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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

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: ACDF

Post Physical Therapy

Day by Day with a Movement Disorder Posted on June 27, 2015 by DBMay 10, 2016  

I’ve just graduated from Physical Therapy for my neck. I hadn’t planned on having PT after this particular operation, as my internet research seemed to indicate it was not a normal progression of healing with neck vertebrae fusion. But I had one bundle of muscles at the very base of my skull that just refused to relax. After all, they had been in spasms for years now, and were very happy continuing to cause me pain.

So my surgeon suggested PT. When I started, it was all I could do to get 20 pulls on the weakest yellow Theraband tubing. By the time I graduated this week I could do 40 pulls on the green tubing (red had gotten too easy). Of course I have to rest in between sets of 10 to give my muscles a chance to recover, but I was pleased with the improvement. They spent about 15 minutes of each session doing some rigorous massaging on my neck, trying to release the muscles. I even had one acupuncture session.

The last day’s massage did not hurt as much as the others had, so hopefully that spasm is beginning to release.

I have not been on any muscle relaxers now for about two weeks. I do get pretty uncomfortable in the late afternoon, but the new prescription was giving me problems, so I quit taking it. It’s ironic that Medicare made me stop using Methacarbamol, because “it would make me sleepy and at my age that increased the danger of falling”. HAH! The new one that’s supposed to be safe for me almost makes me Narcoleptic!!! I drop off to sleep out of nowhere when I try to use it. Will certainly be getting that prescription changed when I see my Primary next month.

Pain Level Better

I can’t complain about my pain level, as it’s SO much less than I had dealt with for years. By comparison this is like having a mosquito bite instead of being covered in huge poison ivy blisters!

Now I just have to be disciplined to continue exercising at home. We have plenty of Theraband lengths in all the colors, as well as weights from one pound and up. I had just started using two pound weights for a few PT exercises. I won’t be scared to do stuff now that I have been able to do supervised exercises.

I’m very thankful for my improvement and praise God for my bone and muscle healing.

Posted in MITO | Tagged ACDF, bones, exercise, Medicare, muscle spasms, pain, Physical Therapy, surgery | Leave a reply

Bones, Muscles, and Pain Equals Surgery

Day by Day with a Movement Disorder Posted on May 7, 2015 by DBMay 8, 2016 2

Bones

Two years ago my bone scan came back showing excessive bone loss. My mother’s hip broke and caused her to fall (not the other way around). That, and the scan results, put me in the high risk category, so I’m very motivated to improve my bone density.

My OB/GYN put me on daily Evista to treat the Osteopenia, but I had a severe muscle spasm problem while on it. Not surprising, considering how much jerking, twitching, and trembling I’ve had at various times over the years, due to my Mitochondrial Myopathy. I stayed on the Evista for two months, thinking surely my body would adjust to it, but it just kept getting worse.

(My Orthopedist suggested I try Forteo, which is a daily self administered shot, and I have not had any bad side effects with it. I’ve been on it for eight months now.)

Muscles

Even after I stopped taking Evista, the muscle spasms didn’t stop, particularly in my upper back and neck. I started upping the doses of Methocarbamol muscle relaxer and Neurontin (for nerve pain), trying to control the pain. The more pills I took a day, the more foggy I became. I couldn’t function without the pills, and just barely with them.

My Neurologist did another MRI on my neck and sent me to my Orthopedist for a series of epidurals. These helped, but not consistently, and they will only do four a year. So the relief from pain was fleeting. The last epidural I had didn’t help at all.

Pain

By February of this year I was in severe pain all the time. It had radiated down my arm, midway down my back, and gone up to the top of my head. The headaches felt just like someone had a huge nail pressing into the top of my skull. February 25, 2015 was my turning point. I ended up in the ER with my blood pressure over 200, and my head about to explode. They brought it down with IV meds and sent me home.

Surgery

I started on Amlodipine blood pressure pills and went to my Orthopedist to ASK him for surgery. After looking at the new X-rays and MRI of my neck, he agreed. On March 24th I had Anterior Cervical Discectomy and Fusion (ACDF) of C4-C5 and C5-C6. I stayed in the hospital that night and came home the next day. The hospital stay is a blur for me, because I was on a Morphine pump. About all I remember is the nurse telling me to “push the button” over and over. And I remember choking and gagging on whatever it was they tried to feed me.

Recuperation

I had researched the surgery, of course, so I was aware that they go in from the front of the neck, moving the esophagus aside so they can reach the disks and vertebrae. Hoarseness is a common side effect of this surgery and often swallowing difficulties as well. For most people the hoarseness only lasts a few weeks. At first it was an effort to squeak out even a syllable or two, and everything I tried to swallow choked and gagged me. And there was more swallowing pain than I had expected. I should have known there would be considerable pain; they sent me home with a prescription for 90 Norco tablets.

It’s been about six weeks now, and I’m still a little hoarse, although much better than I was to begin with. I’ve been using Thickit to make swallowing liquids easier since the first week at home. I’m needing it less and less now.

Outcome

The voice and swallowing problems have been very frustrating, but become less of an issue each day. But the neck, shoulder, and back pain have diminished from 8-10 to 3-4!!! I’m no longer on blood pressure medicine, and I usually only take two muscle relaxers a day.

I was apprehensive about having this surgery, but I’m glad I did.

I consider the operation to be a Success!! Praise God for his gracious healing.

Posted in Medicines and Supplements | Tagged ACDF, blood pressure, bones, Forteo, hoarseness, MITO, Mitochondrial Myopathy, muscle spasms, Osteopenia, pain, surgery, swallowing | 2 Replies

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