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Jen, :wave:

So sorry to see that you've joined this club, and bless you, you are young to have this much of a problem. Glad to say though that they are not many of us with that many levels fused, although I am one - but I'm 59. I had 10 levels fused Dec 04, just 5 months ago. My levels evidently are different from yours. Mine are T-10 through S-3.

As I understand it from my doc, thoracic levels do not normally collapse, as that area does not bear weight. After all, it is our organs, and of course the lungs are full of air, so the weight just isn't there like the lumbar area which collapsed first for me. Now, I do have a few comments and recommendations, based on my experiences. I'm a veteran of 8 spine surgeries, four of which were fusion surgeries and I have dealt with temporary paralyzation. There's a big learning curve in my experiences. You can review old posts by searching for my log on but let me see if I can offer you some things to consider regarding your situation.

I understand 4 levels of thoracic collapsing to be fused, by why fuse 10 levels if the others have not collapsed? It's upsetting to me when I hear of patients getting to see doc who sound like they are from the dark ages, feeling they belong on a throne and treating patients like low life. Thankfully, not all docs are like that!

Understandably, that hospital is well known and probably have some great doc's, even though you evidently did not get to see one of them. Still, the institution does not the surgeon make, so here goes. You say you say a neurosurgeon and then ortho surgeon, but did not say that either was particularly a spine specialist. That, especially in your case is vital!!! If you don't know how to search the web for one in your area, post a note to quietcook or search for my posts about 3 weeks ago. I've given details before. Set you mind to the positive that you will search out information, the right doc, etc and make the best informed decision you can for you at this time. You are your own best advocate, and no one can do it better than you can. Keep a note pad handy and jot down questions you want to ask any doc you see. Keep them simple and short, but make notes of what you need to know in order to do the best for yourself. I always take a typed list of questions. My docs usually answers most without my note, but are willing to take the list and go over, but if most of answered, it is easier to me to grab out those not yet covered. A good doc does not rush you off and is more than willing to answer the questions and not pretend they are the ultimate word of what is to be done.

Spine specialist can be ortho or neuro (mine happens to be ortho) but it is vital that they have done a spine fellowship and that 90-100 percent of their surgeries are spine. All general ortho & neuro surgeons do surgeries on the spine, but when you have massive problems as we have, you want one who is dedicated to the spine, up on the lastest techniques and procedures and constantly going to new training. If they are doing arms, knees, shoulders, etc they can't be as informed on the spine - one human can specialist in only so much. We need them all, but you need a specialist!

Get any & all of your films, files, reports. You sign the film out and return them later. They are yours and you want a doc who can read them and not rely on reports, but you want them for your visits and for you to be informed. Get more than one opinion. After becoming paralyzed, I saw more than 9 specialist before selecting my doc. He believes in the patient being informed, he doesn't mind second opinions, he is willing to work with me to avoid surgery but willing to say when I'm delaying too much, explains things and even draws me diagrams of what is to be done, and bless him, even was gracious when I brought my elderly mom in last time so she could see the 2 rods, 18 big screws and more than 14 cages on the x-ray. She needed to understand why I cannot bend except at the hips. You want to find the best fit, the best skilled, and one willing to work for your best outcome. You will know when you find them.

Some I saw relied on reports and weren't willing for me to ask questions, some thought I shouldn't have an opinion - just do as they say, so I've made the round.

If you know from any previous events that you have a scar tissue problem, be sure to ask any surgeon if they will use Adcon-L or similar anti-scarring gel to inhibit the growth of internal scar tissue. It can save you from excessive nerve damage in coming months. Ask about PT and time frames. My doc gets me going IMMEDIATELY and it has been wonderful for my recovery. I came home with home health, doing simple little exercises immediately after surgery, but it keeps the muscles from atrophying and makes things easier in the long run. Ask if they will require a brace. Mine had me use a soft (due to other deformities) brace for support but does not believe in the hard shell unless with scoloiosis or other factors. He does not want the muscles to rely on the brace. Others do things differently, but you want to know what you are facing. Be sure to ask about pain meds. Some docs cut patients off in 2-6 weeks regardless of their progress, others like mine do not want you in pain. He says you cannot heal properly if you are tensed up in pain. I prefer non-narcotic, saving those for really bad times, but more later.

Ask if any of the collapsed area could be repaired with ADR (artifical disc replacements). They are now being done on people with fusions but only certain levels, dependent upon the differnt type of ADRs. You can search a lot on the web, especially going to the clinical trials and the FDA, along with some spine sites - one excellent one you will find that BionicWitch posted.

Okay, a biggie to research and ask about. If fusion is the route that you have to take, you want a doc who will use BMP-2 and your bone from the laminectomies they will do. My first fursion was pre-BMP and they had to take bone from the hip. That hurts more than the back pain and is a hard heal, plus bone alone takes twice as long to fuse and isn't as strong as with BMP. You want a doc who will use the BMP in/with cages and not place the sponges without cages. Due to BMP getting on areas it should not, the FDA has the mfg'r packaging together. My doc had to do the first BMP surgery anterior, having another surgeon open & remove my intestines then replace after his work. That was his being cautious due to BMP seepage in earlier trials and surgeries getting on nerves. That was good, but since then with my last 2 surgeries they could go posteriorly because they now have scopes for placing the cages & BMP to safeguard the nerves and other tissues. A spine specialist will be well trained in this and have done quite a number of surgeries with this technique by now. I was in a wreck and my first fusion broke, but BMP is like these beams made of chipped wood & glue, used in construction. BMP mixed with your ground bone is much stonger just like those beams.

Let me assure you that such a massive surgery is not a picnic, but depending on many factors, and at least you are young, recovery varies with individuals, the doc's instructions being followed, and PT. For this 10 level surgery (more than 12 hrs & a week in the hospital) the first three weeks were extremely bad, mainly due to muscle spasms in the lower back as the back no longer moved. Muscle relaxers and pain patches brought that under control and with the PT starting while in the hospital, at three months I was able to be out and doing many of my routine things again. I've mowed my acre yard with a push mower several times before finding someone to take over as the doc does not want me bouncing on the mower for a year. I've been out cleaning the gutters on the house, I'm maintaining and cleaning my house, and most importantly my pain level is extremely different than pre-surgery. There are days I am pain free - then there are moderate days and bad days, but the bad are nowhere near presurgery bad constant. I use a non-narcotic called ULTRAM for most of my pain. It is only addictive (according to warnings) if you have had a problem with other narcotic meds. I like it as minimal side effects especially not making me sleepy. Mostly though I use the Lidoderm pain patches 5 percent strength, which you wear 12 hrs & get up 24 hrs relief. Some days none, other I use up to 3, and if a bad day, add ultram. If I had a super bad day, the doc has given me strong narcotic meds.

Know it will be hard, especially after such a frustrating visit with the other docs, but keep in mind that there are those who can help you get back to a normal life. If I can get back being this active, at my age with lots of other health problems, you can too, when you find the best doc for you. Please, be sure to search in several sources, and check out their records through your states licensing database on the web. You might even consider traveling to another location if you don't find the right person in your location. I had to travel only 50 miles, but was willing to go to another state. That's a decision each person has to make.

Hope this helps you, and don't hesitate to post a thread for my attention if I can answer anything more for you. Be positive that you will find the best specialist, be positive that this can work, and know that with the right doctor you have a better than 65 percent chance at a much better life. May not be totally pain free, but you can certainly be a whole lot better and who knows, you might be pain free. You are young and likely in a lot better shape than this hard worked retiree.

Best wishes for great success.
Jen,

Don't know where you are located, but if you cannot find a spine specialist near you and are willing to travel, you can still find them on the web with the info posted. My miracle worker is located in Nashville, TN, in case you are near by. If you let people know the general vicinity you can commute to, most likely someone can give you names and recommendations or "stay away" warnings. The board is good for a lot of info.

Hope you are having success with your search and some less painful days.





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