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Old 08-23-2007, 12:16 AM   #1
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L5/S1 Fusion for Spondylothesis. Help! I am so scared!

So I am 21 years old and in may of 2007 I got diagnosed with spondylothesis in L5/S1. Apparently I have isthemic (sp?) spondy. I guess I fractured my back when I was little and it healed weird and my vertebrae slipped. I was being treated by a very good back doctor. . we started with conservative treatment. . Physical therapy to strengthen core and a series of 2 cortisone shots that did absolutely nothing. Finally my pain has gotten so bad I have seriously thought about suicide. .then realized that is rediculous since there has to be some other option. The back pain turned into severe nerve pain radiating down into my legs and hips. I can't stand, sit, walk, etc for more than a few minutes. I learned my nerve is being crushed by my slipped vertebrae.

To make that long story short I finally told my mom I needed to see a surgeon. . Luckily one of her clients is a lung transplant specialist at cedars (world famous hospital here in los angeles) and he set me up with the director of the spine institute there. Tuesday I saw him and he basically told me what I was already fearing. . my disks were healthy and my slip was stable but every move I made was crushing my back. I learned I developed a sway back. . Now that I look, it completely shows in my posture. My sister thought I was just sticking out my belly. He told me surgery was a good option for me. I am so young he said it would be a quality of life issue. Nothing would fix it except surgery.

The surgery he does is simultanious anterior/posterior surgery. He said I do not have to donate bone from my hip. . he said "we have all these cool tricks". They do an incision in my belly. . remove my disk (i think) and insert bone. .flip me over and then insert a cage (or something) and some screws. It involves a FIVE day hospital stay!!!

So to get to the point. . I am petrified. June 13th I had arthoscopic ankle surgery and now I am facing back surgery! I understand this will most likely solve my problem. . he said life should be back to perfect after 6+ months. I am just so unbelievably scared. 21 yrs old seems so young to have back surgery. I have a very loving family that waited on me when I had ankle surgery but I feel like such a burden on them. . not to mention how depressed I got when I was helpless for just 7 weeks!

I don't know what I am asking for. . I guess I am just reaching out for support. No one gets it. . I am almost 4 years sober in AA and besides being scared for surgery, I am scared about being on pain killers for such a long time. Anything from anyone. please help!

-Kate

 
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Old 08-23-2007, 10:11 AM   #2
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

[COLOR="Navy"]Kate,

Welcome to the board. I have a three level fusion, front and back incision. Cages, like you are having, rods, pins, screws, the whole ball of wax. Take a deep breath, and exhale. You will come through this with flying colors. You have your youth on your side for one thing.....that helps with healing..and don't panic. It's a rough surgery, don't let anyone kid you..but you can get through it and you will heal. There is a sticky at the top of the board label post surgery tips that is a great read and will be a lot of help for you and or your family.

You will need alot of help after the surgery and healing time realisitically is 6 months. This is major surgery and it takes time for your body to repair itself and heal. One thing I would like you to think about. Your doctor will be giving your prescriptions for pain pills. He gives them to you for a reason. Your body needs to heal. It is easier for it to heal when it doesn't have to fight pain also. You won't get addicted to the pain pills, but they will help you heal and recover from the surgery. Taking the pills to help control the pain the way your doctor prescribes them will help you heal...try not to be too anxious about them. The pain can be pretty intense with this surgery.

You may or may not have the brace that Ossifer spoke of. Most back patients have a heavy elastic corset type of brace that has support type of stays in it. Some of us "lucky" ones get the special hard plastic puppies that are guaranteed to make you sweat in the cold of winter. It will depend on your doctor.

The 5 day stay in the hospital is common for the fusion. I'm sorry, but I didn't see how many level you are having fused. I started with 3, but am now fused from T9(which is the middle of my back) down to my sacrum). You will be able to drive again, probably not for a couple months. I think I was 12 weeks before I drove. BUt you can certainly go out for car rides as soon as you feel comfortable riding in cars. It will depend on how YOU feel. You will need to learn to pace yourself and listen to your body. IF you feel like you are pushing yourself, then back off....unfortunately, alot of us here are overachievers and would like to be back to normal and expect our backs to comply. What I have learned is that my back doesn't listen very well. In fact, it doesn't listen to me at all!

Make a list of questions to ask your doctor if you are anxious. Ask him how long he expects you to be out of commision?
How many of these surgeries does he do a year?
What is his success rate?
Does he expect you to have future problems?
What restrictions will you have?
What are the weight restrictions?
When will you start therapy?

All of us back folks here know that we can't do roller coasters any more, can't bowl, can't lift more than 8 lbs. right after surgery, can't do any BLT
(bending lifting twisting),can't ever lift more than 30 lbs max. EVER......

Hang in there I know that more folks will chime in...we are a noisy group who love to offer our advice.

welcome, you will do fine.......you have our support surounding you.......
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Old 08-23-2007, 12:07 PM   #3
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

Kate,

Hi dear. You have gotten some really good information here and I really can't add much. Like ibake&pray, I had the hard plastic brace May thru July! We will not talk about steat. Every doctor has a different opinion on whether a brace is required or not. Another point osssifer brought up, that is so infrequently discussed, is wiping yourself. My occupational therapist told me to get a pair of tongs and bend them in a bit of an arc (I couldn't get mine to bend so I don't think that is really necessary). I also got some cottonelle wipes to use after paper to make sure I had gotten clean. I hung a foil lined plastic bag from the raised commode so that I had a somewhat discrete place to place the cleaned tongs for future use.

I do not remember if ibake&pray told you about the stickies at the top of the page. There are a couple that are really important reads. The most important for you right now is the thread "Post Surgery Tips" and the other is "Less stress on your back around the house". Oh, buy the way I had a 3 level fusion 4/30/07. Good luck to you.

 
Old 08-23-2007, 01:29 PM   #4
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

Hi Kate,
I'm also 21 and in otherwise amazing shape. i had an L5 S1 fusion for Spondo on May 16th and have just hit the 3 month mark. I'm not going to lie it is tough but we are fortunate to have our youth to push us through! I'm still healing and doing some PT but it'll take a while to get to the fully recovered point. I strengthened my core as much as possible before hand and i didn't need to wear a brace after surgery. I was supposed to be in hospital for a week, but i went home the morning of the 4th! I honestly expected to be in bed for a while, but after a couple days of being out i was grocery shopping and almost off my pain meds. For me the withdrawls after the hardcore stuff sucked so just be careful with that! If you have any questions feel free to ask! GOOD LUCK you'll be fine!
Lauren

 
Old 08-23-2007, 01:57 PM   #5
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

[QUOTE=KTbear;3170487]

I don't know what I am asking for. . I guess I am just reaching out for support. No one gets it. . I am almost 4 years sober in AA and besides being scared for surgery, I am scared about being on pain killers for such a long time. Anything from anyone. please help!

-Kate[/QUOTE]

I, too, am 5 years sober, and have had to do pain meds for the better part of 2 years for my sciatic pain. It's funny... it's like your body gives you the choice of 1) either they get you high, or 2) they work on your pain, but you can't have both! I've had very few negative effects from the particular meds I am on (morphine sulfate, vicodin), though I've had bad reactions to a few (percocet... yeech!). But I've had NO urges to abuse them, and absolutely no feelings of wanting to abuse any of my former vices.

I know a lot of sober types try to tough it out on principle. My own feeling is
you do what you have to do to take care of the pain, and then, AFTER your surgery and recovery, you can deal with getting off the meds. Addiction to pain meds is a serious problem in this country, but, at the same time, they are lifesavers to people who really need them. I wonder sometimes how many suicides are caused by not medicating chronic pain.

Compared to quitting alcohol and cocaine, I found quitting morphine (the first time) to be really easy. I had to go back on it from the pain though, and, being a good little sober person, I tried toughing it out. OUCH! Forget it.

I wish you the best and let us know what happens. I'm facing a L5-S1 front/back fusion myself in 2 months!

-David

 
Old 08-30-2007, 03:47 PM   #6
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

HI there all. i am new to this site.
I have been diagnosed with Spondylothesis and require a L5/S1 fusion as i am in constant pain and have numbness and pins and needles down my right leg. i have been down the road of physio and other treatments but now my surgeon has told me i should have surgery while i am still quite young(36).
anyway, what i was wanting to ask is. after surgery can i expect to still be able to bend (as if to touch my toes) and be able to do sports such as golf and billiards or will surgery put an end to those type of things. sorry if this sounds silly but i have no idea of what lies ahead and i am very scared at the prospect of this surgery. any people out there who have been through this type of operation, i would be most grateful of your experiences. many thanks my fellow sufferers. lol.

 
Old 08-31-2007, 02:50 AM   #7
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

So I have a surgery date of October 8th set. I am doing combined anterior/posterior fusion. I have sooo many things to do before surgery. Get my house prepared and I think I am going to rent a hospital bed, especially since I do my college classes online. I can't believe how many doctor appts I have to make. Vascular surgeon (he helps with the anterior part), preop with my internist, getting my boyfriend and mom to each give me a unit of blood. This is all so nerve racking and overwhelming. No one I know has gone through anything like this. .I am so young (21), almost no one has even had back problems. Everyone is like, I'm sorry, that sounds rough. Its the worst to have no one that gets it! Like my original title said. I am so scared! 5 weeks and counting. . .

 
Old 08-31-2007, 05:38 AM   #8
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

Kate,

Sorry I didn't see your post earlier, but I have been moving my daughter into college which is a story in itself.

My daughter had congenital spondy, she was born with it. She did many of the treatments you did, except for her pediatric dr doesn't give shots to children. At the young age of 15 she had a two level fusion, L4 - S1 for grade II spondy and stenosis. It was sad to see such a young girl in pain daily.

Most posters have given you info about the recovery. As a mom I was terrified of putting a young teenage girl on narcotics. Well her dr guarenteed me that she wouldn't get hooked, which she didn't. She took lortab and was very lucky that she was off all narcotics at ten days. I think that is rare. She has a real problem that most narcotics make her nauseous. The morphine pump in the hospital made her itch. So she is very sensitve.

She had posterior, TLIF, performed by her pediatric ortho and his adult spine partner. She came home on the fifth day. The first two weeks were her roughest, mainly because we were trying to get the nausea under control. About the tenth day that stopped and she began on the up swing.

She followed her dr's orders to a tee. no bending and twisting, the lifting limit, and walk, walk, walk. As I've told other posters, we would mall walk daily and that began to cost me $$$. Her dr used titanium screws, rods and spacers during surgery. He used cadaver bone instead of bone from her hip. (That was kind of a mix up since I thought he was using hip bone, but she fused that's all that matters.) She did not have to wear a post surgery brace. Each dr is different with this. She did not have to go through physical therapy afterwards, she did prior to surgery. When she got clearance to take tub baths we would go to the Y and just walk in the pool. She loved that.

I didn't rent a hospital bed, but I did put a twin bed in our family room for a few months since at the beginning she was allowed to go up and down the stairs once a day. This just made it easier. She didn't have any restrictions about sitting. That didn't seem to bother her. She returned to high school full time 2 1/2 moths later at the end of summer vacation. BTW, she had her surgery on the first day of summer vacation. She had to donate three pints of her own blood prior to surgery just in case they needed it. Her dr did give it to her the day after surgery since we had it and some of her counts were down.

She is doing great. She is 26 months post op. Most restrictions are lifted. Her dr has told her to take care of her back and think smart. She really shouldn't ride amusement park rides and stuff like that. She has been horseback riding once since surgery. She went slalom water skiing again this summer. (We checked with her dr prior to doing these.) So she has been very lucky and is feeling great.

She must have a black cloud hanging over her. She was at her university two hours and missed a step coming down from a loft bed and broke her wrist. I was worried about her back, of course. They set the wrist. It was still unstable and she had surgery to have three pins inserted three days later. We keep orthopaedists busy!

Any questions just let me know. Best of luck. cas

Last edited by caszyman; 08-31-2007 at 01:36 PM.

 
Old 08-31-2007, 06:41 AM   #9
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

Hi Kate,
You've gotten some great answers to your post. I hope you'll be encouraged. Yes, this is a hard surgery and a long recovery, but lots of us have been there and gotten through it to tell the tale. You'll do fine! I had a 360 (ie, what you're having) last September. It took about 3 months to really turn the corner and feel like I was well on the road to recovery, about 5 months until I started feeling like I had a little energy. I hope you're taking a semester off from your studies. You really won't be in any shape to keep up for the first couple of months. You'll probably be able to get back into it by the spring semester.

Be as prepared ahead of time as you can. It will make a huge diffference! Will someone be available during the day to be with you, at least, in the same house? If not, make sure they leave you food and drink at your bedside. If you have bottle of drinks, such as bottled water or juices, make sure someone loosens the lids for you. Ask for non-childproof caps for your prescriptions if there aren't small kids around. Read that thread that was mentioned about "post surgery tips" at the top of the page. It's chock full of great tips that will be a help to you. My favorite tips: get a grabber tool! Spend the money to get a good one. It will be your best friend! And get some satin sheets (or cheap imitation). If you have a slippery bottom sheet and some slippery pjs, it will be so much easier to turn when you're in pain. For the same reason, put a plastic garbage bag in your car for the ride home, along with a zip lock bag in case you get nauseous. You can zip in the smell and mess and no one has to clean anything up.

Walking will be very important to your recovery. Walking increases blood flow to your spine, which is vital to getting bone growth going. Getting up and down from bed will be hard for a while, so everytime you get up to use the bathroom, you'll want to take advantage of already being up to spend some time walking, even if it's just pacing back and forth in your bedroom. Then lie back down and rest!

Come back and ask whatever questions you have. We'll try to help you. You're not alone! The people around you may not understand, but we sure do! Stick around. You'll get to know us well!

By the way, as your date gets closer, you're sure to feel some increased anxiety. Try to keep yourself as busy as you can. It will help to keep you from thinking about it too much. Get your Christmas shopping done! That'll keep you busy!

Blessings,
Emily

 
Old 09-04-2007, 03:04 AM   #10
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

I have about 5 more weeks before surgery and I am getting more and more anxious. I am slowly getting stuff together for surgery. I decided to just go ahead and get a new mattress. . the one I have now is very soft and squishy and hard to move around in and I havnt even had surgery yet! We were going to rent a hospital bed but my moms friend suggested just getting a firm mattress.

My mom is driving me nuts!!! She keeps going on about how I am 21 and the technology is getting better, etc, etc. She doesnt want me to have the 360 fusion bc she said by the time I need a revision surgery, technology will be great and it will be no big deal (if I just get the PILF, the doc said I will probably need a revision in about 5 years). I know she is just being a mom, but its driving me nuts!

I know this is an odd question, but, how is using the restroom post surgery? like ummm, wiping myself? I have a caring family, but asking someone to bathe me, help me use the restroom seems so terrible!

Thank you!!!

 
Old 09-04-2007, 04:18 AM   #11
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

KT,

I can understand your mom worrying. I actually did that with my daughter. I cancelled her first surgery a year prior. I just wasn't sure that was what should be done. But after watching her for another year in pain, after six months I knew we had to rebook surgery. Being concerned is what moms do. I still really worry about her back as she is now away at college. I still drive my daughter nuts. The book bag she was carrying was way too heavy for her last night as she left.

I was lucky that I have the summer off and was home with my daughter for the entire 2 1/2 months until we both went back to school. At the beginning I did help her with everything. She lost most of her modesty. Yes, I wiped her for a short period of time since she couldn't twist. I helped her shower for the first few weeks. We bought a shower chair and she would sit on that and I would hand her things. As the weeks went on everything became easier for her and she would begin doing more and more. Shaving her legs at first was impossible so I did that for her. I did put on shoes and socks for her for awhile too.

We found a regular twin bed in our family room helped her a lot. I had a mattress pad on it that I could pull and it would slide. That way I could help her log roll to turn herself the first few weeks. They will teach you how to log roll to move in the hospital. I did put something stable that she could put a little pressure on when trying to get to a standing position from the bed. cas

 
Old 09-04-2007, 04:35 AM   #12
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

Kate I had TLIF fusion for spondy and ddd last march. Mine has been a longtime problem since I was 19 and fighting surgery every since. It started out as disc problems, went to ddd, then final phases went into the spondy. I to got so depressed as you speak of and similar sounding pain.

It was a hard decision to have this surgery. Or maybe just accepting it. But, you have to look at your life, think of all you can't do. If you've tried every single other alternative....and if you have..I looked at it like this.

If this is my only chance at getting better, I have to take it. I am 37. I will tell you this is not an easy surgery to recover from its a mf. But, with the help of everyone here, it made it a zillion times better. I got a laptop the week before my surgery thank god.

Everyone here supported me through every step of the way and still does at five months post op.

I really don't know how others make it through it all without this support system cause the doctors sure leave alot to the imagination.

My surgery they used my hip bone, which I guess is like a whole other surgery and it was very pain ful. I guess from what I've read you have better chances of bone growth this way, but I thought it was because of my insurance. Either way its better now.

I am doing alot better than I was before the surgery. My advice is to think positive, go into it thinking the best, keep striving for recovery. You have to fight your way through this one. Walk walk walk, (after surgery) stay here and talk to everyone about all of your quesitons or concerns the whole way.

Hugs to you. vette

 
Old 09-04-2007, 05:32 AM   #13
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

[QUOTE=KTbear;3190769] She doesnt want me to have the 360 fusion bc she said by the time I need a revision surgery, technology will be great and it will be no big deal (if I just get the PILF, the doc said I will probably need a revision in about 5 years). I know she is just being a mom, but its driving me nuts!

I know this is an odd question, but, how is using the restroom post surgery? like ummm, wiping myself? I have a caring family, but asking someone to bathe me, help me use the restroom seems so terrible!

Thank you!!![/QUOTE]

The 360 is harder to recover from. You'll have two incisions, one in the front and one in the back, and they are more thorough in what they do inside, for lack of a better way to put it. But it has a higher success rate. I went for the 360 and had already started showing bone growth at only 6 weeks post op. I was completely fused by 6 months. If that's what they're suggesting, personally I would go for it.

As far as bathroom issues, no, that's not an odd question at all. There have been quite a few threads about this. I never needed any help in the bathroom at all. It was painful getting in there, painful sitting down, even more painful getting back up, but I did it by myself. Get a toilet riser if you can. I got a portable commode (which my insurance company provided) and set it right over the regular toilet. No one had to clean anything out, but it was higher and made it so much easier for me. Depending on your body build, you might find that you can reach in from the front to wipe the back. Those flushable wet wipes will make a big difference, too. Others have invented contraptions like long tongs that enabled them to reach for wiping. You'll be glad you asked and planned for this ahead of time!

Take care,
Emily

 
Old 09-10-2007, 09:40 PM   #14
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

I saw another doctor who said a 21 yr old should never have fusion surgery. . his idea was a back brace. He wants me to have a bone scan too? My mom is freaking out and apparently cannot sleept. She wanted me to ask you guys the story of people who have gotten bone scans and been in a brace. . if it helped, why it was done, etc? Probably anything would help my mom. . .She is so stressed out. Thank you!!

-KT

 
Old 09-11-2007, 07:11 AM   #15
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Re: L5/S1 Fusion for Spondylothesis. Help! I am so scared!

KT--Good luck on the 8th , I was also curious why your surgeon said if you go for the PILF you would need a revision in 5 years ? Curious because I have spondylolisthesis and had a PILF and been having problems fusing.

Being as young as you are don't worry you'll be fine . Better than you are now. Make sure after your healed to do core strengthing .


GOOD LUCK

 
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