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.
The Following User Says Thank You to marcee For This Useful Post: kenzibenzi (04-28-2012)
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
The following user gives a hug of support to rannch: kenzibenzi (04-28-2012)
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.
The following user gives a hug of support to marcee: kenzibenzi (04-28-2012)
The Following User Says Thank You to marcee For This Useful Post: kenzibenzi (04-28-2012)
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.
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)
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.
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?
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 06:02 PM.
The Following User Says Thank You to Realhousewife For This Useful Post: kenzibenzi (04-29-2012)
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!
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
__________________ Millard
--- Life's tough! It's even tougher if you're stupid!!! -- John Wayne
That tingling and asleep sensation is not a good sign and there is very little you can take to make it go away. And you really don't want to treat it as it could go to totally numb and then you have a real problem. You need to be able to feel any changes with it. When you feel as if the muscle is pulling, it's a muscle spasms being set off by the nerve that is compressed.
I wish I could tell you that they can take off a bone spur and make it all better but if I remember what the MRI said, you have a bone spur complex on top of a bulging disk(Is my brain working right....it's been on the fritz lately). The problem with bone spurs is that they grow back and often worse than before. so they need to remove the disk that the spurs are growing on to stop further formation. Ask anyone who's had knee surgery to remove bone spurs how fast they grew back and how much bigger....fast and giant. Even my neck is filled with them again and I know he'll have to go in and remove them again some day in the not too distant future.
As to why you hurt on the opposite side form the problem, it's probably from the cord compression. The cord can cause problems anywhere from the level of compression on down. Or they may get in there and find something hitting the left side nerves too that did not show up in the MRI. Apparently my MRI didn't show half the problems they found when they got into my back.
What I had as cord compression problems were:
-numbness in my toes and bottoms of my feet...got blamed on my diabetes
-stiff thigh muscles that made it hard to walk...blamed on RA
-could only take baby steps some days....blamed on RA and or OA
-had to pee all the time or found that once I sat down on the toilet, couldn't go...blamed on big babies by OB/GYN
-same with bowel movements, either had to go really fast or I had to go but nothing would open up to allow the stool to get out...blamed on a variety of age related problems
-Differences in sensation in both legs...blamed on bad back
-staggered like a drunk when I walked some days due to the nerves losing the ability to help me balance....blamed on the numb feet from diabetes.
All of the above went away after my first neck surgery. Fact is, most doc's think "when you hear hooves, think horses, not zebras" and I not only had zebras but they were being ridden by penguins. Everyone was truly shocked when they found out how bad my neck was.
You feel best standing or lying down as that allows the spinal cord to be at it's shortest. Sitting stretches the cord and looking up toward the sky stretches it the worst...don't look up...bad, bad, bad. Since your cord is caught, it hates being pulled on and anything that pulls on it can make new symptoms. You find your feet going numb, get up and go lie down.
A compressed spinal cord can cause all sorts of weird problems as it's like a bundle of wires all bunched together and you just don't know, when it's pinched, where the most pressure will show up and in what wire. the doc will test a lot of your reflexes...they will really help to tell the story.
hugs.................................Jen ny
The Following 2 Users Say Thank You to jennybyc For This Useful Post: kenzibenzi (04-30-2012), kmartin66 (05-01-2012)
Jenny:
Well that was depressing, BUT, I could have written it myself...lol. I guess reading all your comments is making everything more real. I just want to forget about it.
How are you coming along??? I think about you all the time! I feel bad complaining on here with so many others going through such horrible times, but I'm only human.
ps....and no I don't look up, because I get dizzy.
Last edited by kenzibenzi; 04-30-2012 at 01:38 PM.
Reason: added the ps.
All of the above went away after my first neck surgery. Fact is, most doc's think "when you hear hooves, think horses, not zebras" and I not only had zebras but they were being ridden by penguins. Everyone was truly shocked when they found out how bad my neck was.
Hi Jenny,
Your above quote really made me smile. My orthopedic doc that I went to see after the neurologist told me that I might have ALS based on an unauthorized gene test that showed a dominant gene found in5% of the population with ALS, asked me if Isaw zebras in the room after he reviewed my MRI. He said he saw horses all over the neck results & no zebras!
My family doc when I told him this story chuckled and said they learned that saying in med school.
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!
I had that too. Be forewarned-if the damage is done it might not be reversible even with surgery. I still have tingling in my left arm and it goes numb on me still.
I'm going to tell you what my NS said when I first saw him. He said the 5 mm narrowing of the spinal canal was a significant compression. The other level was a 6.6 mm. He told me he would definitely do the 5 mm compression and throw in the 6.6 mm one because that would stop my arm problems. He never said that the 6.6 mm was as serious as the 5 mm one. On the MRI the radiologist said it was a moderate narrowing of the spinal canal at the 6.6 mm narrowing while he states that the 5 mm one is a severe narrowing of the spinal canal . The 6.6 mm narrowing also had a huge osteophyte in addition to a posterior disc herniation. The 5 mm narrowing also flattened the spinal cord which was because of a large extruded herniated disc.
You might not want to have surgery now but I think it's also wise to prepare yourself mentally in case you do now or in the future.
The Following User Says Thank You to Realhousewife For This Useful Post: kenzibenzi (05-01-2012)
When I had my first surgery, 3 level, I was at 4 mm NS said surgery was a necessity, I had no choice because I risked paralysis. As it is, I have permanent damage to my spinal cord and thats because I waited so long to take care of the problem because I was too scared. Surgery made a big difference, but I'm not completely pain free & thats my own fault. I know you' re scared, but if you need surgery, please don't do what I did. After my first surgery, I wish I would have done it sooner.
Last edited by NJ Ldy; 05-01-2012 at 08:11 AM.
The Following User Says Thank You to NJ Ldy For This Useful Post: kenzibenzi (05-01-2012)
I am so sorry you go through this, it must be very hard for you to handle not only pain but mental frustration.
I just will share with you what I know about it.
This is absolutely truth, not every office can Rx opiates. If you have pain issues, usually they send you to a Pain Mgmt Dr who Rx it to you if he feels the need. I am with my PM since 2003, have no problem to get my RX after seeing him every month, but I have to travel to NYC to do so. I dont mind doing it, he is worth every minute of traveling, but with gasoline prices I thought why cant I get Rx from my GP instead and see Pm once in 3 month?
When I asked my wonderful GP, who knows my family for many years if I can get RX from him, he said he doesn't have any problem to Rx it to me, he trusts me 100% but only if my PM sends him some kind of contract and lets him doing it, doses included.
The only thing, GP's not trained to treat chronic pain, they cant increase/decrease/change meds for you; for it you still need your PM DR.
After my spinal surgeries/knee surgeries, etc. surgeon can Rx opiates for you just for short period of time, than they send you to PM anyway.
I know how hard this for people in pain, but since abusers don't do us, CP's any favor by abusing drugs, they all are very careful in RX them to us. And many offices dont bother with it at all.
You just talk to your GP and ask if he/she thinks you are bad enough to go and see PM and go from there. And BTW, burning/tingling pain usually taken care not by opiates, but by taking "nerve"drugs like Neurontin, Lurica, etc. But I am not a doctor, just ask them about it and maybe they will be able to help you. I am sorry you suffer so much though!
Moldova
The Following User Says Thank You to Moldova For This Useful Post: kenzibenzi (05-05-2012)
I understand what you're saying. I'm actually feeling a little better. The burning/tingling in the back of my shoulder has eased up a lot, but now I have a new symptom, gonna post about that in a minute. But all in all, my pain level has improved with a lot of exercising! I will be discussing the PM issues with my doc next week. Thanks for the in put!
Good for you sweetie, so happy for you! Burning pain you were talking about has a lot to do with muscle pain and usually with good stretch and mild PT/exercises, it really gets better.
