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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: skull base surgery

Week Two Post-Op

Day by Day with a Movement Disorder Posted on August 11, 2017 by DBAugust 12, 2017  

Week Two Post-Op

I’m now in week two post-op. I’m still struggling to sleep, to breathe, and to control my blood glucose numbers. Hopefully, by the end of this week I will be feeling much better!!

Monday

My blood glucose levels are still giving me trouble, no matter how hard I’m working to even it all out. That’s getting very upsetting … which will only make the numbers go higher from stress. We had Podiatrists appointments yesterday afternoon, and I figured even though I am far from feeling good – it’s not like I had to do anything but sit there and let him cut my toenails LOL. I did as an after thought when we were leaving, decide to take the quad cane with us. I was glad I had. By the time we drove there it was all I could do to walk from the handicap space up three steps into the building. I tested my after lunch (postprandial) glucose level and it was 257 – WAY over what the top limit is supposed to be, which is about 140. And I had used the MyFitnessPal to make sure our lunch was appropriately low sugar.

We bought another box of test strips on the way home, as I obviously need to keep testing.

Sleep is still eluding me, too. I woke up feeling like I had slept well, only to go to the bathroom and see that it was only 1:30AM. No amount of trying to relax would get me back to sleep. So I read the Kindle and tried to go back to sleep off and on for the rest of the night.

Tuesday

My fasting glucose number this morning was good, but I’m still weak and shaky. This was my last day to take two Prednisone a day. Tomorrow I’ll be down to one a day for another three or four days. I can only pray that these last few days of high steroid dose will soon be over. I am in misery. The suffocating feeling of having completely blocked off nostrils is making it impossible to get any rest.

Wednesday

I’m still experimenting with some way to get some rest, preferably sleep. So last night about 8:30 I took two Benadryl, thinking surely that would make me sleepy. Nope. At 11:30 I got back up and took two more. I had warned Hubby I intended to take more Benadryl if I could not sleep, so he’d know what was going on if I had any issue with taking so many. Anyway, with four Benadryl in me over a period of three hours – I could not get back to sleep. Ugh!

So I tried a different strategy. I quit TRYING to go to sleep. I did not open the Kindle. Instead, I lay in the recliner, more or less upright, being very conscious of forcing myself to breathe through my nose, even though it sounds like snoring and feels like I’m going to suffocate. I did some Tai Chi breathing forms and just lay there. As far as I can tell I never did actually go to sleep, and I eventually did read for a while. But I felt more rested this morning, anyway.

Fasting blood glucose number was good, so hopefully I’ve worked out a set of meals that will stabilize it. It will help that I’m tapering off the steroids.

Thursday – Appointment Day!!!

I CAN BREATHE!!!!

Daughter and twin granddaughters took me to the two surgeon appointments today. I had wisely decided to take the transport wheelchair, as UAB is a huge complex and I knew I’d have to walk a long way. I took my Glucose test kit with an ice pack, and we managed quite well.

I expected the skull base surgeon to remove at least some of the stents, and I was right. He pulled out the large plugs from the lower part of my nose and also a lot of fairly solid packing. Then he used a suction tool to remove lots of bits and pieces of packing, clots, and blood. Of course he had sprayed up in there with a numbing solution, so it was not uncomfortable. Daughter and I both like that he works with a camera attached, so we can watch what he’s doing internally. This was obviously not something my hubby wants to see, so he didn’t go with us.

The surgeon said it looked “GORGEOUS”. He’s very pleased with the results. I asked him some questions about why he thought this had happened. He attributed it to the first ENT surgery causing the blockage. I never did like that first ENT and had fired him as soon as I had healed from that first surgery in 2016.

I also wanted to know if he had cut out any bone or tissue that could have damaged the olfactory nerve function. But he assured me that what he did was nowhere near the nerve endings that control smell. He did test me with an alcohol swab, but I couldn’t smell it. I will now be using the essential oils he had me get to try to re-train my sense of smell. I haven’t had much taste or smell now for several years – before the first sinus surgery. Keeping my fingers crossed on that!

New Prescription

He gave me a new Compounding Pharmacy prescription for medicines to add to the Neilmed salt pack. This new prescription has an anti-parasitic, Budesanide, a steroid, and an antibiotic that specifically targets MRSA and Staph. Hopefully this steroid will not cause as many issues for me as the Prednisone has. I have a couple of days of Prednisone left, so we’ll see soon enough.

Budesanide is contra-indicated for Myasthenia Gravis, so I’ll probably have some muscle weakness from it. But if I can stand it, I’ll need to tolerate it. We’ll see.

After that appointment I saw the Oculoplastic surgeon who had opened up the blocked tear duct and put a stent in place. That was a quick appointment, but getting into the building is not really easy. Again, I was very glad to be able to sit and let them push.

IHOP Reward

It was way past lunch time by the time we left there, but I had been looking forward to IHOP all day. That was our reward for all the trouble. I took a Hydrocodone at breakfast and brought one to take at lunch, so the pain was reasonable.

We had a good time at IHOP. I had planned online what I could eat, so my numbers would stay decent. And they did. I shared a spinach, mushroom, and cheese omelet (minus the Hollandaise sauce) with daughter, and she ate the pancakes that come with it. My numbers stayed good!

I was slap worn out by the time we got home, so I stayed in the recliner and the girls did some housework for me.

I really wasn’t hungry when it was time to eat, but I was beginning to hurt again – so I had a small “safe” dinner, so I could take another pain med. And…. my numbers were high! That had to be from being so tired. It was a loooooong tiring day.

I SLEPT!!

I went to bed early and I SLEPT! I didn’t get up until sunrise! How wonderful!!!

I’m praising God for his goodness to me. I made a lot of thanksgiving prayers to Him while drifting off to sleep last night – wonderful blissful sleep……………

Friday

I was tired, but we went to eat at our favorite restaurant with family today. I enjoyed my first meat that needed to be chewed. Because I was careful with what I ordered, I had good glucose numbers.

Tear Duct Trouble

My eye that had the blocked tear duct was bothering me a little, and he had said I could use OTC eye drops. So hubby stopped to get me some. He always puts medicinal drops in, because I waste them. But this was just a lubricant, so I figured I could do it myself. Of course I got it all over my face – nothing unusual there. But I felt what I thought was a strand of hair of mine that refuses to stay away from my eye, and I tried to brush it off. The next thing I know a rubber band feeling thing was rubbing across my cheek.

I pulled out the stent in the tear duct!!!!!

I did NOT know there was anything on the outside of my eye. He didn’t tell me!!! (I have three witnesses to that, as daughter and granddaughters were in there yesterday when he saw me) I went into full hysterics, to put it mildly. I called the doctor’s office, sobbing so hard she could hardly understand me. They put me on hold and came back with directions for how to finish taking it out. The doctor was in surgery, so they would call me back if he wanted to see me before my THREE MONTH appointment.

The lady I had sobbed hysterically on the phone with called me back later in the evening to see if I was doing better. I really appreciated that and thanked her profusely. I got her name and intend to write something nice to her supervisor. She said that the Oculoplastic Surgeon would have told me about the thing sticking out of the corner of my eye when I saw him on May 31, almost three months ago! That is WAY too long ago, with lots of doctor appointments and sickness in between. He should have had the courtesy to remind me, particularly since I had told him it felt gritty and irritated to me.

I started this week with a hope that week two post-op would find me feeling better – and I DO, now that I’ve calmed down from the tear duct disaster.

 

Posted in Surgery | Tagged breathing, frontal sinuses, insomnia, post-op, recuperation, skull base surgery | Leave a reply

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