Chloe and the Dentist

A few months back we noticed a brown spot on my granddaughter Chloe's tooth. After searching for the right dentist, my daughter made an appointment for her. Unfortunately for my daughter, Chloe's school scheduled Chloe's speech evaluation result consultation an hour before the dentist visit. Not knowing how long the speech consult would take, I took Chloe to the dentist. Her mother came afterwards, just in time for the end of the dentist visit.

It turned out that Chloe did not have one cavity, she had four. And they were in each of her molars: top right, top left, bottom right and bottom left. This meant 4 visits, one for each quadrant. I think her mother was going to cry. On a good note, the hygienist was so good that she cleaned Chloe's teeth without Chloe even realizing it. She was amazing. Hopefully the dentist would be just as good.

Since Chloe had to have 4 appointments and her mother was adamant that she missed no school, I made the appointments for right after school. My daughter doesn't get off work until 4 but I just wanted my granddaughter to get them over with so I volunteered to take her. Besides, I think her mother would have freaked her out with all that crying.

Chloe was a trooper. She got through the first two appointments with ease. She had fillings in her top molars so now it was on to the bottoms. She was getting pretty used to these visits and she didn't seem to mind even though she did get a little uncomfortable towards the end of the appointments.

The dentist and his assistant was so patient with her. They let her watch You Tube videos on my phone when they were waiting for Novocaine to kick in and it didn't matter that she wanted to wear her hat and gloves or hang on tight to her My Little Pony toys while they drilled away. They were so good.

However, there was a reason they saved the bottom fillings for last. They were not as easy. The shots of Novocaine were tougher for her to take and the drilling was more uncomfortable. At the end of the third visit she asked me not to take her there any more. I told her I was sorry but there's one more visit.

I mentioned to the dentist that I did not understand how this could happen. My family has very strong teeth with a history of very few cavities. And my daughter makes sure she brushes her teeth lots. I blamed her father's side of the family (ha-ha!). The dentist said the reason the enamel on her teeth was so soft was that Chloe has eczema. I even affects the teeth. I had no idea. I still blame her dad's bad genes. I also asked why we can't just wait till they fall out but the baby molars are in there for a few more years so there's no way they can be just left alone. I tried to spare her more pain but this was for the best.

I hope we can get through that last visit without a lot of struggle. I did promise her a trip to "the red circle store". That's what she calls Target, her favorite place to get My Little Ponies. :)

My Pity Party

I've never considered myself lucky. When I say that I'm talking about the big things. Like my father dying at 53 and my brother dying at 26 and my grandson' s death at 2 months and 11 days. Those are the big things. I get that there are others that have suffered through more tragedy than I have seen but when I throw in my inability to find a job for the last year and a half which definitely leaves us in a perpetual state of financial insecurity, I really feel unlucky.

It doesn't help that I've been diagnosed with congenital degenerative disc disease, spinal stenosis and osteoarthritis. Even if I had a job, I don't think I could handle it. I can't sit for more than an hour without my tailbone going numb. Using my arms to do computer work is very limiting. I can usually get in an hour of computer time before my chest, arms and shoulders hurt. I can't even drive for more than 20 minutes without my arms aching. The pain meds help my situation but it also takes away my ability to concentrate and my attention to detail. So the idea of full-time work seems utterly impossible so maybe in that regard, it's for the best that I can't find a job.

But then there's the money thing. I have medical bills. So many medical bills with no income. I started to sell things that I don't use anymore on eBay. That sure helps buy a few groceries but does nothing to put a dent in the medical bills. There is also the student loans I can't repay. It's to the point that I've stopped losing sleep over any of them; it's just not worth it. I totally understand what hopelessness feels like.

To help ease my disease, I've had lumbar fusion and cervical fusion. These surgeries have certainly helped to alleviate my symptoms but they did not fix everything. I used to have no feeling in my feet and now that I've had lumbar fusion, my feet go numb/throb if I over-exert myself. I can also feel my arms after the cervical fusion but I still have a clutching pain around my rib cage.  I've spent a year in physical therapy only to end up with so many restrictions that I wonder if any of it was worth it. I can't run anymore, getting on a motorcycle is definitely out of the question, even picking up my grandchildren is absolutely out of the question. I can't bend, lift anything more than 10 pounds, or turn my head as far as I should. Every day is hard. My brain wants to be productive but my body makes that limited.

I am terrified to drive. In fact, I've bumped a bumper and a tree from not navigating the gas/brake pedals properly. Since I cannot turn my head, I can't see what's in the lanes next to me. I have somewhat adjusted to using mirrors more but they are not totally reliable.

My pain level registers at a consistent 7 but I try to keep from taking many pain meds. They are taxing. I would rather spend an hour doing something followed by an hour lying down which gets the gravity off my body. It's a more natural way of dealing with pain although it is tough to get anything accomplished.

I do volunteer web design work which is how I know I can't work for more than an hour. I have tried but just can't do it. I can't even keep up this blog like I used to. Other things I miss are gardening, biking, cooking, painting, sewing, writing, walking, reading, travel and golf.

I need a miracle. Or maybe just a little luck once in a while.

Rotator Cuff Surgery

Jeff had rotator cuff surgery at the beginning of December and our friend, Dick had the same surgery at the end of the month. We couldn't resist taking this photo of the both of them right after church today.

My Rebuilt Cervical Spine

Today was my 3-month follow-up appointment for my neck surgery. Even though my surgery was really 2 and a half months ago, I figured squeezing it in while my deductible was met seemed smart.

Everything looks good as far as healing is concerned. I wish I could say that I thought it was working but it's a bit too early to tell. Physical therapy continues and I find moving my head awfully painful and the crackling of the scar tissue sure sounds gross.

I can only hope for better things in the new year!

A Visit from my Granddaughters

I love spending time with my granddaughters. I am so very happy when they come to visit. And during this post-surgical time, I really need their uplifting spirits around me. They try to be so careful around my wires from my bone stimulator. I hope they aren't worried about me, I just want them to spend time with me without any worry.

Carpal Tunnel Surgery

During my cervical spine surgery, I had my surgeon do carpal tunnel surgery on my left hand. After all, I was already under general anesthesia so he might as well take care of that as well. Unfortunately, it did not heal well. I think I spent so much time concerned about my neck that I didn't pay close attention to my hand. So now I have extra physical therapy to look forward to. The scar tissue in my hand is so bad, I can't close my hand. I am so disappointed.

Cervical Spine Fusion Surgery

I just had my second surgery of the year. This time it was cervical (neck) fusion. The surgery was not an easy one. The surgeon went in through the front of my neck to fuse the back of my spine. A side effect of the surgery is a sore throat. I was prepared for that but what I wasn't prepared for was the inability to swallow pretty much anything. Even medication. And post-surgery a lot of pain medication is needed. Without the ability to swallow it I was in some trouble.

After a little while, I did find a solution: take the medication with as hot of water as I can possibly tolerate. That way the pills started to melt before they could get stuck in my throat. Not a great solution but a do-able one.

A few weeks in a neck brace was also pretty awful. It was uncomfortable but necessary. It was such a contradiction. I felt comfortable without it but I also felt unsafe. I was afraid I would definitely hurt my surgical site without it. So I wore it. Like it or not.

I really have high hopes for some pain relief after this one. Only time will tell.

Post Surgery Update

Now that I am 6 weeks into physical therapy, I feel like I've come so very far but still have far to go. I can pretty much do anything but run.  I can walk, bend (properly), squat, and move much more normally. The physical therapists are teaching me how to do all these thing properly.  It's a lesson for life - to keep me in top shape throughout old age. Most patients would be ending their physical therapy now, however they suggest another 4 weeks for me.  So I asked them if I failed.  The answer was no, I just have loftier goals. So most people come in wanting to do the basic things but since I want to run it will take me longer to get there.  I am struggling with the idea that in 4 weeks I will reach that goal.  But when I look back, I never thought I would feel this good at this point in the healing process. So I'm hanging on to hope.

Post Surgery Update

After being home for 6 weeks after surgery, I am ready to get out of the house.  It's been hard lying around all the time and even though I have no strength to do anything else, I am looking forward to my post-op doctor visit. In the past 6 weeks I have totally followed doctor's orders. I wear the bone stimulator 12 hours a day and I've been off all the pain medication since February 15th. The medication was making me sick to my stomach and I can hardly eat.  Everything makes me gag. I keep doing my walking laps as required then drink lots of water and even that is hard to get down.

My Hardware

I am staying hopeful that these days go by quickly because this recovery is hard. At my doctor visit today, we discuss my progress and how well I am doing. Each visit will include an x-ray of my spine. So I can see all that hardware. Wow!

I now get to start physical therapy and get moving. I am really looking forward to getting through this and getting better.

Post Surgery Update

Today is the day I get to take the steri-strips off of my incision.  Actually, Jeff gets to do that since I cannot reach them.  So he took a before and after photo of my progress. I really have a hard time looking at these. They make me woozy.  I would make a terrible nurse.

Here's to Healing!

Get well flowers are so uplifting. On these dreary cold winter days, they sure perk me up.

Plus my daughter made me a little pocket to hang on the walker and my granddaughters needed to make sure I had company so I am carting around chickens.

To top things off my daughter-in-law sent me a gift card for Kindle books. I love it, however my attention span is around 20 minutes per day.  I wish I could read longer but I an so so tired.

 Here's to healing!

Post Surgery Hospital Stay

Saturday in the hospital was easy. The staff made me get up and walk. It was easier than I thought.  The epidural line was removed from my abdomen and I was now on Oxycontin and Oxycodone. No more pain killers directly to the incision. I still didn't feel anything, so it was all good. I was supposed to eat but I just wasn't interested.  I also sat in a chair. I still mostly want to sleep which is what I did when I wasn't doing breathing treatments.

Sunday was the same.  Still not interested in food but I had to eat before they would let me go home.  I took walks with the physical therapist and sat up for a while.  My mom came to visit and while she was here the anesthesiologist came and took the epidural line out of my back.  Still no pain, so I was doing OK. Too bad they had to pull that out while mom was here, I'm not sure I could sit through seeing that. The only problem was I started to itch everywhere. The nurse brought some Benadryl, she said it was a side effect from the medication.  That was the worst symptom I had during my entire stay.

Monday I got to go home. But first I had to learn how to get in and out of bed.  So the physical therapist and I worked on that. It was not easy. But I got it. Then after going over discharge instructions and getting medications together, we were ready to go. There is nothing better than home.

Post Surgery - Remembering Friday

I have been home from the hospital for three days now.  I will try and re-cap what I remember from my 5-day stay.  I thought I could write this all in one day but I am exhausted after 20 minutes of typing. So it might take me a while to write it all down.
Friday: I am scheduled for surgery at 9:30 but 9:30 goes by then 10, then 10:30 and I start to get anxious. The physician's assistant finally comes in to apologize because their first case of the day was tougher than they anticipated. He said there was a lot of scar tissue to get through and they wanted to do it right. I asked why he thinks he should apologize for doing a good job. Besides, I'm not going anywhere.

I finally get rolled into surgery a little after noon.  I remember seeing the operating room and the anesthesiologist starting to place an oxygen mask on me. The last thing I remember is seeing it about 6 inches from my face.

I woke up in the recovery room to two more IVs in my hand. One was a central line, and as soon as I was conscious, the nurse started to remove it. The thing about those is they have to apply pressure for 15 minutes straight so she was very close to me and I felt very safe. I felt nothing in my back which was good. The epidurals were working.  I also had no more pain in my hips and I wondered if that was just from the epidural as well.

I got back to my room after 8pm.  Jeff was waiting patiently. He stayed with me until late into the night then went home to bed.  I don't remember the rest of the night.  Sleep is good and it comes easily.

Post Surgery - Remembering Thursday

I have been home from the hospital for two days now.  I will try and re-cap what I remember from my 5-day stay.
Thursday: The hospital called. A surgery has been cancelled and mine can be moved up.  I am glad because waiting until the afternoon is absolute torture.  Jeff is on his way home and we left the house at 11.

When I get to the hospital, the receptionist greets me with a gift that she made.  It is a cute little doll made from a towel and I find it very comforting.  My surgeon walks by as we wait to head upstairs to the surgical unit. He says hi and is calm. I wish I was calm but I am screaming on the inside. As soon as all the paperwork is done we head upstairs and when I get to the unit I am whisked away quickly.

I am barely in the surgical gown, which has to weigh 10 pounds (it feels like there is lead in it), when I am poked by a nurse who is trying unsuccessfully to insert an IV. At the same time, there is another person putting compression hose on my legs and another is trying to attach an oxygen sensor to my finger and yet another is inventorying my things. I feel like I am in an episode of ER, they are all working so quickly. My surgeon's staff stops by to say hi. That was nice..more really calm people.

My husband is finally allowed in to say good luck and I am moved to the surgical suite.  I made sure to look around. I remember doing that but I do not remember what I saw. There was no counting back from 100, just a hello from the anesthesiologist and I was out. When I woke up a few hours later, I remember coming out of a groggy sleep and announcing very loudly to the nurse, I CAN FEEL MY TOES! It has been so long since that occurred.  She smiled, even chuckled a little and looked over at someone that I could not see. I think they were all happy that I was happy.

As I get back to my room, Jeff is there waiting and looking relieved.  I tell him I am in no pain and feeling pretty good, all things considered.  Even though my surgery was only two hours, by the time I got back to my room is was close to 5.  He looked tired.  I convinced him to head over to the Legion Riders social that was being held only a few blocks away at 6.  After all, he needed dinner and a beer would probably help relieve some of the stress of the day.  And after he left, I felt a sense of relief knowing that he wasn't just sitting here in the hospital watching me sleeping between the doctors and nurses poking around.  It was a very restful and pain-free night.

Pre Surgery Jitters

When thinking about my spine issues in general I realized that I've never really taken them as seriously as I probably should have. Part of that comes from the change in the diagnosis; the original diagnosis seemed a little easier to live with. When I went from a few irritating bulging discs that can be dealt with through physical therapy, epidural injections and surgery as a last result to a diagnosis of Degenerative Disc Disease where the only way to treat is surgery, I started to take things a little more seriously.  As my vertebrae wear away, I know the risk of damage to the good ones if I don't get this fixed, but getting it fixed is terribly scary.

Logic tells me doing it now makes the most sense. I am not working so there's no employer to inconvenience. It is winter so I won't be missing out on good weather and outdoor activities and I will be ready for a healthy summer.

My pre-op instructions came in the mail today and here is the first sentence of the 6-page document.  Yes, it is 6 pages long!

On January 23, 2014  you are scheduled for an Anterior Lumbar Interbody Fusion L3-4, L4-5, and L5-S1; on January 24, 2014, you are scheduled for a Decompressive Lumbar Laminectomy L2-3, L3-4, L4-5, and L5-S1 with a Posterior Spinal Fusion with Instrumentation L3-4, L4-5, and L5-S1.

Sounds complicated but I have faith in my surgeons and it helps not to think about it if at all possible. As I read through all the pages, I realize that I need to get some things.  I need antibacterial soap and some post-surgical loose clothing.  So I head to Wal-Mart to buy some cheap Danskin yoga wear a size bigger than I normally wear.  That should help. At least it keeps me busy so I don't have to think about it too much.  

More Doctor Visits

In the past week-and-a-half I have been to two physicians, a general surgeon who will help perform my spine surgery and my primary care physician who had to do a pre-op physical in order to clear me for surgery. I am used to my primary care doc so that visit is no big deal but I never met this surgeon before so I am hoping he is somewhat likeable.

The general surgeon is Dr. Mahoney and within the first 5 minutes of my visit, I am very comfortable with him.  I immediately noticed his hands. He has hands that look like a surgeon's or an pianist's. He has long fingers that look strong enough to endure hours of tedious, close work.  It comforts me and I know that sounds crazy.

It's been my experience that doctors are usually lacking in personality from all those years of studying instead of socializing, which is a good thing for us patients but this man definitely has some personality. He notices my boots and asks me if they are Steve Maddens. I say yes. He mentions that his daughter has some just like them and I state that I would prefer Jimmie Choos.  His response was that he can have me back in them by summer.  I like that kind of confidence.

After examination, he talks about the incision he will make in my abdomen, from the belly button all the way down to my hysterectomy scar.  Since I have a tattoo of flowers around my belly button, he says I shouldn't worry about how it will look, he will make it look like another stem from the flowers. Ha ha! I really like how comfortable I am around this guy. He is definitely likeable.

Doctors Should Share

I have been very fortunate to have a primary care physician who listens to me, understands me and treats me me with respect. She knows my philosophy regarding my healthcare and applies it as best she can while still keeping me healthy and safe. We live by the philosophy, don't medicate forever what can be fixed today.

The hard part about my care is that I tend to choose specialists that I like and they are not always in the same network plan as my pcp (primary care physician). My pcp is part of the St. Mary's Medical Group and my orthopedic specialists are in the Wheaton Healthcare System. Now you would think that under the Affordable Care Act where there are rules regarding access to electronic medical records, things would get a little easier. I don't know if it's because we are dealing with the government or if it's just an easy excuse to blame others, however, The St. Mary's Group doesn't like to talk to the Wheaton Group and vice-versa. There always seems to be a lot of eye-rolling going on when I mention one doctor to the other. So to torture us patients they just keep making us fill out the same authorizations to send medical information back and forth over and over again. With electronic medical records in place I don't get why they just can't look in my electronic file and see that I authorized my doctors to share information.  But it's never that easy.

All I know is that I like my physicians, they are very personable, competent, and I trust them. They are worth the little extra effort no matter how stupid their policies are. But I still don't understand if electronic medical records are the new law under the Affordable Health Care Act and take effect for 2014 - then why can't they just share my medical results? I am currently walking around with my MRI images on two discs so I can take them from one doctor to another.  At least they are on disc and not giant images on film. So I guess I should be happy for that.

More Spine Issues

We are back in the doctor's office to discuss surgery. Before I get into that, we discuss the cervical MRI. Again, I can easily see right smack in the middle of the image is a missing disc with surrounding vertebrae that do not line up nicely, they are pushed in towards my nerves. The doctor asks if I want to get some PT for it right away and I say no, one thing at at time. I would rather put this in the back of my mind and just concentrate on the surgery at hand.

So the doctor starts the discussion. It is a lengthy conversation about how the procedure will go.  It is a two-day surgery. On the first day they do an incision in the abdomen to expose the front of the spine and put in the spacers that will become my new discs. It is a 2 and a half hour procedure, barring no complications. On the second day, they enter the spine from the back and remove the damaged bone, replace with cadaver bone and attach the bone to the discs put in place the day before.  After the doctor was satisfied that we understood the entire thing, he left us with his PA who got out a model of the spine and actually demonstrated what the replacement would look like.  I liked the visual demonstration, and at the same time the whole thing made me somewhat queasy.

My husband drove me home and we were both pretty immersed in worry and relief at the same time, knowing that once the surgery was all over I could have a better quality of life, considering I have been in terrible pain and distress for a very long time.

My Back Pain Continues

I had a second MRI on my spine and following my doctor's instructions, I called his office to make a follow up appointment so we could discuss the results.  When I called the office, I had a little disagreement with the scheduler.  She insisted that I make the appointment with the physician's assistant and assured me that he can give me the results with as much confidence as the doctor.  I argued that I wanted to see Dr. Perlewitz but she was not going to budge so I took the appointment with the PA.

Funny thing, that same evening the doctor's office called me back. They got the radiology report back from the MRI and very gently insisted that I come in to see the doctor directly and offered me an appointment much sooner than the one I originally made.  The person who called was soft spoken and was trying to break it to me gently that the results were pretty serious.  I reassured her that I suspected the same and not to worry, I understood and it's OK.

In the doctor's office, I took one look at the image and I could very easily see that two of my discs, L4 and L5 are grey and the rest are white.  The doctor went on to explain that's because the discs are worn down and there is no cushion between the vertebrae. Plus there is a natural curve in the spine and those vertebrae are pushed in where the discs are worn down. On another view, the MRI showed that the vertebrae are wearing away as well. Diagnosis: Congenital Degenerative Disc Disease. So my first question was does that mean my original diagnosis of Osteoarthritis is incorrect?  The answer was no, it was correct, so I have that too.  It also means that there are drastic changes between my first MRI and this new one. My spine is wearing away and without a fusion and laminectomy, I am putting the surrounding vertebrae at risk because of the increased pressure on them. In fact a third vertebrae is also wearing away now as well. There was to be no 3 options, only 1; surgery. Then the doctor says, by the way, we found a cyst on your ovary during the MRI so you might want to contact your primary care physician about that. Geez.

Once that discussion was completed I mentioned to the surgeon that since October, I've been waking up in the middle of the night and my arms are numb, like they've fallen asleep. I made an assumption that it was stress related. I also mentioned that when I turn quickly I have a sharp pain in the center of my back that takes my breath away. I made another assumption that it had something to do with my disc issues. He suggested we x-ray my neck while I am still in his office because there's no way pain that high in my back would be related to L4 and L5 in my lower spine. So we got a quick x-ray and the doctor could instantly see that the vertebrae at C7 was also pushed in.  He ordered an MRI to see if the degeneration was also happening at that level.

Once the surgery stuff sunk in, without hesitation, my husband and I looked at each other and practically in harmony said set it up! The doctor suggested we take some time to think about it because it is very serious surgery.  We convinced him there was nothing to think about, we have to fix this. So he sent us to the office of his surgical scheduler where we had a long talk about the process. We left the office with the surgery date selected and the plan was that I had to make an appointment with my primary care physician for a pre-op physical, make an appointment with Dr. Perlewitz's general surgeon who participates in the surgery for a pre-op visit and then I would come back to Dr. Perlewitz's office where we would discuss the surgery in great detail and go over the neck MRI results.

My Back Pain Continues

In May I decided to schedule another epidural injection in my spine. The last one I had worked for about 18 months and it's been quite a while since it wore off. Walking around with a numb foot gets increasingly difficult. Between that and my osteoarthritis in my spine, I can rarely sleep. The pain in my hips and the numbness in my foot are a combination that have become unbearable.

Unfortunately, like the last time, the first injection did not work. So I went for a second one in July. That one only worked for a few months. The doctors say sometimes it takes 3 in order for it to work but for some reason I can't bring myself to do it again.  It's not a painful procedure, but I don't exactly look forward to it. It has some risk which makes it stressful.  It's not cheap either so I'm not sure I am getting the return on the investment that I had hoped for.

After some serious thought and many sleepless pain filled nights I decided to get a second opinion.  I started to research spinal surgeons. Why not get a consult? It couldn't hurt. I have a hard time doing the research.  I look through the lists of in network surgeons in my health plan and Google them.  Looking at reviews from patients seems so arbitrary.  If they give good reviews, I wonder about their standards for what qualifies as good.

My husband mentioned that a coworker's wife had a major back surgery with a doctor that she gave rave reviews.  So I asked him to find out who it was.  His name is Dr. Perlewitz and his reading his bio was pretty incredible.  He was a Medical College of WI grad with an orthopedic fellowship at Harvard. I think that was good enough for me so I made an appointment.

I made the appointment and my husband and I went together. Dr. Perlewitz did a comprehensive exam of my spine and we had a long discussion of my symptoms.  He was thorough and easy to talk to. He suggested that since my last MRI was from 3 years ago, I get another one.  After that I would make another appointment and we would discuss options based on the results of the MRI.  He stated that normally he would have 2 or 3 suggestions (physical therapy, more injections, surgery)  and we would sit down and choose a plan of action based on how I would like to proceed.  Wish me luck!