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dilauro's picture
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What kind of maintainence or routine do you have when surgery is not an option?

Many people for whatever reason are not surgical candidates.
Yet they still have the same type of pain that others have.

Are the routines and actions they take differ from someone who has already had surgery and wants to avoid another one?

So, if you fit the slot that says " I have chronic pain, but I am not a surgical candidate, we would love to hear what you do to keep your pain level down.

_____________

Ron DiLauro
Ron's Story
Suicide Hotline
Alcohol and Drug Abuse
Arthritis
_________________________________________
rdilauro@gmail.com
SH Administrators = dilauro or tamtam
SH Moderator Team =
haglandc , Numbskull , Liz, or Neck of Steel Cindy

"In his eyes we're all the same Someday we'll all have perfect wings, Don't laugh at me."
"That there's none so blind as those who will not see."

The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
This can vary from person to person, so do not take comments as medical facts or rules

hopeless-in-mn's picture
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non surgical chronic pain

let me begin by stating that i will be eligible for surgery if i can lose about 130 lbs. but as this is still a long way off, i consider myself to be nonsurgical.
i have ddd with chronic herniations to almost the entire lumbar. also have neuroforaminal stenosis, bone spurs, and arthritis. recent ct showed l5-s1 as a "vacuum disk".
i take detrol, lasik, neurontin, robaxin, potassium, simvistatin, chantix, celebrex, eflexor, and vicodin(which i try to only take at night as being a single mom...)
my routine is to do what i can around the apartment, try not to push myself too much, rest as i need it, and just take every day as it comes.
my greatest inspiration came from the Serenity Prayer. I know it is used mostly with addicts, but the idea of changing what i can, letting go of what i can't(so difficult for me)and wisdom to know the diference.
my children help me alot Angel , and i have found the most wonderful of men who loves me the way i am now, and promises to love me no matter what the future holds for me. Day Dreaming .
now i also have the wonderful people that i've met here who have shown me that not only am i not alone in this, but i am not crazy either Big Hug Applause .

_____________

chronic herniations L2-S1, full thickness annular tears L2-S1
DDD involvinging one or more lumbar discs(L2-S1)
spinal stenosis T8-T11, and L3-L5
neural foraminal stenosis from L4-5 and L5-S1
cervicalgia, and gait imbalance due to lumbar surgaries

bigcat90's picture
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Hi

I am not a surgical canidate,although my disc at the l5 s-1 has gotten worse,i now have a protrusion,i have had a rhizotomy that had helped,but has worn off now.Nothing is pressing on a nerve,my doctor said that they could trim the disc,but i am going to wait my pain meds are contorling my pain....

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User offline. Last seen 20 hours 34 min ago. Offline
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A day long process!

Smile it is now my life to control and maintain my pain levels. Thinking i have so many hours a day when i can be up and then the rest i spend on my bed. on a good day i walk every day, sometimes twice a day. i also use the exercise ball and do stretching every day. it is a day filled with taking meds, resting, and trying to have a little bit of a life. i also take vitamins and supplements for my joints and to clean my liver and kidneys. i spend a little bit of the day in meditation which i feel helps me control the pain. i take a hot shower when i feel really bad. i put on my softest pjs and get cozy in my bed. having a pain flare up can be from a day to several weeks. when this happens my life slows down considerably. then it is mostly meds and rest. Sleepy maintaining pain levels is a day long process. Jenny Smile

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be impeccable with your word..

deebelle (not verified)
rising above the pain

I am right now not a surgical candidate and I am not even sure that I would want it given the risks. I think its all about degree of pain. I can walk thru it when its about a 5-7 but after that its impossible to walk thru. You just rest and do things and practice some acceptance. Its hard not to be depressed. I know my pain is always different and can vary, so when its good I go and when its bad I stay. Today is a good day, not necessarily pain wise but I feel better emotionally Wave

Hugs and blessings to all in pain;
DEEBELLE

Joined: 03/08/2010
Posts: 2
Points: 4
not ready for a third surgery

second time a screw broke in my neck and there's no options for me. So I'm going on with a positive outlook for my son and do the things I love to do, like fishing. I have to be very aware of every step I take to not slip and fall which I'm prone to. It's warming up so I can take walks and garden. It's getting harder to swallow my food, so I take smaller bites and I take several short rest during the day. Mentally I was geared up for surgery until they gave the odds of failed fusion so I opt out. I worry constantly about being in the car,with the airbags. I worry about the broken fragments from the broken screw, the NS had no answers.
Every morning I wake and give thanks for a new day.

charry's picture
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I'm not a surgical candidate

The ways I use to deal with chronic pain is mainly medications and use an infrared platinum heating pad whenever I'm sitting at the computer. I'm getting epidurals(caudal) and facet joint and SI injections and going on Thursday April 22nd for my 2nd set but I've had a total of 6 epidurals in 2+ years. I use a cane when I go out to walk a block usually 3x week. I've recently ordered a TENs unit to help with back pain. My herniated disc has healed but DDD is still causing nerve compression so the pain is the same for over 2 years.

I hope the pain eases up and feel I would benefit from surgery if this goes on longer. I wonder how long you have to wait before you become a surgical candidate? Hoping time and technology will someday help me get back to a working life. I can't give up hope and praying for healing. I'm interested in anyone who has had a spine injury heal with time. Charry

_____________

Any answers I have is not medical advice only a Doctor can help you with that. Just sharing my personal experience as a fellow Spine Health member only. DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing Neck-reverse Lordosis of c-spine C6-C7 with impingement, numb hand and sore outer elbow. Keep the faith.

John's picture
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Never easy.

Ron,
After my failed fusion I am no longer a surgical candidate and that in itself was not the news I wanted to hear, after getting over the shock, the positive was that I did not have to place my own improvement in a process that already had some short comings.

Melzack & Wall in Challenging Pain suggest that no one entity is sufficient in managing pain and it is the amalgam of simultaneous strategies that are best placed to help us. I have not waited for any subsequent breakthrough and two decades have now passed and no realistic alternative gives any potential reduction of the pain that I endure, any improvement is up to me in managing it more effectively, it is not ideal but the best of a difficult situation.

Maintenance is sometimes the best of a bad situation and although we all want to improve, wishing in itself will not bring about that desired objective. Once that plateau of improvement is reached wherever that is for us individually, time is not on our side and progressive deterioration infers a lifetime of this continual pain.

The impact of chronic pain accumulates over time and with improved support and encouragement we are assisted to manage it, as Jenny said this process is continual and we are encouraged on the good days, trying to squeeze our historic life into our new physical capacity almost impossible and reflective on a life once lived.

Even with experience and time my pain has predominance and those lows of the roller coaster have to be endured as we strive forward. I had my surgical chance and for whatever reason it did not work and everyone does not get that opportunity, I can do many things even with pain and learned to value the simplest of achievements every day.

My belief is that we cannot avoid the inevitable only prolong that time scale our condition will determine the next step and even when surgery is not recommended patients do survive the second alternative of managing it and well done to us all.

Take care.

John

_____________

DDD.1990 Laminectomy, Failed spine fusion, hartshill rectangle RLS. 3 stents

Pain is inevitable, misery is optional. Sternbach et al
Pain is a more terrible lord of mankind than even death itself.
Albert Schweitzer 1953.
“It’s not things that trouble us but the views we take of them” Epitectus

meydey321's picture
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Hi Ron

Currently I am not a surgical candidate because it's too risky to remove scar tissue from the nerve roots; I also have severe DDD, facet arthritis, as well as DJD in my spine. My current maintenance for pain is an infusion pain pump and some oral medications. My routine has included water therapy, using ice and heat, a tens unit, and resting in bed or recliner. My pain has been complicated by fibromyalgia now, and it has amplified the discomfort I feel. Just what I need At Wits End

_____________

PLS,nerve damage,facet arthropathy,severe DDD,DJD,scar tissue; Fibro
Back Surgeries: Microdiscectomy/ laminectomy,2 level TLIF/Laminectomy w/ hardware, Synchromed infusion pump
Meds: Dilaudid,Oxycodone,Lyrica,Robaxin,Cymbalta,Elavil,Plaquenil
Spineys Rule!

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I wish I was A Surgical Candidate- Neckie

I am not a surgical candidate. I saw 3 Neurosurgeons and 1 Ortho. in the past 5 years, and they all said no. I have lots of little things that add up to pain and not one big thing that can be fixed. (2 herniated discs in neck plus 1 level fused from birth without a disc, 2 herniated discs in T-spine, DDD, arthritis, spondy, & right frozen shoulder, & nerve pain radiating to right arm, hand, & shoulder blade) Plus, they said that my congenital fusion in my neck complicates a fusion surgery and requires many levels that end up with the whole neck fused. They said they wouldn't do that just for pain,numbness,and weakness. They told me they would consider it if I had an infection, instability of spine, fracture, or full cord involvement.

Aqua/pool therapy (WARM WATER) has been the best form of physical therapy for me. The best pain relief and most constant pain relief has been from the Fentanyl patch, but I am struggling to delay increasing the strength, 25mcgs, even after 19 months. Most people have already increased within a year I have been told. The anti-inflam. is diclofenac, and muscle relaxer is flexeril as needed. I do have break through meds. that I take sparingly for bad flare ups- vicodin. I have had 5 facet blocks/ESI's and 1 medial branch block. I just had my second rhizotomy/radio frequency ablation- denervation. I don't understand why they call it so many different names- LOL. I hope it helps me to wean off the patch as that is my ultimate goal.(fingers & toes crossed)

I also go for weekly lidocaine, trigger point injections to help me with muscle spasms and pain that flares up from any form of exercise. They have really helped me or I would not go for all those shots! I am very thankful that insurance covers them too. In between visits, I use lidocaine patches just to keep the muscles relaxed and those thermo- heat patches. I have had 2 steroid injections so far in my shoulder, and they have also really helped.

The heating pad really helps me, and I have a home traction unit, and a TENS unit. I also go to counseling, and I am not ashamed to admit it. It has been a wonderful resource for me. I was thankfully already going to see a wonderful lady to help me cope with my worries about my children's medical conditions. I am very thankful, because it really helped me when I hurt my neck. It also still helps me to adapt to my challenges, physically and mentally.(work is still in progress - LOL)

I also need to learn to PACE myself when I feel well. I tend to overdo and flare myself. I just want so badly to feel useful for my family, and I end up going backwards. That is probably my biggest mistake. I need to stop repeating it! BE PATIENT!! PACE YOURSELF!! BE GOOD TO YOURSELF !! I need to take my own advice- LOL!! I have mentioned a lot of things, but I try a lot of things. I want to be resourceful so I try my best to improve. I am in no way a medical pro., but I hope my story might help someone. Smile

glo Smile

daisy mae's picture
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Joined: 07/26/2010
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Thank you so much Ron for

Thank you so much Ron for asking how one manages when considered to not be a surgical candidate. It is nice to see how we all manage, some the same others differently.
I am muddling through all this the best way I can. I finally have an appt with a local pain management dr. I have a question for everyone, how has the chronic pain affected your marriages/relationships? *I* am having a tough time with this one..
Again, thanks a bunch Ron Wink

_____________

daisy mae

Current Medications:
Dilaudid, Neurontin,Cymbalta, Cyclobenzaprine,Elmiron Ibuprofen, Rabeprazole, Ativan, Premarin, Vaginal Valium Suppositories, Xylocaine Jelly, Biscodyl, Restore-a-lax

dilauro's picture
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Daisy Mae

I am glad to see that you are researching various treatments to help you when surgery is not an option.

Chronic pain does impact us in many ways. Its easy to understand the physical part, but the emotional part is much more difficult.

There are a number of threads here that touch upon the subject about chronic pain and its impact to family life:

How do we say thank you

Chronic Pain and Marriage issues

So Much More

These are just some of the recent threads. If you used the search facility, you will find many more.
I do not think there is a person out there living in chronic pain that has not experienced some difficulties with their loved ones.

Best way to deal with all of this!
Effective two way communications

_____________

Ron DiLauro
Ron's Story
Suicide Hotline
Alcohol and Drug Abuse
Arthritis
_________________________________________
rdilauro@gmail.com
SH Administrators = dilauro or tamtam
SH Moderator Team =
haglandc , Numbskull , Liz, or Neck of Steel Cindy

"In his eyes we're all the same Someday we'll all have perfect wings, Don't laugh at me."
"That there's none so blind as those who will not see."

The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
This can vary from person to person, so do not take comments as medical facts or rules

brianferry's picture
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As long as I am at home I

As long as I am at home I can control my pain,

mostly through core exercises, heat pad and relaxation techniques,

what has helped my spondy is the pelvic tilt,

I also take magnesium citrate to relax muscles,

I have sleep issues so In know that if i begin taking meds they will damage my stomach lining,

which in turn will lead to worse sleep,

the natural approach is very difficult,

but it is based on self reliance,

you are in control.

_____________

Be kind for for everyone you meet is fighting a hard battle-Plato.

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