How do I get thru spine surgery recovery? I need people to talk to

When I saw the ‘55’ in your name, I was hoping it was your birth year. I’m Jan 1955, so also 69. Had a laminectomy at L4-5 w/fusion on 12/19/22. Thank God for my doc in GA, who has always kept me supplied w/ pain meds. I get migraines and when my back decides to go out, I’m sorry but Aleve or IB doesn’t work. I used the 20 Perc 10’s they gave me, and had to go into my stash. Not for long though, because I really didn’t feel that bad. I should be a raving drug addict, but I so am not. Let’s not discuss wine though!!!

I am also a nurse - I’m a pediatric NP. I purposely did not look up anything about the devices in my back, until several months post-op.

As I’m writing this, it is June. 29, 2024 - ~18 mo after my surgery. I walk like an old lady. I still hurt more often than not. Getting in/out of the car is an exercise in futility. My car is ~4” from the ground. I point my butt in and drop. If the roof is down, I can get out a lot easier, because my left leg and upper body are much stronger, so I can haul myself up by sort of laying across the side of the car! Ironically, my surgery was on the left. That side is much stronger. Any muscular pain I feel, is in my right abdominal muscles.

For several months I could not get up to a standing position w/o a lot of pain when getting out of bed. I kept the shower chair at the bedside to use to haul myself up. Doc didn’t want me starting PT, because we don’t live near a hospital affiliated PT and he didn’t know anyone for me to go to out here at the beach. Hospital is in Orlando.

I just got another referral for PT for my continued inability to walk w/o pain in the muscles around my right abdomen. I don’t know who to go to or what to ask them or look for. I am used to writing ‘evaluate and treat’ when I order PT for my patients. Typically, I refer them to the place as well. Now that I need that type of help, I don’t know what to do!

Last time I saw the Ortho was in Dec. He ordered a ‘bone growth stimulator’ which is a device I wear for 2 hrs/day. It’s supposed to make my spine grow faster.

Every time I would go to his office, I’d get either an x-ray or MRI, which showed the cage from fusion, the insert between L4 & 5 all to be in good alignment. I’ve had a recent bone density, with much stronger bones than a 69 y/o woman should have!

I have no idea if this is doing anything or not. My biggest issue, once I’m standing, is the fact I can’t stand or walk very far at all without having to stop and lean forward every 100 feet or so. It is like my abdominal muscles can’t hold me up. When we are at the grocery store, I can walk all over the place, as long as I have the basket to lean on.

Yesterday, I was able to get out of my chair w/o pain, today, severe pain across my lower back. I’m scheduled for a rhizotomy - aka radio-frequency ablation. They do everything like I’m going to get a steroid epidural, but they insert a wire that will zap nerves. That is scheduled for 7/8.

About 4 years ago, we bought me a Svago zero recliner. We bought the Newton, I think it is. The top of the line chair. I cannot sit in anything else. I can recline it back and turn on the heat/massage functions, or drop the far end down a bit. I keep playing with the controls. It’s amazing how moving my feet or back up or down a teeny bit can relieve pain/stress on my back instantly.

The other thing I did was get an adjustable bed. Boy, is that an exercise in aggravation - looking at mattresses/beds. As bad as car shopping! Of course we looked at the expensive ‘number’ beds, Tempurpedic, etc. There is a site ‘sleeplikethedead.com’ that is like the consumer reports of mattresses. No ads from mattresses. Just unbiased reports. While at one of the mattress stores, where we had bought my chair, the guy said there are only 2-3 makers of the adjustable bases, so no need to get a Tempurpedic brand.

I ended up buying 2 twin-xl adjustable frames, (which makes a king) that can be electronically linked or not. We don’t have them linked, so I can adjust my side to my desire. Of course they send things that allow them to be kept next to each other. Got them at Sams for, I think $899 for both.

Not sure if I’d like them, Costco had mattresses on sale. After about 4-5 months, I couldn’t stand them. My husband especially could feel the base when he turned onto his side.

Being Costco, they took them back. I had already done my research and had the new mattresses here before the old one’s left. Absolutely love them. I think they are ‘Dream Cloud’. 14” with coils and foam - best of both worlds; and can still be used on the adjustable frame. They have a 365 day return policy - no questions asked. Even got a first responder 20% discount!

One bed was changed out because I started feeling a wire when I was changing the sheets, They asked a lot of questions, wanted pictures. Did send a replacement mattress. They are not allowed to re-use them so I still have it. Left new one in box. They were pretty pricey, so I wanted it perfect. No further issues w/wire. It did not continue to unravel. I didn’t know that of course when I requested the replacement.

Only issue, is these beds are a PITA to change the sheets on!! One mattress guy said to raise the head and feet, put the sheets on, then hit button to make mattresses flat. It does help suck the sheets into place. Biggest problem is due to the fact that there is a metal rod that keeps the mattress from sliding off the bed. It’s almost impossible for me to get the sheets and blanket behind this piece of metal.

Did you have your surgery at Mayo? In addition to my back issues, I have an essential tremor that is much worse in my dominant hand - right one.

I self-referred for an appt at Mayo Jax on Thursday night. Friday a.m. I received a call from Mayo scheduling!! I was sooo excited, until I was told that not only could I not get put on a schedule, no matter how far out, I couldn’t get on a wait list either. All I can do is self-refer Qmo. I have it in my phone to repeat on the first of each month.

I hope this ridiculously long text makes you crack a smile, if nothing else! BTW, I have been on AD for years. Maybe ask your PCP for a short-term course of something mild. Like Wellbutrin or Effexor - which is something we use until we can get a kid into see a Psych. Like Neuro’s for ET at Mayo, Kid Psych’s are few and far between!

Take care,
Karen

Welcome, @lisaloulou. You may also wish to the Follow the Spine Health support group https://connect.mayoclinic.org/group/spine-health/.

Here are some spondylolisthesis relted discussions:
https://connect.mayoclinic.org/group/spine-health/?search=spondylolisthesis+#discussion-listview

So true 'if only you knew'. Getting old solo is awful. I must learn to overcome obstacles move forward, go places. It's hard to find someone available at 76 yrs old. There are cancellations, more spats amongst friends and appropriate groups are few and far between, Life doesn't forgive. Meanwhile after total hip replacement just over 4-months ago and bronchiectasis, I'll look forward to live theatre show in Oct. 2024.
I encourage you to keep up your strength, stretch, make use of a resistance band very morning. Get stronger and more resilient.

@lisaloulou Welcome to Mayo Clinic Connect! I’m so happy to hear that your sisters lives with you. Can you imagine being all alone any trying to care for yourself?! I know many people so, but it’s so much better to have your sister there. and how are you doing today?
If you could, what tips would you give to someone contemplating this surgery?

Hi, Tessie (@tessie)

Thank you for the words of encouragement! I try to do the very things you advise. I have my resistance band beside me as I type this as a reminder of what I must do next: Get up and get moving! Movement is key; the more, the better. I have Twyla Tharp's book, Keep It Moving, beside my bed to read in snippets every evening as I'm about to turn off the light and every morning as I'm about to get up.

Take care! Stay strong!
Best wishes,
Ray (@ray666)

I was 68 and had a lumbar fusion L3-L5. Had been very athletic most of my life playing basketball and then racquetball.
The best advice my doctor gave me was to walk a mile everyday. When you are able to. I’m 80 now and regret not following his instructions. When you are able walk a mile every day, you will never regret it. God bless you.

Hi Patrick
Sending healing thoughts and prayers for a quick recovery and peace of mind.
It takes alot more time than we ever expect it too and hard not to run out of patience. Online Scrabble, Jackpot Magic free slots and alot of movies and books help me get thru the pain. It gets old talking on the phone and sometime repeating your story to folks only makes you feel worse. My library has an app called Hoopla and get tons of free books to read. Prayer helped most of all and then once I was more able funneling my energies into helping others. 🙏

Ps. Try not to stay on Oxy too long. My best friends over the years have been Gabapentin and Celebrex. Yes it was very hard to give up my golf clubs, tennis racket and ten speed bike and adapt to allthe changes necessary and find new less exerting hobbies. I have to hire a gardner to assist me with bending and lifting in my butterfly garden, but I can still prune! I just kept telling myself it will be alright and somehow you muddle through it. Hang in their buddie!!🤗

Denman,
Very sorry to hear you are suffering so greatly.
Being 6 weeks since you fusion I’m guessing the pain is much more manageable ?
Having hemilamenotomy this Thursday and thinking of you.
I will pray for your fast recovery and return to positive thoughts to enjoy life and encourage others that there is light at the end of that dark tunnel.
Tony

Very positive honest solid advice.
Thank you.
Spine surgery Thursday !
Tony