I was told by LENKE that my curves would return if I the hardware removed and it wouldn't help my pain. I am 3 years out from my surgery so I know my bone has grown over the hardware plus I have pelvic fixation w iliac screws. Can removal even be done this far out from original surgery and with this much hardware in??? I've not even considered it since I was told by "the best" not to.

Hope your pain is better. It stinks, I know suffer daily with extreme sciatic and hip pain and have everyday for 3 years.

Pam

gardenia
07-23-2015, 11:34 AM
Well, should have updated this forum but here it is. Spent the worse 3 months between prior to going to see Bridwell and a month after he told me everything is beautiful and in place. I should be good to go forward as long as I don't remove my hardware by Dr Garfin at UCSF. There doctors are more into their doing a perfect job than into the patient's pain. Pain was was better in the beginning of May as I was in St Louis and having my baby daughter with us.

Once back to El Centro which is 2.5 hours from San Diegok I did three things.

1. visit a pain doctor (actually it was only a nurse assistant) who is qualified to dispense medicine to people with pain. He does not look for the pain just treat it.
2. go to a psychiatrist to see about anti-depressant meds (Effexor XR) that I was taking for years to alleviate pain with no success. I was taking 3 pills/day and he removed one and added abilify (costs a lot of money and but it WORKED)!!!!!
3. Found a accupuncture Korean guy but not sure it is working.

This is really great news as I am in much less pain with the Fentamyl patch. Started at 25mg and now at 50mg. And, the mental imbalance that caused depression as the pain was so debilitating.

I cancelled my surgery to remove all my hardware as Dr Bridwell convinced me to not do it. And, I am glad, I did not.

I am open to any questions if you contact me directly, I can answer mch quicker and this notification system is not working right. ccmai4G@gmail.com


Gardenia

golfnut
07-23-2015, 07:08 PM
Gardenia,
I am glad to read that you are doing much better!

LindaRacine
07-23-2015, 09:11 PM
Well, should have updated this forum but here it is. Spent the worse 3 months between prior to going to see Bridwell and a month after he told me everything is beautiful and in place. I should be good to go forward as long as I don't remove my hardware by Dr Garfin at UCSF. There doctors are more into their doing a perfect job than into the patient's pain. Pain was was better in the beginning of May as I was in St Louis and having my baby daughter with us.

Once back to El Centro which is 2.5 hours from San Diegok I did three things.

1. visit a pain doctor (actually it was only a nurse assistant) who is qualified to dispense medicine to people with pain. He does not look for the pain just treat it.
2. go to a psychiatrist to see about anti-depressant meds (Effexor XR) that I was taking for years to alleviate pain with no success. I was taking 3 pills/day and he removed one and added abilify (costs a lot of money and but it WORKED)!!!!!
3. Found a accupuncture Korean guy but not sure it is working.

This is really great news as I am in much less pain with the Fentamyl patch. Started at 25mg and now at 50mg. And, the mental imbalance that caused depression as the pain was so debilitating.

I cancelled my surgery to remove all my hardware as Dr Bridwell convinced me to not do it. And, I am glad, I did not.

I am open to any questions if you contact me directly, I can answer mch quicker and this notification system is not working right. ccmai4G@gmail.com


Gardenia

For the record, Steve Garfin is at UCSD, not UCSF. :-)

LindaRacine
07-23-2015, 09:14 PM
Gardenia, I had my surgery done by LENKE, same office in St. Louis. I'm curios how you are doing since you had hardware removal. I was told by LENKE that my curves would return if I the hardware removed and it wouldn't help my pain. I am 3 years out from my surgery so I know my bone has grown over the hardware plus I have pelvic fixation w iliac screws. Can removal even be done this far out from original surgery and with this much hardware in??? I've not even considered it since I was told by "the best" not to.

Hope your pain is better. It stinks, I know suffer daily with extreme sciatic and hip pain and have everyday for 3 years.

Pam

Implants can be removed many years after surgery, as long as there's not a lot of bony overgrowth. If the implants are really buried, I think it's generally not advisable to remove any implants that have to be dug out.

--Linda

titaniumed
07-24-2015, 12:10 AM
Gardinia

The decision to remove hardware is not an easy decision......going back in there and dealing with bone overgrowth like Linda mentioned and scar tissue is not something to take lightly. Scar tissue can really cause problems....Remove your rods and you will re-curve in time. It almost defeats the main purpose of having scoliosis surgery to begin with. Karen Ocker posted about this years ago as it happened to her....I miss her posts

So glad they have the meds balanced out for you.....this being a challenge especially if undiagnosed comorbidities are present. I’ve seen this happen.....”Oh guess what, you have this now, and your on the wrong meds”. (Both of these cases were undiagnosed diabetics) and who knows what else.....

and it does make you wonder. And it’s a blessing when things are working.

Thanks for letting us know...

Ed

Susie*Bee
07-24-2015, 06:50 AM
Not that it matters, but I am sure that I remember Karen did not have hardware to begin with. I think I remember because she is like a friend of mine... they had their surgeries before hardware was put in. You were straightened and then put in a body cast for a really long time. My friend was 14 and was in a full body (torso) cast for a whole year. Just think of the implications for a young adolescent girl. Pretty terrible. She missed that year of school as well and couldn't go anywhere, of course. Flat on her back for a year, at someone else's mercy for all her personal hygiene needs, etc. Torture. And we complain! About 15-20 years ago or so it all went sour and her body lost out and she now has way over 120º curves. She has been to see topnotch specialists, but her bones are extremely fragile and everything is tangled, and there is nothing they can do. I remember having this discussion with Karen -- that there is an innate memory that, over time, your body wants to return to. I am not at all sure if that is true, but it would be interesting to see if someone can find some studies on that. I am sure that is why Dr. Lenke has advised you as he did. On the other hand, there are probably plenty of people who have maintained their "straightness" alright, but I sure wouldn't want to risk it. Best wishes.

scooter950
07-24-2015, 09:06 AM
Good point Susie B- think about wearing braces for your teeth! if you stop wearing the retainer, your "straight" teeth will revert to the crooked position. it takes years for the new bone to grow to support the correct straight smile. so why would it be different for our spines? interesting ....

susancook
07-25-2015, 10:50 PM
Who should do your Spinal Fusion? Was your surgeon a specialist in SCOLIOSIS???
Is any surgeon specializing in the Spine and its branches good enough to handle a back with this particular deformity?

Question is:
After consulting with a well known head of the Orthopeadic Spine Surgery Dept at a well known California Medical School who recommended removal of implants because they are causing problems (iliac pedicle screws and surrounding back instrumentation after fusion) i.e. debilitating pains.

I am in doubt because my original surgeon said: I am a specialist in Scoliosis and your other doctor is degenerative doctor, so does not deal with scoliosis patients

Is this a valid statement? Please I need to know if that is an important consideration. I am assuming that everyone here has scoliosis so did everyone had surgery by an scoliosis surgeon?

Gardenia: I cannot speak for any surgeons except the 2 that I contacted: Drs. Hart and Hu. Both said that they are specialists in "adult degenerative scoliosis". So, there are orthopedic surgeons that see adult people with degenerative changes in discs that cause scoliosis, like me.

Susan

Jjohnsonphd
07-29-2015, 05:11 PM
Hello Gardenia,

My advice is scoliosis specialist is the direction to focus on. It is a very specialized speciality for adults. I did an exhaustive search, was willing to go anywhere and found my surgeon in your backyard. Dr. Gregory Mundis of Scripps Hospital. He is literally going to change my life and everything from his training to his bedside manner is impeccable. I had an ALIF fusion of L5-S1 this June with him and will have my scoliosis fusion next June T3-L4. He is leading incredible research on adult surgery and has focused his career on scoliosis.

I had planned to consult with Dr. Garfin at UCSD as well and have heard great things about him but Dr. Mundis was the surgeon for me.

Good luck.

Jana

Tableone
07-29-2015, 11:56 PM
We can go back and forth about whether curves will progress after hardware removal, but as none of us are doctors and few studies have been done on this, none of us can really say. It's probably a very individual thing.
I can only state FOR MYSELF ONLY that:
1: I remain EXTREMELY HAPPY that I had the hardware removal surgery twenty years ago. I could feel the metal in my back all the time. Whenever I used any of my muscles, I could feel the metal contract against the muscle. Horrible feeling!
2: My curve has not progressed more than a few degrees if any since then.
3: A non-scoliosis - that is, ordinary spine surgeon, removed it. But, that was twenty years ago and the spinal surgeon roles were not as defined then as they are now.
4: Yes, the bone had grown over all the hardware and yes, it took 8 1/2 hours to get out; it had been in for ten years. I was in ICU for two days with a spinal catheter delivering pain meds directly to my spine, which worked great. After that I spent two months recovering before I went back to work. I did pool therapy and worked hard to get back in shape so I could go back to work.
5: I asked Dr. Serena Hu about hardware removal after fusion to sacrum, and she stated yes, I could get it out after two years. She didn't give me any warnings about it although maybe she should have. I also asked two other Scoliosis surgeons and they both stated that they only did it if there was pain involved. No one said anything about the possibility of my lumbar curve progressing, or the thoracic surve above progressing. Maybe this is because we are talking about a T2- Sacrum fusion only, and maybe this is different than a hardware removal for long fusions. I would actually like to know whether there is any specific data on hardware removal for those of us who were previously fused and THEN were fused to the sacrum.
Thank you.

moonglow
07-30-2015, 03:13 PM
I agree with above poster. I need emotional support from those who had Scoli surgery cause it's so different from other surgeries and yes some information but except for studies the info is someone's personal opinion not fact which not right on a patient forum? Also who is Linda and Ed? They work at medical schools, right? I think I have seen this said. What they do there? Do they see patients or what? If I wasn't in so much pain, I would become a nurse on a Scoliosis ward. I think it's too bad there is no one working with patients who has Scoliosis although I read somewhere there is a girl with Scoli surgery who is an operating room nurse for a Scoli doctor. Maybe if i get better I could become a medical assistant and work for a Scoli doctor and check Scoli patients in. At least then I could say I've had this surgery so I get your pain. Or I hope you feel better soon. No one in any office I've been to recently seems to say this anymore to patients.

mabeckoff
07-30-2015, 04:39 PM
I am sorry that you feel that way about doctors staff. The office staff at UCI is amazing. They are always saying that they hope you feel better or that this surgery works. When I call with a question, they always ask how I am feeling.

Even in NC, with the surgeon that messed my back up , his office staff was the same way.

gardenia
07-30-2015, 07:27 PM
Hello Gardenia,

My advice is scoliosis specialist is the direction to focus on. It is a very specialized speciality for adults. I did an exhaustive search, was willing to go anywhere and found my surgeon in your backyard. Dr. Gregory Mundis of Scripps Hospital. He is literally going to change my life and everything from his training to his bedside manner is impeccable. I had an ALIF fusion of L5-S1 this June with him and will have my scoliosis fusion next June T3-L4. He is leading incredible research on adult surgery and has focused his career on scoliosis.

I had planned to consult with Dr. Garfin at UCSD as well and have heard great things about him but Dr. Mundis was the surgeon for me.

Good luck.

Jana

Hi Jena:
I have consultations by both. Dr Mundis for my Pre Fusion but because of this first years in practice 3 years ago, I did not want to go with him and went with Dr Bridwell after. I have to agree that his bedside manners were the greatest and I just loved him. Dr. Bridwell had the experience but not the loving caring but I needed a plumber not a nanny so he did my fusion. But after 2 years and pain started in other manners, I went to see Dr Garfin who recommended removal. I went back to Dr Bridwell who was agaist it until at least the 3 years mark. I totally forgot about Dr. Mundis

Dr Garfin is also another great giant but similar to Dr Bridwell. Both were sure of their knowledge and are tops in their fields which means more 'my way is better'. I might go back to Dr Mundis for an arbitration.

Thank you so very much and good luck with your sugery.
This is where the young blood brings need clean opinions and little self centerness ready to consider other techniques. He was also trained under another dinosaur famous in the field Dr, A...(something)

gardenia
07-30-2015, 07:40 PM
Gardinia

The decision to remove hardware is not an easy decision......going back in there and dealing with bone overgrowth like Linda mentioned and scar tissue is not something to take lightly. Scar tissue can really cause problems....Remove your rods and you will re-curve in time. It almost defeats the main purpose of having scoliosis surgery to begin with. Karen Ocker posted about this years ago as it happened to her....I miss her posts

So glad they have the meds balanced out for you.....this being a challenge especially if undiagnosed comorbidities are present. I’ve seen this happen.....”Oh guess what, you have this now, and your on the wrong meds”. (Both of these cases were undiagnosed diabetics) and who knows what else.....

and it does make you wonder. And it’s a blessing when things are working.

Thanks for letting us know...

Ed

All you said is right however having my meds balance is great but am I going to become an addict? Now I am OK but will I be needing more in the future? Yes, the patch is great supplemented with Norco is very comfortable living. I am gaining weight which is nothing too great, I am seeing a cardiologist because of my lack of chest cavity is crushing my left lungs and lately my left foot was swollen and an XRAY showed a large dark area supposedly the heart but too large to be one. My left lunch has always pushing on my left lung and respiration has been difficult.

What a mess! Lots of times, when stretching/resting my back my vertebrea not fused would crack with rotation noise. Likely comes with the upper curve not included in the fusion.

Thanks, my friend.

LindaRacine
07-30-2015, 08:34 PM
I am a researcher in a very busy complex spine center, and I do talk to patients every day. I am also fused from T4-S1. So, although I'm certain I'm not the only one in the world, I have a rather unique understanding of the subject of scoliosis surgery.

I'm sorry you're offended, but I don't understand it. I am not trying to scare people away from any type of treatment. Do you not think patients should have all the information they need to make informed decisions?

For the record, if I thought my implants were causing my pain, and my surgeon agreed, I'd have my implants out in a heartbeat. I posted the information about implant removal because I was asked about it.

Ed is not a medical professional, and I've never seen him infer that he was. He is simply a patient who has been involved in this forum for a very long time, and who helps people out with information whenever he can.

--Linda

moonglow
07-31-2015, 12:54 AM
I am sorry that you feel that way about doctors staff. The office staff at UCI is amazing. They are always saying that they hope you feel better or that this surgery works. When I call with a question, they always ask how I am feeling.

Even in NC, with the surgeon that messed my back up , his office staff was the same way.

Maybeck:
I'm happy that you feel you have nice doctor's office staff. However I was talking about my own doctors, not yours. In my old health system, they were trained to say that they were sorry you were going through this. It was nice even the phone bank people said it. But now it's been a log time since anyone said that to me except the MRI girl was nice and one medical assistant of my pain doc is very nice. I would still like to be a medical assistant as I think you move around a lot and don't sit at a desk that much. This might be good work for those with Scoliosis surgery. If there are any medical assistants on this forum please let me know. Linda if you are spinal researcher do you write papers and stuff on Pubmed we can read it?

titaniumed
07-31-2015, 01:37 AM
I'm actually starting to feel very offended by the post's I have read over the last few weeks regarding hardware removal. None have been posted by a medical doctor but most have been geared to scare those who have gone through Hardware removal. I want to stress my hardware removal was due to a very serious infection that spreaded through my spinal cord. Having self proclaimed experts stating ignorant comments about my future is very offensive. @Ed, hardware removal does not mean you will curve again. Yes Linda has posted studies involving some people. Those people have not had their hardware in even half as long as either me or the other girl Tableone who I have followed very closely. I joined this forum for support and I have received nothing but disputes on everything my doctor has told me. I'm starting to feel this is a very bad place for someone who is truly looking for support.

Dixie, Its not so much scaring as it is “informing” that the decision is critical. Critical decisions need plenty of thought, and multiple opinions help, and one doctor can be wrong and so can a group of doctors. I am only swinging the axe to prove a point. We are only human.

I was wrong in saying that it “will” happen, sort of like saying that throwing a cigarette out the car window will set the woods on fire. I guess it doesn’t always happen.

My post had to do with Gardinia’s “elective” decision on her implant removal in which she has or had that choice. I didn’t know that you had an infection, (Or Lori) and I’m so sorry that this had to happen.....I feel for you guys, you didn’t have a choice. Its one of the things that I or we worry about in having such a monumental procedure.....I am not a medical professional and I know that you don’t want to see posted studies, but I have seen the words “Inevitable” used in studies. Sort of like the prostate cancer stats in males over 55. Maybe that isn’t inevitable, but the stats on this are bleak. I try not to worry about all of this but I’m not offended, just informed. We need to know, but not anticipate.

Many of us don’t have a choice.....and I also didn’t, so I do know and feel what that is like. If I read and don’t post, I feel the vibes and think about you guys...

I think that Gardinia made a good choice in reviewing her situation with Dr B. There are specific reasons why he felt the way he did.

We re-model all our lives.....this is basic knowledge. When and why might not be known, and scolis can maintain shape for long periods of time.....but one thing that matters is age.

Karen Ocker like Suzie Bee mentioned, was a cast scoliosis patient (without implants) that was done by Dr Cobb around 1958. Its one case, but she did re-curve at some point, we don’t know when, the most logical conclusion would be that it happened in her elder years. She is a medical professional and has posted extremely valuable information here....her posts on ALIF complications had me thinking and understanding.....after I was having gall complications after my scoliosis surgeries. It was truly support in the fact that it might have been a warning, but it was an education process. If something happens to me, at least I have an idea....

Who am I? I sit at the table and try to contribute something of value if at all possible. I try to offer some sort of support and or emotional support which is hard being a male in a female dominated forum, and internet communication lacks in the communication process. Maybe some day we can all meet up at an arranged meeting and meet one another.....

I have changed my views and learned a lot about scoliosis by reading thousands of threads and posts here......I think that this forum is important for us and that all the posters here contribute.....Even the alternative posters like Flerc who constantly look for non-surgical answers (smiley face) Its hard for us who have suffered and gave up to pain, did surgical procedures, to look back at what we did for decades, battling this damned disease.....

We do have an older group here......and some have really have had a long road at the scoliosis table. This testimony makes people think about our hardships, and it does act as a catalyst for knowledge, and understanding the disease or affliction.

There was no forum available many years ago, and we all had to suffer silently........that was hard, remember?

I hope you can control your pain somehow......I do understand how frustrating it can be.....

I also really appreciate Linda’s moderation here.....

Ed

titaniumed
07-31-2015, 03:11 AM
am I going to become an addict?

Thanks for the appreciation Gardinia...

Becoming an addict will be up to you. Your doctor “should” provide support in the direction YOU wish to take.....

If you are comfortable and can stay comfortable, that’s a good thing. If you are not, tell your doctor then change should be attempted.

My neighbor was taking 38 meds per day for years......She moved down to California, did a doctor switch and is now on 4 meds and doing fantastic. This is why I say “support”. Her doctor did not support her when she was my neighbor, and collected the percs from the drug companies. Are we an overmedicated America? In her case, by 34.

If they know what 1 drug does, that’s great. If they know what 2 drugs taken together does, that’s incredible. How about 38? What do you call that? Complicated?

(I’m not a medical professional, I just wonder a lot)

I cant continue for a few days because I’m going camping in the high Sierras in the morning and chances are I will not have internet connectivity.

Ed

gardenia
07-31-2015, 12:59 PM
Dr Bridwell, said NO.
Dr Garfin said YES (you can look at his speech in one of his conferences and he explains why)

I decided to wait a little longer as my pain is being controlled by the patches. I happen to know my body and work with my meds closely. One can even call me a hypochondriac but actually I am aware of every change in my body instead of ignoring the pain, changes, aches, reactions...

Dr. Bridwell scared me enough about my lower back collapsing if I removed the hardware and said that 'if' he thought that I could be a good candidate, he would re-work T11 that did no fuse and now fractured T10 plus T9 & T8.

The IF is from getting terribly ill with the inflamation of esonophils in my digestive tract that required Prednisone (slows or destroys fusion?) and now I am continually taking 4 vials daily of Cromolin with water that seems to keep everything under control.

Now, there has been a couple of episodes that the patch Fentamyl that did not seem to work and my walking hips were in angry pain that I swear I would consider removing the bottom anchor screws.

About the debates that seem to be floating around ready to explode, I too, when I was 12-14 that the doctor recommended fixing of the curve with resting 6 monts in a cast in bed, operating to put in springs, then 6 months on a cast again then a revision in a couple or years to re stretch the curve. But, then he said unless you aspire to go into a beauty contest, then skip it. You will be fine. I was fine until 35 years old after giving birth to a 8 8oz baby girl then 4 years later with another. After both, I was limited with carrying weight and pain was quite constant but I was also travelling international to South America almost 2-3 times every 6 weeks. Lugging the luggage was hard and later paid the price.

I come to this forum to express my experience 1) to unload 2) share and find that others also have the same 3) find to find sound advise or alternatives. Everyone has an opinion, Nobody should take advise from this forum literally, must consider your own situation. I appreciate all points of view and this is a great forum.

OH, BTW I was never in a beauty contest... but my life was a great success. Have a super great husband with 2 marvelous daughters both about to complete their PhD and am retired happily thanks for my life of hard work, good planning, and great opportunities granted by those above us directing our destinies.

LindaRacine
07-31-2015, 10:02 PM
Apparently your studies just don't apply to all. It is my understanding you are the moderator ,therefore you are just here to make sure the rules of the forum are upheld.

Unless it's a case study, studies NEVER apply to all.

And, are you joking that I'm just here as a moderator?

LindaRacine
07-31-2015, 10:03 PM
Maybeck:
I'm happy that you feel you have nice doctor's office staff. However I was talking about my own doctors, not yours. In my old health system, they were trained to say that they were sorry you were going through this. It was nice even the phone bank people said it. But now it's been a log time since anyone said that to me except the MRI girl was nice and one medical assistant of my pain doc is very nice. I would still like to be a medical assistant as I think you move around a lot and don't sit at a desk that much. This might be good work for those with Scoliosis surgery. If there are any medical assistants on this forum please let me know. Linda if you are spinal researcher do you write papers and stuff on Pubmed we can read it?

Yes, though I've worked on dozens of papers, I'm only an author on one. Search Pubmed for proximal junctional kyphosis and racine.

LindaRacine
07-31-2015, 10:11 PM
Oh yes and to you Linda, yes I believe patient's most certainly should have all the information necessary to make an informed decision, just not from someone who doesn't have a medical degree and is just researching along like the rest of us.

So, when you encourage someone to have their implants removed, that's an opinion. And, when I post a study showing that some people have had their curves increase after they have their implants removed, that's medical advice?

I have no idea why you dislike me so much, but nothing you say will change what I say. I may not have a medical degree but I know far more about scoliosis than you'll ever know. My advice to you is to get over it. If not, please stop addressing me altogether.

My philosophy (and you'll see this in thousands of my posts) is to give patients all the information I can about their condition. I almost never ENCOURAGE anyone to have or not have a procedure. I never want to be in the position of encouraging someone to do something that turns out to be a bad decision.

LindaRacine
07-31-2015, 10:30 PM
EYou and Linda were posting with such certainty that all people with hardware removal will revert back, but neither of you had hardware removal.

Would you please point us all to the place where I said that all people with hardware removal will revert back?

Chihuahua Mama
08-01-2015, 09:53 AM
I don't come here for medical advice such as the type you and Linda were posting. I come here for support and to share experiences. Such as : how do you manage to do this or is there a certain way you handle doing that? How was an outcome to a certain procedure and could you tell me your personal experience? I think it's fair to post what you have been through and why something perhaps bad happened to you. Those are the posts that are informative. For example If you have an instrumentation failure that's the type of thing we all need to know about. You and Linda were posting with such certainty that all people with hardware removal will revert back, but neither of you had hardware removal. .......... Oh yes and to you Linda, yes I believe patient's most certainly should have all the information necessary to make an informed decision, just not from someone who doesn't have a medical degree and is just researching along like the rest of us.

Dixiesmommie: Here is how I approached my scoliosis surgery T-10-L4: I used the internet to find the best scoliosis surgeons in So Cal. Plus I had the benefit of my daughter who was in sales at Medtronics and had been in many operating rooms offering their wares and helping surgeons with those new pedicle screws and other hardware. I interviewed 5 surgeons all with great credentials. I took notes as to what each one said and looked into their background as much as I could. Then I found this FANTASTIC forum. It was so informative, reading others experiences, what could happen, got lots of information and most of all SUPPORT. The friends I made in '08 even got together and sent me a HUGE vase of flowers delivered to my front door just before surgery. I love the people in this forum.

I need to tell you, in my not so humble opinion, that Linda Racine is a great and informative moderator who checks in and WORKS this forum about every day, along with her other life responsibilities, and she is truly a researcher. No, she's not a doctor, and no apparently she didn't have removal. Ed is the biggest cheerleader (even if he's a guy!) I know and is always upbeat and positive - no Debbie Downer. I'm defending them because they offer so much to this forum, truly care about people and have plenty of research, life experience, and forum review of posts, that they kindly post as "information".

I'm offended that they are being attacked by you. If I could choose the best "bedside manner" it would be SusieBee. If I could choose the best positive, upbeat person, it would be Ed. If I could choose the most informed, it would be Linda Racine.

After 7 years I now need a full PSO (all my hardware removed) and go thru a larger surgery than the one I had before. I will have hardware from T2 to the sacrum with iliac screws, an 11 hour surgery. Frankly I'm terrified about the life changes that involves so I returned to this forum for information, thoughts, advice (yes), and some moral support. These people didn't leave the forum after a few months after their surgeries (as I did, shame on me) and I intend to continue to participate in whatever way I can. Further the idea of iliac screw removal was something I wanted to read.

Please understand that Linda and Ed aren't trying to "run the forum" or be "scoliosis surgeons" - they are simply caring people who have stayed and helped many. You also have stayed with the forum and I recall many posts from you while I was active in '08 that were helpful and informative.

We are here to SUPPORT, SHARE INFORMATION AS WE KNOW IT, and console those who are emotionally fragile about these massive procedures. So to sum it all up - you of all people shouldn't be dissing Linda and Ed. They help. And to stir up arguments that they aren't informed enough for your taste, then just disregard their posts. It's like changing the TV channel if you don't like the show - and it messes with the good stuff here on this forum.

Susan

moonglow
08-01-2015, 05:02 PM
I am confused as to this forum. I thought it was for patients run by patients, but now I'm told it is run by a spinal researcher? That's fine with me, and I understand that the researcher is also a patient, but please make that clear to us at the top border of the website or something. This will avoid confusion in future. I do not understand when the moderator says : "And are you joking when you say I am only here as a moderator?" I thought she WAS the moderator? I've seen lots come here for emotional support and get lots of UNASKED for opinions full of medical stuff from Linda moderator or Ed, who posts on the revision forum even though he does not need a revision? This is not how a patient forum is supposed to be! I think they are over-doing it. For the record, any thread is supposed to be about the person who started the thread and should offer them support. Many people have been intimidated by all the medical advice here and now feel they have to ask permission to take a pill or have a surgery. This is a shame.

Pooka1
08-01-2015, 07:44 PM
Hi. Because this area deals with adults who can do whatever they want and there are no innocent children involved, I actually don't have a strong opinion. But I just wanted to make a suggestion because certain issues are coming up here that are the same as on the parts of the forum dealing with kids and I can try to help clarify some things maybe. I think there are some misunderstandings brewing.

I don't know how long you have been reading but Linda Racine is FAR AND AWAY the most knowledgeable person on this forum about scoliosis. This is in part from her own surgery and revision but mainly from her work in a research group of deformity surgeons. There are countless times when she has offered to ask a surgeon friend about advice for someone struggling on the forum. There are countless times I have said I hope Linda comments as she is the only person who has any chance of coming within a nautical mile of the answers to some questions here. In my opinion, having someone on the forum with experienced surgeons essentially in their pocket is PRICELESS. The value of that can't be overstated.

Ti Ed is extremely intelligent, has been through a lot, and is capable of processing technical information. I think that last thing is something that is generally missing through no fault of the people who can't do it. Not everyone has this training. I sometimes fear for people who can't process technical information or who actively are at war with science. They are at a disadvantage when faced with a serious medical problem. People don't know what they don't know and get scared. I think people see this fear and try to help. But the people most scared seem to be least open to help. It isn't their fault but it seems to be the case. Science is the candle in this darkness but not everyone accepts that.

I think you have a point if you don't want any opinion other than the ones from your surgeons that you have talked to in person. You are an adult and that is a legitimate decision to wall off all other information.

Also, your feelings are always correct. Nobody should ever tell you how to feel.

Last, if anyone is making medical decisions against their surgeon's advice on the basis of a forum post them they shouldn't be on the forum in my opinion. That is not rational and they have bigger problems.

I'm sorry if this doesn't move the ball down the field but I wanted to at least try.

Good luck.

LindaRacine
08-01-2015, 09:42 PM
I am confused as to this forum. I thought it was for patients run by patients, but now I'm told it is run by a spinal researcher? That's fine with me, and I understand that the researcher is also a patient, but please make that clear to us at the top border of the website or something. This will avoid confusion in future. I do not understand when the moderator says : "And are you joking when you say I am only here as a moderator?" I thought she WAS the moderator? I've seen lots come here for emotional support and get lots of UNASKED for opinions full of medical stuff from Linda moderator or Ed, who posts on the revision forum even though he does not need a revision? This is not how a patient forum is supposed to be! I think they are over-doing it. For the record, any thread is supposed to be about the person who started the thread and should offer them support. Many people have been intimidated by all the medical advice here and now feel they have to ask permission to take a pill or have a surgery. This is a shame.

I was asked to moderate this forum by the National Scoliosis Foundation because of the thousands of hours I spent helping people on a previous listserv. I am not paid to do this, nor have I ever been paid, and I do not have any relationship to anyone who is paid by the National Scoliosis Foundation. And, I actually became a researcher after I started moderating here.

Your hatred of me is quite clear and I think is probably causing you to be blind to the truth. If you read my thousands of posts, you'll see that I almost never offer advice. When I respond to a question, I respond with the information I know because of the research I've done. You might want to pick any random thread, and look at all the people who encourage someone to have one treatment or the other. It's funny that you only single out Ed and I. I only encourage people when they specifically ask for encouragement. Quoting published research is not encouragement, although it can be used that way. It is giving someone all the information they need to make an informed decision. Pick almost any thread here and you'll find someone encouraging other people to have this treatment or that treatment, to use this professional or not that professional. You're apparently confusing those other people with Ed and myself.

By the way, no one with any authority in this forum EVER said that this forum was strictly for support. That comes from your imagination. Actually, the original idea was to make this a place where patients could get correct information and to make sure that a bunch of misinformation was NOT disseminated. I'm glad that people support one another here, but that's not the main goal. There are plenty of other forums around the internet meant only for support. If you only want positive support for everything you do, you'll be much happier elsewhere.

LindaRacine
08-01-2015, 11:10 PM
You specifically told me after hardware removal microscopic changes occur. according to an MD that is not always the case. That is not correct or accurate information. The MD said " that was like telling a cancer patient who just finished chemo that their cancer will return". Linda you also asked a girl for her ex rays so you could determine her problem. I swore I as done communicating with you on this thread, but I see you consistently doing this sort of thing. people have written to me all day about your comment about how I don't know as much as you and never will. you have no idea what I know or who I know, so please take a professional stance and moderate in an appropriate manner. I do not dislike you, grow up and be professional!

So, only MDs can read a radiograph?

Please reread m posts that you mentioned above (but did not quote). I never said that bone always progresses microscopically after implant removal. What I stated (see below) came from David Bradford, MD, who is just as much an MD as your surgeon. And, by the way, where's your research that shows that curves don't progress after implant removal?

Stop making it up as you go along, and stop the attacks. I'm happy to stop responding, but am not just going to sit here while you make stuff up about me.


Hi....

If you're solidly fused (and there's no way to know that for certain), removing all of the implants shouldn't have any immediate effect. If any part of the fusion isn't solid, you'd probably know within a month or two. Even if you are solidly fused, removing the implants may (will?) lead to a very gradual recurving of the spine.


No, the thought is that there are a large number of microscopic breakdowns. The progression will be anything but fast (unless there are areas of non-union), but it will be steady.

Pooka1
08-02-2015, 06:18 AM
So, only MDs can read a radiograph?

Good point.

Chiros read radiographs. Given that, anyone can read them FULL STOP.

Pooka1
08-02-2015, 09:52 AM
Linda, I have searched all over the site and can not find the option to deactivate my account, is there an obvious way to do it? You have made this such a hostile environment For so many of us who are suffering and looking for support. The only option I can find is to email Mr.OBrien. Is that how we deactivate our account through him?

Why can't you just stop reading and posting? What is the point of deactivating the account?

Just curious.

mabeckoff
08-02-2015, 10:06 AM
I do not want to get into this discussion but I want to support both Linda and Ed. They have been both such wealth of information and knowledge for me at many times times since 2010 that I do not know what I would have done without them.

Irina
08-02-2015, 10:51 AM
Why can't you just stop reading and posting? What is the point of deactivating the account?

Just curious.

Good point, Sharon. I was thinking the same...Sadly, this forum turned into Real Housewives of NJ show. Enough drama already.

JenniferG
08-02-2015, 06:04 PM
I for one have benefited enormously from this forum. I have only ever received the most helpful advice and appreciate especially, both Linda and Ed for their input and efforts over the years. I don't understand the complaints at all. None of us is forced to do anything suggested here, it's up to us, as adults to decide. Loads of people love this forum for the advice and support it offers. Thank you Linda and Ed and the many others who helped me get through my surgery and recovery.

Pooka1
08-02-2015, 07:16 PM
I am not a patient but only a parent of two patients. I know shear fear can get in the way of the pursuit of high quality information and reasoned discourse. I think some parents who are otherwise rational nevertheless have been driven completely around the bend by their child's diagnosis. I just want to throw something out there for what it is worth...

Despite my best efforts to take in information from the surgeon about my daughters, and despite being an experienced scientific researcher (albeit in a completely different field), I can say that I can barely follow what is being said most of the time. I am always exquisitely aware that this is not my field and I have not mastered this in any sense. Then there are the arm-chair biochemists who are not contributing much but just confusing other lay people. I can usually spot those because they are banging up against general science which I can comment on. Also, these posts seem like they have parachuted down from Neptune... no relation to anything being said. The criticism of Linda and Ti Ed also fall in this category. The fact case is the fact case and while no emotion is wrong, emotions can cloud the fact case.

Most eye-opening for me was hearing the plain English of the surgeon, concluding it must mean something, and then later learning it means something totally different.

What has been most valuable for me about the forum is a check on what I think I heard and what I think I know. In many cases, my conclusion was wrong. When posted material here seems to conflict with what people think they understand from their surgeon, I think folks might consider NOT that their surgeon is wrong but they they misunderstood their surgeon or the post. Had they understood the surgeon correctly, and had they understood the posts here correctly, maybe there is no disagreement at all.

Scoliosis treatments are complex and the chances of untrained people getting everything right the first time are low in my opinion. Reminding myself of that has been the clearest way forward in my journey to help my kids.

Just my opinion.

mabeckoff
08-02-2015, 07:37 PM
Should this be a new thread?

cathydrew
08-02-2015, 10:09 PM
I thank my lucky stars for Linda and Ed, and this forum. If you don't like/agree with what you read, fine. Move on then.

Linda, I wish you'd stop defending yourself <3 there are always going to be naysayers.

Please accept my sincere thanks for ALL YOU DO.

You too, Ed.

LindaRacine
08-02-2015, 11:00 PM
Should this be a new thread?

Good point Melissa.

Thanks for the support everyone, both publicly and through PM. Now, back to our regularly scheduled program.

titaniumed
08-02-2015, 11:42 PM
I am confused as to this forum. I thought it was for patients run by patients, but now I'm told it is run by a spinal researcher? That's fine with me, and I understand that the researcher is also a patient, but please make that clear to us at the top border of the website or something. This will avoid confusion in future. I do not understand when the moderator says : "And are you joking when you say I am only here as a moderator?" I thought she WAS the moderator? I've seen lots come here for emotional support and get lots of UNASKED for opinions full of medical stuff from Linda moderator or Ed, who posts on the revision forum even though he does not need a revision? This is not how a patient forum is supposed to be! I think they are over-doing it. For the record, any thread is supposed to be about the person who started the thread and should offer them support. Many people have been intimidated by all the medical advice here and now feel they have to ask permission to take a pill or have a surgery. This is a shame.

Moonglow, I’m so sorry your are so confused.....

This whole scoliosis business is a very confusing thing and that’s why I post. After 40 years of battling scoliosis till it almost killed me, I think that all my trials and interests in the subject warrant some discussion, and its nice to be informed. It’s a shame that some posters will post “I was unaware, or I didn’t know” and this is something that bothers me. Maybe I was just lucky that I had my timing right and that my scoliosis decisions all panned out well.....I really feel for those that are in pain, and for those that need revision surgery. I wouldn’t want to be BLIND in this regard, and read all the revision posts here, since it is my business. Show me the proof that I won’t need a revision and I will stop posting in the revision section.

As far as taking pills is concerned, YES, you should ask for permission to take a pill. Lets hope it’s the right decision and that you do have a good doctor that knows what he is doing. If there are millions of people out there that are so concerned about what they eat, why shouldn’t we be that way when taking medications? Fine print is there for a reason, and doctors don’t explain all of that to patients. I have taken a fair amount of meds, some of them being blacklisted now....so yes, I ask questions.

As far as having surgery is concerned, for those that have the time and a choice to learn and at least be aware of what happens good and bad, its worth an ear without being defensive. Support is about giving assistance. If I say you will burn your hand on the stove, that is support, not a shame.

Linda works at UCSF which is probably the best hospital in the world......I don’t think that it needs to be announced at the top of the website, all you have to do is be active and you would know instead of coming here and posting irrational posts......

Ed

titaniumed
08-03-2015, 12:00 AM
A sincere thanks to all the believers.......

Ed

mabeckoff
08-03-2015, 12:38 AM
Thank you Ed for what you have done for me

Melissa

jackieg412
08-03-2015, 12:53 AM
Thanks to all who have helped me . I just had my fifth revision surgery. The last one was unusual and I welcome all info as we don't know what's next. Ed has been funny and a wonderful source of info that can help ask more questions to my medical team. Awhile back I spoke to him on the phone. He is understanding and kind. We learn from each other and use what we need.
Let's be kind to one another. There is enough injustice in our world.

Jamie1955
08-05-2015, 07:57 PM
I'm not sure yet how to quote on a thread, but there is a question on this one asking if only MD's can read an ex ray. The answer to that is YES, they are radiologists. My ortho surgeon reads them too, But of coarse he is an MD. His assistant is never permitted to interpret them to me before he reads them. Gosh! I wish they would tell me what's going on before the doctor comes in.

titaniumed
08-05-2015, 09:33 PM
I'm not sure yet how to quote on a thread, but there is a question on this one asking if only MD's can read an ex ray. The answer to that is YES, they are radiologists. My ortho surgeon reads them too, But of coarse he is an MD. His assistant is never permitted to interpret them to me before he reads them. Gosh! I wish they would tell me what's going on before the doctor comes in.

Jamie

I see you are new, welcome to the forum!

For quoting, use the quote button on the lower right. It starts a new box, just add your reply below it, then preview to make sure your are happy with it.

For a new thread, select area you want to post in from the "forum" button, then select new thread in the upper left area.

Ed

Jamie1955
08-05-2015, 10:51 PM
Jamie I see you are new, welcome to the forum! For quoting, use the quote button on the lower right. It starts a new box, just add your reply below it, then preview to make sure your are happy with it. For a new thread, select area you want to post in from the "forum" button, then select new thread in the upper left area. Ed thanks Mr. Ed, I think I figured it out. Thanks for explaining.