It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Back Problems Message Board

  • I NEED HELP...anyone know about 10 level fusions?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-12-2005, 09:20 PM   #1
    FriarJen83
    Senior Member
    (female)
     
    Join Date: Jun 2003
    Location: Pittsburgh, PA
    Posts: 100
    FriarJen83 HB User
    Unhappy I NEED HELP...anyone know about 10 level fusions?

    Hi everyone,
    I really need help. I am desperate. I have no idea what to do anymore. Yesterday I went to Johns Hopkins Hospital and saw a neurosurgeon there. I am extremely frustrated and angry with my life and my back and the pain. I feel like I cannot take even one more single day of this pain. I am 21 years old for crying out loud! And unable to work, had to drop out of school a few months ago. My entire life is on hold while I search for the answer to my back problems. So I finally get in to see this guy, and he spends 5 minutes with me before sending me to an orthopedic surgeon. some guy who I never heard of who was rude and uncaring. Anyway...they took more X rays and told me what I already know. My spine is basically collapsed in my thoracic spine at like 4 levels. The discs are collapsed and the vertebrae are fractured. He told me that the one and only option for me is to have a fusion of the whole thoracic spine...10 or more levels. He gave it only a 65% chance that it would even help with the pain. He told me that I need to get off painkillers, that I'm 21 and I can't live the rest of my life on painkillers or I'll be tolerant to everything by the time I'm 30. I am not even functional while on painkillers, let alone without them, I would want to die. I do already.
    What do I do????? I really do not want to have such a major and horrible surgery, but I CANNOT live with the pain anymore. Should I take the chance that it will help and just do it? I mean, if it's my only hope, I guess I should do it, right? I have already done everything else under the sun to help with the pain. PT, injections, chiro, all of it.
    I guess my question is, has anyone had a 10 or more level fusion? Has it helped? What can't you do now? Do you regret it? Has it affected the levels near it? Anything you could tell me I would really appreciate as I try to figure this mess out. sorry this is so long!
    thank you for any replies! God bless you all,
    ~Jen

     
    Sponsors Lightbulb
       
    Old 05-12-2005, 10:10 PM   #2
    taape
    Senior Veteran
    (female)
     
    Join Date: Jan 2005
    Location: California
    Posts: 2,704
    taape HB Usertaape HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    Hi,
    Sounds like you've got a complicated situation. One thing I would do is get about 2 more opinions from surgeons. Fusion with that many levels is so major and you want to make sure what all your optinos are especially since you have your whole life ahead of you. I wonder if you can get disc replacement at some of the worse levels and not do the rest or something like that. Let us know what the surgeon says. Don't give up yet.

     
    Old 05-12-2005, 10:29 PM   #3
    Quietcook
    Inactive
    (female)
     
    Join Date: Dec 2004
    Posts: 1,291
    Quietcook HB UserQuietcook HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    Jen,

    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.

     
    Old 05-13-2005, 01:24 AM   #4
    Bionicwan
    Senior Veteran
    (female)
     
    Join Date: Apr 2004
    Location: Fl
    Posts: 571
    Bionicwan HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    FriarJen

    SO VERY glad you found this board. YOU and all of us will see to it, that you not only WILL NOT give up, but do EVERYTHING you can to get your life back

    YOU ARE NOT ALONE!

    There are many of us here with all different issues, conditions, pain & fear.
    You'll hear surgical success stories and surgical disasters. But we all have so many things in common. The best of which is if you read a post from anyone of us, you'll know we're NOT giving up, today anyway

    QuietCook has been where you are and is "Living Proof" that there IS life afer a 10 level fusion! You and QC have far more severe and serious issues, decisions, and battles than many of us could imagine.....But we all lean on each other for support. We also recieve tons of info, 1st hand experiences, thoughts & opinions, tears and humor

    I agree, in that you should immediately gather ALL of your records. films.....whatever is there. Then as soon as you can, I strongly urge you to get 2 or 3 more opinions with ONLY a Dr who SPECIALIZES in spines and also has a fellowship. Orth or Neuro, totally your choice. I have used both and will personally, only use a NS from here on out.

    How are you managing your pain? I do hope your lucky enough to have someone seeing that your as comfortable as possible.

    Welcome again,
    we're so glad your here!

    BionicWitch

     
    Old 05-13-2005, 01:56 PM   #5
    FriarJen83
    Senior Member
    (female)
     
    Join Date: Jun 2003
    Location: Pittsburgh, PA
    Posts: 100
    FriarJen83 HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    Hey,
    I just wanted to say thanks for all the replies, the help, and the encouraging words, especially Quietcook, that was really helpful information. I really do feel like giving up at this point but your words and advice have given me a little more hope. I will take your advice and start searching for a spine specialist immediately. I'm frustrated that every dr. I see doesn't think anything through for himself, they all just read other's reports and say the exact same thing. I want to know exactly what is causing my pain but it doesn't seem that will ever happen. I am in pain management now getting more ESI's, facet joint injections and probably a discogram soon. I am on pain medicine but my pain is not NEARLY under control and they will not increase it. When I asked the surgeon about the levels, he said that it would have to be all or nothing. He said if he only did a few levels the others would collapse as well. I also have a kyphosis - mind you, only 5 degrees greater than a normal curve,in the same area as all the other mess, but according to him straightening that out as well has something to do with it.
    Bionicwitch, why would you rather see a NS than an ortho, just out of curiosity? Anyway, thanks again. Hope you all have a great day...
    ~Jen

     
    Old 05-13-2005, 02:25 PM   #6
    karie45
    Junior Member
     
    Join Date: Jan 2002
    Location: Aurora, Illinois U.S.A.
    Posts: 42
    karie45 HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    I am so sorry to hear about you ordeal, at only 21! My thoughts and prayers are with you. I have down days too, and I am 31 but I always think that there are people out there that are worse off than me and that always helps. If you need anything just ask, I am willing to talk.

    Just one question, what did you do or how did you injure your back?

    Take Care,
    Karie

     
    Old 05-14-2005, 11:40 AM   #7
    FriarJen83
    Senior Member
    (female)
     
    Join Date: Jun 2003
    Location: Pittsburgh, PA
    Posts: 100
    FriarJen83 HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    Hi Karie,
    To answer your question, I never did have an injury or accident to hurt my back. 3 years ago when I was 18 I just woke up in severe pain; I went to the doctor the same day and that was when I started finding out the many things wrong in my spine. First they told me arthritis and bone spurs, then compression fractures from T6-T8, then I found out L3-4 and L4-5 and were herniated, causing nerve damage, then Scheurmann's Disease, and finally the collapse of the discs in the thoracic area. 3 years later things just continue to get worse. Every doctor I have ever seen has been shocked that I have all these things wrong and no reason or cause for any of it. It's one of the most frustrating things to me that none of it should have ever happened. I guess I will never know why. I just hope that nothing else goes wrong in there; I couldn't handle any more.
    Well, I wish you all the best with your pain as well; you are quite young for this too, how did you injure your back? have a great day!
    ~Jen

     
    Old 05-15-2005, 03:34 AM   #8
    Bionicwan
    Senior Veteran
    (female)
     
    Join Date: Apr 2004
    Location: Fl
    Posts: 571
    Bionicwan HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    [QUOTE=FriarJen83]

    Bionicwitch, why would you rather see a NS than an ortho, just out of curiosity? Anyway, thanks again. Hope you all have a great day...
    ~Jen[/QUOTE]

    Jen,

    This is just my personal preference.
    My 1st two surgeries and care for 5yrs was with an Ortho who speacialized in spines.

    Both of those surgeries were unsucessful.

    I now have several others issues I did not have prior my surgeries. One of which is severe permanent nerve damage and I have quite a bit of scar tissue also.
    I just feel that a NS is more capable of dealing with me now. And is better equiped to deal with me for my revision surgery that is needed.

    There are MANY on this board who have found "the right Dr" and MANY are Ortho docs ~ that's great if they specialize in spines and the pt feels totally comfortable with them!

    I was comfortable with my Ortho, but am more confident now, with my NS.

    It's really a personal preference. EITHER are capable of doing routine back surgeries and procedures, and both are capable of doing exstensive and more complicated cases.

    QuietCook for example, 10 levels fused!!!!!
    Thankfully she has found "Her Right Dr" and he's an Ortho.

    anyway,....hope you find the Dr who's right for you and hopefully can help you as much as possible

    BW

     
    Old 05-15-2005, 03:46 AM   #9
    walkers
    Newbie
    (male)
     
    Join Date: May 2005
    Posts: 8
    walkers HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    I'm not an expert on the back stuff but hey, i did NOT have it easy at age 15!

    Pain pain pain... ahhh ahh couldnt sleep bla bla

    80 degree curve in my spine i had scoliosis, was squishing my lung, do or die. 80 degrees corrected in london by the best surgeon i could ever thank...

    2 titanium rods... lots of screws and bolts... i'll try and get those xray images up one day...


    alot of my back is fused... yea cut my ribs deflate the right lung, rmove discs from the front of my spine then just mix em up like they are for icecream or something and then make me NOT MOVE ONCE otherwise i would be paralysedfor life.... then for 4 days i was on a bed... then boom anohter 6 - 7 hours op all in total about half a day of operations (2 ops)

    yea it hurt yea its a *****... do the op... your life will be worth living.. yea it had it in 2001, but it does not mean that they can't help you... if you want to have a good life take the surgery and goodluck and i hope everything comes out ok for you!

     
    Old 05-18-2005, 08:54 AM   #10
    Quietcook
    Inactive
    (female)
     
    Join Date: Dec 2004
    Posts: 1,291
    Quietcook HB UserQuietcook HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    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.

     
    Old 05-19-2005, 01:56 PM   #11
    Mistina
    Senior Veteran
    (female)
     
    Join Date: Nov 2003
    Posts: 589
    Mistina HB User
    Re: I NEED HELP...anyone know about 10 level fusions?

    I haven't read all the post before this and I mainly lurk here but I do want to give my opinion very briefly and if you want to ask questions, feel free.
    I had a 12 level fusion at age 17 for scoliosis. I did completely fine after that. It was a breeze. Of course I was young and so are you so that's not a factor. I am now 30 and had a fusion at L4 L5 6 months ago. I had major debilitating problems and NO doctor would listen to me say, "I'm limited in every aspect of my life, I cannot live this way, something is seriously wrong aside from the disc "herniation" they were seeing".
    I ended up seeing multiple doctors with no help and falling further into depression and pain, oh the pain. I went to NYC to see Dr. Boachie-Adjei. He is a genius in my book. I searched for three years for answers and finally had to go see some major experts cause I was getting nowhere.
    Turns out that I needed a fusion desperately as my facet joints at this level were completely shot and causing all the problems, pain and immobility. It didn't show up on MRI. I feel so much better now, I feel I'm getting my life back and pray every day that I keep getting better after all I've been through.
    My moral to the story is..........don't settle for anything less. If you have to take a loan out to go see a top doc, do it. I'm not saying I'm out of debt but I"m soo glad I traveled to NYC for answers. Don't be afraid of a 10 + level fusion, these surgeons that specialize in this type of thing are very knowledgable. My 12 level fusion was difficult the first month or so but after that I was completely fine and so will you be. Just follow your heart when it comes to a doctor, your instincts will tell you.

    Good luck to you and God Bless.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    I need help deciding about fusion surgery splitter Back Problems 8 12-17-2005 08:21 PM
    Please help, I need info on anterior fusions cawcar Back Problems 9 09-05-2005 01:49 AM
    Not fused at 6 months post op NEED ADVICE MKP Back Problems 5 07-17-2005 06:41 PM
    I take HYDROS, SOMAS, & AMBIEN - I NEED HELP! Sarandipity Pain Management 11 07-16-2004 10:50 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is Off
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 02:11 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!