Hi,
The New Year started on a bittersweet note. We spent our winter break up at our cabin where I met my goal of cross country skiing. I was elated to be able to do it ( I was not yet able to last winter) and I really enjoyed being out in the snow, exercising and enjoying the beautiful north woods beauty. I felt great afterwards and loved how it really uses the whole body. What a great workout! On the way home from the 2nd day of skiing, I slipped and fell on some ice in a parking lot where we had stopped to pick up some pizza.. The following afternoon I was experiencing significantly reduced sensation on my right side and increased neck pain. Several steps backward after a big leap forward.
I am now trying to get back to my old exercise routine of swimming and yoga, made more difficult by the renewed neck pain. I also found a used NordicTrack Pro skier on Craiglist for $40! to compliment my new interest in cross country skiing which I hope to do a lot more of in the future. Exercise seems to be the common answer by all my doctors for continued recovery so that is what I will do. So, again I am trying to be patient in this recovery process. And hope this is just a temporary setback.
One thing that took my mind of of my fall just a bit was a glorious win a couple days later by my MSU Spartans in the Rose Bowl!! Way to go!!
Happy New Year to you,
Emily
Wednesday, January 15, 2014
Tuesday, November 19, 2013
Moving Forward
Hi Everyone,
I don't post much anymore since things are settling more to a more normal routine for myself and my family. I have graduated from physical therapy and now I am on my own to keep up with exercises, swimming, etc. Over the summer I continued to have issues with my right-side numbness continuing to increase. I had an MRI a few weeks ago locally and scheduled to go to Mayo Clinic to meet with my neurologist and also a neurosurgeon to go over it.
I had a good visit at Mayo yesterday. The doctors said my spinal cord was stable and thought it very unlikely for a tumor to return. I will go in for two more 6 month MRI's then start going once a year from then on. One of the doctors said I should live a long life at this point. That was nice to hear. No one had said those words before. They all stressed the importance of exercising to help the recovery along even more.
Regarding my worsening numbness over the past few months: they said that weakened nerves or nerve cells from my surgery that had been "hanging on" have probably been "giving up" recently and the cells are dying. They thought this should plateau soon and I will then stay the same from that point on. Once I plateau I just move on from there to adapt as best as I can. They said this can happen and is not unusual. No way to know exactly how long it will take to reach that point but they hoped I was nearly there. So, I wish the numbness would get better but at least I finally have an explanation. Loss of sensation is the most common result from this kind of surgery.
So overall good news for the long term. It is hard facing the reality of the permanence of the numbness but I know things could have been much worse. I can learn to cope with my current obstacles.
I continue to knit and have been able to do it for longer periods at a time. I still have a lot neck pain but it has improved a bit. I am hoping to reach my goal of cross country skiing this winter at the cabin. Let's hope for lots of snow !!
Enough medical stuff for now! Thanks for all of your support through this. To those I will not see- Have a nice Thanksgiving. :-)
Emily
I don't post much anymore since things are settling more to a more normal routine for myself and my family. I have graduated from physical therapy and now I am on my own to keep up with exercises, swimming, etc. Over the summer I continued to have issues with my right-side numbness continuing to increase. I had an MRI a few weeks ago locally and scheduled to go to Mayo Clinic to meet with my neurologist and also a neurosurgeon to go over it.
I had a good visit at Mayo yesterday. The doctors said my spinal cord was stable and thought it very unlikely for a tumor to return. I will go in for two more 6 month MRI's then start going once a year from then on. One of the doctors said I should live a long life at this point. That was nice to hear. No one had said those words before. They all stressed the importance of exercising to help the recovery along even more.
Regarding my worsening numbness over the past few months: they said that weakened nerves or nerve cells from my surgery that had been "hanging on" have probably been "giving up" recently and the cells are dying. They thought this should plateau soon and I will then stay the same from that point on. Once I plateau I just move on from there to adapt as best as I can. They said this can happen and is not unusual. No way to know exactly how long it will take to reach that point but they hoped I was nearly there. So, I wish the numbness would get better but at least I finally have an explanation. Loss of sensation is the most common result from this kind of surgery.
So overall good news for the long term. It is hard facing the reality of the permanence of the numbness but I know things could have been much worse. I can learn to cope with my current obstacles.
I continue to knit and have been able to do it for longer periods at a time. I still have a lot neck pain but it has improved a bit. I am hoping to reach my goal of cross country skiing this winter at the cabin. Let's hope for lots of snow !!
Enough medical stuff for now! Thanks for all of your support through this. To those I will not see- Have a nice Thanksgiving. :-)
Emily
Saturday, July 6, 2013
Summertime and the livin' is easy...
Welcome to summer. We are enjoying time at the cabin. A short post to update more progress.
My latest MRI at the end of May at Mayo Clinic was clear. No evidence of tumor regrowth! Yea! The longer the MRI's come out clear, the less likely the possibility of recurrence. I have had more numbness return which is unsettling but I am also making more physical gains so I try to concentrate on that. My surgeon said I need to lose the 30 lbs I have gained since the surgery. It may be contributing to the loss of sensation due to that causing the fluid in my spinal cord have higher pressure. I have lost 8 lbs so far. It is harder since I am less active than I used to be due to physical limitations: mostly neck pain. But I am trying hard to change that!
Goals met since last post:
April:
I can ride my two wheel bike! No problem!
June:
I started driving myself to physical therapy in Chicago.
I biked 22 miles along the Little Traverse Wheelway between Charlevoix, Mi and Bay Shore, Mi.
July:
I biked around Mackinac Island - about 10 miles. This was my original goal. I didn't expect to be biking 22 miles the week before!
I walked a 5K run/ walk around Big Twin Lake. Next I would like to do a 10K.
So, things are continuing to improve slowly but steadily. I think I need to come up with more goals. Cross country skiing is still on the list as well as writing, which is still difficult for me. That is my biggest desire.
Happy summer to everyone,
Emily
My latest MRI at the end of May at Mayo Clinic was clear. No evidence of tumor regrowth! Yea! The longer the MRI's come out clear, the less likely the possibility of recurrence. I have had more numbness return which is unsettling but I am also making more physical gains so I try to concentrate on that. My surgeon said I need to lose the 30 lbs I have gained since the surgery. It may be contributing to the loss of sensation due to that causing the fluid in my spinal cord have higher pressure. I have lost 8 lbs so far. It is harder since I am less active than I used to be due to physical limitations: mostly neck pain. But I am trying hard to change that!
Goals met since last post:
April:
I can ride my two wheel bike! No problem!
June:
I started driving myself to physical therapy in Chicago.
I biked 22 miles along the Little Traverse Wheelway between Charlevoix, Mi and Bay Shore, Mi.
July:
I biked around Mackinac Island - about 10 miles. This was my original goal. I didn't expect to be biking 22 miles the week before!
I walked a 5K run/ walk around Big Twin Lake. Next I would like to do a 10K.
So, things are continuing to improve slowly but steadily. I think I need to come up with more goals. Cross country skiing is still on the list as well as writing, which is still difficult for me. That is my biggest desire.
Happy summer to everyone,
Emily
Monday, March 25, 2013
To The Sea
Another Jack Johnson reference perfect for the title to this post. Bill, Zachary and I have returned to Sanibel Island for spring break. ( Elizabeth went to France) We come with a much better outlook this year, as last year we had to leave early to go to Mayo clinic due to a scare that the tumor was coming back ( which proved to be false luckily).
My first impressions are how much better I am this year. Simple things like shopping for the groceries and taking a standing shower were difficult when we came last year. I still needed pain medication regularly and had to rest most of the afternoon. Even driving around the island was difficult on my neck. This time I felt so much better. My neck still got sore at times but it was much more manageable.
This time we had a lovely condo with views of the ocean. It was great hearing the waves at night. The week was very active. We rented bikes two of the days. I rode a recumbent bike with 3 wheels that worked very well for me. I was hesitant to ride a regular bike since i cannot feel the seat and falling would also not be a good thing. With the modified bike I was able to bike 15 miles one day!
We got up before sunrise a few times to go shelling. We found many, many beautiful shells. We took a boat ride to Cayo Costa off of Captiva Island. Lots of walking on the beach. We saw a live alligator ( not on the beach :-). )
We had a wonderful time and I was so happy that I could be so active and we could all enjoy the vacation together.
My first impressions are how much better I am this year. Simple things like shopping for the groceries and taking a standing shower were difficult when we came last year. I still needed pain medication regularly and had to rest most of the afternoon. Even driving around the island was difficult on my neck. This time I felt so much better. My neck still got sore at times but it was much more manageable.
This time we had a lovely condo with views of the ocean. It was great hearing the waves at night. The week was very active. We rented bikes two of the days. I rode a recumbent bike with 3 wheels that worked very well for me. I was hesitant to ride a regular bike since i cannot feel the seat and falling would also not be a good thing. With the modified bike I was able to bike 15 miles one day!
We got up before sunrise a few times to go shelling. We found many, many beautiful shells. We took a boat ride to Cayo Costa off of Captiva Island. Lots of walking on the beach. We saw a live alligator ( not on the beach :-). )
We had a wonderful time and I was so happy that I could be so active and we could all enjoy the vacation together.
Sunday, January 27, 2013
Lap Time
Hi,
There have been some ups and downs since my last post. I will start with the "Ups."
The title of this blog post refers to the playlist title I use on my new Water-fi that I got for Christmas that I use when swimming my laps. A Water-fi is an Apple iPod Shuffle that has been water-proofed by another company. It clips to my swim goggles and comes with water-proof headphones. It makes swimming laps much more enjoyable and the times melts away into listening to fun, upbeat songs. Yesterday I hit a new high of 16 laps. I started out at 8 laps in December. I have also added a functional backstroke so my list of accomplishments. My arms can't quite go straight back but it works. My goal is to do the crawl again. Swimming really helps my arm range of motion and hope it continues to help my recovery. I am very out of shape after the past year and need to get stronger and healthier again.
Now the "Downs." In late December the doctors decided to try me on a new medicine to help with my neuropathy symptoms (the nerve pain and troublesome itching in my right arm). I have not been able to wear a sleeve on my right arm without great discomfort and with winter here I get pretty cold! The new drug Lyrica was started. It was a process: gradually weaning off the old drug (neurontin) and gradually starting up the Lyrica. Once on Lyrica for a while I noticed that although the nerve pain was better, the itching was worse, it was making me feel very depressed and I was starting to have balance problems. Not a good thing. It was decided I would go back to Neurontin. So, that meant gradually weaning off of the Lyrica and gradually starting up the Neurontin. Here we go again. But that didn't go very smoothly. I started having withdrawal symptoms ( which can happen with this drug). I experienced terrible migraine-like headaches that didn't respond to pain killer, nausea, insomnia and upset stomach. But as of yesterday I am feeling much better and think I may be finally past it.
We had a nice holiday in Michigan. I was not able to go cross country skiing as I had hoped. I did not think my neck was quite ready for that kind of exercise yet. I will have to wait for next year. The kids tried snow boarding for the first time though and had a lot of fun. I don't think I will be trying that!
There have been some ups and downs since my last post. I will start with the "Ups."
The title of this blog post refers to the playlist title I use on my new Water-fi that I got for Christmas that I use when swimming my laps. A Water-fi is an Apple iPod Shuffle that has been water-proofed by another company. It clips to my swim goggles and comes with water-proof headphones. It makes swimming laps much more enjoyable and the times melts away into listening to fun, upbeat songs. Yesterday I hit a new high of 16 laps. I started out at 8 laps in December. I have also added a functional backstroke so my list of accomplishments. My arms can't quite go straight back but it works. My goal is to do the crawl again. Swimming really helps my arm range of motion and hope it continues to help my recovery. I am very out of shape after the past year and need to get stronger and healthier again.
Now the "Downs." In late December the doctors decided to try me on a new medicine to help with my neuropathy symptoms (the nerve pain and troublesome itching in my right arm). I have not been able to wear a sleeve on my right arm without great discomfort and with winter here I get pretty cold! The new drug Lyrica was started. It was a process: gradually weaning off the old drug (neurontin) and gradually starting up the Lyrica. Once on Lyrica for a while I noticed that although the nerve pain was better, the itching was worse, it was making me feel very depressed and I was starting to have balance problems. Not a good thing. It was decided I would go back to Neurontin. So, that meant gradually weaning off of the Lyrica and gradually starting up the Neurontin. Here we go again. But that didn't go very smoothly. I started having withdrawal symptoms ( which can happen with this drug). I experienced terrible migraine-like headaches that didn't respond to pain killer, nausea, insomnia and upset stomach. But as of yesterday I am feeling much better and think I may be finally past it.
We had a nice holiday in Michigan. I was not able to go cross country skiing as I had hoped. I did not think my neck was quite ready for that kind of exercise yet. I will have to wait for next year. The kids tried snow boarding for the first time though and had a lot of fun. I don't think I will be trying that!
Saturday, December 8, 2012
December 8, 2012
Today marks the day that I had surgery one year ago. I am spending today in a much better way: having a Christmas Dinner Party with close friends. A nice way to be spending it and celebrating all that I have overcome the past year. Thanks go to you all for your support and encouragement. It helps so much.
Recent news:
I had my one year MRI at Mayo Clinic a few weeks ago and it showed things progressing and best of all no evidence of tumor regrowth.
I will be returning to RIC in Chicago for more PT and OT. I was accepted there again after a note from my surgeon who wanted me to continue there rather than locally.
I have started swimming laps per doctors orders as he felt it was the best way for me to exercise.
I am knitting my first sweater since my surgery!
Things are not perfect yet but I keep doing all I can to get better. If I look back over one or two month periods I can see improvements on some things.
I'll keep you posted! Happy Holidays to you!
Emily
Recent news:
I had my one year MRI at Mayo Clinic a few weeks ago and it showed things progressing and best of all no evidence of tumor regrowth.
I will be returning to RIC in Chicago for more PT and OT. I was accepted there again after a note from my surgeon who wanted me to continue there rather than locally.
I have started swimming laps per doctors orders as he felt it was the best way for me to exercise.
I am knitting my first sweater since my surgery!
Things are not perfect yet but I keep doing all I can to get better. If I look back over one or two month periods I can see improvements on some things.
I'll keep you posted! Happy Holidays to you!
Emily
Wednesday, September 5, 2012
End of Summer Update
Hi,
I have been meaning to post earlier but things have been busier-which is a good thing. I continue to go up near Chicago for my physical therapy. I just changed from going once a week to twice a week for two and three hour sessions. I have very much appreciated all the friends who have volunteered to drive me there. It is a big favor to ask and so kind of you to help me get there. The therapy is starting to show results in that I am gaining range of motion in my neck and arms. I have further to go but am optimistic for more improvement.
I have more strength now but still struggle with the gradually increasing numbness on my right side. My hand function is the most troublesome. In spite of this, I have a lot of firsts to report:
1. I am driving on my own now, short trips to the store, school, etc.
2. Attended first Yoga class at YMCA with Bill
3. Finally got my hair done at the salon!
4. Baked my first pie (including making crust) since my surgery.
5. Hosted my book group at my house.
6. Rejoining my little knitting group :-).
7. Attending the annual fall banquet for Bill's Department at the university.
8. Am making progress on a real knitting project: a lace scarf! Picture to follow!
These may seem like little things but they are things I could not have done just a couple months ago so it shows I am making progress. I'll take it! I still have some rough days but I think overall I am "moving forward, not back!" (slight Obama reference, couldn't resist! :-)
Still on my list of goals: being able to do more of the Yoga poses in my class, riding my bike, cross country skiing, running/walking a 5K, and writing with my right hand- the most elusive and important to me.
I have been meaning to post earlier but things have been busier-which is a good thing. I continue to go up near Chicago for my physical therapy. I just changed from going once a week to twice a week for two and three hour sessions. I have very much appreciated all the friends who have volunteered to drive me there. It is a big favor to ask and so kind of you to help me get there. The therapy is starting to show results in that I am gaining range of motion in my neck and arms. I have further to go but am optimistic for more improvement.
I have more strength now but still struggle with the gradually increasing numbness on my right side. My hand function is the most troublesome. In spite of this, I have a lot of firsts to report:
1. I am driving on my own now, short trips to the store, school, etc.
2. Attended first Yoga class at YMCA with Bill
3. Finally got my hair done at the salon!
4. Baked my first pie (including making crust) since my surgery.
5. Hosted my book group at my house.
6. Rejoining my little knitting group :-).
7. Attending the annual fall banquet for Bill's Department at the university.
8. Am making progress on a real knitting project: a lace scarf! Picture to follow!
These may seem like little things but they are things I could not have done just a couple months ago so it shows I am making progress. I'll take it! I still have some rough days but I think overall I am "moving forward, not back!" (slight Obama reference, couldn't resist! :-)
Still on my list of goals: being able to do more of the Yoga poses in my class, riding my bike, cross country skiing, running/walking a 5K, and writing with my right hand- the most elusive and important to me.
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