Hello everyone! It is Ben again. Jesse has been quite busy with work and traveling the past week or so. I have not been particularly busy, but I just did not get around to blogging over the past week. The title of this blog alludes to the fact that I will be returning to work on Wednesday, May 15th. At my May 1st appointment, after speaking with Dr. Asher and one of his nurses, we decided on a tentative return to work date of May 15th. If I continued to improve, especially with neck stamina and flexibility, I would call their office to get my return to work note. I called last Wednesday and got my return to work note as my neck had substantially improved (although it still has a ways to go in the muscles on the left side of my neck and upper shoulder). I am excited to get back to work, as it is a place I enjoy working. It feels like I have been gone much longer than five and a half weeks, but I am sure I will get back into the swing of things before long.
I am continuing with my rehab in occupational and physical therapy. I continue to work on my balance, coordination, leg strength, and neck flexibility/strength at physical therapy. I have my next PT appointment Wednesday morning, at which time we will evaluate and update my PT plan. In exciting OT news, I have one appointment scheduled for next Wednesday (they had to cancel my OT appointment from this morning), which should be my final OT appointment. They will discharge me to a home therapy plan where I continue to work on exercises they give me from home.
Also, in my conversation with Dr. Asher's nurse last Wednesday, she also answered a few questions I had. They are actually reducing some of my restrictions. I can now bend, twist, stoop, etc., as long as it is nothing strenuous and I do not overdo it (I know Jesse is happy I can help more around the house with some of the chores now, although the ones she hates of carrying trash and heavy litter I still cannot do). They also increased the amount of weight I am allowed to lift from 5 to 10 pounds. I am also allowed to jog slowly as I am able! I am not allowed to run at this point. However, I tried a couple minutes of jogging this weekend. I most .likely looked like the 80 year old man you see out shuffling along in a jog on the street, but it was progress none the less. I look forward to incorporating a little more of it into my walking regimen as I go forward. These restrictions will be in place until my next office visit towards the end of June.
I hope to continue my recovery once I return to work. I think working will speed up my recovery in some ways, as I will get used to the motor skills required to do my job that I may not be able to practice as much at home. Although, my typing is pretty good now (not including my pinkie on my right hand which still is not cooperative). I think my writing is close to as good as it was before. After all the balance exercises I do at PT, I think that may end up being better than it was before the surgery. My physical therapist was commenting that the goal will be for me to be like the Six Million Dollar Man ("We can rebuild him, we have the technology...better than he was before..."). The lower body numbness still moves around and can be quite annoying and uncomfortable, but that will hopefully resolve over the coming months and year.
Thanks again to everyone who reads for all of your support, thoughts, and prayers.
-Ben
Monday, May 13, 2013
Wednesday, May 1, 2013
Follow-Up Visit
Good morning! I am so glad Ben posted yesterday. :-) Being back at work has certainly kept me busier, but it is going well. Ben continues to get better and better, which makes it easier for me to leave each day.
We had the follow-up visit today with Ben's surgeon. We thought we would be meeting with the surgeon's PA, but we got to meet with Dr. Asher instead. That was a pleasant surprise! The appointment went well. Dr. Asher looked at Ben's incision first and said that it was looking great. He said that recovery will continue to take a while, especially given the size and complexity of the tumor...the tumor was (as we knew) compressing Ben's spinal cord significantly. Dr. Asher said that the spinal cord was actually translucent in some areas where the tumor was...how crazy (and scary) is that? He also said that the numbness Ben is experiencing is 'part and parcel' of recovering from this type of surgery. It will take months for Ben to reach the place of ultimate recovery, and it could take up to a year or two for him to reach the final recovery period. We knew it would be a long road, but we can certainly hope for continued improvement moving forward long-term.
Overall, Dr. Asher is extremely pleased with Ben's progress. He used the words 'delighted' and 'phenomonal' to describe his feelings about the recovery so far. That was wonderful to hear! The chance for recurrence of the tumor is low (around 5% or less from what we have read).
Moving forward, Ben will have another MRI in 4 months to assess the cysts on his spinal cord. Dr. Asher said that it could take a while for the cysts to drain, so at that point they could still be there (but hopefully smaller). He is continuing his therapies through May 15th (at which point they'll re-evaluate him and decide on how to move forward). He is released to move his neck as normal (Dr. Asher's words were "you won't break anything"), so he is going to work on stretching it (and his shoulders) out. If his neck and shoulders continue to hurt, Dr. Asher's office is happy to write him a prescription to add neck exercises to his physical therapy routine. Ben is going to give it a few days and see how he's feeling. He has also been tentatively released to drive. He is supposed to practice supervised driving short distances at first to make sure he can use the pedals and do everything he needs to do to drive safely. He is planning to take it slow! Wish us both luck as he practices. :-)
He mentioned yesterday that the last of his steri-strips came off, so I have another couple of pictures to share. The incision is definitely healing!!
We continue to walk whenever we can, of course! :-)
We had the follow-up visit today with Ben's surgeon. We thought we would be meeting with the surgeon's PA, but we got to meet with Dr. Asher instead. That was a pleasant surprise! The appointment went well. Dr. Asher looked at Ben's incision first and said that it was looking great. He said that recovery will continue to take a while, especially given the size and complexity of the tumor...the tumor was (as we knew) compressing Ben's spinal cord significantly. Dr. Asher said that the spinal cord was actually translucent in some areas where the tumor was...how crazy (and scary) is that? He also said that the numbness Ben is experiencing is 'part and parcel' of recovering from this type of surgery. It will take months for Ben to reach the place of ultimate recovery, and it could take up to a year or two for him to reach the final recovery period. We knew it would be a long road, but we can certainly hope for continued improvement moving forward long-term.
Overall, Dr. Asher is extremely pleased with Ben's progress. He used the words 'delighted' and 'phenomonal' to describe his feelings about the recovery so far. That was wonderful to hear! The chance for recurrence of the tumor is low (around 5% or less from what we have read).
Moving forward, Ben will have another MRI in 4 months to assess the cysts on his spinal cord. Dr. Asher said that it could take a while for the cysts to drain, so at that point they could still be there (but hopefully smaller). He is continuing his therapies through May 15th (at which point they'll re-evaluate him and decide on how to move forward). He is released to move his neck as normal (Dr. Asher's words were "you won't break anything"), so he is going to work on stretching it (and his shoulders) out. If his neck and shoulders continue to hurt, Dr. Asher's office is happy to write him a prescription to add neck exercises to his physical therapy routine. Ben is going to give it a few days and see how he's feeling. He has also been tentatively released to drive. He is supposed to practice supervised driving short distances at first to make sure he can use the pedals and do everything he needs to do to drive safely. He is planning to take it slow! Wish us both luck as he practices. :-)
He mentioned yesterday that the last of his steri-strips came off, so I have another couple of pictures to share. The incision is definitely healing!!
 |
| Up close picture of the scar |
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| The scar again |
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| Walking, walking, walking |
Tuesday, April 30, 2013
Hello Everyone
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
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
Thursday, April 25, 2013
We Continue
Good morning!
Although I feel like I'm repeating myself a lot, I know we will have new updates and progress to report, so I want to keep the blog going. I'm considering us both very lucky that the news continues to be good and that up-to-the-minute updates aren't necessary!
Ben has had a good week so far. He had physical and occupational therapy appointments again on Monday. It had been exactly one week since his first appointments, and both therapists immediately commented on his progress! The physical therapist was especially impressed with how much his walking and balance had improved in the previous week. I can definitely see improvement each day, but since it is gradual, Ben sometimes has a hard time knowing how well he is progressing. I'm glad the therapists pointed it out! He has both appointments again this morning. The exercises he has to do at home keep increasing and increasing, but he is keeping up. The physical therapist added (supervised!!!) balance exercises this week. Ben also continues to practice fine motor skills with his hands and a few shoulder exercises. Until he sees the surgeon again next week, he is still supposed to limit all bending, twisting, and lifting.
Ben's incision continues to heal. We're still waiting for all of the steri-strips to fall off so that I can get a clear photo! From what I can see where the strips are gone, it's amazing how quickly it has healed. There is very little scabbing, and the scar itself is a pretty thin line. Ben's neck pain has decreased this week, which is great.
Ben finished tapering off of his steroids on Sunday, and this caused a rebound headache on Tuesday night. The headache lasted for most of the afternoon and night, but it was gone by mid-morning on Wednesday. I called the nurses to get some guidance, and that it is when we learned that the headache was probably caused by coming completely off of the steroids. There were a whole host of secondary symptoms she asked about (that I'm assuming would've been cause for concern), but Ben hadn't had any of those. They did ask us to call back if he gets another headache, but so far so good!
I returned to work some this week, and so far the transition has gone well. Ben keeps me posted on how he is doing at home (because otherwise I would go crazy!), and I have taken long lunches each day to come back and see him, supervise some exercises, eat, etc. I will work half a day again this afternoon after Ben's appointments. Next week, I will return to a more regular schedule with just time off for Ben's various appointments. We're very much looking forward to the May 1st appointment with the surgeon/PA to discuss Ben's healing so far, the steps for moving forward and things like Ben driving, his possible return to work date, etc. There is no rush on any of those things, of course, but I think we're both ready for at least an estimated timeline.
Everything about work has been great so far. My wonderful co-workers have kept everything running perfectly during my absence, and it has been so nice to step back into my job. Extra special bonus? My sweet husband had this delivered on my first day back! (The 'cupcakes' are chocolate covered pineapple!! YUM!)
Ben and I continue to walk together whenever possible, and he has worked hard to walk even more around the house while I'm at work. The surgeon's office reiterated again how much consistent walking would help with the healing process, and Ben has taken that to heart!
The photos were so much fun to find and post last time...I'm going to close with a few more!
Although I feel like I'm repeating myself a lot, I know we will have new updates and progress to report, so I want to keep the blog going. I'm considering us both very lucky that the news continues to be good and that up-to-the-minute updates aren't necessary!
Ben has had a good week so far. He had physical and occupational therapy appointments again on Monday. It had been exactly one week since his first appointments, and both therapists immediately commented on his progress! The physical therapist was especially impressed with how much his walking and balance had improved in the previous week. I can definitely see improvement each day, but since it is gradual, Ben sometimes has a hard time knowing how well he is progressing. I'm glad the therapists pointed it out! He has both appointments again this morning. The exercises he has to do at home keep increasing and increasing, but he is keeping up. The physical therapist added (supervised!!!) balance exercises this week. Ben also continues to practice fine motor skills with his hands and a few shoulder exercises. Until he sees the surgeon again next week, he is still supposed to limit all bending, twisting, and lifting.
Ben's incision continues to heal. We're still waiting for all of the steri-strips to fall off so that I can get a clear photo! From what I can see where the strips are gone, it's amazing how quickly it has healed. There is very little scabbing, and the scar itself is a pretty thin line. Ben's neck pain has decreased this week, which is great.
Ben finished tapering off of his steroids on Sunday, and this caused a rebound headache on Tuesday night. The headache lasted for most of the afternoon and night, but it was gone by mid-morning on Wednesday. I called the nurses to get some guidance, and that it is when we learned that the headache was probably caused by coming completely off of the steroids. There were a whole host of secondary symptoms she asked about (that I'm assuming would've been cause for concern), but Ben hadn't had any of those. They did ask us to call back if he gets another headache, but so far so good!
I returned to work some this week, and so far the transition has gone well. Ben keeps me posted on how he is doing at home (because otherwise I would go crazy!), and I have taken long lunches each day to come back and see him, supervise some exercises, eat, etc. I will work half a day again this afternoon after Ben's appointments. Next week, I will return to a more regular schedule with just time off for Ben's various appointments. We're very much looking forward to the May 1st appointment with the surgeon/PA to discuss Ben's healing so far, the steps for moving forward and things like Ben driving, his possible return to work date, etc. There is no rush on any of those things, of course, but I think we're both ready for at least an estimated timeline.
Everything about work has been great so far. My wonderful co-workers have kept everything running perfectly during my absence, and it has been so nice to step back into my job. Extra special bonus? My sweet husband had this delivered on my first day back! (The 'cupcakes' are chocolate covered pineapple!! YUM!)
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| Photo from the Edible Arrangements website because I started scarfing mine down without taking a photo! |
The photos were so much fun to find and post last time...I'm going to close with a few more!
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| Honeymoon in Blowing Rock (July 2009) |
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| First trip to Chicago (October 2009) |
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| Wedding in Lenoir (December 2009) |
Sunday, April 21, 2013
Two weeks and then some
No news is definitely good news as we pass two weeks since Ben's surgery. He continues to progress each day, although we are learning quickly that it is easy for him to do too much when he's feeling really good. Between therapy appointments, walking, and going out to eat one day last week, we might have overdone it just a bit. Ben has had a couple of days in a row with more numbness and tiredness, especially in his lower legs. It is definitely frustrating for him, especially after he has days where he feels so much better.
The good news is that he bounces back! He's feeling good today, and he has been keeping up with all of his therapy exercises, even when he isn't feeling 100%. He started the shoulder and elbow/wrist exercises, and they're helping his neck muscles feel better. The neck muscles are the ones that the surgeon had to cut through to get to the spinal cord, so they're understandably sore from that. Combine the surgery with the fact that he has been trying to immobilize his neck/incision as much as possible, and it has lead to some definite muscle tightness. The first time he did the exercises, they were difficult and a bit painful. He stretched a lot and attempted them again today, to much better results! They were easier to complete, and he says he can feel his shoulders/neck loosening up a bit. He has also been practicing writing and typing each day, and he's getting better and better at many tasks that require fine motor skills. He has all of us attempting his exercises to test our own abilities--he can do some just as well as any of us can! :-)
He continues to practice his leg exercises twice each day doing more reps each day. We are looking forward to his next physical therapy appointment (which is tomorrow) so that we can add some variety into those exercises!
We've been enjoying the nice weather when possible. Ben's parents visited this weekend, and it was great to see them! Deborah and I enjoyed a girls' day out with shopping and manicures. And we all met up for a pizza dinner, which was delicious.
We want to thank you all for your continued support throughout this process. The surgery already seems like a lifetime ago, so it's hard for me to believe it's only been 2 weeks. We are so pleased with Ben's progress, but we both do realize that the road to recovery will continue throughout the next weeks and months. We have never faced a moment of feeling alone in this journey, and we are both learning so much about how to support others in their times of need.
We haven't been taking many pictures lately, but I'll close with some oldies I found on the computer. :-) We'll try to get some new photos this coming week!
The good news is that he bounces back! He's feeling good today, and he has been keeping up with all of his therapy exercises, even when he isn't feeling 100%. He started the shoulder and elbow/wrist exercises, and they're helping his neck muscles feel better. The neck muscles are the ones that the surgeon had to cut through to get to the spinal cord, so they're understandably sore from that. Combine the surgery with the fact that he has been trying to immobilize his neck/incision as much as possible, and it has lead to some definite muscle tightness. The first time he did the exercises, they were difficult and a bit painful. He stretched a lot and attempted them again today, to much better results! They were easier to complete, and he says he can feel his shoulders/neck loosening up a bit. He has also been practicing writing and typing each day, and he's getting better and better at many tasks that require fine motor skills. He has all of us attempting his exercises to test our own abilities--he can do some just as well as any of us can! :-)
He continues to practice his leg exercises twice each day doing more reps each day. We are looking forward to his next physical therapy appointment (which is tomorrow) so that we can add some variety into those exercises!
We've been enjoying the nice weather when possible. Ben's parents visited this weekend, and it was great to see them! Deborah and I enjoyed a girls' day out with shopping and manicures. And we all met up for a pizza dinner, which was delicious.
We want to thank you all for your continued support throughout this process. The surgery already seems like a lifetime ago, so it's hard for me to believe it's only been 2 weeks. We are so pleased with Ben's progress, but we both do realize that the road to recovery will continue throughout the next weeks and months. We have never faced a moment of feeling alone in this journey, and we are both learning so much about how to support others in their times of need.
We haven't been taking many pictures lately, but I'll close with some oldies I found on the computer. :-) We'll try to get some new photos this coming week!
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| Summer 2006 (look at our hair! :-) |
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| Easter 2007 in Winston |
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| Engaged!! July 2008 |
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| Married!! July 2009 |
Thursday, April 18, 2013
Checking In
Hello again!
We have been getting into a little bit of a routine here at home these past few days, and we've also been getting back to more real-life things as much as we can. We're easing our way into things for now...we certainly don't want Ben to overdo anything, and I can see myself getting overwhelmed with details if we try to do too much too fast. "Busy" for us right now involves getting out of the house together once a day...
Ben is definitely keeping up with all of his therapy 'homework.' He has four different leg exercises to do twice a day (and trust me, they're HARD...I tried them myself...), and he has been practicing various exercises with his hands as well. For occupational therapy, he has been doing things like: practicing writing and typing, picking up grains of rice with tweezers, drawing shapes with pencil/ruler and then cutting them out, sorting piles of randomness (screws, rubber bands, paperclips, etc.) into individual cups, stringing together paperclips and then un-stringing them, etc. He just finished up at his second occupational therapy appointment this afternoon, and he has even more homework now. He will be doing some shoulder exercises with an exercise band, and he has pages and pages of writing homework to complete as well as an online typing test. I am so glad because I can already see improvement in his hands since his first appointment. I'm sure the new exercises will help even more.
We've been using our outings to walk at the green way (still!), and it's really enjoyable to be together there in the mornings. Each time we go out, we walk a little bit longer and a tiny bit faster. Ben's energy is getting better and better each day as well, but he has certainly earned a few rest breaks this past week!
The upcoming week will get even busier. From here on out, Ben will have both physical and occupational therapy appointments twice per week. They're currently scheduled that way through the middle of May, but I think that their frequency could change depending on how Ben progresses. I am going to attempt to ease my way back into work part-time next week as well. I plan to take intermittent leave for all of Ben's appointments and to come check on him at home during the day. I am looking forward to seeing all my sweet library kiddos again soon (two new baby siblings have arrived since I left, y'all! I need to see those tiny babies! :-)
We have continued to receive sweet cards, kind message, and delicious meals. We are so very appreciative! I cannot imagine being on this journey without all of the love and support we've had the whole way through. I know I'm repeating myself, but it definitely bears repeating: we are SO GRATEFUL.
We have been getting into a little bit of a routine here at home these past few days, and we've also been getting back to more real-life things as much as we can. We're easing our way into things for now...we certainly don't want Ben to overdo anything, and I can see myself getting overwhelmed with details if we try to do too much too fast. "Busy" for us right now involves getting out of the house together once a day...
Ben is definitely keeping up with all of his therapy 'homework.' He has four different leg exercises to do twice a day (and trust me, they're HARD...I tried them myself...), and he has been practicing various exercises with his hands as well. For occupational therapy, he has been doing things like: practicing writing and typing, picking up grains of rice with tweezers, drawing shapes with pencil/ruler and then cutting them out, sorting piles of randomness (screws, rubber bands, paperclips, etc.) into individual cups, stringing together paperclips and then un-stringing them, etc. He just finished up at his second occupational therapy appointment this afternoon, and he has even more homework now. He will be doing some shoulder exercises with an exercise band, and he has pages and pages of writing homework to complete as well as an online typing test. I am so glad because I can already see improvement in his hands since his first appointment. I'm sure the new exercises will help even more.
We've been using our outings to walk at the green way (still!), and it's really enjoyable to be together there in the mornings. Each time we go out, we walk a little bit longer and a tiny bit faster. Ben's energy is getting better and better each day as well, but he has certainly earned a few rest breaks this past week!
The upcoming week will get even busier. From here on out, Ben will have both physical and occupational therapy appointments twice per week. They're currently scheduled that way through the middle of May, but I think that their frequency could change depending on how Ben progresses. I am going to attempt to ease my way back into work part-time next week as well. I plan to take intermittent leave for all of Ben's appointments and to come check on him at home during the day. I am looking forward to seeing all my sweet library kiddos again soon (two new baby siblings have arrived since I left, y'all! I need to see those tiny babies! :-)
We have continued to receive sweet cards, kind message, and delicious meals. We are so very appreciative! I cannot imagine being on this journey without all of the love and support we've had the whole way through. I know I'm repeating myself, but it definitely bears repeating: we are SO GRATEFUL.
Tuesday, April 16, 2013
Picture Post
Things continue to go well here at home. Ben is already being very diligent about his "homework" from both the physical and occupational therapists, and we're getting out of the house here and there when possible (we hit up the green way again this morning, which was great!). Here a few recent pictures. Note: There is a picture of his (covered) scar at the bottom...just look away if you're squeamish! :-)
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| Ben at the green way on Sunday |
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| Just some of the cards we've received; we are so very grateful for everyone's support! |
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| Some of our wedding flowers, delivered by wonderful co-workers |
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| Bella, as captured by Katie :-) |
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| Ben's scar (covered in steri-strips) |
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