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Old 04-27-2012, 11:04 PM   #16
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Re: Ready to say "screw it" to ALL dr's!

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Originally Posted by Realhousewife View Post
The surgery has to be deemed "medically necessary" in most cases which means you have exhausted all the conservative treatments and nothing has helped and the only way to make you better is to perform surgery. Having pain is not considered medically necessary unless it is intractable like mine was after months of conservative treatment. Other factors include a central compression which is causing progressive mylepathy and the loss of bowel and urine control.
My mri says my spinal cord is draped over a bone spur compressing my spinal canal to 7-8mm. I PRAY every minute that there is a fix BESIDES surgery! What do you think?

 
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Old 04-27-2012, 11:05 PM   #17
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Re: Ready to say "screw it" to ALL dr's!

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I'll definitely be trying to get something accomplished on Monday. I've never had vicodin or percocet, all I've ever had is Tylenol #3 (the ONE pill a day my old doctor allowed me). I DO need a referral to the pain management dr. I live in a medical marijuana state too, don't really have an interest in it until they work out all the bugs as far as the legalities of it goes. Seems like it's legal for medicinal purposes, but really not, if that makes sense.
Vicodin and percocet can cause constipation so drink a lot of water and increase the fiber. Or you could just take some stool softeners.

After your surgery they give you them and laxatives. I refused them but I had no problem moving my bowels after the surgery so it was no big deal. They'll also make sure you're up and about a couple hours after surgery but in my case it was the next morning which irritated me. Walking is the best thing after surgery so when you feel like it WALK! Plus, being outside in the sun is a good way to combat depression. They say just 15 minutes of sunlight a day will do it. I don't know what it is about the anesthesia but boy, it can really cause depression!

 
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Old 04-27-2012, 11:17 PM   #18
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Re: Ready to say "screw it" to ALL dr's!

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Originally Posted by kenzibenzi View Post
My mri says my spinal cord is draped over a bone spur compressing my spinal canal to 7-8mm. I PRAY every minute that there is a fix BESIDES surgery! What do you think?

I don't know-I'm not a doctor, LOL! My bone spurs were just irritating the nerves-it was the two herniated disc compressing the spinal cord that made all the difference with me.

It's going to really depend on the surgeon and what his report is and what your insurance company decides. I don't have insurance but the program I am on says they pay for surgery when it's medically necessary. My records have progressive myelopathy and intractable pain.

Just having the progressive myelopathy is a reason for surgery before conservative methods are tried. That didn't start until the days leading up to my surgery. My hands and legs became so heavy and I lost some strength in my arms. Until then it was mostly sensory and pain. Weird how fast it started to get worse. Since your spinal cord is being compressed by the bone spur I would imagine it puts you at risk for myelopathy too.

It's too bad you don't have a picture of your MRI to share. I find them interesting.

 
Old 04-27-2012, 11:26 PM   #19
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Re: Ready to say "screw it" to ALL dr's!

If by myelopathy, you mean burning, tingling (back of shoulder), shooting pain (neck)...got it! Thumb, index and middle finger sleeping when i do, they wake up if i get up out of bed. Also have weakness in upper arm, bicep? (inner between elbow and shoulder) Also having right leg problems, muscle just feel tired and a little weak. been constipated forever, but it could be my thyroid, I have Hashimoto's. I think that's it. I need sleep now. Thanks for all the info, it's very helpful! Have a great night!!!

 
Old 04-27-2012, 11:38 PM   #20
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Re: Ready to say "screw it" to ALL dr's!

Quote:
Originally Posted by kenzibenzi View Post
If by myelopathy, you mean burning, tingling (back of shoulder), shooting pain (neck)...got it! Thumb, index and middle finger sleeping when i do, they wake up if i get up out of bed. Also have weakness in upper arm, bicep? (inner between elbow and shoulder) Also having right leg problems, muscle just feel tired and a little weak. been constipated forever, but it could be my thyroid, I have Hashimoto's. I think that's it. I need sleep now. Thanks for all the info, it's very helpful! Have a great night!!!
The burning, tingling and shooting pain is radiculopathy. Myelopathy is when the spine is being compressed and some symptoms are:

Heavy feeling in the legs
Inability to walk at a brisk pace
Deterioration in fine motor skills (such as handwriting or buttoning a shirt)
Intermittent shooting pains into the arms and legs (like an electrical shock), especially when bending their head forward (known as Lermitte’s phenomenon)
Arm pain (cervical radiculopathy).

When you have both they call it myeloradiculopathy(which is on my post op report)

The bad thing is that sometimes it is irreversible. I still have pain in my left arm and have some loss of strength too.

This has been a learning experience for me, LOL! Before this happened I had no clue what any of it was. I've spent a lot time doing research.

 
Old 04-28-2012, 03:45 AM   #21
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Re: Ready to say "screw it" to ALL dr's!

After reading your posts I can't imagine what all you have been through and just how serious this all is. I'm not sure i would be able to cope as well. I admire your courage though and the fact that you have done so much research into this disorder. It is such a benefit to all of us who are learning as we go.

I mean this for everyone. You all seem so brave.

 
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Old 04-28-2012, 09:22 AM   #22
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Re: Ready to say "screw it" to ALL dr's!

Oh Kenzi, that really sucks. I read this board with interest seeing the differences between the US and the UK, you guys have much more choice about surgeons etc and while the UK feels like the waiting lists are endless and we are kept like mushrooms (in the dark, plenty of manure) as far as getting information on our conditions (I *still* haven't seen my MRI report, though I did see images at my last surgeon appointment...I at least can have pain medicine when I need it, I don't know what the US names are for them but I have omeprazole (stomach liner) to let me take the Ibuprofen, and I also have codeine, tramadol and diazepam pretty much on request, I've also been offered amitriptylline but was concerned about the urine retention (I already have that as a sideline of the myelopathy). I do have progressive myelopathy from my disc prolapse and that's what is warranting the surgery so quickly....though very scared, I still can't wait to have this all over and done with! I hope you get some pain relief soon, xxx

 
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Old 04-28-2012, 10:33 AM   #23
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Re: Ready to say "screw it" to ALL dr's!

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Originally Posted by kenzibenzi View Post
If by myelopathy, you mean burning, tingling (back of shoulder), shooting pain (neck)...got it! Thumb, index and middle finger sleeping when i do, they wake up if i get up out of bed. Also have weakness in upper arm, bicep? (inner between elbow and shoulder) Also having right leg problems, muscle just feel tired and a little weak. been constipated forever, but it could be my thyroid, I have Hashimoto's. I think that's it. I need sleep now. Thanks for all the info, it's very helpful! Have a great night!!!
Kenzi, my thoughts and prayers go out to you. I know it is frustrating for you but I will pray that you finally get a dr who is understanding, sensitive to all the pain you are going through so you wil finally get some relief. Take care.

 
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Old 04-28-2012, 10:42 PM   #24
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Re: Ready to say "screw it" to ALL dr's!

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Originally Posted by Realhousewife View Post
You live in New Jersey and it is humid which I suspect doesn't help those aches and pains.

You sound like someone with a positive attitude which I believe helps with the healing process.
Yes, it's very humid here in the summer. The weather really affects how I will feel for the day.

Absolutely, you need to have a good attitude, it does make the healing process run smoother. I've never been one to let things get me down, life's too short, grab what you can and run with it.

 
Old 04-29-2012, 06:17 PM   #25
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Re: Ready to say "screw it" to ALL dr's!

So Kenzi....I finally caught up on your last post of the changes in the MRI and your current frustrations with no pain meds. NJlady explained why the problem with the pain meds...the feds are watching every doc so carefully that many just won't give you anything. But when you are in bad pain...it is so FRUSTRATING!. Do call a pain management doc or clinic.

On your neck...let's talk about cord compression down to 7-8mms. The norm for a woman is about 10-11mms so your cord has been compressed by 3-4mms. Some docs will want to do surgery ASAP and others will tell you that you can go much more compressed based on your symptoms. I learned a valuable lesson about this.

My cord was down to 5-6mms at C6 and 7-8mms at C5 and 4(and I think 3 too).The first doc I saw was an ortho spine surgeon who recommended epidural cortisone shots.....tried one and never went back...made it much worse. So I went to my old neurologist and ask for her help finding a good doc if I needed surgery and she said I needed surgery yesterday in her opinion. So she sent me to the newest doc just brought into her hospital in Boston....supposed to be a hotshot. Got a 9am appointment within a week. Well, I was out the door and told I didn't need anything within 15 minutes of seeing him. I had made 2 HUGE mistakes...1) I told him I had mental health problems and 2) I was usually pretty okay in the AM...it was by late afternoon that I could barely walk. He said I could go down to 3-4 mms and still be okay.....idiot. Kept telling me my symptoms were from my RA or I was exaggerating due to my emotional problems.

So she sent me to the doc she normally sent people to....the guy I still see. But I made sure I had a late day appointment and kept my mouth shut about my mental health problems. I made sure I had a busy day before going to Boston so that I arrived with all the symptoms I usually had in full "glory". Numbness, staggering gate, at times I could only take baby steps, stiff barely functioning muscles in my legs and numb hands. I had no pain....I was too far gone.

Result...I was in surgery 4 weeks later.

Moral of the story...make sure whoever you see, that you try to go in at the time of the day when your symptoms are at their worst so they see what you are suffering from.

There is a surgery called a laminoplasty that can fix your neck from the back but I bet most would suggest the easier ACDF as it's mainly 2 levels that have problems.

Just be aware that pain is actually a good sign....means the nerves are still working. And spine docs don't care about your pain..pain to them is a good sign. The want to know about numbness and muscles that don't work right or reflexes that don't work properly or pins and needles and tingling...songs the cord is being affected. The fact that the cord is showing no damage means you will probably have a full recovery but you can have the signs of impending damage that means they need to do something now. And pain is not one of them.

I know you need pain meds but just be aware that the spine surgeon won't care too much about your pain. And most will NOT give you pain meds. And whether or not they do anything about your neck will be determined by the symptoms in your legs and lower body....including if you find you have pee all the time as if you can't hold it and same for bowel movements...like I knew I couldn't wait an extra second once I got that urge to have a movement...that is another sign of a cord in trouble. I had the urine troubles too but had blamed that on 2 big babies and long labor stretching everything and turned out to be my neck!

I always tell people to notice the weird stuff and write it down so the doc can know what you are experiencing. Pressure on the cord can bring on some strange symptoms and if you want a list....I'll be glad to share everything I experienced and what other docs had attributed the problems to...it was amazing that no one put it all together!

Hang in there.

hugs.............Jenny

 
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Old 04-29-2012, 06:43 PM   #26
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Re: Ready to say "screw it" to ALL dr's!

Jenny, THANK YOU!!!!!

When I say pain, I mean the tingling sleeping feeling in the upper back shoulder from spine to shoulder, drives me NUTS! And when I move my head to the right it pulls in my back where the tingling is, that hurts like I'm stretching it. I do have trouble with my right leg (upper thigh) muscles, always tired and achy when I walk, feels like I just can't make it another step, but I always do. I push myself VERY HARD every day to keep moving! I never stop moving, I'm scared too! Don't know if my leg is bad because of my spine or not, or if my constipation is because of the spine. I take stool softeners and drink water, but you would still think I am giving birth trying to have a bowel movement.

I'm scared in general about the whole 7-8mm thing. I really AM scared. Who will take care of me? I spend my days taking care of others! I'm scared of surgery!

And YES... I learned A LONG TIME AGO to NEVER tell a doctor that something is bothering me emotionally...they blame everything on that!

I have a few questions:
1) if the bone spur is on the right side, why is all the tingling on the left?
2) when they remove the bone spur will they want to fix the C5-6 that are squished together? I was hoping to just have the bone spur filed off and be on my merry way...lol

Also... I can get up and walk around and the tingling in the upper back shoulder will stop. It starts back up again when I sit down. I REALLY concentrate on my posture, but can not find a position to make it stop unless I stand up. So I don't know if this makes my situation any less important or not.

Thank you for responding. I really appreciate it! I hope and pray you are doing well today! ~Hugs, Kenzi.

 
Old 04-29-2012, 06:47 PM   #27
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Re: Ready to say "screw it" to ALL dr's!

ALSO.... I use a glider which has helped my hip pain greatly. Today when after I used it I noticed the bottoms of both of my feet felt as if they were sleeping. Any connection to the spine, or were they just tired of gliding?

 
Old 04-29-2012, 07:01 PM   #28
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Re: Ready to say "screw it" to ALL dr's!

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Originally Posted by kenzibenzi View Post

I have a few questions:
1) if the bone spur is on the right side, why is all the tingling on the left?
2) when they remove the bone spur will they want to fix the C5-6 that are squished together? I was hoping to just have the bone spur filed off and be on my merry way...lol
I think the problems are on the other side of the actual bone spur.

I'm going to tell you something. It took MONTHS before I had the surgery after the problems surfaced. Jenny is right-they will NOT do surgery if your only symptom is pain. I had to try all the conservative methods. It wasn't until a week before my surgery in January when I was diagnosed with progressive myelopathy. Before the surgery(that very same morning) my NS did a few neurological tests and I had lost some strength in my wrist extenders. That WASN'T there the week before-I just had some signs of nerve impingement. When I saw him in December my only problems were the pain and some sensory loss. So these things can creep up on a person fast.

It's really going to depend on the person you see-if he's the conservative type when it comes to treatment he might want to try the conservative methods first. Surgery is the last thing when it's just pain usually in their eyes.

I wish you well.

Last edited by Realhousewife; 04-29-2012 at 07:02 PM.

 
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Old 04-29-2012, 07:14 PM   #29
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Re: Ready to say "screw it" to ALL dr's!

Realhousewife: Like I said to Jenny... "When I say pain, I mean the tingling sleeping feeling in the upper back shoulder from spine to shoulder" ...sorry if I keep calling it pain, didn't know what else to call it. I do have upper arm weakness in the right arm, that is documented in my file from the neurologist.

I DO NOT want to have surgery, just so everyone knows. I'm just trying to find out if my spinal cord being compressed to 7-8mm is dangerous or if I have time to not worry about it is all.

I've been doing stretching (still do) on my own for months. I try and do what I can on my own to keep myself from falling apart. I've been on anti-inflammatory meds forever and done hot & cold packs. I have no objections to going to PT, but I just don't see how it will help unless the bone spur is removed.

Thanks for all the input, very appreciated and informative!

 
Old 04-30-2012, 09:12 AM   #30
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Re: Ready to say "screw it" to ALL dr's!

You should ask your Neurologist or your PCP for referral to a pain clinic. Many PCP's are not familiar with spinal cord injuries or neurological issues. The normal opiates are not very effective against neurological pain. Ask about Neurontin as this may help.

Good luck.

Millard

 
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