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Johnnyb

Fighting digenerative spinal diseases

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Johnnyb

Pain. My daily life ! Learning a balance has been hard. Kratom has worked in large part but I think I need to step it up with muscle relaxers and possibly some stronger stuff. If my back goes out I can’t work for days . The pain can be so excruciating some times all I can do is sit And scream silently lol. Stretching and excercising helps a lot but it’s just not enough and that’s just the way she goes

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Johnnyb

What do others do for pain management?

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Johnnyb

What do others do for pain management?

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Nitetrain

what Have you done so far?  If you’re able to exercise and work your at least ambulatory. 

Its no picnic but maybe share other options you’ve tried?

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RubyRed

I've known about my scoliosis since I was a kid but just found out I have degenerative disc disease and two types of arthritis in my back, one being severe. I've had blood tests and x-rays but I'm waiting for a full spinal MRI. After I have that test I'll be seeing a rheumatologist and back pain specialist. My general care practitioner has prescribed me a mild muscle relaxer, anti-inflammatory and some Tramadol which has helped a tad but it's all just a bandaid on a big, gaping wound. For years the pain was like background noise I was able to tune out but in the last several years it's accelerated quite a bit. I guess age will do that!

I know I should get myself back to the gym to swim laps again but I've been super busy with work lately. The pain makes it hard to concentrate. Swimming does help, though. So does hanging upside down on my inversion table. 

I know someone with similar arthritis who gets cortisone shots in her spine and they help her a lot so I'd like to find out if I'm a candidate. I'd also like to meet with a physical therapist to find out what the right exercises are for me so I can strengthen my torso and reduce my pain. I hope one of my doctors refers me to one so insurance will cover at least some of the cost. I hear they can be expensive. Even if we only meet a couple of times and I get a list of exercises to do, it would really help.

I'd be happy to keep you updated on what sort of treatments I'm given and how they work out for me!

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Jhardi36

Hi! I'm Jessica. A little about me... I'm 36 yo and married for almost 5 years. I'm a Registered Nurse for 5 years now. I have a 3 year old and 19 month old.

I have DDD and DJD. Everyday is a struggle... especially working as a nurse in a hospital. I'm on a muscle relaxer called Tizanidine. I take them at bedtime, though, as they make me fall asleep during the day. I'm on Oxycodone HCL (short acting). I'm also on 300mg Lyrica for the nerve pain.

My back pain started when I started band at age 11. It was my Right shoulder blade that hurt. I was diagnosed with scoliosis at age 13. I got a physical for cheerleading and the doctor left the room and came back in and as a last second thing wanted me to bend forward to check for scoliosis. Yeah, my spine is shaped like a backward "S" and it has rotated (twisted). I was in gymnastics as a teen. In my early 20s I could no longer do a back bend.

Fast forward to 2006... I had a breast augmentation in May. I think that started it all, tbh. I went from a AA to full C ( surgeon's recommendation... I wanted a B cup). Each breast weighs 1 liquid pound. So from absolutely nothing to 2 pounds.

In September 2006 I lifted something waaaaay too heavy without help. I immediately felt fire go from my lower back down left leg to foot. It. Was. Hell. I herniated L4/L5. I was given steroids. It went away. 

In November 2006 I lifted something minor that shouldn't have hurt me, but nope! Immediate fire again. I herniated L5/S1 and the L4/L5 herniated disc flared up. The fire going down my left leg and foot was sciatica. I was given steroids and they did nothing. From November 2006 to July 2007 I had sciatica 24 hours a day. It was so bad I thought of killing myself. I cried myself to sleep every night. I made things so inconvenient to my friends. We'd go out and I could not stand or walk for more than 3 minutes before I had to sit down. I was seeing an orthopedic. He wanted me to do a cortisone injection and I did. It worked for 3 days and the pain all came back.

One morning in July 2007 I woke up and went to get breakfast and when I got to the kitchen I realized the pain was gone. It was a glorious day!

Then September 2008 came. My bf at the time and I had been drinking. We got into a fight. I was supposed to stay at his house, but he locked me out. I was way too wasted to drive so I slept in my car. I. Woke. Up. SCREAMING. I'm talking the most horrific pain ever. I screamed the entire 15 minutes home and literally climbed on my hands and knees up 3 flights of stairs to my apartment. The loser ass bf took me to my orthopedist. He told me to lay on the table and raise 1 leg. I tried and literally screamed out loud and cried. He sent me immediately to his partner, who was a surgeon.

He wanted to do surgery the next day, but I was on birth control pills and have Factor V Leiden (blood clotting disorder) so he wanted me off the BC for 2 weeks then he'd do the surgery. He prescribed Percocets. It was an awful 2 weeks. I couldn't stand for longer than 30 seconds at a time. Sitting on the toilet was torture. I couldn't stand to shower so I'd lay in the tub with the shower going and wash what I could and just scream and cry. I had a friend then who went to the store and bought me cereal and items I could hobble to the kitchen and make quickly and gobble back to my bed. I could only lay in bed. I couldn't sit or stand or I'd scream, literally. 

Then 3 nights before the surgery I hobbled out onto my porch to smoke. I'd lay on the loveseat and smoke lying down then hobble back to bed. Well, anyways, I got up from the loveseat and 90% of the pain was gone, but the outerhalf of my left leg and 3 outer toes were "numb." Severely diminished sensation to touch.

I went ahead with my first back surgery on 10/29/2008. I had a microdiskectomy with laminectomy on L5/S1. I never told my surgeon the pain went away or that my left leg was numb. I'd have these things that felt like jolts of lightning shoot on the side of my foot. It was like I had Tourette's... it took all I had not to curse, yell, or scream. 

I will continue the rest in another post.

Edited by Jhardi36
Needed to add what surgery I had & the location of the surgery
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Nitetrain

Jhardi36 what’s the rest of your story?

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RubyRed

Jhardi36, thanks for sharing all that! Was the info about your surgery included when you edited your post? I'd like to hear any updates if you have them.

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Deb1960

Hi johnnyb I as well have degenerative disc disease along with spinal stenosis. What ever you do don't have back surgery for it. I had back surgery with the promise that I would be back to work in 3 months. Well I ended up disabled instead. I have 2 rods screws and bolts and some crazy metal mesh holding the bottom of my back together. After that I needed discs replaced in my neck with plastic ones and another rod with screws and bolts in that as well. After that I needed my left hip replaced at that time I was walking around with no hip in so much pain and had no idea why. Then I needed and had my right hip replaced. That was done in 2016. They couldn't get me to wake up after that surgery. I was a goner and don't know what woke me up but I'm just grateful that it did. So was the surgeon. Now I need my left shoulder replaced but I'm scared to death and don't wanna go have another major surgery. I'm in pain management but the government took over and the pain Dr's are only allowed to give us so much medication. It goes by numbers. So if your numbers are high on pain management your shrink has to take you off what he gives you to help you cope with all this craziness. On top of all of this my spine has slipped off my pelvic bone 13mm and I can no longer stand straight up. So I feel what you're going through. I found this site by fate cause I wasn't even looking and there it was. I spent a lot of time reading so I make no mistakes but if you read you will find what you're looking for. 2earls  was fantastic at helping me as well!

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Jhardi36
On 6/9/2018 at 2:53 AM, Nitetrain said:

Jhardi36 what’s the rest of your story?

So sorry! Life is crazy. As stated my 1st back surgery was 10/2008. Things were fine. I went about life... have a flare here and there, but nothing major. After I had my 1st child in 2014 everything went to shit. In January 2017 I began having neck pain, slight weakness in my hands, and the back of my neck was numb. I went to my orthopedic surgeon. He did an xray and gave me a Rx for prednisone, told me to stop taking pain meds, and basically wanted me to go away. I insisted on an MRI. He reluctantly agreed after I convinced him. I'm so damn glad I did. His office calls me the Monday after my MRI resulted wanting me to come in right away. I did and he has this serious look on his face. I knew it wasn't good. He said my only option is surgery. I was fine with that, but fuck him! I went to a neurosurgeon and he said the same thing and that he was afraid I'd trip and become paralyzed. So I had a C5-6 ACDF. Less than a month before I had hurt my back pushing a ventilated patient (I was an ICU nurse then) to get a STAT CT of his head and the bed's steering mechanism was broken so I had to push it with my body. Next day I could not hardly stand or walk. So 8 weeks after my neck fusion I had another microdiskectomy and laminectomy with foraminotomy (on L4-5 this time). I was up walking the stairs and around the block the next day. I felt amazing! The recovery from my 1st back surgery was the worst pain I've ever been in, but this surgery i immediately felt so much better. 

Then 6 weeks and 3 days after my back surgery I was racing down my stairs in flipflops and they caught on the carpet and I fell forward down the last 5 stairs, landing hard on my stomach. This is when the pain really began... because this time there was no surgical fix. I had to deal with it. Was sent to a pain center in July 2017 and I've been there every other month since. 

So on Nov 23rd, 2018 we had just drove from my husband's family (3 hours away). We got there on Thanksgiving and drove back the next day. I was straightening out the kids' tree when my whole body hurt. So I went up and got in bed. I'm laying/sitting there and all of a sudden....

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Jhardi36
Posted (edited)

My bilateral index fingers and thumbs went completely numb. I start freaking out and the nurse in me told me to stand up and walk around. The numbness lasted an hour and 10 minutes. So I ended up being sick the next day (Saturday). Sunday we drove 4 hours away to a cabin in the mountains. We went to the store before checking in. So here I am super fucking sick and putting away groceries and our stuff we packed... then it happened again... the numbness in my bilateral index fingers and thumbs and neck pain. I did what sounded good... a scalding hot shower where I let the water fall right on my neck. Within 5 minutes the numbness went away. This happened again 2 more times that week. Looking at the dermatomes that go to the index fingers and thumbs it appeared I was having a problem with C6-7. My pain doctors agreed and ordered MRIs. Here are my results:

CERVICAL

C3-C4: disc spurs

C4-C5: bulging disc

C5-C6: bulging disc (my fusion spot... I thought the disc was removed when I had my ADCF... so I'm confused about this)

C6-C7: bulging disc with spinal stenosis; Cyst on my spinal cord from C6-C7 through C7-T1

~•~•~•~•~•~•~•~•~•~•~•~•~•~•~•~•

 THORACIC Dextroconvex scoliosis (S-shaped) with apex at T-8 level (I've known this for 24 years...)

T3-T4: Bone spur on right side ~•~•~•~•~•~•~•~•~•~•~•~•~•~•~•~•

LUMBAR

L4-L5: bulging disc with tear in the disc; foraminal stenosis

L5-S1: scar tissue; bone spurs on left and right side

Edited by Jhardi36

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Jhardi36

The MRI was January 27th, 2019. I was having a lot of weakness in my hands... dropping everything because I would just not feel that I was holding anything. The neck pain (then) was mainly on the left of my neck going down to my shoulder/humerus joint down to mid-humerus. It was a constant burning ache. I couldn't NOT think about it. The numbness in my index fingers and thumbs would come and go. I told my neurosurgeon. They requested my MRIs and made an appointment for me in 2 weeks. The day before my appointment I missed a call from his office stating they were canceling my appointment because there was nothing they can do surgically. I informed my PCP of the weakness, pain, and numbness and they did an urgent referral to another neurosurgeon. That was a Thursday and my appointment was the next Monday. The PA comes in and tells me they don't see on my MRI what explains my symptoms and he suggests a neck injection, a CT to see if it's an issue with the bone or fusion hardware, and an EMG to see if maybe I'm just fucking stupid and it's carpal tunnel. So I went for the CT on March 7th, 2019. Here are the results:

C3-4: Mild right uncovertebral joint bony overgrowth (osteoarthritis), minimal right foraminal stenosis. No central canal or left foraminal stenosis

C4-5: bulging disc causing mild spinal stenosis, bone spur causing minimal right foraminal stenosis

C5-6: endplate and uncovertebral joint overgrowth (osteoarthritis) with mild spinal stenosis and minimal bilateral foraminal stenosis. Hardware is intact and in good position. Incomplete osseous fusion

C6-7: osteoarthritis, small central disc protrusion (herniated disc) causing mild spinal stenosis, Mild disc height loss (degenerative disc)

The PA messaged me saying the EMG is needed to specify where the pain is stemming from. Insert the "are you fucking kidding me" face. 

Let me repeat:

C6-7: osteoarthritis, small central disc protrusion (herniated disc) causing mild spinal stenosis, Mild disc height loss

Some Google knowledge:

Stenosis refers to a narrowing of the spinal canal to a degree where the spinal cord or nerve roots may be compromised. Spinal stenosis may occur throughout the spine but is more common in the low back, however is more dangerous in the neck due to the presence of the spinal cord. It can cause permanent spinal cord injury. Myelopathy occurs from spinal stenosis that causes pressure on the spinal cord. If untreated, this can lead to significant and permanent nerve damage including paralysis and death. The symptoms of cervical spinal stenosis may include the following: •Neck pain; not always severe.

•Pain, weakness, or numbness in the shoulders, arms, and legs.

•Hand clumsiness.

•Gait and balance disturbances. •Burning sensations, tingling, and pins and needles in the involved extremity, such as the arm or leg.

•In severe cases, bladder and bowel problems.

•Although rare, severe cases can also cause significant loss of function or even paraplegia.

There are a number of common spinal conditions associated with neck and back pain that are related to the development of bone spurs, including osteoarthritis, cervical radiculopathy, lumbar radiculopathy, and spinal stenosis.

The difference between a central disc protrusion and other standard bulging or herniated disc is that in central disc protrusion, the disc herniates or expands posteriorly or backwards into the middle of the spinal canal where the spinal nerve roots and spinal cord is present; whereas, in other disc herniation, the disc expands to either sides or forwards. In central disc protrusion, if there is compression of any of the nerve roots, then it produces serious symptoms in the patient.

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Jhardi36

To me... and I'm not a young, cocky ass PA... I'm not an MD... I'm a nurse, but I know my body and I do research and ask questions. 

To me... my symptoms CAN be explained by everything mentioned in the MRI and CT. I saw the pain doc 2 days ago... he agrees. He also agrees with me that things are getting worse from the MRI on Jan 27th and the CT on March 7th. I'm getting a neck injection on Tuesday. He said the surgeons will want me to try at least 1 before surgery. I explained to him that I'm concerned because:

1) the pain has been going on for 4 months (as of March 23rd)

2) the pain is getting MUCH worse and doesn't go away

3) the weakness is more frequent 

4) I don't want to wait too long (like with my leg with the 1st back surgery) and have permanent nerve damage. I'm a nurse... I need to feel my hands

He agreed.

So that's where I'm at as of today. Fucking miserable!

Oh! And my back pain never went away from falling down the stairs (1.5 years ago), but they're calling it post-laminectomy syndrome. My neck is about a 9/10 pain every day. My back is about a 5 or 6... or maybe it doesn't feel as bad as it did because the neck pain is so much more intense... I dunno. I'm just sick of pain.

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Jhardi36

Update on my meds though...

My depression from the chronic pain and not being able to live a normal 37 year old life is severe. I was diagnosed with major depression in 2017. I was put on Cymbalta as a twofer, but it did nothing for my depression or my pain. I was started on Lyrica 150mg almost immediately after my fall in 2017. It was then increased to 300mg daily. They actually even tried to increase it to 450mg daily, but I never increased it.

Due to cancellations on the office's part, I wasn't able to see my psychiatrist for over a year. My anxiety was so bad last April that I was imagining horrific, and unrealistic, shit happening 24/7. My depression got so bad I was thinking about suicide everyday... just thinking how I'm tired of the pain, tired of being tired, tired of being a shit wife and mom, being a failure... that my husband and kids would be better off without me. I finally saw her last month and she said Lyrica actually worsens depression and anxiety. The pain center told me Lyrica was probably what was causing my anxiety, but didn't mention depression. It just makes sense that my depression worsened when I started taking Lyrica and got even worse when the dosage was increased... same with the anxiety. I've always had social anxiety, but not the shit I was picturing in my head. So my psychiatrist wants me to wean off the Lyrica completely. I was taking 2 capsules daily and now I split one open and take 1/2 daily. It really does work for nerve pain because I can feel that more since I've tapered down. I also read a study that said Lyrica causes brain damage and that if you're on Lyrica or gabapentin to think about getting off of it. So I'm on Wellbutrin XR now. 300mg in the morning right now. Started at 150mg daily for 2 weeks and then moved up to 300mg as ordered. The energy I have is amazing, but with energy comes movement and with that comes pain. I can't win!

Either the pain is manageable and my mental health is shit or I have energy and feel better mentally but the pain is horrendous. 

Just wanted to add the meds part since this is one of those forums. 😂

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Nitetrain
Posted (edited)

So speaking of degenerative disc disease lets just say I pray you all find your way to the best treatment and least amount of pain possible. This  was done at one of the best medical institutions in the US, and yet I second guess my decision every day.  I’m grateful for DBG because you all know the minimum amount of relief even a sympathetic dr. can provide. Without you and our friends I’d be far worse off!  Next best hope is intrathecal pump which has a long list of problems.  Thanks to everyone who subscribes to the many magazines and to the publishers who provided excellent reading material to get my mind off my situation. Good luck to everyone!

 

 

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Edited by Nitetrain

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