Since my successful Chiari Decompression!
10/11/12 - 10/11/14
I've come a long way in 2 years! I'm feeling healthy and so much more capable and positive. It's wonderful to not have all of the symptoms that I had a couple years ago as a result of Chiari Malformation. I'm grateful everyday to be living without the pain, feeling of pinched nerves, knotted muscles in my neck and shoulder, lack of balance, blurred vision, etc. Some of the symptoms I can hardly remember; most everything was relieved immediately after the surgery. I had an amazingly skilled surgeon, Dr. Rachana Tyagi at Robert Wood Johnson.
Ouch! This was me 2 years ago...
Yep...staples! I think there were 19
We took this one today on the way to
our Campus Sunday at church. Go R.U.!
So grateful for my husband Bob's patience, love, and support....he's amazing! Grateful for my family Bree, Ross, and Manami's love, prayers, and support through the hard times leading up to my surgery and during my recovery. I know I was always in the thoughts and prayers of our parents and family in New Jersey and Montana and felt their support. I'll never forget the support of my church family and friends during my recovery for all their acts of kindness and service; now that's love! I'm so grateful for "my home nurse", Manami who is now my daughter (in law)! Big YAY for that!!! Now there's a way to earn some brownie points....taking care of your future mother-in-law recovering from brain surgery. She's pretty special! Ross and Manami were married September 26th, 2013!
I am feeling great and have gotten myself in pretty good shape in this past year. Without all those aches and pains I am now able to be consistent with exercise and diet and have lost 55 lbs! I go to the gym 3 or more days a week and have been able to get back to doing some activities that had become very difficult or impossible for a few years. I went back to snow skiing just a couple months after my surgery, we kayak, and have enjoyed some very long strenuous hikes. A couple months ago we hiked in Glacier Park, Montana 10 miles to Ptagmigan Tunnel; no easy feat at that altitude! Cranial decompression surgery is no joke, I really wouldn't want to go through it again, but life is great (now) and I'm very grateful that it was such a success! I thank God for a life I love!
Oh...did I mention....Hurricane Sandy hit a week after I was home recovering? That was a bit of an adventure that you can read about if you scroll back in my blog.
Jami's Chiari Connection
Becoming a Zipperhead Gracefully
Sunday, October 12, 2014
Friday, January 18, 2013
3 Months Post Op
Doing Great; Exercising and Getting in Shape
I had another post op appointment this past week. I am really happy about my progress and so is Dr. Tyagi. She can really see that my balance has improved, I'm healing very well and getting my stamina back. When she asked me what percentage I thought I was up to in my Chiari recovery I said 75-80%, which seemed to make her very happy. I do still have facial numbness and a bit of swelling, although it is not the same as before the surgery. Dr. Tyagi wants me to return in April since I do still have these symptoms and possibly do a MRI. She said that we really need to give it a year since the nerves had been compressed for so long it may take a really long time to recover. After seeing Dr. Tyagi last week I had about 4 days that I didn't have any symptoms at all; the numbness and swelling was gone in my face...it felt great! To me my face looks really different when I don't have all that inflammation from the nerves being aggravated. I'm really hopeful that my nerves will calm down permanently, but yesterday and today it's back. I have had a bit of a headache the last two days and not feeling great. It almost seems like I have a bit of a bug...we'll see; it doesn't seem as if it's just Chiari symptoms.
So in the meantime, I have been really pushing myself to get in shape since I have the time and I'm feeling so good now. I'm going to the gym most weekdays running 3 1/2 miles on the elliptical in 40 minutes. I started adding a weight workout 2 weeks ago. We'll be going to Colorado to see Bree & Dean and ski in March, so it will be good to be in shape a little bit at least.
I was buying some new furniture this week and talking to the saleswoman. Her 15 year old daughter has had 3 surgeries for Chiari. What a surprise to hear when such a short time ago I had never even heard of Chiari.
I had another post op appointment this past week. I am really happy about my progress and so is Dr. Tyagi. She can really see that my balance has improved, I'm healing very well and getting my stamina back. When she asked me what percentage I thought I was up to in my Chiari recovery I said 75-80%, which seemed to make her very happy. I do still have facial numbness and a bit of swelling, although it is not the same as before the surgery. Dr. Tyagi wants me to return in April since I do still have these symptoms and possibly do a MRI. She said that we really need to give it a year since the nerves had been compressed for so long it may take a really long time to recover. After seeing Dr. Tyagi last week I had about 4 days that I didn't have any symptoms at all; the numbness and swelling was gone in my face...it felt great! To me my face looks really different when I don't have all that inflammation from the nerves being aggravated. I'm really hopeful that my nerves will calm down permanently, but yesterday and today it's back. I have had a bit of a headache the last two days and not feeling great. It almost seems like I have a bit of a bug...we'll see; it doesn't seem as if it's just Chiari symptoms.
So in the meantime, I have been really pushing myself to get in shape since I have the time and I'm feeling so good now. I'm going to the gym most weekdays running 3 1/2 miles on the elliptical in 40 minutes. I started adding a weight workout 2 weeks ago. We'll be going to Colorado to see Bree & Dean and ski in March, so it will be good to be in shape a little bit at least.
I was buying some new furniture this week and talking to the saleswoman. Her 15 year old daughter has had 3 surgeries for Chiari. What a surprise to hear when such a short time ago I had never even heard of Chiari.
Tuesday, December 11, 2012
8 Weeks Post-op
Answered prayer - coming back to life
Can't believe it's been 8 weeks since my surgery! It has taken a long time to recover and it's been quite a bit harder than I expected. I'm surely not 100% yet. It's been so good that I haven't had to push myself though since I am not going back to work and Bob is so patient with me. I have been back to exercising at the gym for the past three weeks. I could only walk on the treadmill for a half hour for the first week. The second week I started on the elliptical machine for 15 to 30 minutes. It really wasn't that hard, but then later I felt very nauseous. Now I am able to go 30 minutes on the elliptical and 30 minutes walking! My legs are quite stiff later on in the afternoon and evening. It's amazing how weak my legs and knees are after about 5 weeks of being pretty inactive except for my walks around the neighborhood. I've sure been able to get so much done at home also.
The bigger news is that the last 3 days are the first in over a year that the nerves in my face have calmed down! It seems like 8 weeks is a big turning point for me; I can barely notice any sign of the nerve issues I was feeling before. I am hoping that it will all continue to improve. Just a few days ago I was feeling a bit discouraged when the nerves felt worse in my face and shoulder after exercising and when I was tired. So, my symptoms overall seem like they are greatly improved. I still think I have a ways to go for a total recovery. Also, as those who have Chiari know, symptoms can come and go. So, I don't know what to expect, but it all seems to be moving in the right direction. My stamina has greatly improved. I went out to do some big shopping at BJ's yesterday and was able to walk through the store and come home without feeling totally wiped out like I would previously when shopping. My neck muscles are also much stronger and as I exercise I also work on stretches with my neck. Since starting to use Mederma my incision scar has smoothed out and diminished.
Now...what to do with my hair??? For now I am happy to not be blow drying, letting it dry on it's own and clipping back the long parts. I have one long section in the back at the crown that covers my scar and short hair. Then I have two long bits of hair on each side with no long hair in the back; it's pretty well camouflaging that I had surgery. I usually just wear a scarf when I go out so it's not noticeable that my hair is all wacky in the back. Let's see how long I can go without cutting it. For now I'm just cutting my bangs as needed.
scrappy hair |
The bigger news is that the last 3 days are the first in over a year that the nerves in my face have calmed down! It seems like 8 weeks is a big turning point for me; I can barely notice any sign of the nerve issues I was feeling before. I am hoping that it will all continue to improve. Just a few days ago I was feeling a bit discouraged when the nerves felt worse in my face and shoulder after exercising and when I was tired. So, my symptoms overall seem like they are greatly improved. I still think I have a ways to go for a total recovery. Also, as those who have Chiari know, symptoms can come and go. So, I don't know what to expect, but it all seems to be moving in the right direction. My stamina has greatly improved. I went out to do some big shopping at BJ's yesterday and was able to walk through the store and come home without feeling totally wiped out like I would previously when shopping. My neck muscles are also much stronger and as I exercise I also work on stretches with my neck. Since starting to use Mederma my incision scar has smoothed out and diminished.
8 weeks post-op |
Now...what to do with my hair??? For now I am happy to not be blow drying, letting it dry on it's own and clipping back the long parts. I have one long section in the back at the crown that covers my scar and short hair. Then I have two long bits of hair on each side with no long hair in the back; it's pretty well camouflaging that I had surgery. I usually just wear a scarf when I go out so it's not noticeable that my hair is all wacky in the back. Let's see how long I can go without cutting it. For now I'm just cutting my bangs as needed.
This morning when I was waking up I was thinking about how God has
answered my prayers for healing. It's so nice to wake up feeling good. Over the years I have prayed for answers to what
was going on with my body. For God to reveal it or for my symptoms to
just go away. Of course this past year I became even more urgent for an
answer to be revealed. This morning as I was thinking about it all, I
thought about how God must have chosen just the right time in my life to
expose things. I really don't know the answer to why now, but that's
how I'm thinking about it right now. I know that God has his own timing and he knows what's best for us; we just need to trust it since it doesn't always appear that way. I just feel so blessed to be
retired and not to feel all the daily pressures of work, so it has been a
great time for me to have a surgery and recover. We're so blessed that
Bob has an incredible career that allows for me to be home and that our
insurance through his work has paid for nearly all of my surgery
expenses. We're so blessed to have such dear friends that have helped us through this time. So grateful!
Sunday, December 2, 2012
7 Weeks Post-op
Time Flies
Hard to believe it's been 7 weeks since my decompression surgery. I am feeling really good and trying to get back to regular activities. I do get quite tired after being out at a store or any type of event after just a short time. My neck can start to tense up, which will effect my shoulder and I'll then start to feel some numbness in my face. Then I go home so exhausted it's incredible. I started going back to Retro Fitness with Bob a couple of days this week. I can't do much; I'm walking on the treadmill for a half hour. By that time I start to feel so hot and a bit weak. I'll try to push myself a bit more this coming week. Bob is hoping that I'll be able to ski this year. I'm just not sure that my legs will even be strong enough. It's amazing that after 6 weeks of inactivity and then not exercising that my legs and knees seem so weak that it's hard to even walk up stairs.
My nerves have really seemed to have calmed down so much. I am really waiting to regain my strength and get back to a more normal way of living to see how I feel in the long run. I started keeping a symptom log, marking on drawings of a person where my symptoms are and keeping brief notes each day. When I go back to see Dr. Tyagi in January I'd like to be able to be clear about the progression of healing or if they nerves have healed. When I saw her last time I felt like the nerves were responding a bit differently, but I was still having so much pain in my shoulder and arm so it was hard to tell what results I was having from the surgery. I hope that keeping a clear symptom journal will tell give a more clear picture of what has been happening. Most of the nerve issues I had in my neck, shoulder and left arm and leg have either disappeared or are considerably better. The one thing that I notice most consistently is the numbness in the left side of my face and some tension or spot nerve pain in my left shoulder. It isn't as bad or the same as it was before surgery, but is still there. I am hopeful that as my neck muscles heal completely and I get back my strength and return to regular activity that my nerves will recover from all the compression.
This week I started using Mederma on my incision and the scar from the catheter that was in the artery in the front of my neck. I had heard of Mederma before, but guess I didn't remember it and I've only been putting vitamin E oil on the incision. The Mederma seems to have immediately started working to heal the incision. Part of the incision that was a bit more bubbly right away started flattening out. It has also caused the incision to be extremely itchy as it heals. I've been wondering why it wasn't becoming more itchy before this. I had already bought some Lanacane spray because I know how unbearably itchy the healing can be. Once in awhile I have to use the Lanacane spray right before bed or the itchiness will drive me a bit crazy while I'm trying to fall asleep.
I could make a list of necessary items for Chiari decompression surgery...
In the beginning, the only things you really need are:
Hard to believe it's been 7 weeks since my decompression surgery. I am feeling really good and trying to get back to regular activities. I do get quite tired after being out at a store or any type of event after just a short time. My neck can start to tense up, which will effect my shoulder and I'll then start to feel some numbness in my face. Then I go home so exhausted it's incredible. I started going back to Retro Fitness with Bob a couple of days this week. I can't do much; I'm walking on the treadmill for a half hour. By that time I start to feel so hot and a bit weak. I'll try to push myself a bit more this coming week. Bob is hoping that I'll be able to ski this year. I'm just not sure that my legs will even be strong enough. It's amazing that after 6 weeks of inactivity and then not exercising that my legs and knees seem so weak that it's hard to even walk up stairs.
My nerves have really seemed to have calmed down so much. I am really waiting to regain my strength and get back to a more normal way of living to see how I feel in the long run. I started keeping a symptom log, marking on drawings of a person where my symptoms are and keeping brief notes each day. When I go back to see Dr. Tyagi in January I'd like to be able to be clear about the progression of healing or if they nerves have healed. When I saw her last time I felt like the nerves were responding a bit differently, but I was still having so much pain in my shoulder and arm so it was hard to tell what results I was having from the surgery. I hope that keeping a clear symptom journal will tell give a more clear picture of what has been happening. Most of the nerve issues I had in my neck, shoulder and left arm and leg have either disappeared or are considerably better. The one thing that I notice most consistently is the numbness in the left side of my face and some tension or spot nerve pain in my left shoulder. It isn't as bad or the same as it was before surgery, but is still there. I am hopeful that as my neck muscles heal completely and I get back my strength and return to regular activity that my nerves will recover from all the compression.
Two must haves for healing |
I could make a list of necessary items for Chiari decompression surgery...
In the beginning, the only things you really need are:
- a nice soft pillow
- straws - it's too hard to bend your head back to drink
- a good lip balm
- and of course your pain meds
- Mederma
- Lanacane
Sunday, November 25, 2012
6 Weeks Post-op and Doing Great!
Mom Lippencott (Helen), Ross & Me |
I have so much to be thankful for that I can't even express it all. My mom, Bob's mom and I have all had health issues this year and are all recovering thankfully. What I've gone through gives me a whole new level of gratitude for my life, family, and friends.
My Mom, Mitzi |
I have an amazing husband who loves, encourages, and supports me. We have a great life together and we have so much to look forward to. I have two amazing adult children who make me so proud and grateful. Thank you God for this life!
Bree, Dean, Bob, Jami, Ross & Manami |
I feel like 6 weeks after surgery that I am finally at a turning point where I am feeling so much better, have more energy and feel like I can get back to some normal activities. Today after spending the morning pretty active in The Children's Ministry I was a bit tired, but didn't come home and crash like I did the last two weeks. I also felt like I could walk up and down the halls checking in on classes and sharing with the children. I don't remember sitting down while I was there today like the last two weeks. This last week my symptoms have been very mild and hardly present except for late in the evening when I'm tired. I can see improvement everyday and looking forward to my neck healing, building more stamina, and the day I don't have any nerve issues. I think it's very possible and soon!
When someone has Surgery for Chiari there is no guarantee that the symptoms will disappear when nerves have been compressed for so long. We have to be patient and hopeful that in time the nerves will return to normal and we'll find relief. Bob made an analogy that is simple, but so realistic and helps put things into perspective. He said just imagine if you parked your car on a garden hose for five years and then moved the car. The pressure would be off, water may be able to flow through a bit better, but how long would it take to return to the normal shape and function? It may take a long time and it may never be like it was originally. So this helps so much to think about how my nerves are taking time from so many years of compression and to think that in six weeks I've seen so much improvement. How long have my nerves been compressed? Well that's hard to say...from birth? Maybe from my twenties when I first started having bouts of extreme fatigue? Or maybe the last 15 years or so when I've had nerve issues on the left side of my body? Hard to say, so much is still unknown about Chiari 1 Malformation; I do know that things really exploded for me in the past year. The great thing about our bodies is that unlike a garden hose they have the ability to repair and heal damage that has been done.
Sharing in the Children's Ministry
Encouraging the Children |
I shared with them the scripture that has been on my heart and that I've shared with so many during this Thanksgiving time.
How can I (we) thank God enough for you in return for all the joy I (we) have in the presence of our God because of you? 1 Thessalonians 3:9
I wanted the children to hear how much their encouragement meant to me. Also I wanted them to remember that one small card to encourage someone can have such great value to the that person. To never underestimate how much encouragement can help someone get through a challenging time.
PreTeen class |
I decided to show the older children the picture of my incision right after surgery and then show them how it looks now in person so they could see how I've healed. I shared with them one of my favorite scriptures:
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14
It is quite amazing that all of my neck muscles, and skin have been cut and now you can hardly tell it after 6 weeks...just amazing when you think about it!
It is a bit horrifying, but I think there are great lessons to be learned in these real life situations. God is working and can help us to overcome and come through challenging situations with the help and support of others. I also want to show them that we can be grateful and joyful and continue to serve even when facing health challenges.
Showing the PreTeen class my incision
Bob and I leaving after Children's Ministry today |
Saturday, November 17, 2012
So Thankful for The Church
A Big Day!
I was really looking forward to going back to church, seeing everyone, and expressing my gratitude for all of the support we've received over this past month. The church also hadn't met altogether for two weeks because of the storm so I knew there would be so much news and excitement to be together. We went early to help set up with The Children's Ministry, although it was enough for me for the day to just sit and visit with people. After the teacher's service I went ahead to the regular service instead of helping with the children as I usually do. It was so good to be there although very difficult to sit in one position. I was sitting toward the outside so Connie suggested that I turn my chair, which was such a great suggestion. I just turned completely sideways and continued to turn my chair as my neck would get tired in facing one direction for too long. I'm glad I'm not so concerned about how I appear or what people think of me. Of course this wore me out for the day, but it was a great day!
I also have so many other friends, family, and neighbors to thank, but this is my note of thanks when I returned to church on November 11th, one month after surgery. There's so much on my heart to express and words aren't even sufficient to share my gratitude.
Dear brothers and sisters,
Thank you so much for all of the prayers and the many ways you have supported us over the past month since my surgery! Bob and I are so grateful for the many meals, visits, calls, thoughtful gifts, help with Children's Ministry, and all of the many ways that you have prayed and shared your love and concern for us during this time. One thing you may not realize is that I received a box filled with Get Well cards from The Children's Ministry; one from each child...from Babies all the way through Preteens and their teachers. The children's words warmed my heart and brought me so much joy! We are so very grateful for our family here in The Central Jersey Church!
My recovery is going well, although it will take some time to fully recover and know how effective the surgery has been. As I keep saying...."brain surgery is no joke!" and recovery is a bit slower than I would like. Therefore, I would really appreciate your continued prayers for my complete recovery and freedom from symptoms.
We love and appreciate you very much!
Thank you!
Bob & Jami
I was really looking forward to going back to church, seeing everyone, and expressing my gratitude for all of the support we've received over this past month. The church also hadn't met altogether for two weeks because of the storm so I knew there would be so much news and excitement to be together. We went early to help set up with The Children's Ministry, although it was enough for me for the day to just sit and visit with people. After the teacher's service I went ahead to the regular service instead of helping with the children as I usually do. It was so good to be there although very difficult to sit in one position. I was sitting toward the outside so Connie suggested that I turn my chair, which was such a great suggestion. I just turned completely sideways and continued to turn my chair as my neck would get tired in facing one direction for too long. I'm glad I'm not so concerned about how I appear or what people think of me. Of course this wore me out for the day, but it was a great day!
I also have so many other friends, family, and neighbors to thank, but this is my note of thanks when I returned to church on November 11th, one month after surgery. There's so much on my heart to express and words aren't even sufficient to share my gratitude.
Dear brothers and sisters,
Thank you so much for all of the prayers and the many ways you have supported us over the past month since my surgery! Bob and I are so grateful for the many meals, visits, calls, thoughtful gifts, help with Children's Ministry, and all of the many ways that you have prayed and shared your love and concern for us during this time. One thing you may not realize is that I received a box filled with Get Well cards from The Children's Ministry; one from each child...from Babies all the way through Preteens and their teachers. The children's words warmed my heart and brought me so much joy! We are so very grateful for our family here in The Central Jersey Church!
My recovery is going well, although it will take some time to fully recover and know how effective the surgery has been. As I keep saying...."brain surgery is no joke!" and recovery is a bit slower than I would like. Therefore, I would really appreciate your continued prayers for my complete recovery and freedom from symptoms.
We love and appreciate you very much!
Thank you!
Bob & Jami
Milestones
Powers on! We're Going Out
Saturday, November 10th
I'm so sorry for so many posts, just trying to get caught up after nearly two weeks without power...almost there.
October 29th Hurricane Sandy hit our area in New Jersey and it was a long 12 days before we finally had our power restored. Thanks to all the out of state crews from Ameren Illinois that seemed to work tirelessly in our neighborhood. Without power we only were able to get glimpses of what was going on all over New Jersey and New York on my iPad when it was charged or the occasional newspaper. It was difficult to get in and out of our neighborhood with all of the trees and power lines down. There's so much to catch up on from the past two weeks that it's hard to know where to start. Finally it was Friday, we got our power on, there was literally no food in the house, and Bob wanted to go out.I had to encourage him to get home early because by the evening I am beat and ready for bed early. There weren't any restaurants open in our area because of the power shortage so we drove to South Plainfield. It was nice to have a meal out with Bob, but also still so challenging to hold my neck up and ride in the car at that time of day. I have a neck roll pillow that really helps for the car to give me some added support since every bump feels exaggerated by my neck muscle's lack of strength.
These pictures were taken on Saturday, when we were about ready to go visit Bob's parents in North Bergen. I was glad to be going out, but knew as it got later in the day and the possibility of being out a long time and coming in late that I was going to be exhausted....and I was. We ended up visiting and then we needed to stop for groceries on the way home. We pretty much didn't have any food in the house except for canned food. We had to get rid of or throw all our food away because of the power outage. I for one was craving fresh food. The store was a bit of a challenge....deciding what we needed, and then going to get what we needed, to find that they didn't have things that we usually buy. It's strange to go to a store that is usually so stocked up and find that they don't have the same supplies as usual because of the effects of the storm. So it took us longer than It really should have and by this time I became very hot, a bit unsteady, and really needed to sit. I was sitting or leaning on anything I could find, like the bagging area at the check out. By the time we got home it was 9:00 pm and I had a fever. It seems that this is my body's way of reacting when I've overdone it. I was concerned that If I felt like this that I wouldn't be able to get up and go to church in the morning, so I would have to see about that.
Saturday, November 10th
I'm so sorry for so many posts, just trying to get caught up after nearly two weeks without power...almost there.
October 29th Hurricane Sandy hit our area in New Jersey and it was a long 12 days before we finally had our power restored. Thanks to all the out of state crews from Ameren Illinois that seemed to work tirelessly in our neighborhood. Without power we only were able to get glimpses of what was going on all over New Jersey and New York on my iPad when it was charged or the occasional newspaper. It was difficult to get in and out of our neighborhood with all of the trees and power lines down. There's so much to catch up on from the past two weeks that it's hard to know where to start. Finally it was Friday, we got our power on, there was literally no food in the house, and Bob wanted to go out.I had to encourage him to get home early because by the evening I am beat and ready for bed early. There weren't any restaurants open in our area because of the power shortage so we drove to South Plainfield. It was nice to have a meal out with Bob, but also still so challenging to hold my neck up and ride in the car at that time of day. I have a neck roll pillow that really helps for the car to give me some added support since every bump feels exaggerated by my neck muscle's lack of strength.
4 weeks post op |
A front view for once - not too bad considering! |
My hair actually covers the shaved section |
These pictures were taken on Saturday, when we were about ready to go visit Bob's parents in North Bergen. I was glad to be going out, but knew as it got later in the day and the possibility of being out a long time and coming in late that I was going to be exhausted....and I was. We ended up visiting and then we needed to stop for groceries on the way home. We pretty much didn't have any food in the house except for canned food. We had to get rid of or throw all our food away because of the power outage. I for one was craving fresh food. The store was a bit of a challenge....deciding what we needed, and then going to get what we needed, to find that they didn't have things that we usually buy. It's strange to go to a store that is usually so stocked up and find that they don't have the same supplies as usual because of the effects of the storm. So it took us longer than It really should have and by this time I became very hot, a bit unsteady, and really needed to sit. I was sitting or leaning on anything I could find, like the bagging area at the check out. By the time we got home it was 9:00 pm and I had a fever. It seems that this is my body's way of reacting when I've overdone it. I was concerned that If I felt like this that I wouldn't be able to get up and go to church in the morning, so I would have to see about that.
Finally!
My Post-Op Appointment
Tuesday, November 6th
It took quite a bit of calling and calling on Monday to get through to Dr. Tyagi's office and when I finally did they said they could see me on the 13th. I was about to put my foot down, but when I reminded her that I hadn't had my post-op and my surgery was on October 11th she said she'd try to squeeze me in. So she scheduled me for 10am and I expected that it would be a rushed appointment since they seemed to be over booked.
Bob took time off work to take me to the appointment. I seemed to be feeling much better as I tapered off the meds and decided to try not to take the lower dose of Oxycontin at all until I saw the doctor to get her input on what I should do. They took me in pretty quickly and I didn't feel rushed at all. I did start to feel a little dizzy, I think because it was a bit past the time that I would usually take my meds. The nurse got me water, which made me feel a bit better and I did have a slight fever. It was good to talk to Dr. Tyagi and be reassured; she's very laid back. As far as when I got so terribly sick three weeks after surgery, she really didn't have any explanation other than maybe I had overdone it. Having swollen lymph nodes in my neck wasn't concerning to her and she was amazed at how well my incision was healing.
I told Dr. Tyagi that right now I really can't say how effective the surgery has been. I am hopeful and know that it can take many months for the nerves to recover. I also know that there is a chance that they won't recover completely. I don't have the same type of numbness that I was experiencing, but do have some of the same feeling in my face that I did before. As the medication would start to wear off and especially later in the day I would have burning pain all on my left side sometimes worse than before surgery. I can have a terrible burning pain in my thighs and in the left side of the back on my neck, shoulder and arm. I really expected that she would say that she would say that my left side was much more effected and that she had to do so much more during surgery on that side. The right side of my body feels great, all the symptoms I have are on my left side. Even at the incision site, the right side of the incision feels flat and healed and the left side is very sensitive, puffy and swollen. She always says to me that I am a very unusual case with the way that my symptoms present mostly on one side of my body. We asked her if there was evidence in surgery of one side of my cerebellar tonsils being effected more or if she did more work on the left side. She said that it appeared to have the same compression throughout. She explained it like my skull into my spinal column was like a jello mold and that my brain was squished in there and formed like that mold. When she removed the bone it was evident that the cerebellar tonsils were molded in a way that they shouldn't have been.
She said the recovery of gaining strength back in my neck after having the muscles cut will take time of course. Right now it's like taking baby steps, but she says that soon I will see a big difference. It's of course also going to take time to see if my nerves recover from being compressed for so long. She offered to refer me for physical therapy, but we decided that I could see how it goes to work on things on my own. I will go on walks everyday and do exercise to stretch and strengthen my neck. I'll also start going back to Retro Fitness with Bob in the mornings soon and I can at least walk on the treadmill for now especially on cold days. She said I really just need to build up my strength and stamina.
Dr. Tyagi thought it would be fine at this point to discontinue the Oxycontin...hallelujah! That stuff was really making me nervous and now I don't seem to be getting sick as it is wearing off as I did with the higher dose. She did give me a prescription for Tylenol with codeine just in case I need it and we found out that we could go through the walk through to the hospital and that there is a Walgreens pharmacy right there. We were able to quickly fill the prescription and I was asking Bob questions about where they were when I was in surgery, so we walked in to see the room. This is where Bob, Ross, Tommy & Connie Beene, and Larry Craig waited while I was in surgery. I wish I had a photo of them all here. I am so grateful that Bob and Ross were together and that they had the support of good friends who were there with them. It really makes me quite emotional to think about it all. The screen to the right of the fish tank has listed by number all of the surgeries going on. Bob said they were given a card with the number and the screen would give updates about whether I was in surgery or recovery. Dr. Tyagi came right into this room after the surgery was over and explained to them how everything went. Of course I had to ask Bob what she said several times and then when I saw her the next morning I had to ask her to explain it again. I don't know that I will ever have all the details that I'd like to know, so I will have to just be settled with what I do know. I'm just thankful that I'm alive and that I have the hope of my quality of life getting better as I recover.
House Church During the Aftermath of the Storm
So encouraging to see everyone
Sunday, November 4th
We found out on Saturday that North Brunswick school that we meet in for church wasn't going to be able to open for us. Likely they didn't have power just like us. When this type of thing happens we break up into small groups and meet in the members homes. We said that we'd have house church here since we usually do in this type of situation, but we also knew that I wasn't going anywhere even if there was church. I just wasn't ready for going out for that amount of time yet. We contacted others from the church to let them know and Bob also let neighbors that he thought would like to come know. With all the roads that were closed we actually had more people here than we expected, but not too big of a crowd. It was nice to see everyone and worship God together. It was a great time, especially with all the kids in the mix.
Later we had a couple families over to eat a early dinner. Bob barbequed up some chicken that was thawing and our friends Wally and David helped cook and set up. We also had our neighbors who just moved in across the street over as well. I'm not use to having people over and then letting them be the ones to take care of everything while I sit or lay on the couch.
Sunday, November 4th
We found out on Saturday that North Brunswick school that we meet in for church wasn't going to be able to open for us. Likely they didn't have power just like us. When this type of thing happens we break up into small groups and meet in the members homes. We said that we'd have house church here since we usually do in this type of situation, but we also knew that I wasn't going anywhere even if there was church. I just wasn't ready for going out for that amount of time yet. We contacted others from the church to let them know and Bob also let neighbors that he thought would like to come know. With all the roads that were closed we actually had more people here than we expected, but not too big of a crowd. It was nice to see everyone and worship God together. It was a great time, especially with all the kids in the mix.
Later we had a couple families over to eat a early dinner. Bob barbequed up some chicken that was thawing and our friends Wally and David helped cook and set up. We also had our neighbors who just moved in across the street over as well. I'm not use to having people over and then letting them be the ones to take care of everything while I sit or lay on the couch.
Staples Out!
Huge Relief!
Friday, November 2nd
Thursday night I started talking to Bob and trying to figure out how we could go out the next morning to find a place to get my staples out. By this time it was now 15 day that I had them in and they were really bothering me. I felt like if I got them out it would help me to start feeling better. I still was not able to get in touch with Dr. Tyagi or anyone in her office. I called the hospital to see if went down there, if they would remove the staples for me. They gave me a bit of a run around and kept trying to get in touch with my Dr. and telling me that if I went there it was going to be more expensive. At this point I really didn't care if it was more expensive, I was feeling awful, it had been too long, and I didn't see waiting until the following Tuesday when Dr. Tyagi's office might have office hours. I had already tried calling my primary care doctor's office and they were not open because of the power outage. We then heard that another nearby urgent care clinic was open so we decided to try them in the morning.
So, Friday Bob, Manami and I all got ready and set out on our excursion. This was after all of us being in the house since before the storm. Bob had made a couple of short trips out and we knew that it was going to be difficult to get around with all the road blockages. We headed to Mede Merge to see if they would take care of my staples and refill my prescriptions. I really thought that they wouldn't unless they could somehow reach my doctor. I also expected if they were the only doctor's office open in the area that it may be a long wait. What I expected was that we would go there, be turned away, and need to find our was to Robert Wood Johnson Hospital in New Brunswick. When we arrived at Mede Merge it was obvious that they were running on a generator, there were only a few dim lights and all the workers were bundled up to keep warm.
To my surprise they took me right in and the doctor immediately came and took my staples out! As he started and Bob and Manami were on the other side of the table from me, I had to ask Bob to come over to hold his hands and get some support. I had to bury my head into his stomach and squeeze his hands. Each staple was a bit of a painful pinch and since my hair had started to grow back it felt as if the doctor was yanking out some hair as well. We decided to count the staples to make sure that they were all out, which was good because Dr. Pilla said at one point, "last one" and Bob was keeping track and said, "oh no, there's three more". I think maybe my hair was covering up the ones at the very top. It was all over very quickly though and I was so happy to have them removed finally!
I also explained how I was getting so sick when my medication started to wear off. I didn't feel pain in my neck, but was so incredibly sick to my stomach and I wanted to wean off the medication. He gave me a very low dose of Oxycotin so that I could take a couple of days to taper off. I really was quite concerned about getting off of the medication and felt like I would be doing so much better if I wasn't also dealing with all of the side effects. Of course then we needed to find a pharmacy that was open. Thankfully we thought to ask at the desk before we left and they had a list. We had to go to the Boundbrook Walgreens all the way out by Route 287. It was just such a relief that we didn't need to go sit in the emergency room and wait for hours to be seen.
Friday, November 2nd
Thursday night I started talking to Bob and trying to figure out how we could go out the next morning to find a place to get my staples out. By this time it was now 15 day that I had them in and they were really bothering me. I felt like if I got them out it would help me to start feeling better. I still was not able to get in touch with Dr. Tyagi or anyone in her office. I called the hospital to see if went down there, if they would remove the staples for me. They gave me a bit of a run around and kept trying to get in touch with my Dr. and telling me that if I went there it was going to be more expensive. At this point I really didn't care if it was more expensive, I was feeling awful, it had been too long, and I didn't see waiting until the following Tuesday when Dr. Tyagi's office might have office hours. I had already tried calling my primary care doctor's office and they were not open because of the power outage. We then heard that another nearby urgent care clinic was open so we decided to try them in the morning.
So, Friday Bob, Manami and I all got ready and set out on our excursion. This was after all of us being in the house since before the storm. Bob had made a couple of short trips out and we knew that it was going to be difficult to get around with all the road blockages. We headed to Mede Merge to see if they would take care of my staples and refill my prescriptions. I really thought that they wouldn't unless they could somehow reach my doctor. I also expected if they were the only doctor's office open in the area that it may be a long wait. What I expected was that we would go there, be turned away, and need to find our was to Robert Wood Johnson Hospital in New Brunswick. When we arrived at Mede Merge it was obvious that they were running on a generator, there were only a few dim lights and all the workers were bundled up to keep warm.
To my surprise they took me right in and the doctor immediately came and took my staples out! As he started and Bob and Manami were on the other side of the table from me, I had to ask Bob to come over to hold his hands and get some support. I had to bury my head into his stomach and squeeze his hands. Each staple was a bit of a painful pinch and since my hair had started to grow back it felt as if the doctor was yanking out some hair as well. We decided to count the staples to make sure that they were all out, which was good because Dr. Pilla said at one point, "last one" and Bob was keeping track and said, "oh no, there's three more". I think maybe my hair was covering up the ones at the very top. It was all over very quickly though and I was so happy to have them removed finally!
I also explained how I was getting so sick when my medication started to wear off. I didn't feel pain in my neck, but was so incredibly sick to my stomach and I wanted to wean off the medication. He gave me a very low dose of Oxycotin so that I could take a couple of days to taper off. I really was quite concerned about getting off of the medication and felt like I would be doing so much better if I wasn't also dealing with all of the side effects. Of course then we needed to find a pharmacy that was open. Thankfully we thought to ask at the desk before we left and they had a list. We had to go to the Boundbrook Walgreens all the way out by Route 287. It was just such a relief that we didn't need to go sit in the emergency room and wait for hours to be seen.
That's not a Superhero, it's Dr. Pilla during the power outage |
A bit painful...needed Bob's support |
19 staples removed! |
looks quite sensitive - ouch it was! |
Friday, November 16, 2012
Big Walk After the Storm
Amid Hurricane Sandy's destruction
Wednesday, October 31st
Things seemed to calm down a bit outside and we were very curious to see what was going on outside in the neighborhood. There were lines of cars coming onto our street, so it was obvious that the county road West End Avenue, one block over, was blocked by fallen trees. Our little neighborhood off of West end is just dead end streets with no outlet. We have a brook on either side and West End Avenue is the only through street unless go south or cross West End and weave through the side streets. We were pretty much blocked in by fallen trees, power poles, and lines. Bob, Manami, and I set out for a short walk that turned into two hours. It felt good to be out, but I did need to hold onto Bob and Manami's arms and by the end of the walk I was quite exhausted. Although I was tired, it seemed to be a big step for me and I thought I was doing very well. We came home and decided it was time to throw out everything in our refrigerator. It didn't look like we were getting power anytime soon. Then of course it was time for a big rest for me.
The power of the winds that brought these gigantic trees down is amazing. The pictures only give a small taste of what has happened here. The devastation in New York and down the Jersey shore is unbelievable. The weather began to get cold and we were so grateful to have our woodburning stove that keeps our entire house at about 75 degrees.
Wednesday, October 31st
Things seemed to calm down a bit outside and we were very curious to see what was going on outside in the neighborhood. There were lines of cars coming onto our street, so it was obvious that the county road West End Avenue, one block over, was blocked by fallen trees. Our little neighborhood off of West end is just dead end streets with no outlet. We have a brook on either side and West End Avenue is the only through street unless go south or cross West End and weave through the side streets. We were pretty much blocked in by fallen trees, power poles, and lines. Bob, Manami, and I set out for a short walk that turned into two hours. It felt good to be out, but I did need to hold onto Bob and Manami's arms and by the end of the walk I was quite exhausted. Although I was tired, it seemed to be a big step for me and I thought I was doing very well. We came home and decided it was time to throw out everything in our refrigerator. It didn't look like we were getting power anytime soon. Then of course it was time for a big rest for me.
This is about what all the streets look like |
West End Avenue |
West End Avenue |
Our elderly neighbor cutting his tree - power lines ripped off the house |
Another tree on West End |
Those are some big roots! |
Bob & Manami |
tree broke through a newly remodeled roof, porch & portico |
This tree went through the owner's roof |
Rockview Ave |
There were so many huge trees down on this road |
This tree hit their neighbor's house |
Storm Damage means No Post-op Appointment
It's only superficial; a minor inconvenience
Tuesday, October 30th
The day after Hurricane Sandy this is what we woke up to. The siding starting flapping around and making a tremendous noise in the midst of the storm the night before. We were on the couch watching a movie on my iPad since the power went out early in the evening. We couldn't believe the sound the wind made, something like a roaring train.
This got me out the door to take a picture and visit with all the neighbors that were gathering on the corner. Many of my neighbors had no idea that I had surgery and they were quite surprised. I talked for about fifteen minutes before I had to go in to take a rest.
This is the view out our bedroom window across the street. The power pole snapped along with many others in the neighborhood and several transformers exploded as well. Our power was out for twelve days. Since we didn't have power it was a little hard to understand why PSE&G didn't come right away to make repairs. Little did we know that while our neighborhood had a great amount of damage there are many other areas with much more damage.
With all the big trees in our yard we were blessed to only have large branches down, but no trees. Our neighbor right next to us has a tree that could crush our house if it fell in our direction.
This was the day that I was suppose to go for my post-op appointment. I think I received a cancellation call about the appointment on Sunday night. We really didn't believe that the storm would be so bad. I did know that if there was flooding that I could have difficulty geting to New Brunswick for my appointment. I really should have scheduled my appointment for the previous week, but Dr. Tyagi only has office hours on Tuesday and while last week would have been a little early to get my staples out...this was a bit long to have them in. With the storm over I was trying to figure out how I could get the staples removed. They were becoming very irritating. Calls wouldn't go through to the doctor's office and I was just thinking that I'd have to wait for the following Tuesday to see Dr. Tyagi. Repeated calls through the week got no results.
Tuesday, October 30th
Siding ripped off the side of our house |
The day after Hurricane Sandy this is what we woke up to. The siding starting flapping around and making a tremendous noise in the midst of the storm the night before. We were on the couch watching a movie on my iPad since the power went out early in the evening. We couldn't believe the sound the wind made, something like a roaring train.
This got me out the door to take a picture and visit with all the neighbors that were gathering on the corner. Many of my neighbors had no idea that I had surgery and they were quite surprised. I talked for about fifteen minutes before I had to go in to take a rest.
to my left - the tree that broke off our power lines |
This is the view out our bedroom window across the street. The power pole snapped along with many others in the neighborhood and several transformers exploded as well. Our power was out for twelve days. Since we didn't have power it was a little hard to understand why PSE&G didn't come right away to make repairs. Little did we know that while our neighborhood had a great amount of damage there are many other areas with much more damage.
To my right another huge tree down |
With all the big trees in our yard we were blessed to only have large branches down, but no trees. Our neighbor right next to us has a tree that could crush our house if it fell in our direction.
This was the day that I was suppose to go for my post-op appointment. I think I received a cancellation call about the appointment on Sunday night. We really didn't believe that the storm would be so bad. I did know that if there was flooding that I could have difficulty geting to New Brunswick for my appointment. I really should have scheduled my appointment for the previous week, but Dr. Tyagi only has office hours on Tuesday and while last week would have been a little early to get my staples out...this was a bit long to have them in. With the storm over I was trying to figure out how I could get the staples removed. They were becoming very irritating. Calls wouldn't go through to the doctor's office and I was just thinking that I'd have to wait for the following Tuesday to see Dr. Tyagi. Repeated calls through the week got no results.
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