Surgical Solutions And Resilience

If you read my last post, you know that I live with a number of health issues, and have for many years. What I didn’t talk about was a more recent issue that has come up involving a bump on the back of my left ankle and my Achilles tendon that is tearing away from the bone.

The bump is called a Haglund’s Deformity. I’ve had it for over a year now and it seems to have developed after I had my right hip replaced, perhaps in response to a changed gait in my walking. I didn’t notice it at first, not until it became painful. What my Physiatrist (my pain doctor) and I didn’t realize is that it was also affecting my Achilles Tendon and that tendon was slowly pulling away from the bone. It wasn’t until I could no longer walk without constant pain that we came to understand the full severity of what we were dealing with. 

I was sent for x-rays and the results showed the truth. Since November 2018. I’ve been wearing an Air Cast to help protect my ankle and reduce the pain when I walk. We’ve tried Botox in the calf muscles to try to tighten the tendon so it will reattach to the bone, but if this doesn’t work, it’s going to mean a complicated ankle repair in surgery. 

So, why I am I sharing this with you?  Because this isn’t the only surgery I’m facing in the next little while and I want to talk about resilience. 

Resilience is a funny word. The official definition is this: 

re·sil·ience
[rəˈzilyəns]

NOUN

1. the capacity to recover quickly from difficulties; toughness.
“the often remarkable resilience of so many British institutions”

2. the ability of a substance or object to spring back into shape; elasticity.
“nylon is excellent in wearability and resilience”
synonyms:
flexibility · pliability · suppleness · plasticity · elasticity · springiness ·

Now, I wouldn’t say that definition number 2 is all that appropriate as I certainly don’t feel all that “elastic” or “springy”.  I do agree with the first one though. I think I have a remarkable ability to recover from difficulties. With everything I’ve been given in life to handle, and each new challenge I’ve been given to face, I’ve been able to rise to the occasion and deal with it as it’s happened.

As I said, I am facing another surgery this year and it’s one I never thought I’d hear myself say – Brain Surgery. Because of my Trigeminal Neuralgia, we have come to the point where I’ve exhausted every medication out there and I’ve been left with no other options for treatment. I am meeting with the Surgeon on April 30th and the surgery we will be discussing is called Microvascular Decompression. It has an 80% success rate, which is the highest of all the available surgeries, and is the least likely to cause lasting facial numbness afterward.

Trigeminal nerve branches

In Microvascular Decompression surgery, the Neurosurgeon creates an opening in the skull behind the ear on the affected side and using delicate tools, places a sponge between the nerve and the blood vessel causing compression, which in turn reduces the irritation caused by the nerve. It also prevents almost any facial numbness from happening which is a common side effect in most other surgical procedures, such as Sensory Rhizotomy, Gamma Knife Radiosurgery or Peripheral Neurectomy.  A small titanium plate is used to replace the bone removed and is put into place with tiny screws. 

A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.

MVD sponge placement

A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.

After the surgery, you spend a night in the ICU and then 1-2 days in hospital before being released to recover. 

It all sounds pretty scary, but it’s my best hope for relief from this insidious pain. I’m now averaging a flare up every week and they generally last for 12 hours at a time. It’s sheer agony when they happen – there’s a reason this condition is called the suicide disease. 

So, how do you bounce back from something like this? Where does the courage come from? Part of it for me is my faith in God. Part of it is my natural positive outlook on life. My Dear Readers know that my motto is “there is always hope”. I end each post with those words, they are tattooed on my left arm, they are my favourite words from the movie The Lord of The Rings, when Aragorn is talking to the young boy just before the Battle at Helms Deep. They remind me that no matter what we are facing in life, things could be worse. I know that might sound silly, but truly, they could be. I could be facing a terminal illness, not just an issue that causes tremendous pain. There could be NO solution for me at all.

The thing is, I believe we have a choice in how we react to news, good and bad. Being joyful is easy in good times, but I choose to be joyful in the bad times too. I choose to stay positive in the dark days. I choose to believe that things can get better. My attitude is one of gratitude despite the circumstances. And I encourage others to try to do the same thing. You have a choice. Be resilient. Fight with all you have inside you. Choose to find the joy in your circumstances, as small as it might be. Remember…

There is always hope.

 

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Stream Of Consciousness Sat. Sept. 29th

Who Was I Kidding?
I’m mad. I’m mad at my body, I’m mad at the way I’ve been let down, and I’m mad that I’ve lost my freedom, once again. What am I talking about?
Singing
For those who don’t know, I used to sing in a women’s barbershop chorus as well as in a quartet. I love to sing but I haven’t done it since 2007. Recently, I heard about an opportunity to join a group called the South Island Care Choir, made up of Doctors, Nurses, other Health Care practitioners and Patient Partners from Patient Voices Network, the group I volunteer with. I immediately jumped in and said YES!! I would love to join this group, not even thinking how unrealistic this might be for me healthwise.
Well, I’ve just made the unfortunate realization that it’s not going to be feasible for me to do this, and I am totally pissed. The main reason why I won’t be able to sing? My stupid left foot and it’s stupid Haglund’s Deformity that we’ve just confirmed. I literally can’t walk on this foot for more than 10 minutes without being in agony, let alone stand on it for 90 minutes to sing. I would have to walk to the bus stop there and back to where we would rehearse, and I am NOT paying the $50 it would cost for a taxi each way. Even using my walker or my crutches wouldn’t make a big difference…I would still have to be on my feet to sing properly and I just can’t manage it right not. Plus, the only way that this Haglund’s Deformity can be managed is with surgery. I’ve already tried the other measures to treat it…ice, elevation, anti-inflammatories, rest…everything.
I am so mad at myself for getting my hopes up and then realizing that this just isn’t going to work. I wanted so badly to be able to sing again because I miss it so much…the camaraderie of being in a group environment, creating harmony together, performing for people…just everything.  Singing in the past brought me so much joy…I really wanted to re-create those feelings again. Unfortunately, if I’m totally honest with myself, I would end up being in too much pain and too tired to really enjoy myself and now is just not a good time to do this.
I’m going to send a note to the director and ask if it’s okay to put this off until the Spring and then perhaps re-join at that time. Hopefully my foot will be dealt with by then and I’ll be recovered from surgery and no longer in pain. My regular pain I can manage, but if I can’t stand on my own two feet with just my cane, then there’s no sense in pretending. I don’t want special accommodations, I just want to be like everyone else on the risers; a regular singer.
From my Sweet Adeline Barbershop days – the link below is my quartet Quintessence singing Marshmallow World. It’s from the Christmas CD “Jingle Belles” that my chorus Rhythm Of The Rockies put out, I believe in 2004. This was when I was living in Calgary where I was a founding member of the chorus.
In 2005, Quintessence competed in Sweet Adelines Region 26 (the All Canadian Region!) composed of choruses and quartets in BC, Alberta and Saskatchewan. Every year there would be Regional Competitions held to pick winners to go to International Competitions. Out of 16 Quartets, we placed 10th overall in the competition and we won Novice Quartet of the Year which was a real honour – the best of all the new quartets!! One of my favourite memories was when we entered the theatre after coming off stage, people were applauding as they did for all the competitors, and the reigning Quartet Champions stood and applauded for us – again, as they did for each quartet, but it made me feel so special, like our quartet was so amazing. I’ve never forgotten that feeling, something likely so insignificant to them, but has had a lasting impact on me all these years later.
And that was another reason I wanted to sing. I wanted to be able to influence other singers who maybe were in a choir for the first time. I wanted to be able to encourage and inspire someone who was trying something new for the very first time. But no…my stoopid body refuses to cooperate and so once again, that freedom to do what I want when I want is gone.
Anyway, I hope you enjoy our version of Marshmallow World. I realize it’s not Christmas yet, but the weather is changing and some people Edmonton have already had snow so it’s not totally inappropriate either.
Marshmallow World
And as for me, like I said, I guess I’ll revisit singing in the Spring and see how things are at that point. Hopefully I’ll be in a better place physically to be able to sing without pain and I’ll enjoy the experience even more.
there is always hope

Medication Frustration

It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.

Screen Shot 2018-10-29 at 6.16.50 PM
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).

Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.

The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.

Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.

Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!

Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.

It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!

there is always hope!