I have had chronic back pain for 8 years. In October I had a caudal epidural injection for the pain. Within 24 hours I was quite ill with a headache, nausea and eventually fever. My wife called the on call doctor with the facility in N.C. where I had the procedure. I live about 2 hours away. He didn't get very alarmed and suggested that I wait it out for about 5 days unless the fever increased. The same night it did and there was severe pain in my back and head and vomiting. I went to a local ER. There I was given anti-nausea meds. and pain meds with little improvement. Of course, the focus was rudely on my chronic pain situation. My wife tried to direct them to the issue( post neuro/spinal) procedure at hand. The closest thing to a diagnosis was a migraine and an upper respiratory thing coming on. I didn't even know what day it was. I was discharged while still vomiting in the parking lot.
Less than 48 hours later my wife called an ambulance for me to another ER. Same thing there. The focus was on my chronic pain. They finally did a head CT and a CBC. They said all was normal and there was nothing to treat. By the way, we have reviewed the lab report and there were a lot of abnormal results. They said that they didn't treat chronic pain and wouldn't get insurance reimbursement. My wife insisted they call the after hours doctor at the N.C. facility. Between the two of them they said that the hospital here and there would not admitt, so no transfer.
Less than 48 hours later after my so called migraine, cold and back strain I managed to make the trip to N.C. where only the P.A. saw me and said all the doctors had missed a virus and gave me an anti-fungal mouthwash, headache med. script and a topical patch (NSAID) for the back pain. Actually we were relieved. Still, not comfortable with he diagnosis I went to a nurse practitioner that had never met. She took her lunch hour to examine me and right away called an ambulance. My symtoms had waxed and waned and trust me were unbearable for long hours at a time. About that time I started having trouble talking.
The next hospital did get antibiotics on board and found PSEUDOMONAS BACTERIAL MENINGITIS with a spinal tap. I was in the hospital on antibiotics (cefepime) for 5 days and went home on IV therapy for another 10. I still felt sick before coming off them and had a relapse within 3 days. Again, in the hospital and discharged for a 6 week IV treatment. I am scheduled to come off them on Christmas Eve. I am still symptomatic and the doctor is planning to have my spinal cord stimulator removed so I can safely have an MRI. He thinks there may be infection associated with the stimulator or surgical hardware.
Meanwhile, I am getting nowhere with my workers' comp. approval even with the pain care facility taking responsibility. Nobody is getting paid, so far. I have tried to get a second opinion. They won't see me because of this and said that my Medicare won't pay either. Taking out the stimulator is a difficult decision but it seems I have no choice. I know this is quite complicated.
Sorry for the long post. I left out a lot of other absurd things. We are about 8 weeks out and several apologies late and still I am not cured. Does anyone have a similar story?
How ironic! My name is also Rik and I went through a similar experience with bacterial meningitis last January/February. Here's what happened to me. I was in 3 different hospitals for over a period of 30 days and it was not determined that I even had meningitis for almost 10 days. By then, the damage was done. I could not walk.....I had (and still have) terrific headaches from the encephalopathy associated with the meningitis.....my heart stopped and I had to be resuscitated and placed on a ventilator for 3 days.....I have lost almost 80% of my hearing in my right ear and 50% in my left.....I have neuropathy in both of my legs from the knees down.....and, I have a lot of short term memory problems. Currently, I am taking 12 different prescriptions on a daily basis and 4 others as needed. I am 60 years old and had a very well paying job, which I lost because of my inability to return to work. In addition to my family doctor, I see, on a regular basis, a cardiologist, neurologist, audiologist, urologist and orthopedic surgeon. I had 9 weeks of home health physical therapy learning how to walk again and 2 shoulder surgeries from damage I did to my left shoulder when I fell a couple of times. I have 2 attorneys, one who is trying to get me on disability Social Security and the other who is going after 2 hospitals and 5 doctors for not diagnosing my condition soon enough - among other things. So, Rick, I don't have to imagine what you went through. I had a similar horror story as well. Best of luck to you. Rik
Let me also add that anyone who has flu like symptoms that continue to get worse over a couple of days < edited> it may be something other than the flu. < edited >
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Hi Rik, I'm June, Rick's wife. Thank you for responding to his post. I'm sorry that you have been through so much. I was with my husband at the hospitals and saw what this condition can do. He is recovering from surgery at the 4th hospital. On Tuesday he had his spinal cord stimulator removed to eliminate it as a source for continued symptoms. He cannot have it replaced because scar tissue would make surgery likely to paralyze him. It appeared not to be infected and a MRI was negative for abcesses. There is no explanation for continued head and neck pain. It was suggested to be phantom pain. His head is obviously still attached so I don't quite get that. The numbness in the foot is probably arachnoiditis. His CSF is negative now. Antibiotics are to be continued for about another week. I pray that he will be asymptomatic and will not relapse.
Today his home health nurse came out. She was new to us and we told her how the meningitis was introduced. She was interested because she has an elderly patient that was delayed with a diagnosis of bacterial meningitis. She too just had an epidural injection. Bacterial meningitis from an epidural injection is very rare so this news is disturbing. While I don't know accurate details about this woman it certainly causes me to wonder if something more is going on. I did understand that it was one of same the hospitals that delayed her diagnosis that he went to. I just made a formal complaint to the ER manager there. She has ignored me but one of the other hospitals that missed his infection has at least apologized somewhat.
We have met a lot of doctors since diagnosis and most of them seem afraid to get involved in his case. My husband was disabled from a great job too, only from a back injury. I don't think you will have any more than the typical Social Security claim difficulties and hopefully less. I hope with time your problems will diminish. I sure don't blame you for taking legal action. We are considering doing the same. There was no excuse for missing my husbands condition, especially following an invasive neuro. procedure. I thought he was having a stroke on the first visit. One doctor, consulted by phone, said not to admit to the hospital there or transport to his. It's just inexcusable.
Hi June - I sincerely hope that Rick is recovering well after having his stimulator removed. My best advice is to never - and I mean - NEVER stop asking questions if you have concerns.
After being in two hospitals during the first 10 days of my illness (I was still undiagnosed at the time) my family became extremely concerned when the attending physician had basically done only 2 things. First, he ruled out any possibility of my illness being influenza related, and secondly, he kept me heavily sedated with a combination of demerol, ativan, haldol, oxycodone and morphine while they waited for me to get over my illness. My son has since told me that I did not have pupils any larger than the head of a pin. That was when they demanded I be moved immediately to a different hospital. That move literally saved my life.
Within 6 hours of being transferred, I coded and had to be resuscitated and placed on a ventilator for several days, but not before having a spinal tap to check for meningitis. My wife explained to the receiving physician what my symptoms were and he immediately called for the spinal tap. It proved positive and the rest, as they say, is history.
Let me share with you something my neurologist told me several weeks after I was finally released from the hospital.....she told me that any time that influenza has been ruled out and you continue to have flu-like symptoms, especially the stiff neck and the severe headaches, meningitis must be considered and tested for. She said anything less borders on negligence. She further said that the longer a diagnosis is forthcoming, the less the chances of a complete recovery and if it is bacterial, the chances of you dying are greater.
I'm not sure what emotions Rick is feeling right now, but for a long time, I lived in fear that I would never get better. I finally woke up one morning and got out of bed without assistance and became "mad as hell"! I feel like I have lost an entire year out of my life due to the incompetence of 2 hospitals and at least 5 doctors. I will never live another day of my life without pain and limitations and I believe that someone should pay for this. My attorney agrees. I don't know if you and Rick are at this point yet, but I can promise you that if you have the same feelings I do about my treatment, you will. I went from being a very young feeling 59 year old to a worn out and tired feeling 60 year old.
I hope that things get better for Rick real soon, and remember, never stop looking for answers if you don't like the ones you are getting. Best of luck! Rik
Hi Rik, It's been a combination of obstacles in my husbands treatment. The incompitance, of course was the beginning. There is the reluctance of the medical community to get involved (after diagnosis) when possibe malpractice is the source of meningitis. Also, worker's compensation insurance was not on board for over 2 months. The injection was for his work related injury and the infection resulted from it. Even so, payment was being delayed to the doctors, hospitals and home health, etc. Dealing with the adjuster was traumatic. The attorney wasn't able to start payments. We weren't either until contacting the company that my husband worked for. They approved treatment overnight. Now that the bills are being paid and his headache and other symptoms are still present it is time to see a neurologist.
While having surgery in another state he had an ID specialist consult during the hospital stay. Since his CSF is clear the doctor says there is no explanation for the symptoms. I had read quite a bit about symtoms after clearing the infection. He specifically mentioned phantom pain and compaired it to war injury.
Several of the doctors in the pain center where my husband has been a patient for about 6 years visited last week in the hospital. One was the phone consult guy who did nothing to help diagnose meningitis. He actually said that being a chronic pain patient just made my husband feel a regular headache more than the average person. Oh Yes! We are mad! You would think that this person who nearly was responsible for my husbands death would do better. The doctor in the same group who did the injection has been moved so at least we didn't have to endure his presence. We have quite a few people to be angry with. It's time to see a lawyer.
We are both tolerant people but there has been so much suffering and loss. I think that had he been diagnosed and treated on day one, day 2, 3 or 5 he would have recovered better.
It's been very difficult, as you know. We are tired and I'm not sure if he feels like it now but we will pursue a attorney consult soon. I hope a neurologist can shed more light on the persistant symptoms. Thank you so much for sharing your story. It has been very helpful.