Help! Need Advice-Facing ACDF Again Within 1yr - Spinal Cord Disorders Message Board

LisaM · 09-19-2004, 12:24 PM

Hi All,
I need advice from anyone willing to help me. I had ACDF at C5-C6 Sept of 2003 and even after the surgery I had continued pain. My doc said it was normal and after 3months refused to give me any meds and told me to try yoga!. He never xray'd or mri'd to make sure I fused. He just assumed I did. Even though, he knew I was a smoker. I did make great effort to cut back. December 2003, I found a family doc that believed my pain and kept me on meds as needed. He xray'd and mri'd and found a slightly herniated C4 but I didn't want surgery again so soon until I could not handle the pain any longer. Labor Day of this year, I woke up and could not move! My doc was out of town and after 3 trips to the ER. I finally got ahold of my doc. Another MRI was done and now the disc is severly herniated and pressing against the nerves. I have a horrible headache that won't stop and I liken the pain to a migraine. I have shooting pains down my upper back and right arm. Same symptoms as before except for this headache. I can't function with this pain. I went to the doc last Wed and he said the choice was now up to me that he had done all he could. I go back tomorrow and I am debating on whether or not to let him put me in the hospital for the pain. He offered to put me in to get the pain under control. The pain meds aren't working and I'm doublin up on them. I feel like I'm at my wits end and the pain is more than I can handle and I take strong pain meds. Has this happened to anyone else? This board brought me such comfort before.....I didn't know where else to turn. All these medical problems have brought such strain to my family. I don't feel I have anywhere else to turn.

Any advice would be greatly appreciated!

nero · 09-19-2004, 07:46 PM

You are a brave girl to get up through all your pain and type up a note to seek some advice. You have suffered enough my dear. You need a mental break so take whatever pain meds you can get to help you.. you will be okay.

Regarding the surgery I too had c5 -6 acdf own bone and plate last nov 03 and I have not yet reached a year. This past weekend was a painful one with a strange neck spasm and tonight my shoulders pain so I am a little worried. I cannot imagine the thought you have had to deal with of another surgery.. but you know what .. you will do whatever is necessary because you are a trooper and you can do this for you and for the relationship you deserve with your family.

I would thoroughly ask whatever questions you need to about why you need this surgery again so soon and what effect it will have on adjacent discs and if you are going in the right or only direction with this second surgery with an intent to not have to do this a third time.

Especially with the availability of artificial disc replacment options you might be the lucky

candidate.

I am soooo sorry sweetie that you have had to deal with this bunk again.. you are an inspiration

to me as I sit here tonight obviously in much less pain than you.. but I too remember clearly that pain and its impact on my life and my being and I will do whatever I can to inspire

and help you as with the rest of us here on this board.

You are a good soul.. hang in there...

Nearly new again Nero.

solardust · 09-19-2004, 10:00 PM

Boy Nero could not have put it better,I agree 100% with him on all remarks,I know of one other person who had to go back in soon after her last fusion, she works at a tavern nearby,she was kind enough to chat with me prior to my surgery,she had level 5-6 done just about 5 months ago, and is now haveing 6-7 done,and she was haveing all the terrible pain back also,I have not had a chance to talk with her as of late , but I understand through my sister in-law that she is on the mend and doing real good.I might be in the same position you are in sometime in the near future, in my case the NS did c6-7 and left c5-6 buldging w/flatting of spine,how he knew it was 6-7 causeing so much pain I dont know,but when I seen him day after surgery , after wanting to kiss his feet for the relief I was in,I mentioned that my left shoulder seemed to be hurting, thats when he said he did not fuse 5-6,I also have minor herniations in 4-5 and 3-4,he said arm positioning should bring relief,and that he could of fused my whole neck but did not, hey not that I wish for any such thing,but every pain sets me to worry,but like "Nero" said you are a very brave girl just for posting,and with stanima such as that,you will do fine.I do know from other folks here, that its best to settle the nerves as soon as possible,so as healing takes a easier course,I wish you all the best Lisa,and hope you find relief soon,please keep us posted when able.Solar

LisaM · 09-20-2004, 06:52 AM

Thank you Nero and Solardust so much.
The only way I do sit here is with the help of the happy pills. You know, my family tries to help but they can't really understand the pain and the toll this takes on you. However, you all do and I didn't know where else to turn for advice. I can't thank you both enough for taking the timing to write me back. I tried to continue to work and I just can't. Last night, I finally decided to take my doctors recommendation and go on disability. He says I have degenerative disc disease and will always have problems and he thinks the disc in my lower back are starting to be affected. I have 4 children and for the first time in my life had to be put on antidepressants. I just want my life back but now I know it will never be the way it was and I have to accept that and it doesn't mean it still can't be a good one. I just have to live a little different than some. I guess we all get to that point when we know enough is enough. Time to fix it. That's where I am. I can't take 1 more day. I'm going to go to the doctor today and let him put me in the hospital to get the pain under control and then go see a nero and get this fixed. And yes, I am going to ask every question known to man about this. At this point, I feel I know more than they do about this. ha! Thank you both again for your kind words and support. You've given me great comfort.

nero · 09-20-2004, 07:50 PM

Good. You have made the first step to getting relief...take the medication.. i was an anti pill person and tried not to take anything much and that ended up being silly as you need the mental break and the sleep to get through the pain. You don't get a medal for being cranky to your family and depressed enough to avoid wanting to try and get better, so take what is offered and remember this is NOT FOREVER.

I had such terrible right sided pain in my arm and head and paralysis and the disc was a left sided herniation so the first surgeon said what if he did it all and the pain was still there. So I addressed the bulging disc above with them and they didn't want to touch it. Then they said they would do the surgery and when I asked about the approach to the bulge above they suddenly felt the disc looked like it was compressing the cord less. The surgery was called off. It is very hard to figure the drs. out. Dare you ask about your own surgery... then I found the dr. of anyone's dreams who agreed to at least indulge my questions, begged me for more questions and addressed my inquiries by giving me a web site. Three visits later with my hubby at both , he confirmed my need to get this disc out NOW to avoid paralysis. I also had L5 S1 disc herniation which he agreed to do a microdisc'y on later in the Spring o4. He wanted me to have a break although he offered to do it within a week of the first surgery. I am glad I waited.

So Listen... you have a right to enquire... it may delay things.. it may not but it may save you a whole lot of hassle again in the future. who knows. there is no science to approaching these drs. What they eat for lunch.. how they left their spouse that morning and whether or not they have had a holiday is how their conversation with you is affected. However, you have every right to ensure that what you want is what you get, within reason and then the outcome you can live with.

I was in horrible pain for four years.. to the point where I actually told my husband on the way home from the show one night that I wanted he to let me go on my own as I was no use to him or the kids and I couldn't cope with the pain anymore. I actually sat down one night and drank lots of wine and took my pills and hoped I could feel no more pain. I woke up very groggy and somehow managed to continue on because of my love for my family and my life.

You will be okay... its a journey of incredible torment and sometimes mixed with intermittent relief... but IT IS NOT INSURMOUNTABLE... I can vouch for that.

So as I choke on my sausage roll because I can't eat the same way I used to I still have a desire to live because the pain is not oppressing me to the point where I can't.

You need to rest at the hospital and take care of yourself and remember each day is a step towards the time you will spend with your kids.. lots of it IN NO PAIN...

So get to the neuro as soon as possible and get this done and then we can all celebrate at your recovery and you can enjoy your life and your beautiful family.

Nightie night and remember God love you.. whatever God means to you.. there is a higher power and it will help you through this.

Nero .. trying to be nearly new again