How does one survive chronic 8/10 pain and quickly deteriorating health?

[+ FreshFluff]

As you know from my previous thread, I had a medical problem already and was seeking out surgery. That problem has already caused me a bunch of issues--serious issues. After several months of consults, I finally scheduled both the preliminary surgery (in a few days) and a major surgery with a 6 week recovery.

 

Then, 4 weeks ago, I wake up with what seemed like a muscle spasm. I'd had them since childhood and they always resolve after a few days. This time, it worsened. Finally, I asked for an MRI. It showed that the lower half of the neck (cervical spine) had severely deteriorated. I saw a really good physiatrist today. He basically said, "Sure, I"ll do a nerve block but here's a referral to a surgeon. You can apply for temp disability. Oh, and you just got a prescription for for that famously strong pain medication? You're clearly suffering, so it's not enough. Here's a bunch more.". With an opiate epidemic going on, you can imagine how bad the situation must be to be for him to encourage that. So now I'm facing spinal surgery on top of the original surgery. Spinal surgery is famously risky and can leave you worse off than before--with a damaged larynx or even paralyzed. Everything was relatively ok 6 weeks ago and then bam! My life as I know it is over.

 

When Avalon posted a similar thread, I thought he was pretty young. I'm about two decades younger. I could have eventually accepted being homebound, even bed bound, if that had been my prognosis. I would have been ok with walking around with a walker. (For now, I'm still walking but obviously I need medication for that.)

 

What I can't take is this level of pain, not for long. The medications can barely touch neuropathic pain, and the little relief they give doesn't last. I barely sleep because I'm woken up by pain. I hesitated to post this because I know that others have been through worse. But I could really use support right now.

[rvwnsd]

Oh, my God - I cannot begin to fathom what you are going through. I'm about ten years older than you are and the only thing that comes close is when my asthma flares up. It is scary and causes me extreme anxiety. You must be going through that times one hundred. Perhaps even times one thousand.

 

I hope the new meds kick in and the pain subsides. I'm sending good thoughts and wishes your way and give you my unending support.

 

You must keep us posted.

 

Hang in there the best you can.

[+ bashful]

Please believe we are all supporting you. We'll cry, say a prayer, and listen to whatever you want to say. One moment at a time.

[samhexum]

I wish you all the best. I've had 2 spinal fusions in my neck and had a disk shaved down in my mid-spine. I worried each time about my spine being operated on, but I was lucky... there has never been a problem with my neck (the first one lasted 9 years, then further deterioration led to another 7 years ago). No pain at all.

 

The back surgery was to 'prevent worsening' rather than correct problems. I haven't had any problems from it, but have kept on way too much weight and am very lazy, so I've become very sedentary, and have pain when I stand or walk more than briefly. I sit most of the time, and rarely leave the house (3 of my 4 best friends moved out of state in the last decade). If I were more active, I would feel better and could do more, but feeling as I do, I can't get myself to do what I should. (I'm almost 57.)

 

Sorry for running on, but I wanted to let you know that spinal surgery is scary, but there can be some good results. I would just recommend you do a better job with following up with what the doctor tells you to do than I did.

[+ easygoingpal]

I'm sadden to hear of what you're going through... I've dealt with pain most of my life. Take kindly all advice, we are all full of hope for your well being. May you find strength in this group of friends... May the medications help you with the pain... Hope you have some close friends that can visit you and look after you. All the best.

[+ sniper]

Go to a physical therapist and do your best to avoid making the surgery decision that suddenly. Get multiple surgical opinions.

 

I had something similar with my lower back 18 years ago at age 30. Left leg was numb/weak and my back was constantly at a level of pain where I told the doctor that if you tell me this is just how it's going to be, I would be looking for ways to end my life. For nearly two months I couldn't walk longer than half a block without having to stop, and I was getting at best two hours of sleep a night due to the inability to find a pain-free position. I found all the pain meds did was reduce my anxiety about the pain, as opposed to the pain itself, which it just barely took the edge off. (What I told people was, it still hurts a lot, I just care less about it). I was ready to schedule surgery, then suddenly out of the blue I had a mostly pain-free day. I decided if the pain could go away that quickly, then maybe the surgery wasn't the answer. A second doctor said I didn't have to do it immediately, but I would be lucky to make it to 40 without surgery. I'm 48 now and still haven't had it, and I can run again(though decidedly not as fast as when younger).

[+ sniper]

FYI: If you look at the MRIs of pain-free people, MANY of them will have herniated disks, bulging disks, "disc degeneration." Sometimes what's in the MRI is what's causing your pain, sometimes it isn;t. Good luck.

[Guest]

My heart goes out to you. Have you tried acupuncture or Tai Chi?

[+ FreshFluff]

Thank you so much, @rvwnsd , @bashful , and @samhexum, @easygoingpal , and @sniper. The new meds are fine, but still have a limited efficacy time. I haven't filled his Rx yet as I'd prefer the version that's an extended release, but doctors seem hesitant to prescribe that.

 

@bashful , Thanks for letting me cry. I do that often now. @rvwnsd , asthma can be really scary. I hope that it's not flaring up too much. You are always so supportive.

 

@sniper, I'm glad you got out of this and can still run. That is awesome. I totally agree; For something of this magnitude, I want to get the best surgeon in the country. Unfortunately, MDs tend to refer you to some surgeon at whatever small regional hospital is closest to them. As for PT, I heard traction helps, but you can't do it while the pain is this bad. I think he's right that I will need surgery though. The MRI results look really bad--almost no space between the vertebrae. I totally agree about the pain meds just taking the edge off--and we're talking about the strongest meds that I thought no one would prescribe.

 

@samhexum, thanks for sharing that. It's good to know I'm not alone on the neck issue. Sorry you have pain post-op. That sucks after two surgeries.

[+ sniper]

Something to think about - have the earlier medical issues led to changes in how you move? Like are you walking differently, tending to lean more to one side, etc? A lot of times these little compensations add up over time and then suddenly your body just says, no more. But fixing the movement patterns might address the pain as well as surgery. (and the surgery you are already having might lead you to stop doing whatever was causing the new pain).

[+ sniper]

If you look at the MRI of my L4/L5 vertebra, the space in my spinal canal drops to a diameter less than 10% of the vertebrae above it. Nerve on bone. And that's what it looked like 18 years ago.

I'm just saying you can have a scary-looking picture and be surprised at what you can do. And if I live long enough, I am certain I will need the surgery(bones get thicker as you get older and can't let that 10% go to 0% or I'm paralyzed.

[+ FreshFluff]

Something to think about - have the earlier medical issues led to changes in how you move? Like are you walking differently, tending to lean more to one side, etc? A lot of times these little compensations add up over time and then suddenly your body just says, no more. But fixing the movement patterns might address the pain as well as surgery. (and the surgery you are already having might lead you to stop doing whatever was causing the new pain).

 

I've used an iPad instead of a laptop since December, which definitely strains the neck more. I think I often slept on my stomach with head to one side. I think that's probably what caused it, along with just holding tension in my neck. I now sleep on my back, of course, but of course the horse is out of the barn.

 

Thanks for your last post about the scary MRI results not necessarily being paralyzing. That was my instinct too, but it's been 4 weeks of pain now. After so many "OMG, this is so bad", it's great to hear some hope.

 

If the nerve block works, even a little bit, that will give me time to think and consult. I'm consulting with an anesthesiologist tomorrow just to get a second opinion.

 

 

@Unicorn , Thank you. I may try acupuncture and am considering medical marijuana, which I've never tried.

Edited May 23, 2019 by FreshFluff

[+ sniper]

This is the pillow I used when I first developed neck issues:

https://express.google.com/u/0/product/13535708803343286334_5529323595539327751_5511023?utm_source=google_shopping&utm_medium=tu_cu&utm_content=eid-lsjeuxoeqt%2Ceid-wuakzuqbuq&gtim=CP3-qt-ylv2t_AEQ2aiT2JrPsa9pGNCHmhQiA1VTRCjg09vnBTDvrtAC&utm_campaign=5511023&gclid=CjwKCAjw5pPnBRBJEiwAULZKvpH_qDIUxacg8NzRJLasqMTa9gCAq-jGG2ElCy_-BosEHxGtHSHHchoC1RYQAvD_BwE

[+ sniper]

Also google "cervical nerve flossing" for some pretty easy-to-do exercises of the "can't hurt, might help" variety. Sciatic nerve flossing did wonders for my lower extremity issues, but it took a couple of weeks before I noticed any difference.

[+ Reg]

Very sorry to hear you are in pain. Do you have access to a pain management clinic?

[playwrestler]

Sorry, Fresh Fluff, to hear you're going through so much pain. I've spent most of my adult life in physical therapy -- I'm religious with it! -- and it has taught me the recuperative powers of the human body. Of course nothing is ever going to be perfect... but I've learned to redefine pain in very beneficial ways. A year ago I fell and herniated a lower disc and I thought this time it was the end -- the pain was unbelievable -- and yet with small increments of movements and working with a great physical therapist ('great' is the one who works for you... they're all different!) it's now 9 months later and progress has been made. I'm in my late 60s and I know that it would have been quicker had I been younger... but 2nd, 3rd and 4rth opinions are good... and a great physical therapist is the best. I'll keep you in my thoughts!!!

[+ not2rowdy]

There have been some amazing advances in spinal treatments in recent years. I encourage you to get a second and third opinion. Talk to spine specialists. Below is an article that might be of interest. In the article is a list of hospitals that may have the specialists you need.

 

https://health.usnews.com/health-care/for-better/articles/minimally-invasive-spine-surgery-what-to-know

[Chris1976]

It's hard I know I've been sick for a while. I was involved in a fall in late 2014 that resulted in chronic pain daily due to neuropathy and later on essential tremors. also diagnosed with severe disc degeneration disease of the thoracic spine. saw a neurologist and he pretty much made things worse. He prescribed clonazepam for the tremors. I had never taken any medication on a regular bases and had no clue what benzo was. Just that it would make the tremors go away. I started at .5 and 4 years later it was up to 2mg day, started getting sick all the time, muscle pain, joint pain internal tremors, loss of balance. I was clueless to the dangers of benzos. He had me on this medication for 4 years then I made an appointment with another doctor, that's when I found out about tolerance wd, benzodiazepine wd syndrome found out that benzos aren't recommended for long term use of more than 4 weeks. Found out that 70% have no side effects or negative reactions while 30% suffer negative side effects. this medication ruined my central nervous system. It took me 18 months to slowly taper that garbage out of my body with horrible side effects. The last dose was 3 months ago and still req a cane to balance, skin burns like it has lighter fluid poured on it and set on fire. 3 to 5 days at a time with no sleep. one suicide attempt halfway through the taper due to the physical pain. I find it hard to trust doctors any longer so I've had no medical care in over a year

Edited May 23, 2019 by Chris1976

[samhexum]

saw a neurologist and he pretty much made things worse...

this medication ruined my central nervous system. It took me 18 months to slowly taper that garbage out of my body with horrible side effects. The last dose was 3 months ago and still req a cane to balance, skin burns like it has lighter fluid poured on it and set on fire. 3 to 5 days at a time with no sleep. one suicide attempt halfway through the taper due to the physical pain. I find it hard to trust doctors any longer so I've had no medical care in over a year

 

Again, I offer my best wishes. Thank you for sharing about your experience.

[+ Charlie]

I am very sorry to hear what you are dealing with. Unfortunately, all I have to offer is sympathy.

[Rudynate]

I've had 2 spine surgeries. Both surgeries were to treat sciatic pain. I know what that pain is like-it rots you. You feel like your life is over. I've been a patient in a chronic pain clinic. The surgeries worked for me. My last surgery was a multi-level lumbar fusion. The recovery was a a mofo. The initial recovery takes about six months, but a full rehab took about three years. But it was worth doing. I feel great most of the time.

 

Before the surgeries, in order to live with the pain, I took a lot of opiates and I had many epidural steroid injections. There was one point that I was looking into an intrathecal morphine pump that delivers a constant drip of morphine directly to the spinal canal.

[+ WilliamM]

When Avalon posted a similar thread, I thought he was pretty young. I'm about two decades younger. I could have eventually accepted being homebound, even bed bound, if that had been my prognosis. I would have been ok with walking around with a walker. (For now, I'm still walking but obviously I need medication for that.)

 

You were very kind to Avalon even when he was somewhat annoying. I am glad people here are being even kinder to you.

 

I am just seeing this for the first time. My prayers are with you. Yes, please let us know if there is anyone we can help

[Rudynate]

You have to have supportive people around you. My partner was a god send. I was almost completely homebound. He did all the shopping, chores and errands. He thought of ways to get me out of the house occasionally. During that time, we went to museums a lot. We would get a wheelchair and he would push me around in it. It's actually a great way to see a popular exhibit. People see a wheelchair coming and they get out of the way.

 

I occasionally had to travel, which was tough. I would pay the extra money for economy plus or business class and I would use wheelchair attendants and advance boarding. I would rent big luxury cars that were really comfortable.

[OneFinger]

... am considering medical marijuana, which I've never tried.

FreshFluff, I'm so sorry to hear of your problems. But, instead of medical marijuana, have you considered CBD oil? CDB comes from hemp but does not have the "high" affects of marijuana. My nephew swears by it for his diabetic nephropathy. It comes in drops, beverages (here in Portland they're sold at the liquor stores), and lotions. SeeBeDee (https://seabedee.org/) is the site I've been looking at and they have a wide variety of products - especially one for joint and muscle pain.

 

Since Thanksgiving I've started developing some serious mobility issues. It started when I lost strength in my leg muscles and couldn't get out of a chair without extreme difficulty. Then my hands started shaking so bad I couldn't use a mouse or type. Then I got Foot Drop in my right foot. In short, that is similar to my foot being paralyzed from the ankle down. I now have a foot brace. I also had to stop using my sneakers and switched to my steel-toed work boots which provides more support for my ankles and a very non-flexible sole.

 

Ten days ago my physical therapist and 2 doctors (all seen on the same day) independently told me that I could no longer function with a cane and needed to use a walker. They also all told me to stop driving. So, I've been home-bound and have been working hard on the exercises from the physical therapist.

 

Like I said, my next option (in addition to continuing my medical tests / visits) is the CBD oil. From what I've read it has provided help and support for people with a variety of ailments.

 

Please, keep us advised on your progress. I'd explore all options before agreeing to surgery. I firmly believe in physical therapy, chiropractic massages, good diet, holistic options and similar things before surgery.

[+ FreshFluff]

I got a second opinion from an anesthesiologist today. His spin was slightly more positive. He told me, yeah, this usually happens later, but this case is not two standard deviations out. He sees younger people all the time. Recommended that I try prednisone and traction first, then do the injections if that doesn't work. . Also, I was upfront and asked him, "We're talking about my neck here. I want to go to the best person nationally. If Bill Gates had this problem, where would he go?" He gave me both local and national recs. He also agreed with @sniper and said, "The fact that the MRI looks scary doesn't mean anything. Your right side looks bad too and it's unaffected." Even said that while he does the injections one way (translaminally), it might make sense to take the slight additional risk and do it the riskier but more effective way transforaminally (from the side). I'm trying to decide which is less scary: Oral prednisone (acne/weight gain, yuck) or the nerve block injections into the neck part of my spine.

 

Thank you @Rudynate @playwrestler @WilliamM @Reg

 

Rudynate, You get it. If a wheelchair would help, I would do it. The weird thing is that walking around is often better than sitting up on a straight-backed chair. Yes, whenever I can travel back home, I will definitely get a flat-bed seat. I was in real trouble on a flight recently (due to the first issue) and sat there, looking at the flight attendant, wondering whether I should have the pilot ask an EMS crew to meet me at the gate. I decided that they'd look askance at that for anything that wasn't life threatening and took an Uber to the ER from SFO.

 

William and Charlie, thank you. Truly. @not2rowdy Thanks, I will take a look at the US News list.

 

@OneFinger, Again, I'm glad you're working hard on the PT. I hope it works out. The physiatrist recommended CBD too. I'll look into it. The second guy was like, "Smoking marijuana isn't going to help you."

 

@Chris1976 , I know exactly what you mean about the pain. I am thinking of you and hope you find relief soon.

 

@playwrestler , I'm glad the PT worked out for you! That is a great outcome.

 

I know there are several people I have forgotten but I am a little tired and prepping for surgery tomorrow. About to take a second dose of a drug that caused serious abdominal pain but stiffens up the organ to avoid puncture. Good thing I'm on pain pills already.

Edited May 24, 2019 by FreshFluff