Retrospective: Month Three

I thought this would be a good time to reflect on my recovery and to remind myself how far I have come in a relatively short period of time. These are posts from my CaringBridge site. I set it up prior to my surgery to help me communicate with my friends/family. Hope this is of some help to those of you who are just beginning this journey.

February 15

Week nine post-op report:
It is hard to believe my surgery on December 13 was only nine weeks ago. It seems like it was a lifetime ago. For those of you who don’t know, the surgery was to remove a tumor that was growing on my spinal cord. It was causing neurological damage that would have eventually left me paralyzed. The goal of the surgery was to remove the tumor while causing as little damage to the spinal cord as possible. The hope was to be no worse off after the surgery than I was before the surgery.

In the days immediately following surgery, just moving in bed was a challenge. With the help of my physical therapists I managed to get out of bed and using a walker, I made a victory lap around the nurses’ station. But it was clear that I still had neurological issues in my left leg/foot. For eight days I stayed in the hospital, getting stronger and learning to adjust to the restrictions the doctors put on my movement… no bending, lifting or twisting.

Since then I have contended with a cerebral spinal fluid leak, neurological pain, banding, muscle spasms, restrictions on my movement, and a host of other issues. Some of the pain and discomfort I am dealing with has improved with physical therapy, but I will probably continue to have muscular/neurological issues for quite some time. Fortunately, despite the discomfort, it seems I will eventually be able to regain most of my physical abilities. I am walking well (though I still lack confidence when walking due to persistent balance issues), and I am hopeful that the bending, lifting, twisting restrictions will be removed at the end of March.

I am still spending about 3-4 hours daily doing my exercises, stretches, and massages as part of my physical therapy, and I am going to start driving short distances. I still have a lot of pain/discomfort when sitting, so sitting in a car is like torture, but I have to do it to get back to my normal life/routine. I will also start transitioning back to work. I am going to work four hours a day from February 19-March 1. That will allow me to continue with my intense physical therapy schedule.

Wish me luck as I enter this new phase of my recovery!

 

February 18

This is what recovery looks like. Still have a long road ahead of me, but I am making progress. Top left chart is my daily runs before my surgery. Then there are three in the bottom row from the weeks immediately following surgery showing my daily walks. Finally you have my daily walks this past week.

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March 1

Week eleven post-op report:
Tomorrow will be my first full day back at work. This recovery is the most difficult obstacle I have faced in my life. I am trying to stay positive and draw inspiration from any possible source. Here is my quote for tomorrow – “Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill

March 10

Week twelve post-op report:
This week’s milestone was my first day back in the classroom since the surgery. Between the killer commute and the unrelenting pain/discomfort, this has not been easy. However, I have been surrounded by amazing people who are cheering me on and encouraging me when I feel like I can’t keep going. A special shout out to all the people at work who have made me feel the love the past two weeks with your flowers, chocolates, donuts, messages, smiles, hugs, and positive energy! You have no idea how much your encouragement means to me! Thank you!

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Retrospective: Month Two

I thought this would be a good time to reflect on my recovery and to remind myself how far I have come in a relatively short period of time. These are posts from my CaringBridge site. I set it up prior to my surgery to help me communicate with my friends/family. Hope this is of some help to those of you who are just beginning this journey.

January 21

Yesterday marked the beginning of week six post-op. Originally my doctor told me I could go back to work six to eight weeks after surgery, but then I had the spinal fluid leak… and plans have changed.

Yesterday I started out-patient physical therapy. Hoping that will help push the recovery along. Although I still have to spend much of my day resting on the sofa, I make a point of doing my exercises. I walk 1-1.5 miles everyday. I still walk slowly and have balance issues, but I am gradually moving from the walker to a cane. That is a big accomplishment after having surgery to remove a tumor from the spinal cord because essentially, the surgery leaves you with some damage to the spinal cord. The surgeon had to sacrifice one of my nerve roots during the surgery, so I also have some issues related to that.

Still, over all, I seem to be making progress each day. The incision is looking better, and all of the stitches have been removed or dissolved. I have good days and bad days, but the good days are frequent enough to keep me from losing hope.

I have also had visits from several of my friends, and that has been wonderful! I hope to be back at work by mid-February. Miss everyone!

February 1

Week seven post-op update: Taking baby steps back to normal. After weeks of walking around most days either barefooted or in tennis shoes, today I put on the boots (well, in full disclosure… Jose helped), and I went for my first post-op haircut. I couldn’t get a shampoo because reclining is still not comfortable, but baby steps, right?

Physical therapy is going well. I did six minutes on a stationary bike (very slow and awkward) and I have started some gentle stretching. The gentle massage around the incision is helping to loosen things up, decrease numbness, and retrain my brain to interpret nerve messages correctly. I also got to lay on my stomach for the first time since surgery – that is huge because I am normally a stomach sleeper. Still can only lay like that on a limited basis, but it is progress. Still walking about 1-1.5 miles daily. Working on speed, stability, and endurance. I also need to get my left leg to continue doing what it should on automatic pilot if I am engaged in another activity while walking (I.e. talking to my exercise buddy).

Now I need to work on a plan to get myself back to work before I use up all of my FML. Part of that plan is getting cleared to drive and being able to sit for more than a few minutes at a time. Gotta have goals.

I continue to be amazed by the outpouring of love and support from family and friends near and far! You are amazing!

February 8

Week eight post-op report:
Here we are at week eight since the surgery, and I continue to make progress towards a full recovery.

I am able to walk with more speed and fewer visible deficits (I still have balance issues and need to concentrate, but my husband tells me most people wouldn’t be able to tell I was using a walker a few weeks ago). In physical therapy I have progressed from 5 minutes on the stationary bike to 11 – with plans to keep adding one minute each time I have physical therapy. That is part of the plan to get me ready to drive again. We have also added some work with weights (one pound, but you have to start somewhere) to help build up my strength after spending so much time resting while the CSF leak healed.

I still cannot bend, lift or twist, and I am still having pain/discomfort from the surgery, but am no longer on any pain meds other than gabapentin for nerve pain, so that is a good thing! Don’t get me wrong, that doesn’t mean I am no longer in pain, just that I am dealing with it. Thanks to gentle massage, I am gradually getting back some of the feeling that I had lost, and the hypersensitivity is decreasing. The muscle spasms are tiresome, and I hope those start to improve soon. I am taking muscle relaxers for them in addition to incorporating some limited stretching into my routine. I am also ready for the nerve pain to go (especially the pain at the site of the severed nerve root), but that might be here to stay.

My immediate goals include sitting, lying on my back, and lying on my stomach for increasing amounts of time. These are all very uncomfortable for me right now, but I am hoping that by the end of the month, I will see huge improvements as it is time to start transitioning back to the world of work… where I won’t be able to spend several hours a day “working out”. Wish me luck as the next few weeks will be critical.

Sadly…

Headache

Headache (Photo credit: Lel4nd)

I had been lucky for a while. With physical therapy I’d seen my pain decrease.  In November I recorded nine noteworthy attacks. In December it was down to five. In January I topped out at three, and I was over the moon! I was beginning to get my life back. Even the slight increase to five in February didn’t alarm me. I was seeing patterns, and I was beginning to plan how I could make my life work around my pain. However, in the United States medical care doesn’t come cheaply. You need time and money to pursue the kind of cure I was after, so in March I didn’t have physical therapy.  I continued my exercises at home (as well as I could), my stretching, my Tai Chi. I used a tennis ball behind my back while driving to give myself automessage.  I drank lots of water, and I was conscious of my posture, but it didn’t matter. In March I recorded ten days of noteworthy pain.  And now, the first day of April, I sit here, fighting the fog that comes with the pain, trying to think, trying to write, trying to voice my frustration with the system.

You see, I work! I work a fulltime job specifically to make sure I have health insurance to help with medical expenses; nonetheless, even with the health insurance, there are costs. Oh, but the costs are worth it, right? Well, let’s think this through. I work to get health insurance, but my employer doesn’t cover the full cost of the insurance. I still have a portion of the premium deducted from each paycheck.  Then, when I do get a treatment, I have to pay deductibles, copays, and other expenses. What does that mean? Well, it means that I am spending more than a third of what I earn just on physical therapy alone! Which makes me start thinking, would I need physical therapy as much if I didn’t work? Or if I worked part-time instead of full-time? Maybe not.  Does that mean  I should give up my job and try to rearrange my life to minimize my pain in ways that don’t involve expensive medications and treatments? That would mean basically organizing my whole life around my condition. It just doesn’t seem right. I’m working so hard, and I still cannot really afford the care that I need to make me the most productive person I could be. It is so frustrating.

Physical Therapy Frustration

Today I am going to take a break from my prep for Christmas to vent a little bit about some thing that has been bothering me.  I started going to physical therapy a few weeks ago as the latest step in my treatment plan.  I asked around, and actually found a very capable/knowledgable physical therapist.  When I went to my first session, I left exhilerated.  I thought, “Wow! This may actually be what I have been waiting for all these years! A normal life may be in reach!”

When I arrived for my third appointment, my therapist told me I was making fantastic progress! I could definitely feel a difference, and it was beginning to show in my moods and my energy levels.  Then, on the forth day, I had to see another therapist. I tried to remain open minded.  I wanted to give her a fair chance, but I quickly realized she didn’t really know what to do with me.  She spent about 10 minutes of my 30 minute session out of the room, consulting with my original therapist. I was annoyed to be paying for wasted time, but I talked myself down saying she just needed to familiarize herself with my case, but my next session was with her again.  It wasn’t any better.

By this point I was growing increasingly frustrated.  I could see that my sessions with the original therapist were on a completely different level, and this was confirmed on my next visit when I was lucky enough to work with her again.

Well, today it got even worse.  I arrived, and I saw a completely new therapist! He wasn’t familiar with my case or my treatment plan. He didn’t really seem to know what to do with me.  I felt like I was just throwing my money away.

So, I am very unhappy.  I can see that therapy with a knowledgable therapist can work, but I don’t think I will make the same progress if they keep passing me around.  When I am with the other therapists I feel like I am treading water.  We are doing things to help me not slip backwards, but I’m not moving forward.  When I’m with my original therapist I feel like I am moving towards normality.  If I were not paying for the sessions I wouldn’t mind treading water.  I am a patient person.  I’ve had the headaches for thirty years. I can deal with a slow improvement. BUT when I am paying for the treatments, I want to get what I am paying for!

Any suggestions?