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Daily Journal with Mitochondrial Myopathy

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My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: bone over growth

BOTH Surgeries NEXT WEEK!

Day by Day with a Movement Disorder Posted on July 26, 2017 by DBJuly 28, 2017  

First Two Surgeries Did NOT Solve Sinus Issues

I’ve had two fairly routine surgeries in the last year that were supposed to resolve my long term sinus problems. But they did not. My ENT planned on doing a Balloon Sinuplasty on the Frontal Sinuses. He also planned to fix my Deviated Septum and clean out some polyps in the Maxillary Sinuses. He could NOT find the opening into the Frontal Sinuses, but took care of the rest of the planned procedures.

Answered Prayers!

I asked my ENT to try to find a doctor to open up the Frontal Sinuses who could coordinate with my already scheduled Blocked Tear Duct surgery – even if it meant waiting for a date they could both work in. So when I saw him a few weeks ago, he referred me to the Head of the Otolaryngoly Department at UAB. He scheduled an appointment for August 10. But the next week I had a call from the UAB doctor to move the appointment up to THIS week! That’s God at work, for sure!! I’ve been praying that this new specialist would be able to coordinate with the UAB Ophthalmologist, who was already scheduled to fix the tear duct. And praise be to God! They WILL be able to do both surgeries on the table with one anesthesia and one recovery! I am SO relieved!

I saw the Otolaryngologist who would do the surgery on my blocked sinuses YESTERDAY (Tuesday). The really unexpected part is that I have now been scheduled for surgery on this next MONDAY!! Talk about answered prayers!!

I have an abnormal new growth of infected bone (neo-osteogenesis) that has closed off my upper sinuses, which are completely filled with infected mucous. He still expects this to be Same Day Surgery, but it’s actually a serious surgery. He’s specializes in skull base surgeries. And this will take months to heal.

Steroids

I will be on strong corticosteroids for some time after the surgery – as I understand it, it’s to keep the swelling down so the mucous grafts will heal properly. The grafts will cover the exposed bone (where he’s cutting out the infected bone). I will also be on some kind of steroid sinus rinse for the rest of my life to keep the bone infection from flaring up again.

I do not handle steroids very well. The last time I took them my muscles got so weak I could barely walk. That’s definitely a mitochondrial issue. CORRECTION – I made an assumption that it was a MITO issue, but after doing some research online it appears there’s something called steroid induced diabetes. So it may be my un-diagnosed at that time Type II Diabetes that caused the weakness the last time I took strong steroids.

Anyway, these doctors are aware of that and will try to use as weak a dose as necessary. I have bought a new glucose testing kit, as he says the steroids will cause my insulin levels to rise. I haven’t had to worry about my Type II Diabetes in some years, as I am very careful to eat properly. I don’t even use meds to control it at this time. Praying that will continue to not be a problem.

So I’m very relieved I don’t have to wait for months to have a coordinated surgery – in fact I’m ecstatic!! Not so happy with the news about the steroids. I really would appreciate your prayers for me and for my hubby, who will not handle the surgery very well emotionally.

Posted in Surgery, Uncategorized | Tagged bone over growth, diabetes, frontal sinuses, neo-osteogenesis, prayer, surgery | Leave a reply

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