Spinal fusion surgery?

[Deleted]

After my most recent MRI, the degeneration in my thoracic spine (middle of back) is getting worse and compressing my spinal cord in two different spots.  It explains why I walk all janky and have constant sciatic pain in both legs though...

Anyway, I'm meeting with another surgeon on Friday to go over my options, but last time they told me it was a matter of time until I had to get a fusion to 4 of the vertebrae in my back, meaning rods and screws and a scary surgery.  If the discs would calcify (if I don't take care of the issue now) I could become paralyzed and possibly lose bowel function.  FUCK.

Soooo, anyone have history with this?  Give me the good, the bad and the ugly.  Online people are saying it's either the worst or the best thing they've ever done.

Hold me, I'm scared (wilted)

[reginaphalange72]

I usually just lurk on ML, but wanted to post some support here. My best friend had L4/L5 fusion surgery about 4 years ago and had an extremely positive outcome. Feel free to PM me, and I can put you in touch with her. She's always happy to talk with people going through this.

[Elsa]

I have no advice, but hopefully meeting with the surgeon will allay some of your fears. Spine care has come SO freaking far in recent years. My sister had back surgery a few years ago and immediately felt a massive difference. I hope this fixes your pain!

[Marmee]

My mom had a similar surgery & had a very positive outcome. She was in her mid-60s and by the time she had surgery she was is such pain she could barely walk.

[Linie]

No stories, just hugs.

[Deleted]

My husband did not have that exact surgery but he did have spinal surgery with those risks. It worked and he is 100% right now with no side effects or issues. He had his surgery over 2 years ago.

I hope your appointment goes well and helps you feel better.

[JayhawkGirl]

My sister had this done and it was a godsend. She spent the two years prior in terrible pain, often bedridden and couldn't carry her kids.

The main negatives for her- She is somewhat achy with major weather changes and knows when she's slacking on core PT (at home).

[lizard1131]

DH had this done 7 years ago. It was the best thing that ever happened to him. The recovery was difficult, it took about 6 weeks.

[Deleted]

You guys are making me feel so much better!!  (heart)

Since it's in the thoracic area they will have to go in from the side, remove ribs and probably bone from my hip (to help the bones fuse together)

Here is the MRI image for anyone who likes this kind of stuff. The red arrows are where the discs are pushing on my spinal cord.

[Deleted]

Oh also, I have been at my job forever, so short term disability will pay for 25 days off of work. I think recovery will be 6 weeks (or more?), so that will definitely help!

[sugarbear]

I haven't had fusion, but I did have discs partially removed. It seemed that my odds were similar-- either really, really great or not so great. Totally different surgery, but I bring it up because I also scoured the internet and was discouraged by the feedback.

Turns out, my outcome has been fantastic, and should remain so as long as I continue with my PT. As a PP mentioned, I get achy with weather changes, too.

Good luck to you.

[snipsnsnails]

My father had spinal surgery 6 years ago. The surgery went well, but his recovery was very hard. He had to either lay flat or stand during the duration (12-16 weeks) and wasn't allowed to drive. He became a little depressed, but once recovered, it relieved all of his pain! He still hasn't had a recurrence in those vertebrae!

[panicfoot]

My sister had her first fusion at 16, is now 35 and awaiting her fifth or sixth fusion, but she a unique case AND she smokes, so she has had very poor outcomes, which leads me to my first point. IF YOU SMOKE, STOP NOW and put off surgery for as long as possible after quitting. Fusions fail 40% of the time when you smoke. My company works with a neurospine surgeon who said the only failures he has ever had are because the patients smoked.

Also, I would interview three or four surgeons if possible and go the least invasive route and/or has the best outcome. As cliche as it sounds, some surgeons just like to cut. The doctors I work for always recommend one surgeon who is the least invasive. If you have any friends or friends of friends in the medical field, ask around. Fusion redos are more common than you might think, but usually only with surgeons who are quick and sloppy (or patients who smoke). 

That said, I know a lot of people have fantastic outcomes and highly recommend it, just be your own advocate and be as proactive as possible in finding the very best doctor for you.

Good luck to you!

[dove]

I had a fusion of the L5 S1 back in 2012. I should have had it done years ago. It was the best thing I've done for myself, although not the easiest

I'm open to ?s

[tacosforlife]

My mother had a cervical fusion a couple of years ago, and her outcome was very positive.

If it helps you feel better, I can tell you that I read a lot of medical records every day, many involving back problems in general and degenerative disc disease specifically. I can say that the vast majority of surgeries I read about are successful. And most of the ones I've read about that are not successful were performed by a doctor who was recently forced to give up his license due to his unethical practices.

Given that you have two locations of cord compression, it sounds like surgery is the right move because nothing else will relieve the pressure.

Good luck!

[Deleted]

Nov 30, 2015 11:57:28 GMT -5 panicfoot said:

My sister had her first fusion at 16, is now 35 and awaiting her fifth or sixth fusion, but she a unique case AND she smokes, so she has had very poor outcomes, which leads me to my first point. IF YOU SMOKE, STOP NOW and put off surgery for as long as possible after quitting. Fusions fail 40% of the time when you smoke. My company works with a neurospine surgeon who said the only failures he has ever had are because the patients smoked.

Also, I would interview three or four surgeons if possible and go the least invasive route and/or has the best outcome. As cliche as it sounds, some surgeons just like to cut. The doctors I work for always recommend one surgeon who is the least invasive. If you have any friends or friends of friends in the medical field, ask around. Fusion redos are more common than you might think, but usually only with surgeons who are quick and sloppy (or patients who smoke). 

That said, I know a lot of people have fantastic outcomes and highly recommend it, just be your own advocate and be as proactive as possible in finding the very best doctor for you.

Good luck to you!

Non-smoker so thankfully one less thing that I have to worry about!

So far I've gotten two opinions, both of which fusion was my only option. If I just have the discs removed it would make my spine too unstable.  I would like to go to NYC or Boston (both travelling distance) and hopefully someone who has done this surgery many times.  Some won't even operate on the thoracic area because of proximity to major nerves and there is not a lot of room in the spinal canal in that area anyway.

[tacosforlife]

Nov 30, 2015 11:57:28 GMT -5 panicfoot said:

My sister had her first fusion at 16, is now 35 and awaiting her fifth or sixth fusion, but she a unique case AND she smokes, so she has had very poor outcomes, which leads me to my first point. IF YOU SMOKE, STOP NOW and put off surgery for as long as possible after quitting. Fusions fail 40% of the time when you smoke. My company works with a neurospine surgeon who said the only failures he has ever had are because the patients smoked.

An increasing number of doctors will not even operate on people who smoke.

Of course, a lot of people probably stop smoking long enough to get the surgery and then start again.

DEFINITELY do not smoke if you proceed with surgery!

[Deleted]

Nov 30, 2015 12:01:58 GMT -5 tacosforlife said:

My mother had a cervical fusion a couple of years ago, and her outcome was very positive.

If it helps you feel better, I can tell you that I read a lot of medical records every day, many involving back problems in general and degenerative disc disease specifically. I can say that the vast majority of surgeries I read about are successful. And most of the ones I've read about that are not successful were performed by a doctor who was recently forced to give up his license due to his unethical practices.

Given that you have two locations of cord compression, it sounds like surgery is the right move because nothing else will relieve the pressure.

Good luck!

Honestly, this really does help.  One of the surgeons did tell me that there is a possibility that it might make the discs above and below more unstable because of added pressure with the fusion, but that could happen if I get the surgery or not.  Degenerative Disc Disease is a bitch!

[mich1]

Nov 30, 2015 11:57:28 GMT -5 panicfoot said:

My sister had her first fusion at 16, is now 35 and awaiting her fifth or sixth fusion, but she a unique case AND she smokes, so she has had very poor outcomes, which leads me to my first point. IF YOU SMOKE, STOP NOW and put off surgery for as long as possible after quitting. Fusions fail 40% of the time when you smoke. My company works with a neurospine surgeon who said the only failures he has ever had are because the patients smoked.

Also, I would interview three or four surgeons if possible and go the least invasive route and/or has the best outcome. As cliche as it sounds, some surgeons just like to cut. The doctors I work for always recommend one surgeon who is the least invasive. If you have any friends or friends of friends in the medical field, ask around. Fusion redos are more common than you might think, but usually only with surgeons who are quick and sloppy (or patients who smoke). 

That said, I know a lot of people have fantastic outcomes and highly recommend it, just be your own advocate and be as proactive as possible in finding the very best doctor for you.

Good luck to you!

I like this.....a LOT.  I have friends that do dental implants and I know a couple who will not do them on a smoker.  Smoking slows down bone healing and if the bone can't heal, it cannot repair itself.  

Secondly, research the shit out of your orthopedic surgeon and if you get a hinky feeling, move onto another surgeon.  I know when I was looking, the same names kept popping up as to those surgeons who have the best results.  Like with many surgeries, the more the surgeon does each year, the better.  You really don't want someone who only does these occasionally but has a regular stream of patients.  Something like this is too important to leave to just any surgeon.  Another red flag is if a surgeon can get you in immediately.  I think my OS has about a 3 month waiting list.  Also research the infection control stats of the hospital said surgeon uses.  

Finally, if you find that the best surgeon is halfway across the country, travel.  It's a pain in the butt (I've had to do it for most of my surgeries), but there are ways of making this work.

[tacosforlife]

Nov 30, 2015 12:05:48 GMT -5 calamity said:

Nov 30, 2015 12:01:58 GMT -5 tacosforlife said:

My mother had a cervical fusion a couple of years ago, and her outcome was very positive.

If it helps you feel better, I can tell you that I read a lot of medical records every day, many involving back problems in general and degenerative disc disease specifically. I can say that the vast majority of surgeries I read about are successful. And most of the ones I've read about that are not successful were performed by a doctor who was recently forced to give up his license due to his unethical practices.

Given that you have two locations of cord compression, it sounds like surgery is the right move because nothing else will relieve the pressure.

Good luck!

Honestly, this really does help.  One of the surgeons did tell me that there is a possibility that it might make the discs above and below more unstable because of added pressure with the fusion, but that could happen if I get the surgery or not.  Degenerative Disc Disease is a bitch!

Yes, it really is!

I also say that if two surgeons are saying you need it, it definitely sounds serious. IME of reading records, doctors really try to resolve or at least manage pain via PT, TENS units, weight loss, and medication before surgery because of the risk of complications.

But I would still support you in getting another opinion. In particular, find a surgeon who you are comfortable with, who listens to you, and who you trust to do the best job possible.

[tacosforlife]

Jesus, that looks terrible. No wonder you're in pain!

[nikki25]

My issue was different as I had very severe scoliosis where I ended up having to Harrington rods placed on my spine. The surgery was very difficult and about a 6 month recovery. The results were lifesaving so am glad it was completed.

So, I would maybe get another opinion. I also have pretty severe back issues so your pain resonates with me. Best of luck!

[Alyssa]

My dad is a retired firefighter and injured his back while on the job many many years ago. He's had at least three separate back fusions over the past 20 years. The latest one was a few years ago and they actually went through his stomach to do the surgery. He also had pain that would go down his legs and hit the bottom of his feet.   I think the fusions have helped him a lot. I remember he was always in pain and would be in bed a lot, he missed a lot of family events and get-togethers because he would be in too much pain to go anywhere.  He still has back pain and also deals with frequent migraines, so he's not 100% at all but he is more mobile now at the age of 68 than he was while in his mid-50's.

[Deleted]

Alyssa, I am so sorry for his pain, but I am glad that the surgeries have helped some. It really can start to rule your life.

Many times I am very grumpy and short with my kids and honestly they have to be careful around me (they are 4 and 6) and I feel like I am a bad mom.  

It's been 3 years of this pain, and I am so over it.

My doctor asked me what the hell I did to make these discs look that bad? I was a runner for years but otherwise no trauma or anything.  So weird, just a genetically shitty back. I was reading online that injuries to this area a literally one in a million.  Lucky me, hahahaha!

[Alyssa]

Nov 30, 2015 12:40:46 GMT -5 calamity said:

Alyssa , I am so sorry for his pain, but I am glad that the surgeries have helped some. It really can start to rule your life.

Many times I am very grumpy and short with my kids and honestly they have to be careful around me (they are 4 and 6) and I feel like I am a bad mom.  

It's been 3 years of this pain, and I am so over it.

My doctor asked me what the hell I did to make these discs look that bad? I was a runner for years but otherwise no trauma or anything.  So weird, just a genetically shitty back. I was reading online that injuries to this area a literally one in a million.  Lucky me, hahahaha!

I'm so sorry to hear of that, chronic pain is a real hard one.  My dad first got injured in 1985 from being rear-ended on the highway.  I was only 5 and my brother was 1 at the time so both of us have mostly memories of my dad being in some sort of pain or not being able to do certain things.....having to sit out early or not going to school functions for example.

My husband for the past 10 years has also dealt with nerve damage in his neck and daily headaches from a car accident so I see the whole thing happening again with my kids and having a father who is sometimes out of comission.  As your children get older, they will more understanding of your pain and will know your limits. It's hard to not to snap at people when you are pain, just try to let them know that you are not mad at them but you are hurting and need a break.

I hope you get some relief from your pain, I hear the surgeries these days aren't quite as invasive as they were 15-20 years ago. 

[megstoo]

I didn't have that exact surgery but did have a fusion on L4 L5 S1 S2. The risks are great but honestly I wish I would have done it sooner. I waited too long and not to be TMI did start lose control of bowel function.

There's more issues than just bowel control if you wait (I also have nerve damage in my feet from waiting).

If you have specific questions let me know, I'm more than happy to help. I had my surgery 4 years ago.

[nursewife]

I don't have experience with it, but one of H's aunt's has had it done. I've also seen numerous patients have it done. I haven't seen any horrific cases with bad outcomes. I find a lot of people are often terrified of that happening. Most people are happy they had it done, and a few were a bit disappointed it didn't give them all the relief they were hoping for. With H's aunt, it allowed her to be much more mobile then before with less pain. I'm so sorry you're having to deal with this. Back pain is the absolute worst. Sending good vibes to you.

[Deleted]

Nov 30, 2015 13:08:29 GMT -5 megstoo said:

I didn't have that exact surgery but did have a fusion on L4 L5 S1 S2. The risks are great but honestly I wish I would have done it sooner. I waited too long and not to be TMI did start lose control of bowel function.

There's more issues than just bowel control if you wait (I also have nerve damage in my feet from waiting).

If you have specific questions let me know, I'm more than happy to help. I had my surgery 4 years ago.

I am so sorry to hear that you can relate. 

Mine would be T11 to L2.  

Unfortunately I've been having more and more issues walking.  I am very afraid of losing bowel function as I know that can be a tough thing to get back.

I do have some questions...
How long was your recovery?  I can arrange about 6 weeks from work, possibly work from home for longer, but not much more.
I have a desk job, is sitting going to be a problem moving forward?
If you had lost any motor function did it come back after the surgery?
How is your fusion holding up?
Was yours caused by injury or by DDD?

Thank you in advance, I hope you are doing well these days.

[frlcb]

Nov 30, 2015 10:51:45 GMT -5 Marmee said:

My mom had a similar surgery & had a very positive outcome. She was in her mid-60s and by the time she had surgery she was is such pain she could barely walk.

My mom was the same - she has actually had three spinal fusions over 5 years (she has degenerative disc disease) but literally she was in so much pain before each one that she could barely walk. 

The recovery from the first was difficult, it got worse with each one. Be prepared for a tough recovery.

[Deleted]

Just made an appointment with a different neurosurgeon at Yale to see what they have to say.
Thanks everyone for all the replies from experiences, whether first or second hand