Hi Everyone, I really hope that someone can help me! I am sooo very upset! I had a ACDF C4-5 and 5-6 with Titanium Cages done on 4/5/04 so today i am 4 weeks post op. This whole thing, the surgery and the recovery has been a nightmare for me. I am still having alot of pain, i almost think i hurt worse now than before the surgery! About 3 days post op i noticed that i was having spontaneous movements/jerking of my arms,legs and torso. So i called the NS and the nurse said that it was normal that it was just my spinal cord healing. Well then about a week or more later, my husband wakes me up in the middle of the night and wants to know if i am ok. He said that my head was jerking up and down off the pillow really bad. I had noticed during the day while i was awake my head jerking before he even noticed and woke me up. So i call the NS office again and at first the nurse is telling me again that it was normal.... I mentioned about the head jerking. Well then the nurse said that it was normal but of course once again blew me off and said that i would just have to mention it to the NS when i come back in next month for my visit. Well i still have the jerking pretty bad, maybe not quite as often but when i do they are more intense. My husband is now telling me that when i sleep my face twitches. Then on this past Saturday i wasnt doing anything strenuous, just doing light housework and i noticed that my shorts were wet, almost like i had wet my pants. I just blew it off thinking that i was sweating. I went to bed Saturday night and then i woke up about 4:30A.M. Sunday morning and i had wet the bed!!!!!!!!!!!!! How embarrassing! I am even having a hard time telling you guys about it! What is wrong with me??? I am only 35 years old, i feel like having the surgery was a big mistake and i am so afraid that what ever is happenning to me is going to be unreversible or the NS isnt going to know what is wrong with me and it is just going to keep getting worse. Can someone please help me??? Thanks in advance for any help or suggestions. Hurdy
Hurdy, I doubt that any of us can tell you exactly what is going on, but I feel it's important for you to get your NS's attention by hook or by crook. I know you have called several times, and I always HATE these stories of being blown off by nurses, etc.... But the nurses do not know it all, and it seems apparent to me that you have some important nerve issues still going on.... When you lose urinary control and when you have new jerking of extremities..... these are NOT NORMAL occurrences after an ACDF. I feel it definitely needs to be checked out. Go back to the NS, or call your PCP.... go to the ER.... DO SOMETHING PROACTIVE. I don't mean to shout, and I know you have tried. Like I said, I just hate hearing about this sort of thing happening to patients; and unfortunately, it happens way too often... Please get thee to a(nother) doctor for an opinion on these new and troubling symptoms.
I have not put in my signature, but I had my three-level ACDF just a year ago... and I'm hanging in there pretty good.
Good luck... get your husband or somebody else with determination to help you get through the doorway. And don't go alone.... obviously this guy needs somebody to help get his attention, and you already have your hands full just dealing with the aftermath of surgery. I know you know.... this is major surgery!
Hi, Thanks so much for answering my post. I will definately call the NS tomorrow. I see my PCP on a regular basis because i have chronic back pain, so i went to see him today and he said to definately call the NS and tell him but in the mean time he wants me to have an MRI of my lumbar spine. I guess it's a place to start and make sure there is no pinched nerves or impingement of any kind. He also said i could be having some kind of spasms. I am a mess, and i am so embarrassed. It's pathetic, i have a severely handicapped little boy (he is 7) he is big for his age so at night i have been putting on his GOODNITES pull ups. I just dont want to take any chances!!!!! I am soooo afraid!!!!!! I am afraid that this is bad and that it wont be reversible and it will get worse, to the point that i will be peeing my pants, and wearing a diaper, my body will be jerking and my face twitching and i wont be able to go out in public!!!!!! LOL It's not really funny and i am afraid that will happen but i have to make light of it or i just wont get through it! Again thanks so much for your reply and support! I will keep you posted if you would like. Thanks, Hurdy
I agree you need to get your NS's attention asap. If you can't get past the nurse, then I would suggest calling after office hours. Possibly your doctor would be on call, rather than someone else being on call for him, and he would call you back. Another option is to tell your PCP that you haven't been able to get through to your NS, and see if HE can do something. If all else fails, go sit on his doorstep until the office opens and refuse to leave until he sees you. (Yep, I am serious!)
Try to relax and get some rest. I know this is very disturbing to you, but I'm sure there's a reasonable explanation, and that all of this is going to be fixable. You'll be in my prayers - let us know what happens.
SecondFiddle, Thanks so very much for your reply and concern. It makes me feel better to know that someone is praying for me!!! I know i should put my health in God's hands and trust that he will help me, but ya know how hard it is sometimes. I just dont feel optimistic alot of the time.
Three cheers for your PCP prescribing an MRI... I wish it was also for the C-spine, though. But I'm sure he knows more than I do about your lumbar area. Just remember that problems can be at any level below the injury; so it's possible that these new symptoms can also be from the C-spine! If your lumbar MRI comes out ok... just ask them to check out that area again, ok? And of course you know that MRI's don't show the entire story, either....
Take care.... I'll be off the computer for the next week, and I hope a lot of better things happen for you during that time...
I agree that you need to see the NS and if he wont cooperate, then ask the PCM can he find you another one who will! I think the bladder part sounds like another nerve issue and the MRI in the lower back might be a good idea...but only the NS is gonna know what all really could be going on!
Hi All, Well, after 3 days of trying to get through to my NS i finally had to get a little short with the nurse. It was about an hour later when the doc called me. What a waste of time!!! I told him about me still having terrible pain and the bladder incontinence. I didnt even get a chance to discuss the spontaneous movements i have seeing i could barely get a word in edgewise. He just cant understand why i would still be having pain and he is most sure i must have something wrong with my bladder because he has a 100% success rate with his cervical fusions! That is all i kept hearing was how he has a 100% success rate. I'll tell ya, i am at my wits end and about to just throw my hands in the air and except the fact that i am just doomed to suffer the rest of my life! I go back to see him on the 19th and am just so thrilled about that! I really do appreciate all of your input and help. At this point i think all of you guys are the only ones who can really understand what it is like to suffer with this type of pain. Again, Thanks all and i will keep you guys posted! Hurdy
He just cant understand why i would still be having pain and he is most sure i must have something wrong with my bladder because he has a 100% success rate with his cervical fusions! That is all i kept hearing was how he has a 100% success rate.
Geez...I'd wonder about a Doc who claims a "100% success rate." Unless he's God, I believe I'd be a bit more humble. If you spend any time at all on this board it's obvious that no two patients who've had our diagnosis and ACDF surgery are identical, either pre-op or post. Your Dr. should respect your concerns and give you some legitimate guidance, not just blow you off! I would think if nothing else, for his and your own satisfaction, he'd have you get another MRI or at minimum an x-ray, just to be reassured all is well in there. Don't back down. Could you confide in your GP Doc and get some guidance there? Maybe they'd help intercede and work on the surgeon to push this along. Good luck and keep on demanding answers!
Hi All, Well get this, ok, my NS who claims that he has a 100% success rate and mind you he also came very highly recommended and that is why i opted to be treated by him, after my ACDF and i was in the recovery room he went out and talked to my family telling them how the surgery went, he also told them that i have SEVERE Osteoporosis! He said that the bone in my neck was soooo very soft that it took him a little longer than anticipated to do the surgery because he had to be very careful with putting in the screws for fear of overtightening them and stripping them out. He highly recommended supplements as well as following up asap with my pcp and getting a bone density scan done. Well, i had my bone scan today ( oh yeah, if you didnt read in my other post already, i am 35 years old ) and my bones are as healthy as a 25 year old!!!!! So now i am really thinking of getting a second opinion if this post op pain dont get any better. I have been hurting so bad that i am wishing that i didnt even have the surgery done at all. Anyway, i go back for my 6 week post op check up next week and i cant wait to tell him what my bone scan said and see how he trys to explain his way out of that one!!!!!! Talk to you all soon, Hurdy