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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: frontal sinuses

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

Surgery Week One Diary

Day by Day with a Movement Disorder Posted on August 7, 2017 by DBAugust 7, 2017  

Surgery Monday

I was very pleased with the Callahan Eye Hospital in Birmingham, Al., where my two surgeons coordinated their work and did both the tear duct and frontal sinus surgeries during one session. That was a huge help, as I only had one anesthesia session to recuperate from and one time span to heal. The whole hospital staff were extremely accommodating to my Mitochondrial Myopathy needs. They told me to bring a blanket to the cold waiting room for the time prior to being taken back. (Daughter said she was glad to have it during the long wait for me to be through.) And they kept piling warm blankets on me once I was in pre-op.

I also asked the Anesthesiologist to at least consider using a smaller size intubation tube, as my throat pain after surgery is always much greater than it should be. I think he did that, as my throat has not been as sore as after previous surgeries of late. I can’t be sure about that, because I’m mouth breathing right now, and that’s keeping it irritated.

And, they definitely were very careful to protect my neck with lots of padding on each side, as I have two fused vertebrae, and C7 is more degenerated that it was last year.

They were able to release me, but I was extremely weak when we got home. I did not have to spend the night. We planned on having the walker handy, in case I had trouble walking up the steps. And we certainly needed it. It was all I could do to shuffle my right leg at all – it just would not cooperate. So once I was in the house I sat down in the recliner and didn’t move any more that day, except for bathroom visits. Daughter stayed overnight and hovered over me and took care of anything I needed. I slept well that night.

Tuesday

I was able to move around much better on Tuesday, so one daughter went home and the other one came to spend the day. I had to use an ice pack several times during the day for my eyes and for my nose. The mustache bandage was very uncomfortable. They drape a roll of gauze under your nose and tape it across the cheeks. And you have to mouth breathe. Not pleasant at all. I was expecting this, though, as this is my third sinus surgery in the last two years. The other two surgeries were pretty standard. This one was complicated, so it’s no wonder the surgery took longer, and I feel much worse.

I started testing my glucose levels, but I really wasn’t hungry and didn’t have any trouble with my numbers. I spent the day taking meds and dozing in and out. I used the sinus saline rinse for the first time, but there was so much dried blood up my nose it did not do much good.  But it was a start, anyway.

Wednesday

Wednesday was NOT a good day! I used peroxide on q-tips to clear out all the dried blood in the entrance to my nostrils. And now I can tell why I can’t breathe through my nose – just gurgle discharge. I have a huge set of stents up my nose on both sides. The Otolaryngologist had said he might have to revise my septum again to reach what he needed to do – and evidently he did just that. (I just had the deviated septum straightened a couple of months ago.) These splints are much larger than what I’ve had before – it feels like it’s plastic ribs, shaped like the spokes of an umbrella, shoved up my nose so it spreads the nostrils wide. No wonder I hurt! And no wonder I can’t breathe!!

Not being able to breathe is making sleeping extremely difficult – I only got a few hours worth on Wednesday. My glucose numbers were nudging up a bit, compared to the baseline numbers I had last week. But the range was still pretty good. I still wasn’t hungry, but I made myself eat. I can’t chew anything – hurts where the Ophthalmologist operated on the right eye blocked tear duct. Strange that it was the simple surgery that is hurting, not the major bone cutting done around my eyebrows. Of course I’m still full of pain meds. It might be a different story about what hurt if I were not on them.

Thursday

Thursday was worse. My glucose levels were out of control. I was having to test before and after meals to keep an eye on the numbers. And no matter how careful I was with what I ate – it kept going up. It’s been ten years or so since I had to educate myself about Diabetes, so I had to Google what I needed to do to get it to come down quickly. I drank two glasses of water, did a little housekeeping as exercise, and ate some protein. It came down some – but not enough.

As for sleeping, this was the last day for four doses of the corticosteroid that is causing the blood glucose to spike – I made a decision to NOT take that fourth dose last night. And I took two Benadryl before bed. With that in me I was able to sleep until about 2:30 AM before the suffocating feeling just made it impossible to go back to sleep. So I alternated reading for a while and then trying to go back to sleep. So I did get some rest – but no more sleep.

Friday

I was very relieved today that my glucose numbers were almost back where they should be after breakfast. I still have several days of 3x Prednisone before it tapers off to two a day. I was hopeful it would behave from now on. But I had terrible numbers before and after lunch and dinner again. I had planned on just doing a couple of pricks a day – but instead I’m going to have to buy another round of test strips. I re-opened my myfitnesspal.com account and started planning my meals to get the right amount of sugar and calories. That helped me figure out what probably spiked lunch so badly, so I won’t be eating that again for awhile. It’s getting complicated trying to find soft foods that give me fiber, too. Staying on all liquids is not doing my bowels any good. Insulin resistant starch is my friend right now.

I tried to go to sleep, but the suffocating feeling was just overpowering. So I sprayed two Afrin pumps in each nostril and managed to sleep until 3:30 AM. I was so dry when I woke up I couldn’t get comfortable. Mouth breathing is no fun!

I was able to cut back on my pain meds today. I hope I can continue to decrease that dosage. I had more success with today’s attempt to use the NeilMed sinus rinse, now that the entrance is not all blocked with crusting. And for the first time I felt pressure pain under my left eye when I squeezed the solution into the sinuses. It’s the left sinus over my eye that was seriously blocked with an inch or so of abnormal bone growth. That’s the reason I had to go to the scull base surgery specialist to have this surgery.

Saturday

I still have all the nervous jitters from the Prednisone, almost to the point of hyperventilating at times. Using the sinus rinse is not really helping much. It feels like the water is going up there, but not coming back out. There must be a lot of dis-solvable packing up there that is just soaking it all up. Then I drip discharge the rest of the day. There is still bright red bloody discharge at times, and there’s much less clotting clumps than I had with the other surgeries. So I must be really packed up there.

I’m also still fighting to get good glucose numbers, but they’re not spiking quite as badly as they were at first. Once I find a meal that works, I’m just having that meal again. I can’t taste anything, anyway, so it doesn’t really matter. I can’t smell ANYTHING. I’ve kept Vick’s Vaporub on my nose since I got home, and I have yet to smell it at all. I’m sticking to soft foods, but feeling like I probably could eat something with a little chew to it, if I could just figure out what I dare try.

Even though I’m on a lower dose of steroids, the sleep time is getting worse – not better. A lot of that is coming from the over powering feeling that I’m suffocating – it’s almost like I’m drowning. This must be what water boarding feels like. I’ve tried relaxing breathing, and that helps a bit – but doesn’t last. Then the weird sensation takes over again.

Sunday

Routines are getting a little easier, but I still forgot to test my glucose before breakfast today. So much to remember to do! I did not try to go to church – nowhere near ready to talk to people. Hubby went on without me, and I carried the phone around in my pocket all morning. I did take a long steamy shower, which helped my head somewhat. We have a very nice handicap accessible shower with a chair and plenty of bars, so I felt safe.

We decided to go on out to our usual Chinese buffet for lunch. That was my first time out of the house for the week. I used the MyFitnessPal app to figure out what I could eat – I know exactly what they serve and what I’m used to that would work.

I was not at all expecting to be as weak as I was – even walking from the car into the restaurant was tiring. So I got the soup and sat down, letting hubby get food for me. He is so sweet to me – he’ll do anything to help me. I took care of him when he had his heart attack, and he always takes care of me when I need help. I expected to feel better when we went back to the car, but I was regretting that we had not brought at least a cane. I wall walked all the way down the porch to where we parked.

So I was wiped out the rest of the day. It stayed hard to walk around, with my right foot refusing to lift. I just shuffled along in my socks, holding onto the walls. That’s what I call wall walking – sometimes furniture walking. It’s easier than using a walker in the house.

I didn’t seem quite so wound up and stressed over breathing at bedtime, but sleep was still elusive. I have no idea how much I got, as I was up and down all night long.

Post-Op Week One Summary

I knew this recuperation was going to be much worse than the two sinus surgeries I’m already had – one just a couple of months ago. It was a much more serious surgery, after all. But I was not expecting all this problem with my glucose levels. I’m thankful he had warned me it would be an issue. I also was not anticipating so much of a problem with breathing. I KNEW I would have a lot of trouble with the Prednisone jitters, muscle weakness, and no sleep.

I’m looking forward to seeing improvement this week, as the routines are becoming easier. And I will see both doctors this Thursday. Daughter will take me, so hubby does not have to deal with the downtown UAB traffic and the narrow one way streets on Southside.

I prayed hard to have this surgery, and God worked a miracle to get it done quickly. Without His intervention, I would not have even seen the scull base surgeon until this October!

Now I depend on Him for the healing, doing all I can to promote that healing.

 

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

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

One Surgery Down… Two to Go!

Day by Day with a Movement Disorder Posted on July 14, 2017 by DBJuly 15, 2017  

One Surgery Down

My ENT dismissed me yesterday, so all is doing well from the deviated septum and polyp removal surgery. He was not, at that time, able to perform the planned Balloon Sinuplasty on my frontal sinuses. The CT scan clearly shows that the sinuses above my eyes are filled with “something”, but we have no idea what. It could be mucous, or maybe infection, or maybe even fungus. During surgery he could not find the opening from those sinuses to my nose. The opening apparently has grown over with bone, likely from the chronic sinus infections I’ve had over the years.

Two to Go

He facilitated an appointment for me with a UAB specialist, as drilling into these upper sinuses takes specialized equipment and a specially trained surgeon. This doctor is the head of the Ophthalmology Department at UAB. UAB is a world renowned teaching hospital, so I’m lined up with the best of the best in our state.

Because the doctor’s office made the appointment, and he asked that it be expedited – I’m seeing this Ophthalmology specialist on August 10. My blocked tear duct surgery is scheduled for August 15.

I’m feeling less stressed now that I have the appointment to deal with the upper sinuses. I feel lousy, with lots of pressure and some pain above my eyes. I sound all stopped up, and that’s exactly the way I feel. I’m keeping the blocked tear duct swelling down with daily antibiotic/steroid drops I’ve been on now for about six months. The drops control the swelling, but that area of my face stays sensitive. My eyeglass nose pieces aggravate it, too.

I have faith that this is all going to turn out with me feeling much better. But I’ll have to admit I wish it could all be over right now. Patience…Rosemary…Patience.

 

Posted in Surgery | Tagged bone growth, frontal sinuses, infections, opthalmologist, surgery | Leave a reply

Week ONE Surgery Update

Day by Day with a Movement Disorder Posted on June 23, 2017 by DBJune 23, 2017  

One Week Post-Op Surgery Update

I had my one week out from surgery update appointment yesterday. My ENT is pleased with my progress. And he took the septum splint out. I can breathe a lot better now. He was surprised that I was still seeing bright red blood in the mucous, So he told me to stop taking the Vitamin E again. That’s the only blood thinner supplement I take.

We asked him about the frontal sinuses that he had planned to clear out, but did not do anything with. All I could remember in the post-op haze was that he didn’t get into the sinuses over the eyebrows because of bone. I thought he was saying the cavities were filled with bone, but that’s not what he meant. He did not do the Balloon Sinuplasty up there because the opening to those sinuses is completely blocked with bone.

He explained what was involved in operating to open that area up, and it sounds very involved and scary. THAT would NOT be Same Day Surgery, if I end up needing it. We’re praying that he won’t have to do that.

Of course that depends on whether enough has been done to stop all the post nasal discharge that has kept my throat irritated and sore for the last couple of years.

Comparing Surgeries

I had the FESS endoscopic surgery on the Maxillary and Ethmoid sinuses last October. The post-op mess with bloody discharge and dissolvable packing was very yucky. Having that done would not be a good idea for a person who was the least squeamish! And it took a lot longer than my original ENT had expected for the mucous lining of the Maxillary sinuses to grow back properly.

This surgery was also endoscopic, but he did not remove the mucous membrane. He cut off a large bone spur and straightened my septum. And he removed some polyps. I did not have the huge amount of bloody mess coming out of my nose every time I used the saline irrigation. And I was able to stop using constant pain meds in less than a week. The pain was much worse the first time and lasted a lot longer, with all the mucous membrane that had to heal.

So MY plan of my Summer of Surgeries didn’t go quite as I had expected. I’m already scheduled for external surgery in August to make a new opening between the right eye and my nose, so the tears won’t be blocked any longer.

I’ll be praying every day that I will not need the external frontal sinus surgery!

Posted in Surgery | Tagged Balloon Sinuplasty, frontal sinuses, sinuses, surgery | Leave a reply

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