I have the cold and congestion going around and been coughing and sneezing.. then Thursdays I felt more scabs on my incision.. again. PCP did a culture and I have another infection. Why does this keep happening? My surgeon completely dismissed the last infection like it wasn't true regardless of the lab results. Needless to say I am not seeing him any more.. its a long story but he is rude, and wanted nothing to do with me after surgery. My PCP says the hard part is she doesn't know how "deep" the infection is and although it is on my incision in the same spot again she doesn't know an answer for me.. but she is just my primary doctor. I am seeing a new neurologist next month but I am just at a loss why this keeps happening. And my surgeon apparently sent her a letter after my last appointment with him saying that there is no "evidence" in the test results that would make him believe there is an infection inside the incision.. that the infection could be an ingrown hair folicle or caused by something else. My doctor even said his letter was clearly a "CYA" on his part. He knows I am filing a complaint against him, he also wrote in her letter that he would reimburse me for my time off work and trip to his office for my last appointment. He told me the samething at my appointment when he completely dismissed me and the issues I am having but to write it in the letter to my doctor?!
Any way, any suggestions on why 5 months post op i would keep getting scabs that do have fluid that comes out, enough to get a culture on too? I feel worse than I did before surgery and still get migraines every 10 days that put me in bed for days. Something is not right.. and unfortunately I cannot go to the NS nor will I go to any other surgeon in his practice after the way I was treated.
Oh as for my flow study, I got one after the last infection and even though my NS admitted he did not look at my MRI, he wrote in the letter to my PCP that the MRI with the CINE Flow was not adequate enough for him to say if there was any flow issues and that he suggested getting another one at his hospital and he would reimburse me for that trip as well. Not gonna happen though... he is covering his butt from how he treated me, and blowing me off after I let him listen to the voicemails his nurse left me. He KNOWS they did nothing when they should have.
I know some of this may not make sense but I don't want to say in detail as I am filing a complaint about this surgeon regardless of his CYA efforts. My main question/concern is why would I still get scabs and have results come back testing for a mixed bacterial infection.
I am so sorry that you have had all these infections..I went to your page and read your past discussions you posted...You have had infections , pretty much, right along since surgery...
I am concerned that the very 1st infection was never knocked out of you ...hence, you keep having symptoms of infection...because you do, indeed , have an infection.
Just throwing this out there for you...I completely understand that you cannot go back to the NS who did the surgery...What about an Infectious Disease Doctor???
Infection that persists....Just my opinion..is a significant concern..nothing to take lightly...can you call your primary and see if he/she thinks a consult with an infectious disease specialist would be appropriate for you..this just cannot keep going on...
That has crossed my mind about it just not going away from the start of all of this. Unfortunately even after the results of the first culture the NS said it was "not very likely this is an infection in the incision" and that there is no way to prove how "deep" the infection is basically. My PCP doesn't really know what to think either, can't blame her since she is a neuro in any way at all. She knows I am seeing a new neurologist in October so guess it is the wait and see what they say. I have not considered going to another NS only because I figured I would just get written off by them as well. A neurologist is a step I guess, but I am sure it will go no where. I have never thought about in infectious disease specialist. I will ask and see what see thinks.
It is all just very frustrating that this NS has written me off after his operation.. like his part is done. Well his part isn't done when I am having issues with the incision he made in my head. I am just at a loss as to what to do or think at this point. Just hoping that it isn't something serious that lands me in worse shape than I already am, especially since he has done an excellent job covering his ass as my PCP says. Its sad, and sad that a lot of people would love to see this NS because of his rep. if only they knew the truth of what so many others have also experienced at his chop shop. If you are his text book case, you won't have a successful outcome or care by him.
Thanks for all the input. I hoping this antibiotics work and buy me some time until I see the neurologist.
lori said:
Hi..
I am so sorry that you have had all these infections..I went to your page and read your past discussions you posted...You have had infections , pretty much, right along since surgery...
I am concerned that the very 1st infection was never knocked out of you ...hence, you keep having symptoms of infection...because you do, indeed , have an infection.
Just throwing this out there for you...I completely understand that you cannot go back to the NS who did the surgery...What about an Infectious Disease Doctor???
Infection that persists....Just my opinion..is a significant concern..nothing to take lightly...can you call your primary and see if he/she thinks a consult with an infectious disease specialist would be appropriate for you..this just cannot keep going on...
Im so sorry to hear this. The infection sounds like something that needs immediate treatment. Even a NS who is not a chiari expert should be able to render an opinion on an infection in an incision. Maybe your PCP could get you in with another NS on an urgent basis? No matter what you decide, best of luck.
I think you should pursue a referral to an infectious disease doctor. With an infection I think I would feel more comfortable there than a NS.
Has the incision completely healed? At 25 weeks my incision was healed but I did get several ingrown hairs around the incision so it's possible this could be an ingrown hair that has gotten infected so hopefully it's not deep into the incision.
Have you been tested for EDS? That causes slow wound healing and is something to think about it you are having issues at this point in your recovery.
Yes my incision healed long ago, I did not have staples just internal stitches, I did not have any issues after surgery wih it not healing or opening back up, only scabs occasionally and after getting blown off by the surgeons office for weeks my PCP finally did a culture herself at 17 weeks knowing something wasn't right.
I have not asked about an infectious disease doctor yet, I will ask her what she thinks.
I do see a new neuro in a few weeks.
I had a 3 day migraine that landed me in bed this week and nothing worked not even my usual vicodin, nothing. My doctor called in Sprix to try which is a nasal spray that is Toradol and that didn't work either. But I was too stubborn to go to the ER because I figured I would just get blown off or get a shot and be sent on my way so I suffered through it for 3 days. I am almost out of FMLA for the year since I had 10 weeks off for surgery and a separate claim for migraines, and PTO is almost out.. I am just over it as we all are!
I honestly feel like I had brain surgery for nothing. All m symptoms are still here, some worse, none really any better, and still get migraines every 10-14 days like clock work putting me unable to work and function as a mom to 2 boys with special needs and many appointments and tutoring and therapy. I just cannot be "disabled" when my babies need me more. I am seriously at my wits end. My parents drove 3 hours here on Wednesday to help me with the boys, and I finally said the words.. I don't want to live this way. I have a very high tolerance for pain, ya know considering I can't feel a needle being stuck anywhere in my body, and never really have, but my mom knows when I am tears from pain it is severe.
All the waiting for new patient appointments and then to get turned away because we should be fine, and this pain isnt real, I hate to say it, I just don't have the patience for all that, or the time to take away from work and family. Granted I am doing it any way but eventually I will stop and just look at it as, it is what it is, and it isn't going to change or get better but probably worse. Might not be the right attitude but I know you all understand, and right now my kids need me more, so if I have push through it I will... regardless.
Sorry for the rant.. just been one of those weeks! Hope all is well