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Old 04-29-2012, 05:17 PM   #25
jennybyc jennybyc is offline
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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

 
The Following User Says Thank You to jennybyc For This Useful Post:
kenzibenzi (04-29-2012)