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.

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