Hello Everyone! This is Ben. Jesse has been quite busy the last week or so since returning to work (along with taking me around to all my appointments, helping me around the house, etc.), so I offered to write an update on the blog. It is also good typing practice for me.
First, I have to say thank you so very much to everyone that reads the blog (along with many others) for all of your support throughout this entire process. The outpouring of support has truly meant so much to Jesse and me. It has certainly made going through this whole process much easier. From every visit, phone call, text message, Facebook message, to all the wonderful cards with words of encouragement and support, to all the food that so many of you have brought, it has been so meaningful. We have been truly touched by the graciousness of so many people in our lives. I really cannot say thank you enough or express how meaningful it has been.
Now, I thought it may be interesting to hear (hopefully in a somewhat concise manner, but after completion of this entry I will note it is not particularly concise) about the surgery and recovery thus far from my perspective. It was certainly a shock to learn the diagnosis of a spinal cord tumor back on March 19th. Although I had been having some issues over the last several months, which I thought probably were neurologically related given the different parts of the body (swallowing, left leg, and left hand) involved. It seemed in my non-medically trained opinion that the only thing that could be causing all of these problems was the brain. The spinal cord never crossed my mind. Certainly not a spinal cord tumor. After I had the MRI on the 19th, the neurologist showed me the scans that same day. The first thing he showed me was a cyst in the area of my brain stem. He also showed me a syrinx (basically a rather large collection of cerebralspinal fluid, similar to a cyst) right below that in the very upper part of my cervical spine. He also mentioned the tumor, but I think I was overwhelmed at the time and thought he was referring to the cyst as a cystic type of tumor. I really was just shocked at the diagnosis and the mention of the need for surgery, that I did not fully comprehend the explanation.
When we met with the neurosurgeon the next day (thanks to my neurologist for personally making calls to get me in to see such a sought-after neurosurgeon so quickly), I was surprised to learn that the main concern was actually a tumor inside my spinal cord. As Jesse has mentioned previously, we learned that the removal of the tumor is hoped to resolve all of the cysts without any additional surgery, as they think the tumor was blocking proper CSF flow (however there is the possibility that additional surgery would be needed to drain the cysts if they do not drain on their own). I asked if surgery was the only option, and I was told in no uncertain terms that it was. Otherwise, the tumor would continue to grow and I would eventually have more and more neurological deficits, and eventually lose almost all physical neurological functions. Obviously, this was not an option. Thus, we scheduled surgery for April 5th, as the sooner I could have surgery (especially given the size of my tumor and the amount of compression on the spinal cord), the better the likely outcome.
It was a tough waiting those 16 days to have the surgery, as I just wanted to get it over with. Anticipation of the unknown is never fun. On the 5th, I remember everything from that morning up until they started to wheel me out of the prep room. Apparently I said goodbye and see you later to Jesse after being wheeled out, but they had already given me some sort of medicine, so I don't remember it. Obviously I do not remember, nor was I conscious for, the surgery itself, but the procedure itself is quite interesting. My tumor was between C3-C6, so they first perform a laminectomy (removal of the laminae part of the vertebra) on C3-C6 (so 4 vertebral levels). Then after removal of the bone, they are able to access the spinal cord sheath (the dura). They cut the dura open and expose the spinal cord itself. In the case of my tumor, it arose from the cells inside the spinal cord itself, so it was inside the spinal cord. Thus, the next step is to cut open the spinal cord itself. Once this is done, the surgeon takes a biopsy of the tumor and sends it for an immediate pathological analysis. If the tumor is benign (as it was in my case), then the goal is to completely remove the tumor and achieve a total resection. Some tumors are easier than others to remove, as some are clearly differentiated from the cord itself, while some are more entwined with the cord, making removal without damage to the cord more difficult. It was my understanding (from my family's conversation with the surgeon after the surgery) that mine was largely differentiated, but there were some areas that were more difficult to resect. However, they were able to perform a total resection (which was confirmed by MRI the next night). Once they perform removal of the tumor, then everything is sewn back up. The good news with that the type of tumor I had (ependymoma), is that if a total resection is performed, the likelihood of recurrence is only around 5% (although I will require regular MRI monitoring to check for recurrence).
After the surgery, I vaguely remember being in the recovery room. I next remember waking up in the ICU. The first thing I did was try to move my fingers and toes, which I was able to do. I remember continuing over the next day or two to be wiggling them all the time (I wanted to make sure they wouldn't stop working!) The care in the ICU was great and I was able to move out after less than two full days. The thing that stuck with me the most from the neuro ICU unit was even though I was in pain, and I couldn't feel most of my lower body, was how fortunate I was. On Saturday night, when Jesse and my dad were in the room, the nurse was explaining that I would need to go to an MRI, but she was only talking to Jesse and my dad. She suddenly looked at me, apologized for not talking to me as well, but she said she is not used to having patients that can talk and comprehend what she is saying. That was a truly sobering moment, and it made me realize how fortunate I am.
After a day or so in the regular neuro floor, I was able to return home. I was expecting to be in the hospital for at least several more days, along with a stint in inpatient rehab for an additional week, so being able to go home, without any inpatient rehab, was truly great. I think Jesse has documented how the next couple weeks pretty thoroughly. The last few days have been good. This weekend, we had visitors on Saturday and Sunday. On Saturday, Jesse's aunt and uncle, Sherri and Larry, along with her grandmother, came to visit. We went out to lunch, and visited for awhile. It was great to see them, and it was very nice of them to come down from Saxapahaw. On Sunday, my parents came for lunch, which was nice as well. I had PT yesterday (as they have reduced my OT now to once per week)! I am continuing my current exercises until my next appointment tomorrow (after my morning appointment with the surgeon's office).
As to how I am doing currently, overall I continue to progress. I still have numbness that moves around (currently in my hips and very upper legs area), but overall the numbness is less in most of my legs. It is now more of a lack of full sensation in most of my legs and feet, rather than complete numbness. I am seeing improvement in the return of sensations overall, especially in my feet related to feeling different surfaces and different temperatures. I have read, as well as been told, that more and more sensations will return over 6 months after surgery. I am hopeful that by that time they almost all will have returned. Unfortunately, no matter how good of a surgeon you have, basically everyone that has an intramedullary tumor removed will have sensory deficits for several months, and perhaps some residual lack of sensation and numbness for the rest of your life. This is because the cutting open of the spinal cord itself (the myelotomy) disrupts sensations. The lack of sensation and numbness is by far the most frustrating part of my recovery. However, it could be much worse, so I always keep that in perspective.
Fortunately, my motor skills are largely intact. The deficits I originally had after the surgery in that regard are rapidly improving. I can walk normally (it still feels a little odd due to the lack of sensation, but as more feeling is returning, the "weird" feeling is lessening). This includes being able to walk up the stairs normally. My balance has greatly improved over a couple weeks of physical therapy, and is getting close to normal as well. The strength in my legs is returning too. I honestly feel like I have the balance and strength to run (although I don't think they will let me do that for a good while due to the need to not jostle or otherwise disturb my neck where the surgery took place). My hands are improving with therapy as well. I am still lacking dexterity in both hands. My typing is continuing to improve (my left hand can essentially type normally, but the last two fingers on my right are still an issue). My writing continues to improve, as it is easily legible now (probably no worse than the legibility of my pre-surgery handwriting to be honest). However, it still requires more concentration, but there has been marked improvement from two weeks ago.
We are really looking forward to my appointment tomorrow with the neurosurgeon's office. I am hoping that they will release me to supervised driving tomorrow, with a return to full driving a few days after that. However, that will be up to them to decide. I am also hoping to get a tentative return to work date from them tomorrow as well. We also have quite a few questions regarding how long it might be before they evaluate whether the cysts have resolved on their own, how we go forward from here, removal of some restrictions regarding moving my neck (as my shoulders and neck are very tight, and at times painful, from lack of movement) so I can perhaps work on range of motion exercises as well. We will certainly update everyone once we know more tomorrow.
Finally, I want to express my thanks to Jesse here as well. She has been absolutely incredible throughout this whole process. I certainly don't know how I could have gone through this without her. She has been with me every step of the way, and has taken wonderful care of me from the moment I got out of surgery until now. The first week after surgery when she was helping me put a shirt on (I can thankfully dress myself now), I told her she probably didn't expect to have to help me do things like this for another 50 years or so. But she has been great in getting everything I need, taking me to all my appointments, and overall being great support.
I also want to thank my parents for coming down here so many times and helping both me and Jesse out. They have taken lots of their time to come down and help give us support as well, so I want to thank them.
This was quite a long entry (I obviously have some time on my hands currently), so I will now wrap it up. We will update everyone after tomorrow's appointments (and Jesse will probably want to include an updated picture of my scar, as the last of the steri-strips came off this morning).
-Ben
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