Re: Concerned due to Not a good candidate for surgery
Marcee:
I apologize. I feel like I hijacked your post with my problems.
I understand the whole pain med concept and about addiction. My old dr sent me to a neuro, then she sent me to different neuro, now he is sending me to an orthopedic surgeon. All of them feel my condition is too severe for them, so they keep sending me to someone else, yet nobody is treating me...lol. Makes me CRAZY! I just hurt so darn bad and need some relief.
Ok, I'm done talking about myself. Again, I apologize for hijacking your post (I've been scolded for that on another board). It was just nice to talk to people who actually understood me.
I do hope you get some results and get everything figured out. Dr's make me want to pull my hair out. ~hugs, Kenzi!
The following user gives a hug of support to kenzibenzi: mom477 (04-24-2012)
Re: Concerned due to Not a good candidate for surgery
For many years I was treated like a drug seeker due to having fibromyalgia. Luckily my PCP understands it and recent doctors Ive seen knows fibro is real and they sympathize with me. Hugs to you!!!
The following 2 users give hugs of support to: mom477 kenzibenzi (04-24-2012), marcee (04-24-2012)
The Following User Says Thank You to mom477 For This Useful Post: marcee (04-24-2012)
Re: Concerned due to Not a good candidate for surgery
Thank you for this pillow info. I'm so upset about all this thats happening right now. The pain is absolutely unbearable at tmes even with meds. So not being able to find comfortable way to sleep is not helping my mood any. I keep thinking if i can just sleep longer than 2 to 3 hr intervals will greatly help me but just not happening. Can't remember when I last got a full 8 hr sleep in one night. Have a feeling never gonna happen again. Oh well. I guess just feeling a bit sorry for myself right about now. I know after reading all the other posts, many many others have a lot worse off than me so shame on me.
Anyway, i will get the memory foam pillow and let you know how it works. Will keep my fingers crossed that it will do the trick. Thank you.
The following 2 users give hugs of support to: marcee kenzibenzi (04-24-2012), mom477 (04-24-2012)
The Following User Says Thank You to marcee For This Useful Post: kenzibenzi (04-24-2012)
Re: Concerned due to Not a good candidate for surgery
Kenzie... please no need to apologize. Not at all. I just think if these drs had to go through what their patients are then they may learn to be more empathetic. You have enough on your plate to contend with as it is, so dont worry about posts. These posts really help me b/c it is good to discuss with others who are kind understanding and can relate. Makes it so i don't feel quite so alone in this. You take care and hugs to you too!
Re: Concerned due to Not a good candidate for surgery
Please read this post twice.
Well, I guess doctors are immune to any disease. They are just lucky.
Strange enough, they have never been in car accidents (perhaps they have been but have never been injured to suffer from chronic pain), They have no disease. How interesting. Even in the pain clinic none of they ever felt pain.
How don't understand how come they are so lucky? perhaps they drive the best cars so they are protected from whiplash etc. I think if we do a research on that we will find that it is true. Most (if not all) of them are well! and not suffering from chronic pain at least.
I can tell you marcee, at least you were not in a car accident and hurt your neck, I believe it could be worse. Then it would be your tendons, ligaments and muscles involved. I now understand it's called myofascial pain which my doctor never mentioned for 6 years. Not enough, to make me more sad....my doctor has never met any patient of his who is not able to rest his/her neck on the pillow and said that must be psychological.
I tried to convince him that I don't imagine it and really, when I rest my neck on the pillow I am in pain and cannot sleep. Believe me Marcee, I have been to many doctor and none of them has ever heard that before. That is what I was told, you are the only one, a rare case. Well, I see here in this forum that I am not the only one.
Anyway, Marcee, we should all aim for 8 hours sleep. When was the last time you were able to sleep 8 hours? (not trying to be rude...just asking). and how many hours are you able to sleep now? What meds are you taking before going to sleep?
Last but not least, don't go to any chiropractors for your neck!.
The Following User Says Thank You to nochange For This Useful Post: marcee (04-25-2012)
Re: Concerned due to Not a good candidate for surgery
Quote:
Originally Posted by nochange
Please read this post twice.
Well, I guess doctors are immune to any disease. They are just lucky.
Strange enough, they have never been in car accidents (perhaps they have been but have never been injured to suffer from chronic pain), They have no disease. How interesting. Even in the pain clinic none of they ever felt pain.
How don't understand how come they are so lucky? perhaps they drive the best cars so they are protected from whiplash etc. I think if we do a research on that we will find that it is true. Most (if not all) of them are well! and not suffering from chronic pain at least.
Last but not least, don't go to any chiropractors for your neck!.
I read that a lot of surgeons do have back and neck problems because they're bending over so much from performing surgery. Neuros and Orthos do complex surgeries that can last for hours. They're not the ones that treated me like a drug seeker. It was the idiot nurses and doctors in the ER. The pain specialist I saw gave me a prescription for MS Contin and when I told my neurosurgeon how much pain I was in he said he understood that I must be in a lot of pain.
As for chiropractors, I second that statement. Don't EVER let them touch you for neck pain. Manipulation of the cervical spine is the worse thing anyone can do to a person with herniated disks and spinal stenosis. It can also rip your neck arteries in half.
Re: Concerned due to Not a good candidate for surgery
Quote:
Originally Posted by marcee
Thank you for this pillow info. I'm so upset about all this thats happening right now. The pain is absolutely unbearable at tmes even with meds. So not being able to find comfortable way to sleep is not helping my mood any. I keep thinking if i can just sleep longer than 2 to 3 hr intervals will greatly help me but just not happening. Can't remember when I last got a full 8 hr sleep in one night. Have a feeling never gonna happen again. Oh well. I guess just feeling a bit sorry for myself right about now. I know after reading all the other posts, many many others have a lot worse off than me so shame on me.
Anyway, i will get the memory foam pillow and let you know how it works. Will keep my fingers crossed that it will do the trick. Thank you.
Try a recliner if the pillow doesn't work. That's the only way I could get any sleep. I also take medication to help me sleep. You might try looking into that.
Pain is subjective-your pain is very real to you and even though you think others have it a lot worse we have all experienced the type of pain you are feeling. I don't think you are feeling sorry for yourself at all. Before I made it to the "other side" I felt pretty much like you did.
Last edited by Realhousewife; 04-25-2012 at 02:01 AM.
The Following User Says Thank You to Realhousewife For This Useful Post: marcee (04-25-2012)
Re: Concerned due to Not a good candidate for surgery
Meds never really take all pain away. Right now they are trying to find right combination. Sleep meds my dr doesnt like to prescribe though. Im doing some research to see what i can do naturally. I think i am just so stressed. Still waiting to see if i get approved for ssdiisability but as soon as i do will get a recliner. I can see how this might work. I am thinking many are disabled with spinal problems. I think i need to prepare myself for appeals and months before decision is made.
Re: Concerned due to Not a good candidate for surgery
Quote:
Originally Posted by marcee
Meds never really take all pain away. Right now they are trying to find right combination. Sleep meds my dr doesnt like to prescribe though. Im doing some research to see what i can do naturally. I think i am just so stressed. Still waiting to see if i get approved for ssdiisability but as soon as i do will get a recliner. I can see how this might work. I am thinking many are disabled with spinal problems. I think i need to prepare myself for appeals and months before decision is made.
I never had any luck with pain medication when I was in pain. My neurosurgeon's PA said it was because I had a low thresh hold for pain after she examined me before my surgery. Luckily I didn't have a lot of pain afterwards so I didn't need pain meds for long. My knee surgery hurt more.
Re: Concerned due to Not a good candidate for surgery
Marcee,
your best bet is to get a lawyer and let them handle it. They only get paid if/when you win and the money is given to them out of your back pay, so they are paid right off the top, not a worry for you. I got a lawyer and was approved in 8 months. It didn't cost me a cent. I'm in Michigan. If your near the Detroit area, let me know and I would gladly give you my lawyers name. Mine was approved because of my spine and my feet, combined with my age (52). Age plays a huge roll in the deciding factor.
The Following User Says Thank You to kenzibenzi For This Useful Post: marcee (04-26-2012)
Re: Concerned due to Not a good candidate for surgery
I'm late to the party but would like to join in. I have cervical spondylosis...and all that is, is a fancy word for osteoarthritis of the spine. And osteoarthritis is degenerative no matter where it is and is NEVER a reason not fix it.
I suspect the reason you are not a candidate for surgery is that you aren't bad enough yet. Surgery carries risk, including a 3% risk of paralysis so they wait. Pain means the nerves are alive and kicking and so is a very good sign to a spine surgeon. Numbness, pins and needles, and things like muscles that don't work right are the signs that you need surgery. No spine surgeon cares about the pain you are in. You aren't surgical in 99% of the cases.
I did have surgery but what my MRI showed was severe foraminal stenosis bi-laterally from C4 to C7 and cord compression to under 50% of normal thickness from C3 to C6. I had no neck pain...I was going numb from the neck down. What your MRI shows is that you are worsening but are far from needing surgery.
With recent changes in laws regarding pain meds, most docs now refer you to a pain management doc or clinic as they have the legal ability to dispense narcotics unlike what most docs can do. They know what works best for what and what drugs you need when. They can give you long acting drugs as well as breakthrough drugs when the long acting stuff doesn't last long enough or you're having a bad day. They just released a study that showed that epidural cortisone shots for bad spines do not work....interesting to say the least. But if you are looking for complete pain relief, you won't get it.All they aim for is to make you comfortable.
Since I've now had 3 spine surgeries, I get Dilaudid....seen as the best for bone pain...and my doc just orders a mess of 2mg pills and allows me to take what I need....2,4 or 6 mgs depending on what I need. Since almost all narcotics can(and do with me) cause nausea and vomiting, I've tried just about all the anti-nausea drugs out there and now use only Zofran...it's the drug they give to cancer patients prior to chemo. I take a Zofran 1 hour prior to taking the Dilaudid and it works really well. This past surgery 4 weeks ago was a breeze.
Pillows.....I have found immense relief using a side sleeper pillow. It is shaped like a big U so that it comes down both sides of your body and keeps you from rolling onto your back or stomach and it's made so that the neck stays straight with the head. Found mine in the supermarket....$19.99. Developed by an orthopedic surgeon and has been wonderful. Check out big box stores. Has diminished my chronic pain a lot.
Therma Care neck wraps help. The muscles can end up hurting more than the spine itself and those help to increase the blood flow to the muscles and reduce pain.
But the best pain relief I have found is from taking a good muscle relaxer prior to going to bed at night. I like Skelaxin or Soma...older drugs but good ones. Then I crawl into my bed and use my side sleeper and chances are, I will wake up pretty good. After showering, I put on a Therma Care wrap and I'm good to go. Most days, I take ibuprofen...up to 600mgs 3-4 times a day whether I hurt or not just to keep the inflammation down. And if it gets worse, I don't hesitate to use a soft neck brace or take an extra muscle relaxer. I save the narcotics for really bad days. And at least 4 days a week, I go to a special facility that does aquatic physical therapy and work out my arms in the water(and back and legs)...but for my neck, it's the shoulders. You only use styrofoam "weights" but boy, pushing them through the water is great resistance. It seems to help the muscles relax better. The bad neck makes the muscles over work so working them a different way tires them out and allows them to fully relax at night.
It used to be thought that cervical spondylosis rarely hit prior to age 55 and accounted for only 3% of the cases of spinal problems but in recent years, it has become far more prevalent and starting at a much earlier age. It is fixable and the latest surgery for it(the laminoplasty) has made treatment much easier but you still need to be in a position to need the surgery. If you would like some links to info on that surgery, I'll be glad to provide them. Web and I have both had it.
Fixing the neck is like getting a knee or hip replaced. You just have to wait until your arthritis is far enough advanced to justify the surgery.....no matter how badly it hurts. Stage 1 hurts and stage 2 Oa is very painful. Stage 3 OA will bring tears to your eyes just taking a few steps and some insurance companies will say yes at that point to replacement. You knew you needed the new joint at stage 2 but they made you wait until advanced Stage 3 or even stage 4. Why? Risk management. They run all the stats on death due to surgery, how often people sue, the odds of permanent damage, the chances and types of side effects and complications...they run it all and figure out when the right time is to do surgery. And they do the same for the neck. And somewhere, some chart says you aren't ready to have surgery.
Sad but that is how our health system is run...not by the docs but by the statisticians.
Just had to throw in my thoughts.
Jenny
The Following 2 Users Say Thank You to jennybyc For This Useful Post: marcee (04-26-2012), mom477 (04-26-2012)
Re: Concerned due to Not a good candidate for surgery
Quote:
Originally Posted by marcee
Meds never really take all pain away. Right now they are trying to find right combination. Sleep meds my dr doesnt like to prescribe though. Im doing some research to see what i can do naturally. I think i am just so stressed. Still waiting to see if i get approved for ssdiisability but as soon as i do will get a recliner. I can see how this might work. I am thinking many are disabled with spinal problems. I think i need to prepare myself for appeals and months before decision is made.
I started my application at the first sign I was having surgery because my LTD company makes it a requirements. That was May 2010, I was denied twice and got my ALJ on 4/11/12.
It was a long scary, anxiety driven two years and now I am still waiting on the letter and insurance information. But well worth it. If you have any questions regarding what to expect let me know. I did have an attorney group but did all the work prior on my own. Received a fully favorable bench decision that very day. I was estatic.
Re: Concerned due to Not a good candidate for surgery
Hello Marcee, all I asked is how many hours are you able to sleep at night.
What do you mean your doctor doesn't like to prescribe sleeping pills? Did you know nowdays they prescribe even xyrem for people who cannot sleep.
Just so you know. I have hard time sleeping(just like you). Not a candidate for surgery(and who says after surgery me or you will be able to rest our necks on the PILLOW? there are no guarantees in life, it depends what is the REASON you cannot rest your neck on the PILLOW). Do you see what I mean? For example, I have 2 bulging disks - That's all and still cannot rest my neck on the pillow. It depends on the REASON why you cannot rest your neck on the pillow. I don't think doctors can figure me out.
So even if you do a surgery it DOESN'T mean it will solve your sleeping issues.
Did you read what I said here: Don't go to chiropractors for your neck. We here know what we are talking about that issue.
The Following User Says Thank You to nochange For This Useful Post: marcee (04-26-2012)
Re: Concerned due to Not a good candidate for surgery
First, thank you all for your replies and posts I am very grateful to each and everyone of you.
I sleep in 2 to 3 hr intervals. What wakes me up is that I have apparently been in one position too long. Currently I'm not taking any sleeping meds--prescribed nor OTC.
My dr has prescribed various muscle relaxers--very mild which didn't do anything. Recently though dr prescribed flexiril which I can't handle b/c it completely knocked me out for entire next day. Was totally nonfunctioning. I then walked around in fog for next 2 days just from 1 pill.
My dr had me on hydrocodone which works except when I get these intense back spasms that slowly start deep inside down by my tailbone traveling up my entire spine all the way to base of skull. The first one of thse type spasms literally jerked me sraight up off the bed. Was excrutiating and frightned me. At first thought maybe sign of seizure but dr said no--just spasm.
Dr added duragesic patch (smallest dose) but immediately had reaction so took it off per dr. I was happy not to have patch as I was leary of it to begin with due to controversy surroundng this particular med. Not sure what my dr is gonna prescribe next but really dislike having to take combinations but I know if I'm to get relief I need to just deal with it.
Oh, I will never go to chiropractor--promise. I see enough specialists as it is.
I have a question though: I recently was in hosp b/c one night I had awkward feeling (not painful) in chest. Went to bed but when woke up I couldn't move. It felt like I had knife stuck in my chest pinning me to bed. I couldn't call out for help because my lungs wouldn't expand enough. Could only barely whisper. My cell was on night stand but couldn't move to reach. Thought I was having heart attack so I prayed b/c I thought I was dying. I remained like that till my kids got up in morning. ER dr said that what I experienced is exactly what people having heart attack go through. He said the muscles surrounding heart lungs had intense muscle spasm like charlie horse which is why I could only manage shallow breathing. Hasn't happened again thank God! Has anyone else had this happen or heard of it? Drs havent a clue.
Re: Concerned due to Not a good candidate for surgery
I too, like Jenny use the U shaped pillow. Only thing that has worked most of the time.
As far as pain meds, I have percocet, but most nights I use a combo of Ibuprofen and Benadryl. Benadryl for the sleep and ibuprofen for the anti inflamatory.
My doc has been pretty good about giving me pain meds when I ask for them. But I find the key is not "toughing" it out. When I hurt , I hurt and I am going to get relief. At the first sign of pain, I take ibuprofen. It helps alot! I also have a steriod pack if things get really out of hand.
Jenny it is so good to hear you had a "good " experience! Been praying for you! How is the weight loss coming? I found a great program and have lost 30 lbs since Feb.
Re: Concerned due to Not a good candidate for surgery
Hi, new here and just finished reading all the posts, and I agree with what everyone has said. It's so true the insurance companies are sometimes the cause of putting off your treatment. If you have a good doctor, they will go to bat for you, if a strong enough argument is made, the insurance companies usually relents.
My situation is very similar to Jenny's. I've had 3 ACDF's and am fused from C2-T1. I also have RA, Osteoarthritis, Fibromyalgia, and other issues with numerous joints in my body, as well as having DDD throughout my entire spine. I'm having issues now with my lumbar and just had an MRI....uuughh, it never ends.
My issues started in the 1980's, and at that time, I was told I was not a candidate for surgery. 25+ years later, my cervical spine had to be addressed, it was getting worse and worse. Ran the gamut for over a year trying to find a doctor to help me, it was a nightmare. Finally found the right combination of pain management and neurosurgeon, my saviors. I was told by both doctors that the disc must be a certain millimeter of bulging before they would even consider operating; otherwise, they first try all the conservative treatments. You really need to have great communication with your doctors. It's so sad that there are doctor's out there that won't give you the time of day; in the meantime, you are left suffering.
I'm surprised your doctor isn't giving meds for sleeping, my pain management doc wants me to sleep, not sleeping just intensifies the pain. I take muscle relaxors, sleeping meds., and pain meds to help control my pain and help me sleep. Even after all the surgery I've had, I still have pain, but not as severe as prior to the surgery.
I agree, you may have to go to multiple doctors before you find the right one. I posted in another thread, based upon my experience, I find the doctors at University Hospitals that teach are the best. My NS is a Professor of the Spine Center where I had my surgery, he was wonderful. Spent as much time with me as I needed, answered all my questions; he never made me feel like I was crazy or not worth his time. I did have experiences like that with other physicians. I even had one that told me I just had a little arthritis in my neck and should see a psychiatrist because the pain was all in my head.
I wish you the best of luck and look forward to following you on your journey.
The Following User Says Thank You to NJ Ldy For This Useful Post: marcee (04-26-2012)
Re: Concerned due to Not a good candidate for surgery
I will be looking for the U shaped pillow. Jenny has said it better than any doctor I have seen and has helped me to understand things alot better. I understand that my bulges aren't bad enough to need surgery but the cyst and where it is at inside my spine is most likely the cause of what I have been experiencing which I though was from my neck. Having fibromyalgia doesn't help since my muscles are always knotted up and causing pain.
Re: Concerned due to Not a good candidate for surgery
Is your U shaped pillow the body length size? My daughter just got me the smaller one for my head only said she couldn't find the body-sized one. Will keep looking. Geeze... that just really burns me up as my dr said I should see a psychiatrist as well during my last visit when I told him I wasn't getting enough sleep. What is wrong with these neanderthals anyway??? So sorry but even I know a body needs a good night sleep even when not dealing with health issues!
I'm going to really have a heart-to-heart with my dr on my next visit. I will say this group is certainly opening my eyes to my rights as a paitient for sure. I have always been the meek and mild type and I can see now that I really need to start standing up for myself!
On an entirely different note, may I ask what weight loss program you are on? My daughter is continually trying one thing after another with no success and maybe your program will work for her.
Congratulations on your success, that is so fantastic!!!
Re: Concerned due to Not a good candidate for surgery 
