Exhausting recovery after spinal fusion.

Bones, joints and muscles
1

Hi All, 

I had a four level spinal fusion six months ago, was having terrible pains every day, but now I have less pain. However, I am getting very exhausted and need to sleep more than usual. I am 34 and this over sleeping makes me crazy. Although I am taking opioids, the doses are smaller than ever, yet I feel very exhausted and must sleep during the day more than an average. My neurosurgeon told me that I should sleep for next 6 month and when waking up I would feel perfect. But I am wondering, how long it would last and whether anybody else has the similar experience? This is definitely not the last spinal fusion, I must do the other one in few years, also four level, and then probably would have to replace my hips. So I would be full of metals, but hopefully get more years of better life, although not sure whether I will sleep all the time. Any hints what to do?

Cheers!

2

Kristijan87834,

Hi I had my fusion done 20 years ago and I remember sleeping alot and nothing but sleep, but any pain discomfort anything unusual? Loss of weight appetite? Just curious. I hope you feel better as for me I'm in a boat load of hurt. I had a neck fusion in 2012, so I was having alot pain I went and was convinced that the SCS was going to be a miracle to my pain, and the thought of getting off of meds was a hope, a very dim light, well had an steroid injection and told my dr that I wanted to discuss the issue of having this remove, he just walked away without saying anything, well pain was incredible when I woke up I was crying I thought I was paralyzed from neck to toes so of course I freaked out pain was thru the roof, called the rep for unit as it felt like I was being electrocuted and it was coming from where my leads are, to put it short I called the emergency dr office line and before I could explain to the aprn that i have facial numbness n pain like I did 20 years ago from the nevre issues, I already have no nerves in left leg been like this for 20 years needless to say this happened when I was 25 so now I'm 45 I got a nasty answer and was told there was nothing that she or the dr could do but if I wanted to visit could sit in pain in the er, so oh and call office in the am, are you kidding me?! I've been saying from day 1 something was wrong, and they won't listen I'm so scared I'm gonna end up in a wheelchair the pain is unbearable, but the company said if dr won't take it out I can go to the er and have the emergency room doctors take it out, I'm so numb from this and the answers I am receiving, how dare her say such a thing of oh well nothing I can do, please get your sleep but like I said if you have noticed anything different with your body as I ended up with a staph infection after my fusion didn't have any issues til o lost weight couldn't eat and the day I tried to walk around the block to the bank my sister at the time had my niece in a wheelchair so she had to wheel us both, that day I spiked a fever I had on a white beater tee shirt on because I was so hot I thought from the weather that was the issue, than I fell asleep and thank God my sister at the time lived on first floor so I woke up screaming for her as we left our back doors in the stairway open she came running up to see a black tarry liquid coming out of my pores, will called dr they were waiting me at er rolled in and was taking right into the back and everyone was mad and I said I'm sorry to everyone n try to explain what was happening, didn't matter ppl get mad, will the started to push on back to see this stuff come out, at that point they numbed me up and gave me some high meds for pain and they cutted into my back as this sticky oozy stuff came out and the smell was horrifying, next I have about 15 Drs and my neurosurgeon there and was told I had an infection and had to go into emergency surgery, but I died when I had my fusion so I kind of freaked out not having anyone with me an my 7 y/o daughter with my sister so I couldn't kiss her and tell her I would be ok, my nerves were shot, but they cleaned it all out had to leave my back open for 6 or 8 weeks for a nurse to come to my house to clean it daily but I had to have a pic line put in for the drugs went straight into my heart and bloodstream faster, and than with a few issues before going back into surgery again to close the wound, had to see a infectious control Dr, as it was staphylococcus which now is called mrsa it's in my body laying dormant and any surgery or procedures that I have done I have to be checked for the mrsa flair up, it's very scary Everytime I have to have anything done, so for this to happen from just a neck injection for steroids for pain after telling them for almost 2 years of pain from this SCS, I had a revision surgery after the dr finally seen me as the battery of SCS was pushing out of my body is now in my abdomen and the same thing is happening pushing out pain like being stabbed and the pain from neck to toes, and now look at me numb face that I might not get feeling back and nerve issues from this device, but everyone I trusted lied to me and mislead me this whole time, I was in such pain that I almost did the most stupid thing ever, commit suicide cause of no sleep pain emotionally you start to break down, by why give them my life too? They already took away so much from me, they are not getting the satisfaction of taking my life, I have way to much to live for my beautiful daughter and my two very precious grand babies 3 and 2 boy and girl they are my strength to keep me going, so pls pls don't push it under the rug try and get answers as u are still young and need to have some life. Sorry so long but urging anyone with any doubt of anything please push for answers as I feel so let down by the medical field about everything.

Best of luck stay strong and positive as I am doing, noone is getting what little time I have on this earth to them, I won't do it, I have to much to lose, daughter grandbabies and my life.

Pls keep us updated on anything you find out and live your life don't end up like me

But I'm staying strong and will get answers and this thing out, it's my body, I think I have every right to tell them that it's my body my decision and they work for me not the other way around.

Living with this pain for now but will live again!! Nomore tears no more bad thoughts I want answers the truth and my old life back were I was in pain but could feel my face i can't lose this leg too.

God bless love to all who have thoughts like me god has a plan for me and I know that now, I need to be the voice for everyone out there that feels like there is no hope!! Time to change all of our lives!!

Take care as I will not give up til I get the answers I need to know why?!

Much love

Cynthia (Cindy) USA Connecticut

3

Sorry so long!! 😉

4

Hi! I had fusion June2015, L2-S1. I did everything by the book. Walked, good nutrition, almost no sitting, no twisting, bending, you get the picture. I found that the 3 month recovery time that I was told was not happening in my case. It took about a year before I felt like I had recovered. My energy levels were SO low for many months following the surgery. Half the problem is I listened to a few recovery stories about how people were back to "normal" and jogging after 3 or 4 months. I was asking myself why I wasn't up to those standards. Then, I decided I would honor my feelings and limitations and accept my situation. Everyone is different. This is a huge deal, this fusion. It takes a lot out of you! Be super good to yourself! I hope you continue to heal, and have positive results from all the hard work it takes to be productive again!

5

I'm scheduled for the same surgery next month.  My surgeon told me the recovery takes 1 year but I wasn't sure to what extent that meant.  So thank you SO MUCH for writing that!!! Is there anything else I should know?

6

Attitude is a huge part of recovery! Sure, I had a few pity parties, it is so hard to nkt be able to do little things like go out to dinner (for a while) u til you can sit comfortably. I think that was a major sticking point for me (not being able to sit). You can do this! Get prepared as much as you can! I put food in freezer, got clothing that would be comfortable under the brace if you will be wearing one. Slip on shoes are a must. No bending, so get a reacher from the medical supply store, put things at counter top level so they are within easy reach. I hope this helps. Any questions please ask! Good luck!!

7

Thank you! My first (single) fusion went so well, I'm worried that I may have unrealistic expectations of how well this recovery will go. Yes, thank goodness someone else recommended I get a "reacher" pole last time.  I still use it.  I didn't ever need the portable toilet or raised toilet seat people told me I'd need.  Did you need/use either? I've been working all summer with my BFF/physical therapist (we met when she was my PT after my 1st surgery & I give her full credit for my relatively easy recovery) to strengthen my core muscles & my balance prior to surgery. How long do you think it took before you could sit comfortably?  Also, my surgery is 12/3. I know everyone's different but would you think I'll feel well enough to have the family at my house for Christmas? Everyone is waiting on me to tell them if they need to make other plans. 

8

Hi I'm scheduled for L2 to S1 fusion in January. We live in a double story house. Do you know if getting up and down stairs will be a problem?

Thanks in advance

9

Wendy86854,

Honestly if you do well on healing just take your time one step at a time no rushing. With me cause I was a failed fusion it was so bad I had to scoot up and down or be carried up or down it was a pain, but I'll pray for a speedy recovery n safe fast one.

Good luck not all fusions are the same but please listen to your surgeon if he says no stairs do little as possible just to go to appointments and such you need your body to heal right

Take care god bless prayers your way

Let us know how it goes

You'll be fine

Cynthia ( Cindy)

10

Absolutely do what the surgeon tells you! Be sure to check back in here and let us k ow how you are doing!

11

Personally, I would not have been able to do it. My surgeon told me my full time job was caring for myself for the first 60 to 90 days. I was waaaayyyy too tired for the first month to entertain! Maybe you could do it if your family did the work and they took care of you while they are there! That would be an awesome Christmas gift!

12

My surgeon also told me that its needed 6-12 months for more than one hundred ligaments and about ten muscles to adjust. Also, my spine that is still scoliotic, must adjust as well. So that provides for a lot of pain sometimes, although not that strong as before the surgery. You should know that I felt the first three months after surgery like at the roallercoaster, being well and then awful for days. Also, first month I was so exhausted that I though I was going to die every second day, but now I don't have "near to death sensations" anymore. I just feel like I could sleep for 10 years. smile

13

I suppose it will be a problem at least in the beginning. After the surgery I had to use walker even to get out of the bed to the toilet and had to learn walking again. I think that I started using stairs, every day one by one, two months post surgery.

14

Thanks Cynthia

Great advice. Its very helpful as you have been through it already. Helps me to prepare.😊

15

Thanks. I guess i will put a bed downstairs and take it nice and slowly. Its a big surgery.

16

I din't imagine how big it is until I got it. And the surgeon had a good tactics not to scare me off, although the pain was of such kind that I would accept anything just to get rid of that horror. Replacing the bed may be good idea. Also, its good to have support at the home and somebody should be around all the time for the first week after the hospital. Just in case. Later you will manage alone. It is essential that when you walk you remain stable all the time; falling is not an option. You'd have to move and excercise little by little, and even you will sometimes feel perfectly well have in mind that if you do too much activity, it can get much worse. Also, for the first month, you should avoid transport either by car or public transport. I still cannot cope with the buses in public transport because they are driving awfully. Four months post op I was going to Ireland and changed 2 planes, landing and take off were with no troubles, as such as I get by going from my home to the town centre. Drivers are just idiots who cannot avoid holes at the road and my spine can feel everything. At the beginning, also, you would feel even inertion during drive which may be uncomfortable and painful. I suppose you will get a brace to use it and make you more stable. And at the end, you should be kind to yourself and take this as a journey of life. If you need sleep, you sleep, do whatever necessary to keep positive because you can get easily depressed, get surrounded by people who are kind and caring. 

17

Wendy

They gave me a hospital bed when I had my fusion S1-L-5 so my partner didn't roll around and hurt me was in that bed for almost 2 years with the pain I was in.

Still it bothers me now with my bf in bed with me he moves around to much and the pain I'm in I can't sleep I got maybe 2 hours 4 am til 530 am I can't wait to get this SCS out

Waiting for the date, I just pray no damaged or more damage will be caused by this stimulator, so much pain mind is racing and scared to death..

But staying positive

Take care of yourself

And keep us updated

I'm praying this comes out soon as my good leg is what is being compressed by the leads from SCS so nerve wrecking.

Cynthia ( Cindy)

18

Good idea! I also used a walker when I came home, and used it for about 4 weeks.

19

Oh my goodness Cynthia...you are in a world of pain. Who would think the scs could give you such trouble!

20

Wendy

I've been trying to tell them since the get go, noone wanted to listen to me. But I'm going to stay positive and hope things work out ok, praying now...so scared

Cynthia