Not bad enough for surgery: I have lived with... - Pain Concern

Pain Concern

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Not bad enough for surgery

peanutsnana profile image
22 Replies

I have lived with this for over 13 years. I spend most days trying to find relief. I had MRI's done in September. Between T2-L5 I have 11 bulging discs, at every level there is either a pinched, herniated, stenosis, DDD, spurs, atrophy I can't even remember what else. I've been getting injections about every 6 weeks, I'm in pain mgmt, weight mgmt and Pt. I only have about 30lbs to go. Every Dr I have seen tells me it's not bad enough. I do everything that is recommended. I can't even drive anymore BC I can't sit that long & I can't have the pressure on my back. Oh & I went from 5'9" to 5'7" in the last 2 years. Do I really have to continue to live like this?

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peanutsnana profile image
peanutsnana
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22 Replies
deejames profile image
deejames

Not quite sure what you mean by pain mgmt, weight mgmt etc . what kind of surgery is proposed and which part of your spine are they going to do it on? Surely not the whole lot.it Your situation sounds difficult at the moment.

peanutsnana profile image
peanutsnana in reply to deejames

That's the problem, I can't find any Dr who is willing to do surgery. They tell me it doesn't warrant surgery. Pain mgmt is where I go every 28 days for pain meds. Weight mgmt is the same thing and I meet with a nutritionist to change my diet in hopes thatif i can lose 50 lbs, I've already lost 22 it will it the stress off my back.

I have had a couple of Dr's tell me the reason they won't do it is because they would have to go thru my chest and there's too much of a risk. The damage is from T2-L5 at every single level. There's bulging, herinated, collapsed, spurs, I could go on and on.

I had C3-C7 fused used in 2012, they said it was my neck that was the problem. I have been telling Drs since 2003? that I woke up one morning with a kink in my leftshoulder blade but I couldn't find anyone to listen to me when I said that's where the pain is.

It was in 2014 they finally got 1 done on the Thoracic and they were surprised at everything that was going on. I have had people/DR's act like all I wanted was pain meds, no I wanted the pain to stop.

deejames profile image
deejames in reply to peanutsnana

Yes it does seem cruel that there are treatments for so many conditions . I have osteoarthritis in several vertebrae and disfunction in my SR joints. I've been told by so many people that I have to keep my weight down as any extra puts more load on a spine. It does make sense so good luck with losing those pounds. I'm sure it will make some difference.

peanutsnana profile image
peanutsnana in reply to deejames

Thanks so much for asking, I appreciate it. I've learned that people who don't live with chronic pain don't really understand. My daughter had pulled a muscle in her neck about a month ago. She came over everyday crying it hurts I can't turn my head. She made the comment if this is what you go thru your one tough woman. Lol. It has actually made her think that the littlest things are sometimes extremely hard to do.

I found a website yesterday that seemed to have a lot of info on it. I wish you luck

deejames profile image
deejames in reply to peanutsnana

What is the website please

peanutsnana profile image
peanutsnana in reply to deejames

Www.spine universe.com

Calceolaria profile image
Calceolaria in reply to peanutsnana

The MRI scan result shows rather typical damage. Not all of it, if any, would be operable. My scan shows similar degeneration and scans do show up every tiny detail. Looks scarier than it is in functional actuality. From age 30, spines degenerate. The issue is the pain management. Some people suffer pain with minor scan findings, some suffer no pain with greater scan findings. Fear and anxiety about scan findings make the pain worse. It's unlikely that so many doctors are not treating you fairly and to the best of their abilities. Have you tried sports massage to relax those tight muscles which have sprung to attention to guard your back?

peanutsnana profile image
peanutsnana in reply to Calceolaria

I have done pt numerous times over the last 13 years. I started with chiropractic, massage therapy and epidural injections. It worked great back then. I've done deep tissue, sonar, more injections with pt about 4 years ago.

Every Dr would tell me it was my neck so I had C3-C7 fused. It helped the neck but it never helped the pain in my mid back. I've been telling every Dr I saw that it was under the left shoulder blade is where the pain is & always has been. I've been doing injections every 5-7 weeks now since last May with no relief. I started pt again 3 weeks ago. I have an Inversion machine & that helped in the beginning. It has only been the last 3-4 years that it has gotten to the point of unbearable & loss of bowels & bladder.

peanutsnana profile image
peanutsnana in reply to peanutsnana

It is not fear & anxiety that bothers me, I have dealt with this for a long long time and I accepted years ago that my back was bad. The problem is "oh it can't be your thoracic spine, that's the strongest part of your back". I know this, unfortunately this doesn't make it stop hurting I wish it did because I would give anything to have my life back!!!!!!

Calceolaria profile image
Calceolaria in reply to peanutsnana

So sorry peanuts. Pain is a tough master. Loss of bowel and bladder function can be a symptom of cauda equina syndrome and might need urgent medical attention.

peanutsnana profile image
peanutsnana in reply to Calceolaria

I know, I'm sorry I sounded snappy, I get so frustrated BC I had been telling the drs it seems like forever. I would get told it's the meds bc it started at night.

I finally found a PCP who said OK let's try this med & see what happens. That's when my pain Dr sent me for the latest MRI's. What is sad is it was actually the NP that sent me & it was only bc she had called out sick that I saw the "actual" Dr. She hadn't even told him anything about it.

I was looking at them the other day & realized that T2-L1 said no focal abnormality or stenosis. The other MRI says the exact opposite, stenosis, bulging, spurs etc.. Done at the exact same time just 2 different drs had read then. I am now in the process of getting the actual disc.

I worked as a nurse taking care of people just like me. It ain't no fun

Calceolaria profile image
Calceolaria in reply to peanutsnana

I have all my scans and x rays on disc too. One persistently got lost n the system and two consultants didn't get sight of my neck scan, so I paid for copies and can bring. But they not get to keep! Good luck.

deejames profile image
deejames in reply to Calceolaria

Good point Calceolaria. Apparently some people with my degree of degeneration in their spine feel hardly any pain at all ! I've come to terms with that eventually though I do have the odd moment of 'why me'. Doing some sort of relaxation / hypnotherapy / mindfulness has been the best way to relax and reduce the pain that comes from worry and grief about my condition. Its not a cure. There is no cure. But I'm learning to help myself and understand the way pain operates in my mind and body.

Hypnotherapy pools can work wonders to release tension . Any near you Peanutsana ?

peanutsnana profile image
peanutsnana in reply to deejames

Unfortunately not. My "why me" moments are more of being AnGrY that the drs & everyone kept telling me it can't be your Thoracic Spine. It is your neck. I just want to tell them all "told ya so". Because after 13 years the pain still is in the exact same spot.

Don't get me wrong I have good/bad days & I do everything in my power to keep moving. I took care of many people who had health problems.

I can lift a gallon of milk. Does it hurt? Yes, like h___ do I still do it, everyday. Why bc I have too. I stretch, I get on a treadmill 15 minutes 2x a week. So I do everything I can to keep moving.

nicibadback73 profile image
nicibadback73

This breaks my heart to hear what you've been through. To make a long story short 7 years ago after a car accident I got a badly herniated disc and completely numb feet and calves. I fought tooth and nail for them to operate and when 2 years ago they did it made the pain worse! Surgery is not the answer good pain management is :-((( I wish someone had told me this. Have you tried oxycodone instead of oramorph I find I function much better with it. Also I do a lot of breathing exercises to release tense muscles as well as meditation it's worth a try. Have you talked to your doc about a change in your meds if they're not working well? I hope this helps In some small way

peanutsnana profile image
peanutsnana in reply to nicibadback73

I have and I do take methadone, oxycodone, antiinflammatories, nerve blocks. I have been letting them know I need something stronger. I will try breathing exercises, I have heard that they really help. I know I have to slow down but that is so so hard for me. I've worked 2 jobs or school & work raising 5 daughters.

I might wake up & feel pretty good one day so "cool get the house clean". I pay for it at the end of the day, I usually end up on a heating pad for the next 3-5 days. For some reason I can't comprehend the words SLOW DOWN.

nicibadback73 profile image
nicibadback73

Hi again

I think the 2 things I totally had to re train myself to do were pace myself eg slow down and not do everything I can possibly do on a good day as there are then very bad bad days that follow. Things I did were get help a very good friend comes and deep cleans my house every 2 weeks for £20. Its the best £20 I've ever spent. It means I can just top up and not clean my house top to bottom then pay for it. The other thing was when things are bad get my food shop delivered! Silly things but everything helps.

Meditation helps a lot. Have a look on you tube as lots on there for free. It takes a while to be able to relax into it but keep trying!!!

Take care

peanutsnana profile image
peanutsnana in reply to nicibadback73

Good morning everyone, I just wanted to say Thanks for all the suggestions over the last few days. Yesterday ended up being a pretty good day. I only vacuumed 1x instead of multiple. I actually spent the entire day doing nothing. I did a few stretches & the heating pad. The only thing is I kept having cramps in my shoulder blade that would go into my left arm & fingers. Also all the way on the right side of lower back, back of thigh into the top& bottom of my foot & toes. It was like a really bad "charlie horse" in the fingers, foot & toes. Anyone else have this problem?

peanutsnana profile image
peanutsnana

Sloe down, I think that is the hardest thing I ever had to do. Since I use to work in a nursing home I had become ocd about a clean house. It drives my family crazy, they tell me it's not dirty it's lived in. I think also bc I don't have any body to "take care" of I focus my energy on the house. Eg.. I have a 3x5 rug in the front room, I vacuum it 2-3x a day bc I see dog hair on it. It drives me out of my mind.

angelrobert profile image
angelrobert

Doing some sort of relaxation / hypnotherapy / mindfulness has been the best way to relax and reduce the pain that comes from worry and grief is not the real way to cure your disease. For the solution of the problem, you should definitely consult the physician for the solutions of your pain. orthopedicsurgerysandiego.c...

peanutsnana profile image
peanutsnana in reply to angelrobert

PS. I consult the Physician every 28 days for pain and also Pt every week.

peanutsnana profile image
peanutsnana

I am really not sure why everyone thinks that I worry or grieve over this? I have lived with this for so long that pain is a part of an everyday event. I understood this to be a site that allowed me to tell of my situation. Was I wrong in thinking this? I will tell you if you think telling someone to quit worrying & grieving is helping you are sadly mistaken. I hurt but yet I still get out of bed everyday, fix the hubby lunch, chase a 2 year old during the day & for the most part still cook & clean. I do NOT sit around and say "Oh Poor Me". There's days I can barely walk or keep the tears from running down my face but I still get up and do what I have to. I have been to numerous DR's and they all tell me we can't do surgery, go to physical therapy, lose weight, do epidural injections. I do it all, does it seem to help even with all the copious amounts of pain meds I take??? Hell No! But I still keep on going, so please the next time you think about telling me to quit worrying, Don't waste my time!!!

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