Well the test results are in and they said the culture shows a "Mixed bacterial infection" from where my doctor picked the scab and sent in for a culture. I am on antibiotics so hopefully it clears up soon. Also waiting on a call from Mayfield after Dr Tew sees the results and I have told nurse Nancy I want an mri just to be 100% sure nothing is wrong from surgery. My insurance covers mri's 100% so I just want one to ease my mind after all this.
After all this and even being told by Dr. Tew's office that he said it is very unlikely to have an infection or leak or anything this long after surgery.. if YOU think something isn't right, don't feel good, and just have a gut feeling that there is something going on... get it checked out regardless what the doctor or nurse says. I was in horrible pain for days and felt like I was written off and just because it had been 16 weeks since surgery nothing could be wrong this long after surgery. But I was right, and I am so very thankful to have a proactive PCP that did the culture any way. It may not be anything major but let me say after antibiotics for 2 days I was already feeling better so I knew something was indeed wrong. Everyone is different and just because it isn't "text" book to one of the best surgeon's doesn't mean your concerns are "nothing to worry about" Its your body, and you know it best.
So I feel better that hopefully it is just this infection and will clear up and everything else will get better now. Although I will still be pushing for the mri just to ease my mind.
Thanks for all the advice and support on my other posts. I really appreciate it!
My PCP has no idea…she hasn’t ever had a patient with Chiari before. Which is why I want the MRI done. The only thing I have read would be the stitches to the patch not holding. So it’s wait and see I guess
I agree… I understand we don’t want “doctor bashing” on here but at the same time I would want to know some one’s true experience with a surgeon… Especially one that is so highly suggested for Chiari. Again, I don’t doubt his abilities as a surgeon as he is 72 years old and has a primary focus on Chiari… But I have had people on here contact me saying the samething about this surgeon… If only I knew before I had the surgery done. I only wish those would have contacted me before I choose him.
Beeba I will be getting an MRI but was hoping his office would at least tell me what all scans I should get to check everything.
Jackie said:
Oh...what a pity..can it be that repost the text with deleted name of those medical providers? Or let it be dr.A, B,C....etc
I had gotten bacterial Meningitis about 10 days post op my incision site leaked out some csf and it must have gotten infected had to stay in hospital for 7 days
Well the surgeons office nurse called me back and said she needs a "justification" to tell the doctor on why i need an mri?! Are you kidding me? Perhaps because I have scabs popping up, have an infection inside, and severe neck and head pain. Seems reasonable enough to me. And of course he is gone for two weeks so she would ask him then. I told her my PCP already said she would order one any way so regardless of his opinion I will have one. They do not cost me anything my insurance covers them 100% and regardless of that with all the issues I have had since surgery I would think it is "justified"
I will not wait two weeks to hear what he thinks, calling my PCP to have her write the order for a CINE study and brain/cervical MRI. And she also said "I can't believe you have an infection 16 weeks after surgery" Well believe it.. she said it isn't a "deep" infection so no big deal. Well my brain, my body, my daily pain = a big deal. I have had enough and believe it is time for a new doctor.
I had my decompression surgery in February. In late April I started to get some swelling and a sore that began to drain where my incision was. My Doc put me on some antibiotics but on Mother’s Day weekend it got worse and my Doc had me come in the next day. He and another Doc looked at it and decided to admit me into the hospital and did surgery on it that afternoon. After a couple days I was sent home. Well in mid June the swelling returned and so did the sore and drainage. My Doc did an MRI and said the infection wasn’t deep enough to do surgery again and put me on two heavy duty antibiotics. Well things never improved and my Doc had me come in this past Thursday and met with the Infectious Disease Docs and they ran some tests and they admitted me into the hospital and Friday I had another surgery where they cut the infected area out and put some power antibiotic directly into the wound and stitched me up. I was released from the hospital last night after three days of them pumping a heavy duty antibiotic into me by IV. So we will see how this one goes. I have a great Doc who has been doing everything to get me healthy.
If you cannot get an answer and still feel something is not right, don't stop until you find a doctor that will listen.
For us, it was Dr. Claire Francomano and Dr. Fraser Henderson, both in Maryland.
Dr. H often sees people after an unsuccessful surgery and helps them; his infection rate is EXTREMELY LOW (I researched it); his incisions are also VERY SMALL (2-3 inches) for brain surgery).
I know you are no where near Maryland, but if it becomes a serious matter and you need proper treatment.....
Also, Dr. Brad Tinkle and Dr. John Oro are well known.
I had my surgery last spring and after a two week stay in the Hospital I was sent home. After about five weeks my incision site wasn’t fully closing and started to show signs of infection. After a couple days of out patient antibiotic treatment and another CT scan my surgeon determined that he should go back in to investigate. So back to the OR and under the knife I went. He reopened the site, cleaned out as much infection as could be visibly removed and then removed the titanium plate they had put. Bacteria ESPECIALLY staph bacteria thrive where metal is present in the body. It turns out that I had a very aggressive MRSA put inside me! The Infection and Disease specialist told me that it had to have been growing on the plate BEFORE it went in my head.
I’m impressed that your immune system was able to fight this infection this long but it also worries me… It took only five weeks for my infection to do more damage than my CM did in 26 years! The sooner you kill this thing the better. I was on antibiotics for almost four months before I was infection free. It helped me to also supplement my antibiotic regiment with lots of vitamins C and D. The vitD also helps to rebuild the bones that are being comprimised by the infection.
I’m optimistic for you and I wish you the best. Keep fighting.
Wow you guys have definitely "been there done that" sorry to hear of all the issues with DizzyE and K9king78 I am hoping I don't have to go through all that or another surgery.. i don't think i could handle it! And definitely not with the same surgeon!
We will see how it all goes, I did start feeling better after I started the antibiotics and have a few more days them, guess we will know when I am done with them if the infection decides to keep coming back or not cleared up all the way. It is very frustrating.. i am glad I only took 10 weeks of my FMLA so I have 2 weeks to "play" with and not have to drain all my PTO or worried about losing my job. Used two days last week because of this! It all sucks! Chiari sucks!
I’m so glad to hear you will not settle for anyone telling you all is well.You are the only person living in your body,after many years of being told…there’s nothing anyone can do.I’m admiring you for your boldness and you know more than they do about your symptoms,you deserve answers that satisfies and gives you confidence in the surgery and the surgeon.The surgeon should want that too,Dr.s are working for us!!
Thanks Lynn! I have my MRI scheduled for Friday afternoon. Should have the report on Monday next week. I am supposed to make an appointment with the surgeon too but right now I just can't squeeze it in with him only doing office visits on Mondays and wednesdays, that is tutoring evenings for us, so will have to wait until after school starts. but i will get it scheduled soon.. maybe sooner depending what the mri shows friday.. hopefully nothing!