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**Susie*Bee** · 10-02-2014, 12:12 PM

Susan - so sorry to hear about your problems!!! I certainly remember you very well and thought you had disappeared because you had gone on to do well. Bummer. Also about the move. I spent the first 25 years of my life in northern CA but have lived in northwestern Indiana now since 1976. Just wait until winter if this is your first year... I had my surgery at Rush, but my surgeon, although still active in the teaching area, is solely practicing at Shriner's now. I have his partner as my doctor now, Dr. Christopher DeWald. You will see his picture on the wall when you are there. His practice is all scoli related also. Their offices are all in the same place. I have heard good things about Dr. An, so I am sure you are in good hands.

I understand about your need to be near your granddaughter! How exciting and what a beautiful addition to a family! She will make up for the change in environment. Take time for the adjustment and try to find the good things around you. Although there are many sights I miss in California (my husband was from southern CA so I have been there a lot, two of his brothers live in Venice and W. Hollywood, and his family is out in Ridgecrest (east of Bakersfield, in the high desert) and have a cabin near Bishop, I grew up north of Sacramento and we went to Humboldt State University way up north in the Redwoods on the coast, 80 miles south of the Oregon border. Yet I see and love much that Indiana offers. I do live in a rural area though. Take some side trips. Illinois is famous for much, so don't give up entirely -- and there are parks and museums right there in the city.

I have a grandson 1,000 miles away so we have to travel... and that is what we do. You take care-- and keep us up to date on how things are going with Dr. An. Hugs, Susie

**Chihuahua Mama** · 10-02-2014, 12:28 PM

Oh Susie Bee!! Hi my friend

I will take your advise about where I live now - you can't complain constantly and be happy, right? I did see Dr. DeWald on the website and he seems like a really competent surgeon. They may choose a different surgeon who specializes in deformities, who knows.

I hear IN is great!! They even have billboards on the 294 saying "Ill about Illinois? Try Indiana" it's funny. Plus the family my daughter married into is a huge, loving family - I lucked out, they have welcomed me as if I were a sister or cousin.

As I move through different consultations, I'll have to make a decision. I could just stay as I am, but I can't walk further than 100 yards without real discomfort, or stand longer than 3 minutes without something to hold on to. Plus I don't like looking like a walking question mark, ha ha!!

It's so good of you to respond! You were a real source of kind encouragement to me back then (as you are now) and I love ya for it! Still sewing?

Oh hearing you mention Bishop, Ridgecrest (I know the area), and several other cities just makes my heart ache but my life is here now so better to make friends and move on. NW Indiana is close! We're almost neighbors

**Susie*Bee** · 10-02-2014, 01:45 PM

Loved hearing back from you! Yes, you need to get yourself taken care of. Life sounds miserable right now. And yes, time to move on. Forgot to say I had a niece who lived in Santa Monica until she moved to San Diego a few years ago. She got married in that church in SM where they shot Father of the Bride. It was just beautiful -- it was at Christmas time. And so much fun for all of us to leave the snow and cold! (BIG smile!) Also family in Escondido - Dr. Bronner's Magic Soaps! As far as sewing goes-- am about to make a quilted/appliqued Christmas stocking for newest addition, a granddaughter born last February. I also have two grandsons, 1 week apart, just started kindergarten.

So glad to hear you are in a good supportive family. That will be super when/if the revision takes place, and it certainly sounds like you need it.

**Chihuahua Mama** · 10-02-2014, 07:47 PM

Well, I just returned from my first consult. The surgeon was very nice; he said he could do my surgery but his hospitals weren't equipped for the complexity. Apparently I'm in the upper 95 percentile of complicated spine surgery and I required a hospital and surgeon of "rare-ified air". Wow, that makes me feel great. I need to be fused to sacrum (illiac screws), all hardware redone, go up to at least T4 and possible THREE osteotomies. Hello, can you imagine "this procedure can paralize you or cause death" paperwork?

So he gave me the names of the 3 best he knew of in Chicago (and he said Chicago had great spine surgeons - yay, go Chicago!) so I'm off on another quest.

Dammit, I should have gone with Dr. Pashman at Cedars who wanted to fuse to the sacrum in the first place and I wouldn't be facing this. Don't anyone go to Dr. Michael Kropf unless you have have something simple done! (He's now at Cedars too). He failed me miserably. I'm considering a 'thank you' card.

**danicaf** · 10-03-2014, 09:07 PM

Originally posted by Chihuahua Mama View Post

Well, I just returned from my first consult. The surgeon was very nice; he said he could do my surgery but his hospitals weren't equipped for the complexity. Apparently I'm in the upper 95 percentile of complicated spine surgery and I required a hospital and surgeon of "rare-ified air". Wow, that makes me feel great. I need to be fused to sacrum (illiac screws), all hardware redone, go up to at least T4 and possible THREE osteotomies. Hello, can you imagine "this procedure can paralize you or cause death" paperwork?!

So he gave me the names of the 3 best he knew of in Chicago (and he said Chicago had great spine surgeons - yay, go Chicago!) so I'm off on another quest.

Dammit, I should have gone with Dr. Pashman at Cedars who wanted to fuse to the sacrum in the first place and I wouldn't be facing this. Don't anyone go to Dr. Michael Kropf unless you have have something simple done! (He's now at Cedars too). He failed me miserably. I'm considering a 'thank you' card.

Susan:

Did I see "Yay, go Chicago?" I told you would learn to like it here...o.k., it'll be a slow process, but I'm keeping my hopes up and I won't mention it again until Spring (which by the way usually arrives in late May, quickly followed by hot and humid weather in June)!

If you don't mind me asking..who did your doctor say were the three best spine surgeons?

Diane

**Tableone** · 10-05-2014, 12:20 AM

Hello and so sorry to hear that you have to have such a massive revision operation. I wasn't here in 2008, so I'm not quite clear on the details. You had surgery in 2008 and now all the instrumentation has to be taken out and your old fusion broken up? What exactly did the first surgeon do wrong? Was it just the levels of fusion that were wrong or the way he corrected it? Or something else? BTW, thanks for sharing his name so we can avoid him. Again, I am so sorry that you are going through this.

**titaniumed** · 10-05-2014, 12:43 AM

Hi Susan

Yes, its been a few years now....

Poor Chicago......You will have to do the walking tour of Newark, NJ at night and then re-post about Chicago again. He he Or, take the �A� train through Harlem in 1978 back when there was a felony committed every 5 minutes 7-24. Been there, done that. In the dictionary, that should be added under the word �stress�.

I�m also sorry about having to do a revision. It�s the one thing I wanted was one stop shopping even though I had no choice on fusing to the Pelvis. Everybody gets all jumpy about that subject matter, and I�m good with it. Squatting is something you get good at, that�s for sure. You need to find somebody adept at revisions on adults for sure.

Ed

**Susie*Bee** · 10-05-2014, 07:32 AM

Susan -- it all sounds overwhelming, I am sure. MAJOR surgery. I think several of us had osteotomies with our first surgery. At least I did - two of them. So I wouldn't sweat that part that much. Plus I think they always have to paint the blackest/bleakest picture of the possible scenarios of the surgery so you are aware of the possibilities when going into it. Maybe it depends on the surgeon. I know I had my all my things in order and letters written to my girls and said good-bye to my husband as they rolled me away "just in case". Still, I felt at peace with the whole thing. I also felt great confidence with my doctor. And I remember, rather drowsily, being awakened part way through the surgery to be asked to move my feet a little, etc., and thought, "I am still here". Then back to nothiness. You have a new future to look forward to -- one where you can stand tall again and play better with your grandchild. Look at all the positives and enjoy life. There are good times to come! You just need to get through the rough time ahead first. But you've been there before, and some say revisions aren't as bad as first-time surgery. You can let us know. (smile) Hugs!

**Chihuahua Mama** · 10-23-2014, 09:58 PM

Hi Titantiumed!!

Good to hear from you Ed!! Gosh, I have forgotten how good all the people here are and the support I received. I sure need it again, because I'm scared!

I med with Purnendo Gupta, MD, a deformity revision specialist. I was utterly impressed. Smaller hospital (Weiss) but he has pretty much a team and almost a floor devoted to his patients. I saw Xrays of a woman who was similar to me and she was kind enough to call me (she's one year recovered). I'm going to call her back with a list of all my questions because at the time we chatted, I wasn't as prepared as I am now.

Frankly, my excitement of being "fixed" has turned into reality; now remembering how hard recovery is and how long it takes. Basically, it will be a single 10+ hr surgery, all hardware removed, several osteotomies (sp) to "open me up" and then the illiac screws in the pelvis all the way up to T3 for a whole new fusion. All will be done in posterior position.

The other patient I spoke with shared alot about rehab and that she said she still has to use those handle thingies to dress, she has to 'roll' in and out of bed (how does a person roll into bed???) and that after one year she still doesn't feel quite recovered. She gets around fine now but feels the hardware while laying flat in bed. I have more questions for her but Oh Wow, I remember now how HARD it is to recover from surgery and this one will be more complicated and have more of an effect on my life. If I don't have the surgery, I'll be in a wheelchair for sure. I want the ability to WALK down a street, stand in a line for 4 or 5 mins without pain and not look deformed. A few weeks ago one outspoken lady in her eighties saw me and said I looked like a walking question mark. Wow - i know she may have been close to dementia to say such a thing, but that sort of comment sticks with you!

I have a compression fracture just above my hardware now (no wonder I ache). I'm alone and will have to have someone come in to help a few hours a day which I think medicare will pay for if Dr orders it. My daughter is way too busy to care for me in any way - of course she'll probably be over every day for a bit, but she has a family to care for.

I'm probably babbling but I have so much on my mind now. I see Dr. DeWald at Rush on Dec. 9th and he's a bit of a rock star there; but so is Dr. Gupta. They are the two surgeons for this difficult of a surgery here in Chicago. I'm told it is a biggie on the scale of revisions top 5%. As a funny "ha ha", I mentioned to Dr. Gupta that I had fantasies of flying to St. Louis to have Dr. Lenke do my surgery and it turns out they are good friends and work together frequently! So, I feel Gupta is a good man for the job.

Sigh. Naturally it's me that the original surgery didn't work. In retrospect, I should have gone with Dr. Pashman at Cedars - he wanted to fuse to the sacrum and I was afraid of those big ole screws in the pelvis. I recall him saying "do you want to do this surgery once or twice?" Boy, was he right. Instead I went with Michael Kropf (whom I do not recommend except for smaller fusions). Dr. Kropf is also at Cedars now but at the time of my surgery he was in Santa Monica.

It's funny - I saw the Xray of the woman I spoke to on the phone and I was seriously amazed at the precision of the pedical screws and placement - they were so exact! Mine are all over the place; off to the right or left and there's clearly almost a collapsed vertebrae just above L1. I think any good spine surgeon would know the wear and tear on that last disc was just asking too much of it, so now I have to do a more difficult surgery with a longer recovery. I just want to be straight, be able to walk and stand. The trade off is I have a huge recovery to get through and recovery is so hard!! And truthfully, this surgery is more dangerous.

I think I'm babbling, there's just so much to think about and I won't decide on a surgeon until I see DeWald on Dec. 9th. So, all I do is worry.

Thanks for the responses guys, I've been so busy lately with doctors, and tests I haven't thought to come back and post. I need you guys! And maybe I can support those who are doing this the first time.

thanks for being here!!

Susan

**Chihuahua Mama** · 10-23-2014, 11:21 PM

Originally posted by danicaf View Post

Susan:

Did I see "Yay, go Chicago?" I told you would learn to like it here...o.k., it'll be a slow process, but I'm keeping my hopes up and I won't mention it again until Spring (which by the way usually arrives in late May, quickly followed by hot and humid weather in June)!

If you don't mind me asking..who did your doctor say were the three best spine surgeons?

Diane

Diane,

I'm truly working on it!! I'm looking for a church so I can make some friends. If I keep yearning for Cali and fresh fruit and strawberry fields and the ocean and mountains and the desert and.....OMG I need to stop.

It is not a pretty state, but it's where I am so I'm trying to focus on the people. Hopefully, once I'm done with my surgery I can go to some of the places I only hear about. Fortunately, my daughter's in-laws are an enormous family that has welcomed me as if I were one of their own - so I focus on the good stuff.

Now if people would stop trying to kill me on the roads, I'd be super happy!! Ha Ha!

Oh, the surgeons were Dr. An (but he won't do revisions), Dr. Chris DeWald and Dr. Purnendo Gupta. More on DeWald after I meet him.

P.S. The Bears suck and who cares about Hockey. Every other person around wears a jersey around here, I swear. Okay, that was a bit mean.......

**titaniumed** · 10-23-2014, 11:27 PM

Ok, What did Dr Gupta say?

Did he say get this fixed? or can you wait? The question mark comment doesn�t sound all that great you know. Any extreme leaning can�t be good. I�m afraid you will throw up your x-rays and have us fall of our chairs.

Your timing is all up to you.....but if I was in this situation, I would want to get it repaired. PJK and kyphotic pulling has been the hot topic here lately with Susan�s situation, and well, you don�t want it getting any worse.......Pedicle screws don�t do well in osteoporotic bone.

I don�t know how you would log roll into bed? I do a swan dive off a spring board.....I�ve got the technique down. LOL (Tonight�s joke)

I don�t have to log roll anymore and I can simply bend over just like any un-fused person and lift a 50# box. Sounds hard to believe but its true.
No-body can tell I have a full fusion unless I�m hurting.....my neck is trashed and my hips and knees are shot from skiing hard all these years.

One of the locals out here had a PJK half way up. I went down for dinner and she was hanging in there till 8PM then the pain on her face came out, and we know exactly what that is like....Anyway she was extended up high by my surgeon and straightened up but didn�t need osteotomies.....You realize that these entail precision cuts to re-shape your spine.....and it will hurt. Any time they cut and reshape bone, it hurts....You going to have to put the big daddy pants on for this one....If you do an anterior you will have an ileus, that�s pretty much guaranteed.

Sometimes pedicle screws on x-rays look very funky. It�s a radiology optics thing, and is very strange seeing this. They can look as if they miss or breech, but they are fine. The proof is in mulitple x-rays, with slightly different views.

Be sure to let us know how things pan out....

Ed

**Susie*Bee** · 10-24-2014, 08:19 AM

Susan (and others) For some reason her name won't come to me at the moment, but the lady who was so reluctant to have surgery for quite awhile and then did-- and was then so glad, from Chicago, had hers from Dr. Gupta -- but it was at U of Chicago Hospital. Who can help me with her name. We corresponded a lot! She did not like my doctor (Dr.H) because he wouldn't come right out and say one way or the other about the need for surgery because he left it up to you for the decision making based on the information he gave you. Anyway, she really liked him. Dr. DeWald is top-notch also, although I see him as my post-op doctor as he was my surgeon's former partner after Dr. H went solely to Shriner's.

Ed -- I always logroll and it's second nature. In fact, I've been told it would be much healthier on backs if everyone did. I really don't even think about it. It is not a biggie. We could look for a previous thread or start a new one -- who logrolls??? And if you use a sock aid or other device, that also is no biggie. Those things are small potatoes compared to looking like a question mark. Prioritize the things in your life. What things are worth a trade off? As for the osteotomies -- perhaps that is one reason it took me longer to recover, but I had two osteotomies and lamenectomies at L2/L3 and L3/L4. That is where my lateral listhesis was. I really have extremely good posture and no one would realize I have scoliosis.(I don't think you can ever say you no longer have it -- you just have had surgery to correct it...) I walk well and look good and Susan, you will too. Yes, at one year post-op I was still having some problems (as in not fully recovered, but by two and three years I was doing so much better. Some of us just take a longer time to recover. Don't judge things by how that lady was doing. She hasn't gotten "there" yet. Take heart. It's just another adventure that will lead you to a better life. Hugs from an old friend, Susie

**Chihuahua Mama** · 10-25-2014, 04:04 PM

Ed and Susie

Ok, Ed, that was the joke of the day! Frankly, I pictured just that...a running jump, then a side-twist so I land flat in bed (ouch!).

Susie, it's funny you mention Dr. Gupta being at the University. Apparently at some point someone wanted him to give up his work at Shriners; which he would not do. That made me think all the more of him, as we all know how important those doctors who donate their time at Shriners are. So, he simply packed up his entire team and went. (I hope I'm not sharing too much here). He is the 'rock star' at Weiss and the woman I spoke with over the phone raved over the nursing staff staff there, which is so important. Because I will have less support here than when I was in Cali (as in no son or daughter to babysit me in my room 24/7) that type of nursing staff is important.

I don't know how much more osteotomies hurt than the whole thing (I'd rather not think about it). I've been fixating on illiac screws instead and scared the bejesus out of myself watching video's on you tube so I've stopped that. All I know is placement is critical.

Just as soon as I see Dr. DeWald at Rush, I need to move forward. Every morning there is pain down my right leg and now it's in my left leg too - that's the S1/L5 joint for sure. I hobble around holding on to door knobs for 30 minutes each morning til the pain goes away. I'm just tired of it all and know I'm going to do the surgery now so once I pick the man for the job, I'm off and running I think. I will need so many tests because I did have a cardiac episode during the 08 surgery so there's that, plus all the mri's, cat scans, etc. Tiring just thinking about it.

It feels good to have made a decision, still I never thought I'd be looking at sacrum to T3 but I got through the first one and I still have my trusy little Chachi the Chihuahua to keep me company. I remember he would NOT get off the bed except to eat and go outdoors after my first surgery. Thank goodness he's pad trained!

And thanks to all who've posted positive vibes!

**CHRIS WBS** · 10-25-2014, 06:40 PM

Dr. Purnendu Gupta

Hi,

I have not posted anything here for the past few years but occasionally check in to read what�s new. I saw your post and wanted to comment. I actually remember you from �08. I believe we had our surgeries around the same time. Dr. Gupta did my surgery in June 2008 when I was 59. I had a huge stiff thoracolumbar curve approaching 80 degrees; and he did a superb job of safely straightening and stabilizing my spine in a 12-hour surgery. My surgery was all posterior and included laminectomies and osteotomies, and I am fused from T3 to the sacrum. My recovery was uneventful, and I returned to full-time work four months following my surgery. I�m 65 now, retired and living an active lifestyle that includes traveling. I have not experienced any problems since my surgery and will be forever grateful to Dr. Gupta for what he was able to do for me. As far as having pelvic screws and a fusion to the sacrum, I don�t even think about it anymore. For me, it�s just not a big deal. And I remember how terrified I was at the thought of having such a long fusion. Anyway, just wanted you to know that I had a very positive outcome with Dr. Gupta and found him to be very kind and compassionate besides a great surgeon. So sorry to read that you have to go through this all over again. Good luck to you with whatever decision you make.

Chris

BTW, I LOVE Chicago.

Announcement

Hi to all my old friends from '08, Chihuahua Mama needs revision surgery

Hi to all my old friends from '08, Chihuahua Mama needs revision surgery

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