Hi Cinnamon and Junnipurr,
I all too well remember where you were. My horrible pain started in April, and it took till the end of August for my ACDF 3 levels. I remember the frustrations waiting for the doctor to do something and the long wait for appointments. Do check to see if you can self refer yourself on your insurance. I called and found out I could and that definitely sped things up for me (and still took 5 months!) Do either of you have an MRI yet? For me that was my first big step to seeing how bad my insides looked to explain the horrible pain and numbness. No over the counter meds works, and the Rx simply made me dizzy, sleepy and didn't help much. I used the muscle relaxer cream icy hot and flexall non stop. So much that the skin on my neck and upper back was literally peeling non stop. But it was the only thing to help the pain, besides my TENS. I hope you both can get an MRI and a referral to someone soon that can help you.
A word on spasms. OMG can they hurt. Even at 7 weeks post op - they come and go and some are brutal. For the worse ones I get ice and literally lay on it till I can't stand it. Then the spasms die down. And I still sleep on a heating pad. No fun at all. Doctor says it is normal to have these on and off after the surgery. I wish they were more off than on.. Thankfully I do have good days too. So there is a light at the end of the tunnel..
Hang in there - gentle hugs for both and prayers today will be a bit more pain free for you.
Those spasms don't sound like any fun. But, it looks like I'm going to cave in and go to the ER tomorrow. I'm scared. I'm scared of surgery. And I just don't think that anything else is going to take care of this pain. But, I also, can't live like this. I'm just scared now.
I'm glad you are going to the ER. You can't live with pain like that on a daily basis. You desperately need to get an MRI of your neck. When I went to the ER for the first time, that was when they performed the MRI. Before that I had only received an x-ray that showed DDD, but nothing else. I wish you much luck tomorrow and please let us know what happens!
2011 ACDF C5-6 for Spondylosis with Myleopathy
2012 L4-5 herniated disc and hernated disc at C4/5
2013 Diagnosed with leg length discrepancy of 9mm (right tibia shorter) and wearing heel lift with mild scoliosis
2013 Taking Amitriptyline for headaches
Thank you so much for saying that. I really needed to hear that. I know I need an MRI and I want one. I'm just scared of surgery. And I'm scared they're going to take one look at the MRI and rush me off for surgery. I can't live like this so, on one hand the idea of that relieves me. But, on the other hand surgery scares me. So, you saying that gives me some validation and comfort. Thank you. And I'll keep you posted with what happens.
I hope the ER gives you some relief, cinnamongirl. Don't be scared of surgery, it helped me for a number of years but the doctor said my discs could herniate above or below the fusion, which they did. BUT I did get relief for quite some time. It was worth it to me because it alleviated the radiculopathy in my arms & hands.
I just had a myleogram done right before I moved so they are in the process of mailing the test results (on disc) to the OS where I live now. But she said it could take a week before they can even schedule me an appt.
On top of that I've been suffering from a spinal headache from the myelogram for 12 days now. I'm told to lie flat which aggravates my neck/shoulder pain. It's a lose/lose situation. I'm about ready to go to the ER my d*** self!!!
I really don't see them rushing you to surgery. It takes a bit for your test results to come back, then if surgery is necessary they will schedule it. I wish you the best, hang in there. If I can do it, so can you!
ACDF C5-C6 01/2002
ACDF C6-C7 12/2011
Prognosis: Permanent nerve damage in hands/arms, all treatment options exhausted-- lifetime CPP
Oh, if you had any idea how scared I was. I was crying non stop. When I said goodbye to people at my job I was a waterfall of tears. The weekend before was my birthday. My husband took me to a swanky hotel with wonderful lazy rivers and pool, and then a day at disney. Anything to keep me busy. I still thought about it, cried some, but the weekend went much easier than I thought it could. The day of the surgery I was a complete disaster, wreck. My surgery was postponed 2 hours. Finally the doc came and said to me, we don't have to do this, it isn't an emergency. I held out my IV and said to just knock me out and get it over with. I bet I was the biggest baby he ever saw. But I'm 7 weeks and very happy I did it. Yes I still have spasms, but for the most part I'm in much less pain than before. I have whole days of no pain now. I do have some days of numbness and tingling in my arms but it is less and less each week. Biggest thing is to not do anything that can hurt the healing. Ice and heat are my friends still, but compared to where I was before this, I'm like a new person.
Hopefully you have someone with you who can be your rock like my husband was for me and still is.
The unknown is always scary. Get some answers and you'll feel better about what comes next. This MRI should tell you and your doctor what options there are. Just realise that you are doing what you should be doing to resolve your situation. Good luck and get it done! Thinking of you.
How did it go? No one wishes to have surgery. I had fooled myself for months that my pain was muscular and that I could manage the pain without surgery. But months passed and all the doctors said that it had to be coming from the spine.
I chose surgery due to quality of life issues, not wanting to be on heavy meds and the cord compression was causing bladder problems.
I suspect they will give you steroids to decrease the inflammation and then you will have to follow up with a spine specialist. Hope the ER can provide you with some pain relief, even if it's just for a few days!
Thank you everyone for the encouragement and support. It really means a lot.
I didn't go to the ER. I got the pain back down to somewhat bearable and decided to suck it up and wait for my nurse appointment if I could. I told myself if the pain got that bad again I was going to ER no matter what.
Today I had my follow up nurse appointment. The nurse still thinks that I'm having nerve pain from a muscle spasm. I think I'm having muscle spasms from the nerve pain. When it all started I was having nerve pain. I didn't start having muscle spasms for about 5 days after the nerve pain started.
She said I can have an xray and an MRI. The referrals for the tests come in 3 weeks. And in a month I have another follow up appointment. In the meantime she wants me to take 600mgs of ibuprofen 3 times a day and flexeril. I'm worried that's a lot of ibuprofen.
My promise to myself stands. If the pain gets like it was the other night.. I'm going to ER. End of story. This whole thing is frustrating. I feel like her mind is made up and I'm still having problems with all of this pain. I mean I can't even use a pen and write anymore. The movement of bringing a fork to my mouth is so, painful that I have to eat with my left hand. I feel placated. Can I scream now?
So it sounds like you didn't make any head way with the nurse after waiting to see her except to be told you can get an xray and mri, and you have to wait 3 weeks to get them done?
I don't know what kind of doc you are seeing, but it doesn't sound right. My primary doc ordered my xray the first day I saw her. She too thought it was muscle spasms at first. She ordered the xray the first day, I went to the hospital and had it done literally 30 minutes after the aptm. They saw the bone spurs in the xray in my case. I did drugs and physical therapy right away too. After a month of that no helping, on 2nd aptm she send me for MRI - probably about 4 weeks after trying several meds, physical therapy and then finally steroids. I went for the MRI a few days after 2nd aptm. Once seeing the MRI, I was refereed to the pain specialist who did the 3 epidurals - either 2 or 4 weeks apart.
Sounds to me like you definitely need a new doctor. I can't see any reason to wait for an xray or another aptm with this nurse!
I don't think 600 mg of ibuprofen is bad. I've taken 3 otc pill of that or tylenol so many times. I'm not familiar with flexeril.
Big question, why not find another doc. Call your insurance, see what can be done. Don't continue to wait and do nothing.. If your pain was anything like mine was with the knife in the back feeling and no feeling at all in my left arm - I didn't stop calling. I called my doctors office literally every 3 days to help push things along.
Hope this helps.