Sinuses Almost Healed

Posted on by December 2, 2016  

Almost Healed

I’m glad to say that this time my ENT is pleased that my sinuses are almost healed. He dibreded (scraped and used suction to remove) a little on the same side that was still heavily scabbed two weeks ago.

I will soon finish the steroid powder added to the neti pot saline solution that I’ve been doing twice a day for the last 3 weeks. I wasn’t seeing any blood any more when I washed my sinuses out. But I’m seeing a little now, thanks to the dibreding.

Mucous Discharge

I am still dealing with an almost constant discharge down the back of my throat. The mucous no longer looks infected, but it’s thick and unpleasant. And it’s keeping my throat irritated. So he wants me to use Flonase nasal spray until I see him again in six weeks. At that time he will make a decision on whether or not to pursue allergy testing.

This has been a much longer and drawn out process than I had expected, even though I had done considerable research prior to having this surgery. Do I regret having it? No, I can breathe now. But I’ll be glad when this recovery is completed!

FESS Healing Continues

Posted on by November 23, 2016  

I went to my ENT again today, and this time he says the healing is not progressing as rapidly as he would have liked. He didn’t seem overly concerned, but I have more hard scabbing than he would have liked to see. Cleaning all that out was even more unpleasant than last week. I hadn’t expected that, although I had taken a Lortab ahead of time, just in case.

I told him about the compounded Steroid powder not dissolving well. He wasn’t concerned about that, as there was no sign of any solids accumulating in the sinuses. And he didn’t seem surprised that the small sinus cavity between my eye and nose is still sore. I’m going to use the neti pot in between the washes morning and night that have the steroid added to the saline powder. Hopefully that will help the scabbing dissolve better and not have my sinuses all dried out.

On a positive note – I can definitely breathe better. It’s been so long since I could take a deep breath without my nostrils sucking shut – I guess I’d just gotten used to it. Quite the rush of air now when I take a deep breath.

Sinus Surgery Recuperation

Posted on by November 11, 2016  

Week ONE Post-op Recuperation

The first week of Functional Endoscopic Sinus Surgery recuperation was far from pleasant. I was in a considerable amount of pain for several days. I took Hydrocodone every six hours, but it was not enough to completely control the pain. I had a very yucky bloody discharge mostly down the back of my throat. And I also had a couple of nosebleeds. I was told to use Afrin spray to stop the nosebleed, and that worked both times.

The yucky mess down the back of my throat, as well as the mouth breathing, plus the irritation caused by being intubated, kept my throat really sore and my voice very raspy. And it killed my appetite. I didn’t feel like chewing, so I drank chocolate protein drinks and stuck with soft foods for several days.

Using the NeilMed nasal irrigation was extremely unpleasant and messy the first few days, but toward the end of the first week the bloody mucous and dissolvable packing had mostly been flushed out. The yellow mucus post nasal drip I’ve had for months continues to be present.

My biggest problem was the way my allergies went crazy three days after surgery! I started SNEEZING BIG TIME! Of course I had been warned to not sneeze through my nose, so I was “coughing” the sneeze out my mouth. Along with the sneezing, I had that horrible “I’m about to sneeze” feeling most of the time. I called my ENT office and was told to take Zyrtec twice a day as long as I needed it. I stayed on that double dose for a week, and that’s much better now.

Week TWO Post-op Recuperation

I had my first FESS post-op appointment yesterday on Day 10. They numbed my nose and then used a suction tool to debride the surgical sites inside the nostrils. I had read plenty on the internet beforehand, so I knew to take a Hydocodone before the appointment. Even with that in my system, it was not easy. It was an odd sort of pressure sensation that made me feel like he was pushing directly on my brain – not exactly pain, but I was clenching my fingers into my leg. I have to have it done again in ten days and probably several more times past that.

My voice is beginning to sound more normal now. I’m still sneezing some, so I’m on the Zyrtec directions dosing now, taking it just once a day.

Recuperation On Target

My ENT is very pleased with how the sinuses look. He said the healing was right on target. I’ve been SO very careful to follow all the post-op directions, it pleased me that he was happy with the way it all looked inside. And I can tell already that breathing through my nose is SO much easier!

Sinuses Going Crazy

Posted on by October 21, 2016  

My muscles have been behaving lately, but my SINUSES have not!!! I’ve had more sinus infections this year than I ever remember having. Most of them resolved normally with over the counter medicines and time. But several took antibiotics to clear up.

I’ve had several eye infections this year in my right eye and twice this year I’ve had extremely painful sinus toothaches – both on the right side. And my most recent bout of post nasal drip would not resolve, even after having three rounds of different antibiotics.

Antibiotic Problems

All these bouts with antibiotics this year has created a situation that I’m really concerned about. I’m now keeping a list of all the antibiotics I can no longer take, because I had bad side effects, or they don’t work on me any more.

Sinus Surgery

My ENT suggested having surgery to widen the openings to the sinus cavities so the mucus can drain more easily. I was reluctant to have it done, so I tried to stall and see if the latest round of antibiotics would knock it out.

I decided to also try using a neti pot – a simple device used to wash out the mucus from the sinuses without using any medicines – just a solution of sea salt and baking soda in boiled sterile water. It’s easy enough to do, and I had high hopes that I could unclog my sinuses myself.

But within a week of finishing the prescription, I was back to feeling yucky and coughing up gunk from the back of my throat. So I’m back on another round of antibiotics, and scheduled for sinus surgery – on Halloween! So I’m praying for a Treat of less problems with my sinuses – and NOT a Trick!!

3 Parent DNA in the News

Posted on by October 17, 2016  

You may have seen the news stories about a baby boy born this year with 3 parent DNA. If you’re interested, it’s easy to find with a Google Search for “3 parent dna”. This form of artificial conception is legal at this time only in the UK. So the American doctor who performed this procedure went to Mexico, where rules are evidently more lax.

2 Kinds of DNA

The human egg cell from the Mom has two distinctly different kinds of DNA. The DNA in the nucleus carries all those characteristics we associate with family, like hair color, ethnicity, stature, etc. The other kind of DNA is NOT in the nucleus. This DNA is in the mitochondria organelles found in each cell, including the mother’s egg cell. The Mitochondria are responsible for converting our food into the energy each cell needs to function properly.

We ALL have some level of damaged nuclear and mitochondrial DNA. Mutations occur naturally over many generations of procreation. Over our lifetime, we eat unhealthy foods and take chemicals into our body intentionally and unintentionally. We are assaulted by various viruses and bacteria. The older we get the more faulty DNA we have.

The mother in this news story had already miscarried 6 times and had carried 2 babies to full term. But they were not healthy babies, and both died very young. They had Leigh’s Disease, which is caused by faulty mitochondrial DNA passed from the mother to her babies.

Mitochondrial DNA is passed from mother to child. The baby does NOT receive any mitochondrial DNA from the father.

So, they harvested egg cells from the mother and fertilized the eggs with the father’s sperm. Many people who cannot conceive naturally go through in vitro fertilization. So that’s not that unusual.

How it Was Done

What made this conception so ground breaking is what they did BEFORE they fertilized the egg with the father’s sperm. They literally took the Mom’s nucleus out of her egg cell and put her nucleus into another woman’s egg cell. This prevented the mother’s defective mitochondria from being passed on to her baby. And then they implanted the fertilized embryo into the mother’s womb.

The baby boy has all the genetic characteristics of his Mama and Daddy, except the donated mitochondria work the way they should.

Controversy

Obviously this little boy’s health is going to be followed by the medical community – probably for his whole life. And just as certain will be a debate on whether this doctor should have performed this procedure without sanction from the medical community.

Having miscarried and having trouble even getting pregnant myself, I now suspect my own mitochondrial disease contributed to our difficulty conceiving. Let the medical community and legal authorities deal with the ethics, research methods, and legality of this 3 parent DNA conception.

I can only pray that this little boy will grow up to be a healthy young man.

Physical Therapy Helped a LOT

Posted on by August 6, 2016  

I went to Physical Therapy three times a week for six weeks, and the exercise has made a huge difference for me. I thought they were going to kill me at first. It took a few sessions for them to appreciate that they could not push me the way they would most people.

Exercise Intolerance

Exercise intolerance is a common symptom with Mitochondrial Myopathy, and I sure have it! My muscles were so fatigued the first couple of sessions that it was all I could do to walk out of the place, even with a quad cane.

Circuit Training

So they cut back on the number of repetitions and rotated me through a wider variety of exercises. That way each muscle group had a chance to recuperate before being challenged again. We finally worked out a circuit of squats, knee lifts, leg raises, and such in sets of ten. I never did get to where I could handle more than two circuits of ten, but that was SO much better than when I started.

Adapted Exercises

I found out pretty quickly that the lying down exercises, particularly the bridge, aggravated my neck. (One of the fusion screws from my surgery last year never did completely fuse bone to bone.) So they helped me find substitutes that could all be done either sitting or standing.

We have a safety bar along one wall in the bathroom, so it’s very easy for me to do all the standing ones there. And there’s a sturdy chair in the bedroom just perfect for the sitting exercises.

Staying Motivated

That means there’s only one obstacle now to improved mobility – ME!!

The challenging part is making myself continue with the physical therapy here at the house. I pray that I can stay motivated this time, since I’m so pleased with the results!!!

Physical Therapy Progress!

Posted on by July 6, 2016  

Exercise

I’ve been to physical therapy five times so far, and I started seeing a small improvement on the last two sessions. I have scheduled sessions for later this week and three times next week. Then I plan to stop and save the rest of my PT allotment for the year, just in case I need them for some other issue.

I can manage all the exercises they have me doing here at home, except for the equipment. It’s just a matter of making myself spend the time to do it. It’s way too easy for me to sit at the computer too much. I can always find something that needs doing online. I work on my blogs and online stores, as well as our free Plushmemories Facebook search service and the CubeCart forum I help moderate.

I’m headed in the right direction, and I’m very relieved about that. I became so weak while on the Clonazepam I was afraid I would never get my strength back. I’m very thankful my fears proved to be groundless.

Tizanidine

As for the Tizanidine prescription my Neuro put me on, I’m not overly impressed. It seems that it helps me get to sleep very well. But when it wears off about 2:30 or so in the night – I CAN’T get back to sleep! I’ve had that issue off and on for years, and it’s very frustrating. There have been a few nights when my muscle spasms were so bad before bedtime that I felt like I just HAD to take the med. And then I ended up being awake for hours and hours, unable to fall back to sleep when it wore off.

So I’m very happy with the muscle strength improvement I’m seeing at Physical Therapy, but not with the Tizanidine.

Tizanidine plus Physical Therapy

Posted on by June 23, 2016  

My Neuro is trying me on Tizanidine (Zanaflex) for my muscle cramps. He also prescribed physical therapy to help me build up my leg and core muscles again. This med is a short life drug meant to temporarily relieve the spasticity of Multiple Sclerosis patients. So, like every other drug he has tried for me, this is another off label drug. There are no meds that are designed to treat Mitochondrial Myopathy. So he prescribes meds created for other diseases and disorders that involve muscle spasms or seizures.

Tizanidine

I’ve only had a few doses so far, but I can tell it takes about an hour to take effect and works for maybe 5 or 6 hours. Of course he has me on the lowest possible dose right now, with the prescription providing for three times a day if I need it. I’ve used it the last two nights to help me get to sleep. That’s when the cramps are the worst, because my mind is not occupied with anything else to distract me from the pain.

Physical Therapy

Yesterday was my first time to go to PT since I went last year after my cervical fusion surgery. It’s the first time I’ve had therapy for my legs in many years. And I’m the first client with Mitochondrial Myopathy this physical therapist has ever worked with. She found out very quickly just how weak I’ve gotten. I don’t think she was prepared for how easily I fatigue to the point of jerking and twitching. So she plans on alternating working on my core and leg strength to keep me from losing control of my muscles so quickly.

I have been trying to exercise here at the house more and more each day, but I am obviously still very weak. I’m much better than I was after trying to use Clonazepam. But I’m not self disciplined enough to make myself exercise as much as I need to. It’s just too easy to sit, since I don’t notice the cramps as much when I’m busy on the computer. So I am confident that having someone make me work harder than I want to is going to be good for me.

And I can only hope that the Tizanidine helps with the muscle spasms. Time will tell.

Weak Leg Muscles

Posted on by May 22, 2016  

I’m dealing with very weak leg muscles right now, and nothing I’ve tried has improved my walking. I had assumed that once I was off the Clonazepam my walking would improve, but it has not. My sinus infection has settled down, so my teeth no longer ache, thank goodness. But then I started having UTI symptoms. Since I still had a week’s worth of the antibiotics, I started back on those. And of all things – I threw up after the first dose, just as I had the first night on the antibiotics for the sinus infection. I definitely won’t be taking any more of THAT antibiotic!

My stomach has been so jangled with these meds that I started on a month’s worth of Align yesterday. Hopefully the powerful probiotics in that brand will get my digestive system back on track. I’ve been watching what I eat, but as weak as I feel I need to get as much protein in me as possible. I tend to stay on the borderline of anemia all the time, anyway, so eating foods with iron in them are a necessity. But foods with high iron tend to be hard on my tummy – a regular catch-22.

So I don’t know if I should blame my muscle weakness on the Clonazepam, or the infections, or the antibiotics, or the bland diet I’ve been on to settle my tummy. All I know is that I’m shuffling around all day, barely picking up my feet. It reminds me of the old Laugh-In gag with the dirty old man barely moving his feet and then falling over. It was funny way back then, not so much now.

I have a Neuro appointment mid June, so I’ll do what I can to get my strength back in my legs before then. If not, then hopefully he can suggest a different med to deal with my muscle spasms. I stayed off the old Methocarbamol while my tummy was so upset, but have tried a few doses the last few days. It just doesn’t help much any more. And the weakness does seem to be more in my legs than in my arms.

I am trying to walk around in the house as much as I possibly can, going up and down the basement stairs several times a day, but nothing seems to be making any difference. I lost a few pounds in the last few weeks, and I hope I keep that weight off. It seems reasonable that weighing less would put less of a burden on my legs. We’ll see what the Neuro says about that.

As you can tell, I’m discouraged right now, but I try to stay hopeful that the next doctor’s appointment will provide a new treatment to try that will actually help. Hope springs eternal. And I am thankful to God that I am able to do as much as I can do! Sometimes I need to remind myself of that.

Back to Methocarbamol – Not as Weak – Still in Pain

Posted on by May 10, 2016  

I’m finally completely off the Clonazepam and back on the Methocarbamol and Neurontin. And I have a Neuro appointment in June. I had hopes that the time off the meds, while I tried Clonazepam, would make them effective again – but no such luck. They take the edge of the pain, but don’t really stop it. But I’m not as weak as I was at my worst on the Clonazepam at least.

Sinus Infection

I’ve had a bout of sinus infection that caused one side of my face to ache like a toothache. In fact I actually went to the dentist, thinking I had cracked a tooth clenching my teeth in my sleep while I was still on the benzo. The x-rays showed it was more likely a sinus infection. So my doctor put me on an antibiotic. He also told me to stop using the regular OTC sinus medicine I’ve been using, as my blood pressure was way to high. He said to be sure I buy a brand that has HBP on the label, and we bought some on the way home from the doctor.

Antibiotics usually give me digestive problems, but this time it hit as nausea and vomiting. I ended up having to get the doctor to call in something for that. So I haven’t really had what you could call a normal week yet since being back on my old meds. I can still hope that the pain level will subside.

Muscle Pain

It’s hard to describe these pains – I call them traveling pains, for lack of a better term for them. I will ache in one place, say my shin, for 10 or 15 minutes, rub it for a bit  or use a hot pad on it, then it subsides and within a few minutes my other leg hurts in the calf. Repeating the rubbing and heat, and the next thing I know it’s my neck that’s hurting. A few more minutes and my arm hurts. This goes on all day long and all night long. In the daytime, as long as my mind is occupied, such as when I’m working on the computer, it usually doesn’t take over my awareness. But let me get still, like at church? It’s NOT comfortable. The same thing at night – I don’t sleep well, waking up off and on all night long trying to get comfortable.

The odd thing is, I remember waking up during the night screaming as a young child, begging for my Mama or Grandmother to rub my legs. They called it growing pains back then, but now I wonder if I wasn’t already having MITO symptoms.