ANA Discussion Forum
General Category => AN Issues => Topic started by: Palace on October 27, 2009, 11:41:08 am
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Hello Friends,
No sooner than I arrived back from a month European vacation I went into an 8 day coma. (near San Francisco)
My ENT told me this week that possibly between the AN and the bone, is swelling and an opening for my bacteria-related Meningitis.
Meningitis is an inflammation of the membranes of spinal cord or brain. Babies or childen are the usual candidates to have this.
If I leave my local area again, I must get an advance of Levoflaxacin 750 mg. I should never be without the prescription as this can be prescribed by my ENT.
I initially received steroids, Vancomycin and Rocephin. (steroids for 4 days)
I'll make this brief and stay with the point. I wish to stress that with my two weeks in the hospital, I saw many a doctor and had numberous tests.
I was allergic to the first drug that I was given for a strong antibiotic.
After almost two weeks of being tied to a bed, I fell over and a front tooth instantly became angled!
I'm hoping the antibiotics also took care of the Mastoiditis which I was diagnosed with from the CT scan in the hospital. My regular MRI is in one more day which will tell all.
I had haemorphilus gram negative coccobacillus and hopefully, it's completely gone!
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Palace,
Wow, you've had a rough time of it. I hope you're doing better soon.
Regards,
Rob
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Palace ~
I'm dismayed to learn of the onset of Meningitis and the other infection and the problems they've recently caused. I hope (right along with you) that these issues are now resolved. Having a front tooth loosened is never any fun. Fortunately, dentistry can do wonders, today. The MRI will definitely be informative and I pray it will show no further problems.
Jim
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Thank-you HeadCase2 and Jim Scott for the well-wishes.
Dentistry is my profession and two days out of the hospital, I had my tooth repaired.
I posted not for recognition as, I don't write on the AN forum much unless I have something to share.
The fact that as a Gammaknife and Cyberknife patient I was told by two doctors so far, I might be open for bacteria entry from my AN treatment. I called Stanford and left a message regarding this as the doctors with whom I spoke, weren't from my AN team. The two doctors who feel I contracted the bacteria this way are, my ENT doctor and the Disease Control doctor where I was a patient for Meningitis. I will call Stanford back if I don't hear within a reasonable amount of time. I need to discuss this issue with them.
I'll try and keep you people posted once I hear from Stanford and after the results from my MRI are read.
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Palace,
I am so sorry you had to go through this! I am really surprised and actually somewhat disappointed that two doctors called you at risk for meningitis because of your radiation treatments. I aslways thought that open head surgery predisposes one to meningitis. In fact, I got aseptic meningitis after my first surgery but I never thought radiation predisposes one to any infection. I thought that it is one of the benefits of radiation treatments vs. surgery. Hm-m-m.... Could you please post what the doctors said in greater detail? Does the risk disappear with time?
With surgery the risk is usually present for the first 3 months at most and then it returns to that of other people. At least that is what I have been told years ago. It is possible that with the advancement of surgical techniques and shorter surgeries, the risk of meningitis is lower overall and is present for much shorter time than 3 months, but it is definetely there for any type of surgery.
H-m-m...
Eve
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Wow! Like Eve, I got aseptic meningitis as a result of my surgery, but I never thought you could get it from radiation! I am glad you are doing better. I did my time w/vancomycin and it wasn't fun. It took me awhile to shake the effects of that. Good wishes to you for a complete recovery!
Priscilla
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That's a good expression "did my time"! Mine was overtime,too and, boy, was it horrible!
Eve
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Palace -
medical stuff is like a foreign language to me, so I really can't comment intelligently on your meningitis.
Just wanted to say I'm sorry about all you've been through lately.
Haven't seen you around the forum in a while; missed you! Thanks for checking in - just wish the news was better.
Take care,
Jan
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Palace,
So sorry you have had such a time lately!
I appreciate your sharing the meningitis risk information - never heard that one before.
My thoughts and prayers are with you for continued healing.
Sincerely,
Sue
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Wow, you've been down a very rough road indeed. Very glad to hear you are stable and doing well.
I went to a talk regarding cochlear implants and the neurosurgeon speaking touched on the risk factors of cochlear implant patients for meningitis. He also said those patients who have undergone surgery for tumor removal are at a considerable risk for meningitis. Very interested in what your doctors say about this subject--I'll stay tuned.
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Palace, I am shocked as well to learn you got meningitis from radiation. It is surprising how many of us (I got meningitis after my 2nd surgery to repair a leak). I felt horrible during that time and had to go home with a PIC line and take antibiotics for several weeks. In fact almost every surgery I've had I have gotten some type of infection. My husband recently had some moles removed in a Dr's office and caught MYRSA in his toe. It has been over 5 months and he is finally seeing a Disease Control Dr today. I've come to the conclusion that I don't want to go into the hospital ever again because it seems I come out or my family comes out with an infection. UGH!!!
Palace, please keep us up to date on your situation. Our prayers are with you.
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Hello Everyone,
I went for my MRI very early this morning. The results regarding my Acoustic Neuroma tumor and Mastoiditis, should come back by next Tuesday or Wednesday.
Stanford returned my call today regarding my questions. The answer is absolutely a "No" that bacteria entered between my AN and the bone. Also another, "No" that radiation made me susceptible to Meningitis!
The team at Stanford did say that if I had invasive surgery indeed, Meningitis would be a possibility in that case. So, I've read the fact online and with some posts you people have contributed. This is the beauty of sharing your own research and qualified data.
We can't trust doctors who step outside of their specialty and voice an "opinion." I very recently encountered two such doctors.
I'll post the results of my MRI next week when it comes in.
Thanks to all of you who made this thread interesting.
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Palace,
Wow, that is some interesting stuff you bring up. Of course every doctor has their own opinion and Stanford is emphatic that NO-the meningitis wasn't caused from the radiation. The ENT was just speculating but they need to be careful what they speculate about!
Let us know what the MRI says
Hope you're feeling better by now. No fun :(
Maureen
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Update:
The only symptoms I seem to have now that relate to possible mastoiditis are the jaw is tight and popping. I have occasional severe right ear pain. My airway is still blocked with some swallowing problems. I thought the throat problems were from the tube down my airway for over eight days. I've got bulging discs in the neck so, I have off-and-on pain I suffer there.
I'm still hoping the extremely strong antibiotics which were given twenty days for the Meningitis, are successful for the Mastoiditis. I'll know around midweek from the MRI reading.
Thank-you for sharing any experience about the subject of this thread.
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Palace,
Sorry I'm coming late but wanted to say how sorry I am for all you've been through. I hope the MRI shows and the antibiotics are working and things start to get better. You've certainly been through more than you share of health problems. Please keep us posted.
Sending wellness wishes your way,
Wendy
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Hi Everyone,
I'm needing 1.5 hour surgery on my Septum. (complete airway blockage on the right side) The ENT doctor mentioned he got the MRI back however, he didn't say if the mastoiditis problem was solved. I'm not going to assume it is. I left a message at his office if someone would call and inform me the proper data. The ENT doctor should call me back as, this is the information I was waiting for!
I'm going to assume my Meningitis problem is well behind me.
I spoke with Stanford and the doctors haven't received the results back from the MRI so, they could inform me about my Acoustic Neuroma tumor. (current size)
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Hi Palace,
I got aseptic meningitis after my retrosigmoid surgery. I remember being told that it was a complication from surgery due to the brain swelling. Maybe just the brain swelling no matter what treatment can actually play a factor in it. I know it sucked big time. Hope you are feeling a lot better by now. I have since found out since I had meningitis that it is playing its role in my headaches now and can for the rest of my life. That along with the scar tissue that showed up on the post MRI will keep the headache afloat. Hope you dont end up with this constant side effect.
Take care,
Lois
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I go this morning to the ENT office, for the third time in a couple of weeks. (this time for the doctor to confirm I need right side nasal septum surgery---same side as AN)
Stanford called Friday to tell me they will probably receive my MRI data Monday (today) and give me a call right away with the results.
I got a prescription of Levaquin last Friday as, I might be flying to New England tomorrow or the next day, for a week. What concerns me is the prescription is for 10 pills. I think the ENT doctor who was the "stand-in" for my regular ENT doctor over the weekend, just took the reading off the chart and had that called into the pharmacy. Of course it says 10 pills as, that was the exact amount I needed to continue from the two weeks of IV drip. (antibiotic at the hospital) I would think I'd need more pills than 10 if I were starting all over again, someday.
I'll ask today if only 10 days of Levaquin is enough to combat a fresh bout of Meningitis, should I be so lucky to contract it again. (and why is it that people may get Meningitis easier once they had it?) Also, I went into a coma with no warning and I wouldn't have been able to take the pills!
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Hello,
I just got a call from the ENT office and I'd been trying to get an answer about the proper dose of antibiotic to take on trips out of the area. I was planning the trip to New England for the beginning of this week but, nobody called me back with an answer until just now. The ENT doctor told the front desk to call me and tell me it's up to my primary care physician. I was supposed to return on Tuesday from the Boston area. It's closing time at the doctor's office and getting dark now. I'd have to leave a message for my primary care physician tomorrow morning and who knows when she would get back to me. It would drag over the weekend. It's a very frightening world to try and get business acomplished. The moral of this story now is, "Keep calling until you get business finished and do as much research on your own, as possible." I've not heard from Stanford about my MRI data yet, either.
Good luck to all of you,
Palace
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Stanford just phoned and yes my meningitis is all clear. Stanford reported that I need to discuss with my ENT doctor what I should do about my mastoiditis still being present. Stanford wants to know what this doctor recommends. I would think another round of antibiotics, possibly. This doctor is very difficult to reach as, he has a satellite office and is only in Santa Cruz one or two days a week. I tried before closing tonight and they had the message machine on early, as usual. (with no way to leave a message) The audiologist was supposed to FAX my hearing test results to Stanford a month ago. Stanford never got the data. I tried to call several times to report the lack of information being transfered to Stanford and also ask about the mastoiditis problem. (swelling still present in the whole body) My left thumb is still half numb and the other half of it hurts.
I asked my original measurements of the tumor upon diagnosis. I'm now told (different that largest point being 22mm) it was 21 X24 millimeters. Now the tumor size reads, 19 X 18 X 13 millimeters.
I'm still awaiting the ENT doctor to go-over the CT scans and call me to set a surgerical date for nasal septum operation.
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:o
Re: Telogen Effluvium from meningitis
I lost half of my hair in one week. I saw a doctor last night and he feels this will continue for another couple of weeks or more. (typical, 4-5 mo. after meningitis, trauma, strong meds, stress and perhaps even---childbirth)
The good news is by giving up acid related foods and liquids the camera showed I no longer have a lump on my vocal cord. I acomplished that in two months. They grow back if a person continues to lay down after wine, coffee and even, decaf coffee although more safe. Maalox shoud be used after ingesting acidic veggies, fruits, juices and other liquids. (laying down of course, is more acid reflux)
Back to the meningitis subject---I did have my blood drawn just to make sure my hair loss isn't related to thyroid problems. (which I don't believe I have)
Hair loss can be hormonal, lack of protein in the diet, thyroid related or in my case, reaction to severe illness to the body which was meningitis five months ago.
Being a "natural thick-hair redhead, I've enough hair left to get by in public."
Palace
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Hi AN Friends:
The thyroid lab report came back normal!
My hair is still falling out in huge chunks distributed all over the head. (so, this is probably from meningitis as the doctor said)
I doubt that it's hormonal related nor a diet issue. I haven't eaten enough protein lately but, have since I begn losing over half my hair, I'm eating more.
Stay healthy guys and gals,
Palace