Getting Ready For Surgery, Part Two

Thanks for sticking with me on this adventure. If you’ve been following along, surgery is set for Feb. 7th for my Total Hip Replacement (THR) of my right hip. This has been needed since 2010, because of arthritis and because of something called Femoral Acetabular Impingement. The link takes you to some great information about why I’m having this surgery done – one of the other things I experience besides pain is the constant noise of my hip snapping, popping, clicking, etc. when I walk or move. You wouldn’t think it would be a big deal, but when you have to listen to it 24/7 for years, trust me…it’s a BIG DEAL!.

So, now that you know WHY I’m having surgery, let me tell you about some of the tests I’ve had done, including the surprise tests that happened, and then I’ll tell you about my surgeon, Dr. R. Stephen Burnett.
For any surgery, you have to undergo regular tests to make sure you’re healthy – blood work for various investigations (checking for infections, etc), an EKG to make sure your heart is functioning properly, a chest x-ray to make sure there is no pneumonia forming – those are the basics. The doctors like to have them within 3 months of the surgery date, so I actually had to have them redone. No big deal. Because I have Type 2 Diabetes, they also check my A1C blood sugar levels – an average of my blood sugar levels over a 3 month period. You generally want those to be under 6 and mine this time around were 6.2 which is pretty good. I use insulin to manage my Diabetes, injecting 14 units of it every night into my stomach or upper thighs on a rotational system. I admit, I often let my Diabetes take a back seat to all my other health issues, and I often forget to check my blood sugar levels on a regular basis, but overall, I’m keeping it under control, so that’s a good thing.

Now, in addition to these regular tests, I had a phone call from Dr. Burnett’s office, telling me they had set up a Bone Scan and CT Scan for me for Monday, Jan. 30th and that Dr. Burnett would want to see me to discuss the results of these tests prior to surgery. The only day he is available to see me? The day before surgery. Instantly, my stomach goes haywire and my brain goes into overload and I’m thinking “he’s going to cancel the surgery!!”.  I mean, I have no real reason to think this…it’s just more tests and there hasn’t been a recent bone scan or CT, but because I’ve waited so long for this, I’m wired to believe it’s not going to happen, because I was led to believe it was going to happen 6 years ago in Calgary, and it didn’t. There’s still a tiny part of me that is waiting for someone to say “oh, sorry…no can do…dreadfully grieved…move along now”.
Anyway, fine…I send a note to his nurse Angela, to see if she can find out why he’s doing these tests and is it going to impact the surgery, and her first response back is that she doesn’t see anything on his notes but she’ll try to snag him to ask him and get back to me in a day or so.

So on Monday, I went for the tests, still with no answers. The bone scan is a two-part test…in part one, you get an injection of a nuclear tracker that spreads throughout your body and several pictures are taken in a special type of scanning machine. After that, you’re allowed to leave for a few hours, to give the tracker time to spread throughout your body. You arrive back at your appointed time and undergo a series of pictures – I think it took about 10 minutes for mine to be done.  The CT scan is straightforward – there was no contrast used in my test, so no IV and no medicine that makes you feel flushed and like you’ve pee’d yourself. If you’ve ever had that medicine before, you know exactly what I’m talking about. All in all, the actual tests took about an hour – it’s the waiting in between for the nuclear tracker to spread that took up the most time. You can leave while you wait, but I live too far away and take the bus into town, so I just hung out at the hospital, ate lunch, drank my requisite 2 bottles of water, and played games on my phone.

On Tuesday, I heard back from Angela, saying she had received the results and passed them on to Dr. Burnett and also confirmed he was still going ahead with my surgery. PRAISE GOD!!! I have never been so relieved in all my life!!!!  I couldn’t wait to text Ray and my kids and my dear friend Charlotte, as well as share the news on Facebook. I simply could not stop grinning!!!!  This is really going to happen!!!

Now, a few words about my surgeon. Dr. R. Stephen Burnett.
burnett
I met him for the first time just a couple of weeks ago (remember, this was before the bone scan and CT scan) and thankfully had been warned that he didn’t have the best bedside manner. He introduced himself to me, I introduced Ray, and then he proceeded to share with me that my lab work looked good, so we were good to do. He told me that he preferred to use the ceramic head rather than the metal one that BC Health covers the cost for, so it’s a charge of $746.00 that I have to pay out of pocket, but it’s superior in function and long-term usage. He asked if I had any questions, which I did, and that was that. Ray and I arrived 30 minutes early for the appointment, waited another 30 minutes to see the man and we were done in 5 minutes.
He’s very much an “all business” surgeon, so it’s a good thing I wasn’t looking for the hand holding type. I did expect him to be more talkative (he wasn’t) and to share more information (he didn’t), especially about the artificial hip itself. He didn’t have my full file with him…he didn’t even realize how quickly my surgery was coming up!!! That being said, I’ve also heard from several sources that he is the absolute best in the business when it comes to hip surgery, especially with more complex cases, so I’m going with what a friend of mine said – I want a surgeon who’s all business and a Family Doctor who is more personable and hands on. He wasn’t rude, or anything like that…just not quite what I was expecting.

So, I will see him this coming Monday, Feb. 6th to discuss the results of the bone scan and CT scan. I did see my family doctor already this week though to get the results and to discuss any last minute issues regarding the surgery and things like my medications and when to take them on the morning of the 7th, etc.  Dr. Leong has been my Family Dr. for 3 years now and truly is the hands-on, caring Family Dr. so I was glad to have the chance to see him once more. He took the time to go over the test results with me, so if Dr. Burnett doesn’t go through them as thoroughly, I at least know what’s happening. And what is happening you might ask? Well, thanks for asking. 😉
What the tests showed is that in addition to the hip impingement we know about and arthritis we know about, I apparently also have severe arthritis in the lower lumbar spine which is the cause of my lower back pain. Now, keep in mind that I have bone spurs up and down my Thoracic spine and now we find out the lumbar spine is a mess – basically what the Doctors want me to be aware of is that after the hip surgery, if I still have pain, not to feel like this was a failure…it just means that we need to follow up on the back problems and start treating them. Oh yes my friends…with me, the fun never stops!!!

So, what’s next? Well, the last thing before surgery is what’s called “The Prep”.  On Monday night, I take a shower, using a special sponge called an Antibacterial Chlorhexidine 4% sponge. Everything gets scrubbed from top to bottom, then a clean towel is used and clean pyjamas are put on and the bed is made with clean sheets. Nothing to eat after midnight, and nothing but clear liquids to drink until 3 hours prior to my arrival time of 6am at the Hospital – and that includes black coffee!!! Yay!!!  In the morning, I repeat the shower, using a different clean towel to dry off – put on loose comfortable clean clothes and shoes that are easy to get on/off and then we head to the Hospital for 6am. I am the first scheduled surgery of the day, which is fantastic – unless there has been an emergency that’s come in the night before, everything should run on time.

Once I’ve been admitted, I’ll be taken to my bed where I’ll be asked to change into a gown. At some point, required paperwork will be filled out, an IV will be started and things will start to move too quickly. Ray and I will be able to be together until it’s time to move to the pre-op area – but he actually has an appointment at the Hospital that morning for some Volunteer work he’s doing so he might need to leave before then anyway. Then, it’s off to the OR!!!  I will be having a Spinal Anesthetic instead of a General, so that will be administered. I’m opting for as little sedative as possible…I’d actually love it if there was a mirror where I could watch them replace my hip, but since I doubt that’s possible (and since they’ll take my glasses away and I’ll be blind as a bat anyway), I’ll just stick to listening. Once the surgery is over, it’s off to recovery and then eventually, my room. I’m hoping I’ll only have to stay for a couple of days and I’m praying that the surgery won’t cause a Fibromyalgia flare-up or a flare-up of my Trigeminal Neuralgia. I won’t get my hopes up…every surgery I’ve ever had has made my Fibro flare, to the point that I felt like a semi truck had run me over and dragged me a hundred feet. I didn’t have the TN back then, thank God!
So my friends…that is what the next steps look like. I will post a very short note on Monday night, and then again as soon as I can when I’m up to it later. In the meantime, remember the motto:

there is always hope

The tattoo on my arm that reminds me there is always hope

ps: Geez, I almost forgot this part….on Thursday, when I was seeing my Family Dr., my cell phone buzzed (it was on mute) and when I checked the messages, there was one from Dr. Burnett’s nurse, asking if we had somehow forgotten to send her a copy of the invoice for when we paid for the ceramic head that he’s using. Yeah…the one that WE FORGOT TO PAY FOR!!!!!  Oh, my word…I couldn’t believe that we had forgotten to pay for the damn thing…I could just see it in my head….me on the operating table and the good doctor holding it in his hand, waving it at me, saying “would you like this???? It’s going to cost you!!!!!!!”

I paid for it on Friday. In person. At the hospital. And I took pictures of the invoice, marked paid and sent them to the nurse. WHEW!!!!!!!!
Remember, there is always hope!

Getting Ready For Surgery

Woo Hoo!!!!  Things have been super busy since my last post. As I said, Feb. 7th is my surgery date, at the Royal Jubilee Hospital in Victoria, BC.  Since I posted that, I have received a letter from Island Health, indicating that I’m the first surgery of the day – I check in at Admitting at 6am!! My Surgeon is Dr. Stephen Burnett (more on him in another post) who is apparently one of the best in the business!
My husband Ray and I have attended the mandatory Education Class for all patients undergoing a Total Hip Replacement (THR) or Total Knee Replacement (TKR). It’s a 2-hour class put on by Rebalance MD, the Physicians Group of Orthopedic Surgeons who perform all of the Ortho surgeries in Victoria. It’s lead by one of the Orthopedic Nurse Navigators – in our case, Britta Henly, and takes you through all of the information you need to know about your surgery, from things like the equipment you’ll need to have at home to help you get around the house to Physio appointments to maintaining the 90º rules so you don’t dislocate your new hip. There are three major rules you have to follow for the first three months after surgery

  • No bending beyond 90º
  • No crossing of your legs
  • No twisting at the midline

They don’t sound all that difficult until you realize how often you cross your legs without even thinking about it, or how many times you twist in your seat to get something. Even getting in and out of the car is a huge new task when you can’t bend beyond the 90º range. I’ve been practicing, and actually had my hubby Ray film me, so I was doing it properly and could look back at it to make sure it was right.
We’ve also gone ahead and purchased all the equipment I’m going to need for the surgery – a two-wheeled walker, raised toilet seat, bathtub transfer seat, long-handled reacher, crutches (I already have a cane), a 2″  foam cushion for in the car and for other seats to make sure the 90º angle is maintained when I am sitting, and a cryotherapy machine for icing constantly to keep the swelling down and to help with pain. My insurance company will cover the cost of the equipment and we thought it made sense to buy, rather than rent since I’ll need to have the other hip replaced, as well as likely needing knee surgery too. We can then keep and store everything, or sell it when it’s no longer required.
I’m also using a CPAP machine now since my Sleep Apnea really does need to be treated and the surgeon wants me using it in the hospital after surgery. It’s better for my recovery, and I can’t argue that, so I’ve bought a female-sized facial mask – with the nasal plugs instead of a full face mask – and it’s MUCH more comfortable to wear!! Unfortunately, I can’t use it when I have a Trigeminal Neuralgia flare-up, which happened a couple of nights ago, but I’ll do the best I can.
So, that’s it for the getting ready, equipment wise. Next post…the Surgeon, the tests, the unexpected tests, and the stress!!!!  I shouldn’t be worrying, but I am. I have to remember…
There is always hope!

I Have A Date For Hip Surgery!!!!

Oh, happy day!!!  After a very long wait, I have a date for hip replacement surgery for my right hip!!! February 7th is the big day, and Dr. Stephen Burnett is going to be my surgeon. All orthopedic surgeons in Victoria practice out of one office called Rebalance. My actual surgery will be at the Royal Jubilee hospital.
Because I have already met with the Triage Surgeon, I’ve already seen all the other people I needed to, because of my complex medical issues, such as the Endocrinologist regarding my Diabetes, and I’ve had my heart tests done as well. I meet with Dr. Burnett on January 16th, so we can go over the particulars of my surgery, any issues of concern (such as my Fibromyalgia, the fact I have D.I.S.H. on the thoracic spine (bone spurs that look more like melted candle wax), and the problem with my right knee (the loose body that causes my knee to collapse if I’m not wearing a brace). He’ll tell me how he’ll approach the incision (front or back), how long he expects the surgery to last, any complications he expects he might run into, etc. and how long he thinks I’ll be in the hospital (generally only 2 days, in my case, possibly 3-4)
I’ll also have a separate meeting with Anesthesiology to discuss pain control. I’m already taking fairly high doses of opioid medication right now, so we’ll discuss a pain management plan. I can take morphine, but I also need to take Benadryl and something for nausea if I do…not really a problem, more an inconvenience.
I have a friend who is also having this surgery done, a month before me. I’m hoping to be able to get the lowdown from her on everything…how it feels, what the pain was like, what the moving and walking and stuff are like, therapy after…basically everything. It’s my hope to blog about all the details, as this was really the main reason I started a blog. I couldn’t find any “real person” accounts of the experience from start to finish. I hope to be able to make this useful for others who will be having surgery, so they have a good idea of what to expect.
So…2017 is going to start out as a very good year for me. In the meantime, I want to wish you a very Merry Christmas!! May you and your loved ones be blessed at this most wonderful time of the year. And as always…never give up.
There is ALWAYS hope!

The Pain In My Face Is A Pain In The @ss

I’d like to introduce you to a condition I have called Trigeminal Neuralgia. Another one of those invisible illnesses, it has been described as “the suicide disease” by both patients and doctors because of how outrageously painful and debilitating it can be. Here’s the official description, from the Mayo Clinic:

Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.

Trigeminal nerve branches

I feel the pain just under my right cheekbone, into the right eye socket and the right sinus cavity. In fact, when I first started experiencing pain, I thought it was a sinus infection – but when none of the other symptoms of an infection came along, I realized it had to be something else.

I’ve been having flare-ups of TN going back almost 14 years now, but they were so few and far between that I didn’t put a name to them at the time. It was easy to brush them off – maybe a sinus thing, maybe a dental thing…as long as they went away fast, I had other health issues to deal with and I didn’t need more. Unfortunately, over the last 6 months or so (give or take a few months), I’ve had flare-ups that have been so much more frequent, I had to finally talk to my doctor about them.

We’ve tried a couple of things – I was taking Carbamazepine, which is the first line drug, but it stopped working fairly quickly, so now I’m on one called Topiramate. We have to be so careful with medications because of the other drugs I take for pain, etc. The Topiramate has been working up until recently, but it seems to me that I am getting flare-ups far more often than in the past. It might be time for a referral to a Neurologist, and possibly a discussion about one of the various surgeries that can be done.

When I get hit with one of these flare-ups, it starts as a mild ache just under my cheekbone. It then starts to spread to the eye socket and sinus cavity, and completely under the entire cheekbone. It often moves into my jaw, and down into my esophagus. The ache is gentle at first, almost teasing, and then becomes absolutely relentless. There’s no one place to pinpoint where the pain is….it’s just “there” and steady without a break. It begins to feel like tiny little hammers are hitting me…not quite enough that the actual hitting is painful, but the endlessness of it is instead. And because there’s no one place that hurts more, there’s no place to put ice or heat, etc. that helps. Neither helps the pain, and neither do much for distraction either. There’s also no rhyme or reason on how long it’s going to last. Sometimes it’s 30 minutes. Sometimes it’s 12 hours. However long it goes on for when it’s finally done, it feels like I’ve been punched in the cheek over and over and over but the bruises are all on the inside. The gentlest touch on my skin is agony, yet all I want to do is press my fist into my face as hard as I can at the same time. Yes…there is a reason it’s called the suicide disease.

I am now looking at having Micro Decompression surgery as my last medication has stopped working and there are no further options left for me. I have tried Botox which wasn’t effective and surgery is my only alternative.

MVD sponge placement

As you can imagine, because this is an invisible illness, you would never know I was experiencing a flare-up unless I told you (or you were allowed to watch me if I let down my guard). So, stop for a minute. Think of the last time you were out for the day…shopping, working, working out, whatever. Think of how many people you might have run into or interacted with on that particular day. Do you think you could have picked out the one who was having a flare-up? I can almost guarantee you that somebody YOU interacted with on the day you chose was fighting some type of invisible illness, be it TN, Fibromyalgia, Arthritis in one of it’s many, many forms, or more.

This is why I chose to start writing this blog – to help educate people on the fact that there are so many of us out there who are living in Chronic Pain from something, yet you might never realize it. We want so badly to be seen as “normal” i.e.: healthy, that we often push ourselves way past our limits, just to fit in. Or, you never see us, because we’re too unhealthy to get out in public much anymore, period.

I hate TN. I hate the invisible illnesses my dear friends suffer with (migraines, cluster headaches, Fibro, and more). I hate that we are living in pain with no end in sight. But I’m glad that more and more people are learning about us, and wanting to know more about these illnesses. I’m always happy to answer questions – just fill in the contact sheet and I’ll get back to you as soon as I can.

Until next time….remember…

There is always hope