Rhonda’s Story

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My story kind of starts with the clear fluid coming out of my right ear. After doing some research and three years of being treated with various antibiotics, which included suctioning the fluid out, I asked the ENT if it could be CSF, Cerebral Spinal Fluid. To which he had the audacity to say, but you’ve never had a head trauma. Well… It seems a spontaneous CSF leak is also a diagnosis. Iv’e since found out that other “Floxed” people have had a similar leak out the ear, which the odds are pretty rare for this particular leak. A Myelogram of sorts found the leak, but doctors in my city tried to cure the leak with yet another drug Diamox (Acetazolamide) that I was severely allergic to. The hole was about the size of a nickel! Feel it, if it feels like satin, it probably is CSF. Put some on a handkerchief, it halos, it’s CSF. That easy! They told me the hole was due to the Tympani bone being too thin and over the years with ear infections and such it probably just eroded away and my brain fell through the hole. They removed that small nickel-quarter size piece of brain matter and biopsied it (just dead brain matter). An Otolaryngologist at U of – Ann Arbor, MI, along with a Neurosurgeon were able to repair it by Craniotomy in 2001. It took them over seven hours to do so. I also received major doses of antibiotics, so strong that it blew all my veins in my arms. I looks like a freak show. At a follow-up visit, when I mentioned the repetitive ear infections being the cause, the Dr. denied making that statement. I’m now thinking that the original plugged ear feeling I had was after a few courses of antibiotics for ear/sinus infections and maybe due to “brain-swelling” as other Floxies have found out. I’ll never know the truth. I have been given so many antibiotics throughout the years, including Levaquin for double pneumonia and again for the onset of pneumonia in just the last 10 years, as well. I am female and only 52 yrs old. I was diagnosed with Diabetes and High Blood pressure in the same visit at around 45. I’ve had to make my primary physician check my blood to see why I didn’t feel well all the damn time to ultimately find out I had. CLL/SLL Cancer, though I’ve been in remission for two years now as of April (this is a Cancer that 70 year old Eastern-Euro men usually get!), none of which applies to me. I now have Myocitis (leaking muscles), they want me to have a muscle biopsy to grade it, so then they can prescribe me more steroids. No thank you, I have had Prednisone and hate-hate it. Then there’s the Fasciculations under the skin of my calves just resting, as well as cramping leg spasms during the day and night. Spasms even come into dreams and I’ve actually dreamed I’d been shot twice recently and awoke to a severe spasms. So apparently I liken it to being shot at the onset of these cramps, also the spasms twist my feet to abnormal angles. I have two newer hips, after having bone grafts at age 12 on both and Osteo-Arthritis having set in. Then there’s the possible Neuropathy in my left big and second toes and lighter in on right side. This transpired after spinal disc surgery on lower five discs to relieve severe Sciatica L1-S1. I did all the PT faithfully, to only re-herniate at least one disc only 12 weeks later. I didn’t do anything to re-herniate it, but the pain management Dr. says there’s also a lot of scar tissue in the Sacral region now. Just got Tranforaminal Injections again for another bout of severe pain from Sciatica last week, and one two weeks prior. They work, but it comes back about every two years for me. Gout came after injuring my toe this summer, on the dog lead as she ran out the door. Dr. says I have to take the Allipurinol all the time now to keep my Uric Acid down. What?? Now, beginning Glaucoma (just found this out last month), after experiencing blurring with kaleidoscope like visions blockages. I just got injected with iron today on account of my Hemoglobin being low and I had to have them check it on account of my new habit of wanting to chew ice all the time. Never have before. Sure enough Hemoglobin was low. I go for the other half next week. I feel like I’m 80 and that’s every damn day! I want to slap my doctor when he even mentions my weight, which has ballooned due to the ailments to stabilize @288 lbs, though I’ve taken off 30+ lbs and kept them off, he wants more. So he put me on a drug called Jardiance that’s supposed to work to remove sugars in my body and aid in weight loss. My body rebelled and gained almost 10 lbs, I was always hungry on it. Took myself back off and I’ve lost five of them again in three weeks since. Their damn drugs are a joke. I’m just happy to get out of bed in the A.M. and move throughout the day.

3 thoughts on “Rhonda’s Story

  1. How awful to have been through all that. It’s like dominoes, isn’t it, with the drugs. I imagine much of what you are suffering is a consequence of pharmaceuticals. I hope you will seek out an integrative doctor or naturopath who can start moving you away from chemical drugs.

  2. Our stories have striking similarities. I was floxed by Levaquin in 2016. I have had “wet” ears since. I’ve never collected or looked at the fluid. I have also woke to an ear full of dried blood I had no explanation for. I get the muscle spasms, mainly in my legs and feet and my foot has been so contorted I thought it would break! The whole foot turned in and was twisting under. I’ve had my toes pulled apart and out to odd angles by these spasms too. Lost all the cushioning in the soles of my feet. My heels and Achilles’ tendons are super tight and painful, no amount of stretching helps and most times just makes it worse. Also tore my medial meniscus on my left knee for no good reason. I’m in pain every day, all day. I advise people to avoid any Fluoroquinolone antibiotics like the plague! Best of luck in your healing.

    • Dawn, among my 30 plus horrifying side effects, head to toe, were torn meniscus in both knees. I had prolozone injections in both, and so far so good! Not too expensive, and allows the body to heal itself naturally. (Also used for tendons, areas of arthritis, etc) You may want to look into it. (Not to be confused with prolotherapy which operates on the same theory but does not use ozone.) An ND did mine but there are some osteopaths and sports doctors who now do this. Takes a few months to notice a difference, while your body heals.

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