Retrospective – Initial Phase of Recovery

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.

Update…

The past few weeks are a bit of a blur, but I will try to get you up to speed on my recovery.

I was in the hospital until December 21. I had some really amazing nurses, and we tried to make the best of a difficult situation. We even managed to make some good memories… like the day when one of the nurses suggested that we take a wheelchair and go on an exploration of the hospital. She told us about a rooftop observation room in the main building. My husband and I set off on what felt like an elicit adventure. It was the first time I had left my floor of the hospital in almost a week! When we reached the observation room, it was like we had been let in on a secret that few people knew about. Maybe it was the drugs… they were pretty strong… but it almost felt magical.

Speaking of the drugs… there was one really strange day when I was shifting in and out of consciousness. I was hallucinating about cats and talking nonsense. Fortunately I don’t think there are any permanent public records of that. 😉

Before discharging me, the PT staff made sure I could negotiate inclines with my walker. They also had me practice going up and down stairs. The OT folks taught me some tricks for bathing and dressing without bending, twisting or lifting (more of a challenge than it seems). I still get lazy most of the time and just ask my husband to tie my shoelaces for me.

You might be wondering why I had a walker… well, my balance has been off, and my left leg is still a bit weak compared to my right leg. Before the surgery I was having to concentrate to lift my left foot, and while it is much better, it still drags at times. Also, right after the surgery, when I walked, I felt like my left foot was walking on marshmallows. It was strange to feel the solid floor under my right foot and a squishy surface under my left foot. Fortunately, this has gotten better. Now both feet can recognize hard/soft surfaces.

I can walk without the walker, but it is ridiculously slow and concentrated. When I go for longer walks, I still need the walker. It allows me to walk faster, and it encourages me to stand up straighter. I am sure over the next few weeks, I will improve to the point that I no longer need the walker, but it will take a bit more time. That said, I still think that overall, the surgery was a success.

When I was discharged, we stayed in the Rotary House – a Marriot run hotel that is on site at MD Anderson. I needed to stay in Houston until being cleared by the reconstructive surgeon. I had an appointment scheduled for December 27. I had two wound drains that they were not able to remove when I left the hospital, so this appointment was to assess the drains and hopefully remove them. Unfortunately, one of the drains was still collecting too much fluid, so the reconstructive surgeon didn’t want to remove it. He asked us to stay in Houston while he decided on a course of action. Jose and I stayed on at the Rotary House to give us quick access to my doctor if things should change.

That was fortunate because things did change. We contacted the doctor, and he worked us in this morning. He decided to go ahead and risk taking the drains out… with the hope that everything will be okay. Evidently, he and the neurosurgeon think I might have a small spinal fluid leak, and they think removing the drains may help it resolve. Since we will not know if it has worked for about a week, he has released me to go home. We plan to fly out tomorrow. We will need to be in constant contact with him. We will send him daily photos so he can assess my condition. Fingers are crossed for a positive outcome… if not, I may be on my way back next week. I hope not…  positive thoughts are in full force.

Coming out of the fog…

It is nice to be back home! My husband is getting back to his routine, and I am getting lots of rest. Still have lots of recovering to do. BLT ( bending, lifting, twisting) restrictions are still in full force, and just a little bit of activity leaves me exhausted. Three times a day I do my PT exercises, and I am trying to get in a quarter mile of walking each day ( due to the cold, that means I am pacing in the living room). I have to change positions often because staying in any one position for more than an hour causes additional pain.

During the surgery they really did a job on my arm. Still have pain, so I am trying alternating heat and cold. It seems to be helping. Hopefully as I approach four weeks out from surgery, this pain will be resolved. Also have pain at one of the drain sites. The doctor told me that is normal. And now I also have an aching pain where they removed the tumor and inserted titanium rods. Hoping this passes, as i cannot lay on my left side due to the pain….

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Retrospective – The Surgery

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.

The Count Down…

Finally, after a week of frustrating back and forth with the hospital, I have a firm date for my surgery. Friday will be my last day at work. I will leave work at 4:30 to make my 6:30 flight to Houston. My parents will pick me up in Houston when my plane lands at 8:10. The next day I have to go to the hospital to start the pre-op screening process. There will be x-rays, CT scans, MRIs, blood work, a meeting with a plastic surgeon, a meeting with the anesthesiologist, and a meeting with my neurosurgeon. It is overwhelming! At least I can say they are not leaving anything to chance – and I am grateful for that!

My husband will not be able to be there until the 12th, but he will be there the day of my surgery, and he will fly back home the following morning because he has to play some Christmas gigs.

So I have two more days to get everything ready… I need to get busy!

Pre-op…

Here at MDAnderson sitting on an observation deck, enjoying the view. Had to be here at 7 am, so I am exhausted. We have taken care of most of the pre-op appointments. I had a CT scan on Saturday, and today I had X-rays, blood work, a consult with my anesthesiologist, my reconstructive surgeon, and my neurosurgeon.

After dinner, we will end the day with two hours of MRIs that start at 8. That means we probably won’t be in bed until 11. Hoping to sleep in tomorrow – and tie up some lose ends.

Tomorrow…

Just wanted to thank everyone again for your words of encouragement both here, on FB, and in text messages. Tomorrow I will not be able to add updates, so I have given my mom access to the site. I am hoping she will be able to post a couple of times to let you know how the surgery is progressing. The surgeon told me it will probably take 6 to 8 hours. It is going to be a long day.

I have told some of you this, but want to share with all of you. I am really happy with both my neurosurgeon and my reconstructive surgeon. They are both experts in their fields. They don’t leave anything up to chance. I am in good hands tomorrow.

Keep those positive vibes coming! 🙂

First Surgery Update (by mom)

We checked into hospital at 6:00,  and the surgery started at 8:00/next update should be at 10:00.

2nd Surgery Update (by mom)

From 8:00 until 9:30 team was positioning her for procedure, doing ct scan and putting her to sleep/actual surgery started at around 9:30-next update at 12.

3rd Surgical Update (by mom)

They are doing CT scan to insure they removed all of the tumor/If surgeon is satisfied, he will turn things over to reconstructive surgeon/ if not they will start all over again/ She is tolerating procedures well.

5th Surgical Update (by mom)

She is out of surgery.  Dr. says he is pleased with outcome so far. She is awake and we are waiting to go back and visit(probably in 1 to 2 hrs).

I’m here…

Sorry I have been M.I.A. for a bit. I have been too focused on the surgery and my recovery. Last week, preparations for my absence took up all of time, and to be honest, this week I have not been up to writing. Even today it is a struggle.

So… to get you up to speed:

Friday (December 8th) was my last day of work.

Saturday (December 9th) I had to report the MD Anderson to take care of  pre-op blood work.

Monday (December 11) I had more blood work and consults with my neurosurgeon, my reconstructive surgeon, and an anesthesiologist. It was a very long day. We left the house at about 4:45, and we returned at around 11:30.

Tuesday (December 12) I got a day off to finishing prepping for the surgery.

Wednesday (December 13), I had my surgery. The actual surgery lasted about seven hours. I don’t really remember much about that day. I do remember being happy post-op because I could move my legs and wiggle my toes.

Thursday (December 14) I woke up with a lot of nausea. They attempted occupational therapy in the morning, but I was too sick. I did a little bit of physical therapy in the afternoon. I look pretty rough.

Friday (December 15) They gave me medication to prevent nausea. The occupational therapist didn’t come, so I just worked with the physical therapist. We walked around the nurses station twice – yippee. Of course, I can only do this with the help of a walker.

Saturday and Sunday (December 16 and 17) The PT/OTs were off, so I had to make myself mindful of exercises that I can do to promote healing. I was doing okay, but then they decided to start backing off on the pain meds. That means I am now in more pain than before. Hoping this phase of the recovery goes by fast!

** Still out of it due to the meds, so I apologize in advance if this post doesn’t make sense.

Retrospective – The Biopsy

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.

Hurry up and wait…

While I struggle to decide which surgery I will have first (I need to decide by the end of the week), I have also been trying to schedule my biopsy. I was trying to get in on November 9 and 10 because my husband will be able to go with me on those days, but we are a week out now, and I still do not have a confirmed appointment.

Since I need to submit my leave with enough time for it to snake its way through the bureaucratic hurdles at work, and because it will be harder to get hotel/air reservations the longer I wait, I have contacted them to let them know that November 9 and 10 are no longer an option. I gave them a few new dates. Now I continue waiting to hear back from them.

A little more research…

So, the more research I do, the more I realize that I cannot determine which condition is causing my symptoms because most of my symptoms could be caused by either condition. This makes me feel like I am basically being forced to resort to a roll of the dice to decide which of the two is more urgent.

Case Study of Patient with Symptoms Resembling Mine

Friday I had decided that I was going to go with the GYN surgery first. I called to schedule the procedure, but I got an answering machine. On Monday, they called to tell me they were waiting to hear back from my GYN. In the meantime, my back pain has changed… it is more persistent, and continued reading has provided me with more examples of spinal cord tumors causing the symptoms I am attributing to the uterine tumors.

The Biopsy

Finally made some progress. The biopsy is scheduled for November 21 and 22. I am going to fly over on the morning of the 21st. I have a pre-procedure consultation at 1:30, then I have to go back the next day for the biopsy. They are going to perform a fine needle biopsy, so it will be minimally invasive. Hopefully there will not be any complications (i.e. spinal fluid leaks). They will keep me for three to four hours after the procedure for observation, and they told me I have to wait 24 hours just in case there is a delayed response. Fortunately, thanks to the Thanksgiving holiday, I will only miss one day of classes. On Friday, we will fly home, and that will give me a couple of days to rest before heading back to work on Monday. It will take about a week to get the results. The doctor expects confirmation that the tumor is a schwannoma, but there is a slight chance that it could be a meningioma, a neurofibroma, or an ependymoma.

Retrospective – Initial Consultation

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.

A very long day…

Today I had my initial consult. Had to be there by 9:30 am and I finished my last MRI of the day after 10 pm. It was a very long day. I know some of you are anxious for updates, and I promise I will fill you in tomorrow. For now, I am going to get some sleep because I have another MRI tomorrow.

Going home…

Between medical issues and hurricanes, this has been an extremely stressful weekend. My original flight home was canceled because of the storm, so I am really happy to finally be in the airport on my way home!

I am waiting for my dinner, so this seemed a good time to post an update. Long story short… I was impressed with MD Anderson. It is a monster of a hospital – absolutely enormous! But just about everyone I encountered seemed to be determined to do everything possible to reduce the stress that patients are under. From the valet parking to the 5 star hotel on-site, the goal is to make it a positive experience – if that is possible at a place that normally hosts people going through one of the worst experiences of their lives.

My doctor took over an hour to explain my diagnosis in great detail. He was confident, and that was reassuring. I’d already had three MRIs before arriving in Houston – a lumbar scan w/out contrast back in May and lumbar with and w/out contrast in August. He wanted scans of my entire central nervous system with and w/out contrast.

They asked when I was planning to go home, and when I told them, they made sure they could get me in for the MRIs as soon as possible. I had four of them that evening. I was the last patient leaving the outpatient radiology center – at around 10:30 that evening. The next day, I had to go back for two more. The first four scans didn’t reveal anything new. I still have not gotten the report back on the other two.

Based on the information in my original scans, he diagnosed me with a schwannoma in the lumbar region. He said I needed to have surgery but that it isn’t an emergency because the tumor is growing very slowly. I have some time to think about it, but he recommends that I get it taken care of sooner rather than later. He feels certain he can get rid of the back pain I am experiencing, but he is less certain about the neurological symptoms I have been experiencing recently. That is a bit disheartening because the neurological symptoms bother me more than the back pain.

So… now I have some difficult decisions to make… but not before I get home and get a good night’s sleep in my own bed! I can’t wait to get home!

Waiting for Godot … or some other thing

It has been a week since my whirlwind trip to MD Anderson. I got the results from the first four of my MRIs the very next day, but I am still waiting for the results of the brain scan. The tech assured me that I do in fact have one, a brain that is, but I am still waiting to get confirmation that this tumor in my spine is the only one.

I have sent a message to Dr. Rhines’ staff asking about the results. I was told that he would call me today, but he didn’t, so I guess I will need to find time tomorrow to call them myself. I also had a few questions about the surgery… once I get answers to those questions, I will make my final decision regarding the surgery.

Brief update…

On Friday, a nurse practitioner from Dr. Rhines’ office called to let me know that the MRIs did not reveal any additional concerns. That was really good news. So, basically, what I am facing is a spinal fusion surgery with the addition of the removal of the tumor. The doctor hopes that the tumor can be removed without causing additional damage to the nerves. If that is true, the recovery will basically look like your typical spinal fusion recovery.

He told me to expect 5-7 days in the hospital. PT will begin as soon as possible following surgery. I can expect to have BLT (bending, lifting, twisting) restrictions, and I will not be able to drive for 4 to 6 weeks. Once I am able to drive, I can return to work.

Unfortunately, he cannot assure that the surgery will ease the neurological symptoms that I am currently experiencing. We are primarily trying to keep the tumor from causing additional damage. In the weeks following surgery, instead of feeling better, I will actually feel worse, and it will take time before I am able to return to my current level of activity. That is going to be frustrating.

Still have some additional questions for the doctor. I sent them to his NP, and I hope to get a reply tomorrow. Then I will be able to decide on the next step.

Thank you to all of you for your support and encouragement. Now I need to go finish prepping my classes. Tomorrow is the first day of Fall II, so I need to be ready to hit the ground running. I am also trying to figure out how I will handle the last two weeks of the term if I am out for the surgery.

Decisions…

Lots of decisions to make.

On Thursday, I talked to the Nurse Practitioner assigned to my case. I am trying to decide if I will go ahead with the surgery to remove the spinal cord tumor right now, or if I will hold off so that I can take care of the uterine tumors first. Basically, she told me that since the spinal tumor is growing very slowly, the doctor does not think a year will make much of a difference in the outcome for that surgery as long as the tumor is benign, so I need to listen to my body and make my decision based on which of the two conditions is currently causing me more discomfort/inconvenience/disruption to my daily life. Of course we would monitor the tumor with MRIs every three months.

When I listen to my body, I get the feeling that the two conditions are interacting and that some of my symptoms may be the result of the interaction. I think taking care of the uterine tumors should give me some relief. Once I recover from that surgery, I will have several months to prepare for the second surgery.

Still, it is a hard decision to make. It is made even harder because I am really afraid that I may lose my job (and health insurance) over the course of the next year.  I have fantastic insurance with my job, but if I lose my job, I would also lose my insurance, and as you know, healthcare in the U.S. is very expensive. So… it is a very difficult decision to make. I’ll let you know as soon as I decide on something.

Retrospective – Initial Decisions

Tomorrow I will travel to MD Anderson for my second post-op check up. 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.

In the beginning…

Back in May, I went in for an MRI and to be honest, I wasn’t the least bit worried. Just between you and me, I thought I probably had fibroid tumors again and would need another surgery (had one back in 2006) to remove them. It was going to be inconvenient, but it wasn’t a game changer. So you can imagine my surprise when my GP called and told me that the MRI showed a mass on my spinal cord in addition to the suspected fibroids.

It is never nice to be told that you have a mass anywhere, and it is even more unpleasant when the doctor tells you over the phone. Unfortunately, I was driving when he called, so as I was pulling over to the side of the road I heard him say “probably not cancerous” and “surgery” and “not something to be ignored”.

I scheduled an appointment to meet with him face-to-face to discuss the MRI results. He didn’t say anything different, but reading his body language, I could tell this was something serious. A spinal cord tumor – probably a schwannoma – something rare and dangerous.

I began to research my condition, and I made an appointment to see the neurologist who has been treating me (and my mother and father) for migraines for years. After looking at the MRI results, she agreed that this was not to be taken lightly. I needed to find a good neurosurgeon – possibly far from home.

Traveling for treatment is never easy, so I wanted to at least consult a local neurosurgeon. After talking to a number of people, I scheduled an appointment with one of the more highly regarded surgeons in my hometown. I had to wait a month and a half to get in to see him because he is so popular. When I finally had my appointment, he made it quite clear that the surgery I needed required both special skills and special tools that he did not have. I would need to go to a major medical center to receive treatment.

And so, the journey begins…

Step Two

I have been putting it off, but today I finally purchased my ticket. I will arrive in Houston on October 4, and I will leave on October 8. My appointments are scheduled on October 5 and 6.

I will see Dr. Laurence Rhines. He is the director of the Spine Tumor Program at MD Anderson, and he comes highly recommended by his patients . He has the skills that are needed, but he also has the right tools in the high tech operating room that he helped design.

And, as an added benefit, he also seems to love what he does https://www.youtube.com/watch?v=K6jOJ83jcSk

There is also the benefit that lots of people here have gone to MD Anderson, so the hospitals and doctors here already have working relationships with the doctors at MD Anderson. Will keep you posted.
**Click on the colored words to link to articles that will give you more information.

Explain Pain Author on YouTube

In my last post I wrote about a book that my physical therapist asked me to read. Since then, I have been trying to find out more about the authors and their approach to pain. I found this video to be both informative and entertaining. If you have a few minutes to spare, you might give it a go.

Review – Explain Pain

Right now, I am at a point in my recovery where pain is my primary focus. My motor abilities are improving day by day, but the pain… that nagging, ever present pain… that is my primary concern. I have recently started seeing a physiatrist (if you don’t know what a physiatrist is, don’t feel bad – a month ago, neither did I), and the physiatrist has sent me back to physical therapy, but this time instead of working on balance and movement, we are working on reducing my pain levels. On my second visit, the physical therapist handed a book to me. She told me that she thought it might help me to understand my pain. The name of the book was Explain Pain

explain-pain-cover

The book was written by Drs. David Butler and Lorimer Moseley from the University of South Australia. According to the University’s website, Dr. Moseley is a Pain Scientist with a background in physiotherapy, neuroscience and psychophysiology. Dr. Butler is the Director of the Neuro Orthopaedic Institute.

The book, which sells for a shocking $94.22 on Amazon.com, summarizes research from a number of different fields to provide patients with an understanding of factors that influence their pain levels. They manage to do this with very little jargon, so people with limited understanding of human biology can follow along. Despite the simple explanations, they also succeed in not talking down to the reader.

While I think that this book can provide SCT patients with a better understanding of their pain, and by extension a better perspective from which to manage their pain, I do not think it is worth close to $100! If you can find it used or borrow a copy from a local library, I would definitely say it is worth a read.

They have another book, The Explain Pain Handbook, which is $36.10 on Amazon.com. I think I might give it a try. It is supposed to be a more hands-on guide to help patients take control of their pain using techniques that are based on the research that was presented in Explain Pain.

Have you read either of these books? If so, I would love to hear what you thought about them. Have you read any other good books on pain management?