Newbie on deck! Hello!

[LynnMarie74]

Hello everyone...now that I figured out how to post my own thread Im ready to rock -n- roll!

1st of all, Im very happy that I ran into the web site. Ive been desparatly searching the web for any info I can on spinal fusion for Scoliosis & more so, for patient stories and back grounds. Here is a little on me: I was diagnosed at an early age....3rd or 4th grade I think...with a "minor" curve. I was sent home from school & was told to see a doctor. My mother took me and my doc confirmed that I did have a 10 degree curve, but it was nothing to woory about & sent me home w/some daily excersises to help prevent it from getting worse. I think i did them for ohhh, I dont know...maybe a week or 2 tops, and that was it.(I was 8 what did I care!?) It was forgotten about until my early 20's when I was pregant w/my son. After I had him, I started having lower back pain and at times, I would get stuck in a postion & would also have the pain shoot down my leg. I dealt with it for a few years til I remembered one day that I had a curve in my spine & wondered if maybe it got worse. I made a trip to a "bone cracker"...which was NOT a good experiance for me by the way....and received the news that I had progressed to 40 in my upper spine & 46 in my lower. I saw the Xray & freaked out! I didnt know a spine could do that! Yikes! Either way, he "treated" my symptoms, which become worse after this, and after a few months, I stopped going & saw a real back doctor. I was referred to an Orthopedic Doc who took more Xrays & bascially said I needed to watch it & that I should manage my pain w/exercise & meds. Tried Phys therapy and meds, no help or relief from either. I decided I didnt care for this Doc & saw another. We are in 2007 now.....I have more Xrays and now a MRI! Oh boy....now we are at 48 and 53..not good. I progressed 8 dergree in 7 years, which I was told is about the norm.(1 degree per year-ish) Doc says I should have spinal fusion surgery & says it may need to be fused into my sacrum. OUCH! That didnt sound to pleasant! He sends me to MN to see a specialist. I make the fun 9 hr trip to only be disappointed w/the surgeon. He was rude, had no bedside manners & said I shoud wait. I was upset & confused by this & cryed on the way home. Sooooo, get another opinion & end up w/My now Doc....Dr Clifford Tribus of Mad-town-aka Madison Wi. He was woonnnnnnderful & said I should not be wasting time & that if we act sooner, rather than later, he can salvage my L4/L5 for a litte more mobiltiy...knowing that later in life, that too would need to be fused. SIGN ME UP I said! That was a blessing to hear...that I didnt need to have rods, bolts & screws into my scacrum or whatever the heck they said. I pondered it over w/my husband & finally decided its now or never, so Im scheduled for the 14th of Jan 2009. Im already scared & anxious. Lots of questions.......

Does anyone have the same curve as me and/or have level of fusion I will have? L4 to T2 I believe is what he said?! Does that sound right...ughh I should know this, huh? Any pics to share? Advice? restrictions? Rollarcoasters? Bowling? Doing everyday things..Umm how did the surgery effect your "relationship" w/your significant other? ANything anyone can share would be appreciated!!

[JenniferG]

Although I won't be of much help to you Lynn, because I'm still waiting for my surgery, I just wanted to say, you've come to the right place. Folks here are only too happy to answer your questions honestly. I know when I arrived, I asked for the good, the bad and the ugly and got the lot! I still have a few questions these days but mainly I am just waiting but feel a lot better knowing what I now know.

All the very best for your surgery in January. You'll be well and truly "done" and I'll still be waiting...March 10, is mine. Some more helpful folks will be along shortly.

[sccrm08]

Lynn Marie,

I had T3 to L4 fused 17 months ago and I must say I do not regret having this done. My Dr. told me the same thing that his goal is to save L5 but I would most likely need another fusion in the future (5 to 20 years down the road) if I damaged the L5 disk. The only restrictions he gave me were no contact sports. I have been to the amusment park and I rode the rollar coasters and I must say I am not sure it is such a good idea. But my problem was holding my head up and I have also been fused C4 to C6 so this might of been why it was so hard for me. I hope this helps, good luck with your surgery.

[LisaMS]

Hi, Lynn Marie, and welcome to the Forum. It's been a life-saver for me. I've learned more from others on this site than all the medical professionals I've talked to!

I'm having surgery on Monday (a/p fusion, T-8 to L4 or L5). Mine's a c-shaped lumbar curve, which has progressed 14 degrees in 5 years. I'm not in terrible pain (but I do have some pain most of the time), and function well, including yoga. But I'm having it done to stop progression, and to get more room in my abdomen--it's getting very crowded, like being pregnant, and I'm a little short of breath. My surgeon told me (at my pre-op meeting Tuesday) that people often develop arthritis at the ends of the fusion because of all the extra strain on those joints. That usually doesn't happen for 10 years or more. If it happens, I might need to have one more vertebra fused at the top or bottom, wherever I'm having problems. But meantime, he says it's true that the earlier you fuse, the fewer vertebrae that you'll need to have fused, and the more mobility you'll have.

As for the intimacy question, I have yet to hear any clear answers on that. My surgeon said they have a booklet on that, but the nurse forgot to give it to me before we left. That's a worry for me too--it's such a good part of our marriage.

Best of luck to you. And welcome to the "Twisted Sister"-hood (and brotherhood).
Lisa

[debbei]

Lynn Marie,

I was fused T3 to L3 one month ago tomorrow and am still recovering, so I can't give you any input on things I can/cannot do yet. However, I cannot believe how quickly I am recovering. I wake up in the morning stiff, but nowhere as sore as I thought I would be. I am weaned off more than half the pain pills I was on when I came home, and never have that 'dopey' feeling from the pain meds. I can function and do some things around the house. I do have the full time help of my parents here for another month or so, but for example, yesterday, I baked a cake, mostly on my own. Of course my mom put it into and out of the oven, but I did everything else myself. And then she cleaned up I could get used to this kind of help. But my point is, I am able to do normal things around here prior to one month post-op. My curves were both 66 degrees, and progressing one degree or more per year, on average. I just couldn't have gone on like that for long without ending up in terrible shape. As far as 'relationship' with my husband, I'm still afraid to try. I tell him maybe in another month or so, I'm thinking that for me right now, I'm just afraid to try.

Try looking up all my posts since I joined in May. I asked many of your questions and had great responses. Your time until Jan will go quicker than you think. My biggest piece of advice--get as much fun packed into those 3 months as you can get!

Good luck, and feel free to ask any other questions.

[Qikdraw]

Lynn Marie,

I am fused T1-L4 and in the 25 years since my surgery it hasn't been bad. Mostly good really. You end up learning what you can do and can't pretty much by trial and error. Three years from the date of your surgery and you'll bend a certain way, and your back will tell you it doesn't like it. You just have to be aware after surgery that you have limits. But really those limits have no real effect on quality of life at all. If you're in pain now, and after surgery you're not, then you've improved.

As for your 'relationship'.

Here are a few links to previous postings about this.

Link 1
Link 2

My wife recently found a place that makes 'relationship' furniture, its soft, but also built to be able to hold a couple of bodies. I won't post the link as its an adult store and not suitable to link in the open. If you are interested you can PM me and I will send you the link.

Welcome to the forum by the way.

Brad

[trishthedish]

Hi, LM! Welcome...I found lots of great advice and support here. I am 6 months out from fusion T2-L2, and then a complication which made fusion to C1 necessary. I am back at work and all my exercise classes at the gym. I do get tired easily still and need to rest more often than before the surgery, but the pre-surgery pain is gone and that is soooo nice.

As for the intimacy part...my doc's PA told us that we could do whatever I felt like doing at about 3 months post op. So we did =)

If you want to see some of my before/after pics and hospital pics, visit my blog (link below) and click on the label "medical stuff". It's not all too pretty, but it's real.

Again, welcome! January is just around the corner and soon we'll be reading all about your recovery.
~Trish

[LynnMarie74]

Thanks!

Wow! that was quick! Thanks to all, especially on the intamacy issues. It is a big part of my realtionship w/my husband that Im not willing to give up yet...lol....so we have an agreement....get as much in as possible til the big day....yikes....I said that after a Halloween party, after a few beers....sounded good at the time! lol Either way,thanks again. I feel comfortable asking anything now that got past that!

Just thought of something else!I have a job that requires me to be at my desk all day typin' away on my computer. I do have to get up & walk around from time to time. How long will I need to be out of work...or whats the "average" I guess is the better question? My company has awesome bene's and I have up to 14 weeks full pay. Im assuming I will not need that much time away, but eh...if they're willing to pay!!

Oh, and by the way, Brad...thanks for the link to the other responces about the fun stuff. I will send you a message to get the info tothe web site you were talking about it. If there is a way to make it easier, hey, Im willing to give it a shot!!!

[debbei]

Lynn Marie,

I think you will probably want to use the whole 14 weeks. After all, you may be on the pain meds almost that long. My surgeon originally told me I'd need 4-6 months. I think I'll be more on the 4 month schedule at the rate I'm going now.

[LynnMarie74]

Really? Most of the postings and stuff Ive read on line said people were headed back to the grind at 6-8 weeks? Guess it depends on how complex the sugery is & how well you are feeling, right? But like I said before, if they are giving me 14 weeks, might as well take it! What level fusion did you have?

[debbei]

I had posterior only T3 to L3.

[Susie*Bee]

Hi Lynn Marie! Welcome from me too. I'm glad you found the forum! The length of time to recovery depends on many, many things-- some are hard to guess ahead of time. Length and extent of fusion/correction, age of individual, and a lot of other things factor in too. I think they tell most adults it will take at least 3 months, although sometimes I'm wrong, ha ha... It also depends on what type of work you are returning to and how your body has adjusted to the pain (and if you are still on pain meds or not). I know of many people who were able to ease back into their jobs-- starting with a few hours a day, part of the week, etc. Just food for thought. I think I could have maybe handled a desk job, at least part-time, at 3-4 months post-op. With my job I'm having a tough time, even though I "sat out a year", because I'm running around most of the time and hardly ever get a chance to sit down-- working as an elementary school librarian, including lunch and recess duties. But I'm still there, so I'm ok. Best wishes as you go into this. Susie

*Also-- that is my fusion length too-- T2-L4. But you are soooooo much younger than I am! It will be way different for you. That said, it is still a l-o-n-g fusion and will take a lot of adjusting to. You can see some pics if you click on the links in my signature.

[iluvmath!]

Lynn Marie,
Welcome to the forum!! My surgeon is Dr. Tribus in Madison as well!!! I had my first surgery in Milwaukee but the fusion failed so a second surgery was necessary. I originally just went to see Dr. Tribus as a second opinion but was extremely impressed by him as well. He is a very knowledgeable and skilled surgeon. He also has great bedside manner. He is the first doctor that I've ever been to that actually sat down and talked with me until all my questions were answered. He gave me all of the time that I needed. Anyway, I am almost 6 months post-op and couldn't be any happier. My stay at the UW hospital was much better than after first surgery too. Just wanted to let you know that you're making a great decision to go with Tribus! Let me know if you have any questions about the hospital!!

~Katie

[LynnMarie74]

Wow! Thats awesome to find someone w/the same Doc!!! I loved Dr Tribus & he is the reason Im not waiting any longer!! Im glad u had a good experiance there....it seems like a nice hospital too. I go on Jan 5th for my pre-op. What can u tell me abou that? My hubby cant go, so Im making my bff along! lol

[LynnMarie74]

Oh...and any one w/significant height increases?? If so how many inches did you gain? Im curious! And deformity correction? Would be nice not to look uneven anymore!