Back to work

Sorry I haven't been back for a while. This is the start of my 3rd week back to work and it is going great! I am feeling REALLY good. I still have some issues, but for the most part feel better more then I feel bad. The major issues I had prior to diagnosis are now gone, thank god! I just deal with some lingering neurological issues that will hopefully repair themselves as time goes on. It is almost 5 months since my surgery so I have another 7 months to see what corrects itself. They told me to give it a year. All in all I am blessed to have been "fixed" and on to a normal life. (whatever that is;))

I hope you have all enjoyed your summer. The fall is quickly approaching and I can't wait!!!

God bless

Amy

~~~~Still here ~~~~~

Plans have changed... I have not returned to work at this point and am working on my healing still. There have been continued tests and evaluations that are hopefully going to work out some lingering issues. I recently had a CT of my brain and eyes after experiencing eye pain in the back of my left eye. The pain was waking up me out of a sleep, so I felt it needed looked into. Good news is the Ct scans came back clear, bad news is my neurologist feels it is all neurological. It seems that the neurological part of this nightmare is what is causing me the problems. I have started a new medication for the neuro issues and hopefully it will calm some things down. Again, time will tell. I have only been taking this new medication for 2 days, so I am keeping my fingers crossed.

I didn't think I would continue the blog but I kind of feel that this portion of my experience is where I may be able to help others the most. The recovery has been difficult for me and my personality type. I had a major surgery and want to feel better NOW! In due time, but until then I try to stay focused in a positive light and stay on the path God leads me down. Day to day is so different. I feel as if there is something new all the time. The last 2 weeks my eye pain has started, my wrists, knees and ankles hurt so bad it is difficult to get to sleep, my neck muscles have been spasming to where it feels like someone is squeezing my throat/neck, so as you can see this can be very annoying not knowing from day to day what will appear. When I feel good I make the best of it. I actually am really feeling like a geriatric patient with all my aches and pains. I am one of the youngest people I have seen at PT, so I feel at home with the hip replacements. :)

I am really trying to deal with the pain without meds if at all possible. I am taking this new one but haven't taken a pain pill since week 2 after surgery, I am on week 13. I want to learn my new body and see what I can and can't handle, then look for other resources if I need it later in the year. I have started some natural supplements to see if it helps in any way. Continued Reike, Pt and light therapy as well. Meditation and general mental health are a big part of my healing plan and focus.

I hope that anyone out there dealing with the same issues and diagnosis can hear me say that it is a long process. Stay positive and know that time will tell. I SOOO badly want to get back to my regular life but that isn't now. I look forward to being sleepy at night from a hard day at work, evening of fun with the family and then falling asleep and actually having a good nights sleep.

It's Friday night and I'm off to watch a movie at home with my hubby. I hope you all enjoy your weekend and I will be back soon.
Faith, Strength & Love

Moving on...

I want to start this post by saying thank you to all of you who have supported me during this journey. What a ride! This blog has been a great way to communicate with everyone but I think it is time to stop. I am moving on... This will all be a part of my past now and I look forward to what the future holds. I am getting back to work in the future and really looking forward to it. I will continue to heal and hopefully by this time next year I will be feeling close to 100%. The Dr keeps saying it will be a year before I feel the results of the surgery. I pray that this surgery was successful and not something that needs to be done again in the future.

This whole experience has taught me sooooo much. I have a different outlook on life and how I choose to live it. I am thankful, blessed and thank God daily! Noone knows what life has in store for our future so let's make every minute count. God bless each and everyone one of you. Don't forget to stop and enjoy your "GOON"!

From me and my family, we truly thank you for your prayers and support!
God Bless
Amy

PT, Reike & Light therapy

I started physical therapy and think it is going to help. I do feel that it is helping to loosen my neck muscles and get things heading back in the right direction. I will go 3 times a week for the next 3 weeks. I plan to return to work at the end of the month, so I am hopeful that this helps. I look forward to getting back to my normal life! In addition to PT I have started light therapy to help generate new/healthy cells as well as Reike(alternative healing method). The attached link is a great description of Reike. http://www.reiki.org/FAQ/WhatIsReiki.html
(Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy. )

The therapist asked if I would allow them to do a case study on me and I gladly accepted. The more that people can understand about my condition the better.

I hope you are all enjoying your summer.

Good report

Dr. O'Boynick gave me a good report today at my appt. I am starting physical therapy 3 times a week and TOTALLY looking forward to this. We went over my recent MRI report that shows great improvement of my brain placement/pressure.

I was speaking with Maria, his assistant to schedule my next appt. prior to leaving. Maria shared with me how hard this week has been with so many brain tumors, most of them being our age. It really made me realize that this diagnosis is such a blessing in disguise. A few lifestyle changes (pain management, exercise, stress level...) and I will hopefully be able to manage anything that causes me pain. I pray for those strangers who sat in the same chair I did after undergoing brain surgery for a cancerous tumor. There are blessings in every situation and I am seeing mine.

Have a wonderful Holiday weekend friends!!!

Enjoying my "Goon"

Sorry for the delay writing. I had a bad 3 days in a row followed by 4 REALLY good days followed by 1 so so day followed by 2 good days. I have started to see a pattern that has brought me great comfort. My bad days are always at the beginning of the week after over doing it on the weekends. I want to enjoy my weekends with the kids but need to take it easy. REST is the key element here. It is a great sign that I have good days, things are working in the right direction. I went to my Dr appt. on Tuesday but after getting there found out it was on Mon. so we rescheduled for Friday. I did speak with Dr. Oro's assistant at the Chiari institute in Colorado. She was SOOOO helpful and informative. I told her what I have been experiencing and she confirmed that it is all normal. I won't feel "corrected" for 6 months to a year. The things that I have been feeling are normal and take time. She explained some details about nerves repairing and muscle restriction that put me at ease. I also spoke to her about my short term memory loss and she confirmed that it is VERY normal after this type of surgery. She suggested I get some brain teaser books to get things stimulated and going again. I am confidant I am on the road to recovery!

I have learned so much during this journey about myself, life and living. We all live such a fast paced life that we never stop to "Enjoy a goon". Ok so here's the story with the Goon. I was hustling around town one day with multiple appointments and conference calls scheduled. I decided I wanted to go to Boling's for lunch because I LOVE their Crab rangoon aka "goon". So I'm on a conference call and eating as if someone is going to snatch my plate out from under my nose. (on mute of course and I was paying attention :)) I happen to notice a lady sitting across from me who picks up her yummy goon, breaks it open and smells it then takes a small taste and gets a huge smile on her face. I thought to myself "Wow, she really is stopping to enjoy her goon." I looked down and mine was gone and I hadn't even really noticed or enjoyed eating it. I sat there thinking about all the things I rush through and don't stop to really enjoy. So I now have a personal mission to stop and enjoy my goon in the future. It seems like we are always doing and going and not enjoying the things that make the world go round. Being at home for this amount of time has been very difficult for me but I have been able to enjoy things that I had taken for granted in the past. Laying out on the hammock is so relaxing and peaceful, why haven't I done that more often! Taking this time to read some books I have wanted to read or watch movies I have wanted to watch has been a great pleasure. Life can change in the blink of an eye and I want to know that I have enjoyed everything I can while I can. I wish you all a life filled full of "enjoying your goon"!!!

Sick of the roller coaster

I told you all that my mri shows good results however the past few days have proven differently. I have had a really bad few days. My symptoms are coming on very strong and often. I am hoping that my body is just telling me to slow down and continue resting to ensure healing. My next Dr. appt. is next Tuesday so we will see what he has to say.

I have communicated with some others on line who have been through the same surgery and have got mixed responses. Some say it is not good that the symptoms are back and others have told me that they slowly fade away over the year after surgery. The frustration level is off the charts at this point. This has by far been the most challenging time of my life. I still have NO energy and get tired so easily. I have to challenge myself to actually get things done. I have had clothes that I have been trying to hang up for 2 weeks and just can't get the energy to do it all. Talk about frustrating!!! I lay low all day so I can hang with my girls and Pat when they get home.

Keep the prayers coming that this is just a phase of the healing process.

Good news!

I finally got my mri results today, and it is great news. There are NO signs of syrinx (fluid tumor) on my spine and my brain has moved back up. It used to hang too low and now it is just where it needs to be!!! YAH YAH!!! Now that we know everything is doing what it should all I have to do is heal! What a great mothers day present. The symptoms that have returned are getting less and less as time goes by. This is all a blessing and answered prayers.



I hope that all you fabulous mommies out there enjoy your special weekend.

Back to the tube

I just wanted to give a quick update to you all. Over the last week and a half I have had a lot of symptoms return. This has given me obvious concern and worry. I had a Dr. appt yesterday and he said I really need to give it a few months, it hasn't even been 1 month yet. I will go for a follow up MRI this Thursday to confirm that the surgery did make the room for my brain as it was supposed to. They will also be confirming that I do not have a syrinx, which is a fluid filled tumor on the spine that can cause some of the symptoms I have had return. He feels confidant that I don't but just want to rule it out.

I am glad the sun is shinning today, the rain was getting old. I am really trying to keep myself in a "good" place and not let my fears get the best of me. I just pray that time will bring me relief. PATIENCE! Those of you that know me well are probably laughing now knowing that I have NO Patience.

Hope you are all well! My little Lexi turned 3 this weekend! We had a family party at my in-laws, it was so nice to feel normal for the day and be with family.

Not a lot going on :)

The last few days have been pretty good. I truly am feeling better everyday. I am just a little nervous and praying lots about some returning symptoms. I have a couple of things that "are back" but I am not freaking out about it yet. The Dr told me it took a while for these symptoms to occur so it could take a while for them to leave. It is just strange that the first week I felt none of them. Maybe it was just the pain in my head was more severe so I didn't notice, who knows. I just pray this is temporary and soon on it's way out of my life.



Either way things are good. I had a dear friend come to the house today to cut my hair so I look a little less like a skater from my 8th grade class. Thanks Jenn M!!!!! Now it looks much better and isn't as obvious. As long as there isn't a big gut of wind my comb over effect will go unnoticed.



Hoping I can sit outside this weekend and enjoy the weather while the girls play. Just hard to remember that just because I feel better doesn't mean I am healed. The healing process takes so long because of the internal healing necessary. My neck muscles were all cut in order to get to the portion of my skull they needed to get to. I am getting more and more range of motion in my neck everyday and the swelling is much less.



I'm pretty boring for the most part. Enjoying all the gorgeous flowers that have bent sent, THANK YOU ALL!!! I am so grateful for the people in my life. I am blessed to work for an amazing company (Kohler) who has been very supportive during this difficult time. They also sent me an amazing flower arrangement, Thanks Indy branch! The support we have received is indescribable. God has truly blessed my life with wonderful people, not a day goes by that
I don't appreciate that. My family has been there every step as well. My mom "babysits" me during the day everyday with Art stopping in to visit us and bring us lunch sometimes! My in-laws come early in the morning to help Pat get the girls ready and everyone out the door. And then there is Pat! He has been everything for me and the girls and never has a complaint. I don't know what this experience would have been like without these particular people as a part of it.

Have a great weekend!
Amy

Stitches out

11th day and stitches are out! I have been feeling a little better everyday, but slow paced. I actually watched tv today for the first time since I have been home. Sitting up is not comfortable, well laying down isn't either but it is more do-able.


Since returning home I have realized I have super sonic senses! My hearing is so sensitive I have to walk around my house with Kleenex stuffed in my ears, that is when I am downstairs. The girls think this is pretty funny looking. The TV and computer also make my eyes hurt, so I don't do either very often. Food doesn't taste good, well egg drop soup has been the only oldie but goodie. This reminds, I need to tell you guys about finding my "goon" I will fill you in on that later. This will all even out over time, but really weird for now.

The Dr. said I am healing really well and everything I have experienced so far is normal. After my body evens out and replenishes the spinal fluid lost during surgery things should start to feel normal again. Knock on wood I haven't had any of my previous symptoms sense my surgery.

I am able to spend more and more time with the girls each night. Lexi and I laid in bed and held hands watching a movie and it was WONDERFUL!!!! Lani just got in my lap tonight for the first time. I hope to have dinner with them tonight after they go play for a while. Although they are 1 & 2 yrs old they totally get it. Lexi always asks if my boo boo feels better and Lani looks at the back of my head to see if there is still something there.

It was nice to feel up to visiting with a friend for a bit today. Tracy said said she felt like she was at the spa when she walked in my room. Lights out, nice breeze, meditation music (thanks Jamie) and of course the Sage and Cirtus candle burning (thanks Jenn). Minus the facial, massage, cut and color it was an Aveda experiance. I know I keep saying it but I look forward to everyday and seeing what feels better!!!

Breathe by Breathe, Day by Day

Everyday will get better. I keep reminding myself of that every minute of the day. I had no idea what to expect but WOW, this is more then I could have even imagined. Breath through it and know that it will only get better from here. Still can't believe that I have had all this happen, very surreal feeling.

I sleep alot, which is good for my healing process. I am just having some trouble figuring out what drugs work the best. The really good ones I can't take at home without medical supervision because they can cause neurological changes. When I was in ICU for a few days they check my nueros every hour confirming I wasn't having a reaction from the surgery or drugs. Although I always passed I still can't take them a home. So I am trying to figure out what works best and get into a pattern. In due time.

Well the pic is attached, please don't throw up! My brother mentioned it was about 6 inches, I think it is more like 10. That is the least of my worries, but was shocked when I saw the pic. I will have to figure out what to do with this hair now. I was planning to cut it prior to surgery but didn't get it done. I still have bandages covering everything, this was taken while they were changing them. I will get my stitches out on Monday. Well off to lala land.

Thank you all so much for your kinds words, thoughts and prayers. I couldn't have made it this far without each and everyone of you. Loves to you all!!!!

I also had to show you that I still threw some bling in the mix at the hospital.

Settled in at Home

I wanted to let everyone know that I am home!!! I don't feel so hot as you can imagine, so I will try to write more later. If your stomach can take it I will also show you a picture of my incision. Sorry to be so short, but I am back to bed. Thanks for everything. So glad to be home, just have to get the pain management figured out. Chat soon!
Amy

Post-surgery Update: Day 3

Today is Amy's third day in the hospital: She currently remains in the ICU. She is doing fine, but has had a couple of difficult days since the surgery. She has had extreme pain and some high blood pressure issues. Both which are normal. Yesterday was Amy's worst day thus far: She had an allergic reaction to a medication that they had given her which made her already severe headaches worse. Friday and Saturday (on the scale of 1 - 10) her pain levels were alternating between 7 & 10, but thankfully today her pain has mostly subsided and she said it is as low as a 3. Besides feeling much much better and more normal, this morning she was able to walk around the ICU unit and sit up in a chair for an hour and a half. The doctors had been telling her the first 2 days were going to be the most difficult in regards to pain management, but right on schedule, the pain has seemed to diminished greatly.

Hopefully soon she will be moved out of the ICU and into a regular room and she will hopefully be going home in a few days. Once again the family wishes to thank everyone for all of their generosity, prayers, and healing energy, but we would again like to request to please refrain from visitations at this time as Amy is not quite up for visitors.
Love,
Shawn (her brother)

Surgery Update: Status 1

Greetings:
Good News! Amy's family has just met with the surgeon to inform us that the surgery went fine. She went in around 7:30am (K.C. time) and was out by 9am-- quicker than expected. The surgeon, Dr. O'boynick, said that-- per the typical procedure for this condition-- a small part of the base of her skull was shaved away as well as a portion of her C1 vertebrae. A membrane made from cow cells is then put over this area as a kind of patch. This is all done to allow the brain tonsils which are currently getting crammed into her vertebrae enough room to not interfere with her body's neurological functioning. The Dr. said they looked behind these tonsils to make sure that her spinal fluids were flowing correctly and they were. (One symptom of the Chiari malfunction can be blockage of the spinal flow which, thankfully, Amy does not have.) She has approximately a 6" incision at the base of her skull and top of her neck indoctrinating her in the world of "Zipperheads"! lol

Currently she is in the intensive care unit and is doing fine. She will be in the ICU for a day or two to monitor her.

The family and hospital staff is asking visitors to please respect the Dr.'s wishes and give Amy the rest and solitude that she needs. Once Amy is home she may be up for visitors, but right now she needs to focus her energy on getting healthy. The surgeon mentioned that she may be able to come home as early next week.

Thank you so much for all of your prayers, energy, and well-wishes.
Love,
Shawn (her brother) & Pat (her husband)

Tomorrow, the beginning of a NEW me

Tomorrow is the beginning of a new me! I have been in pain for so long I truly look forward to relief that is in my future. The surgery being performed is to relieve the pressure on my brain by removing a portion of my skull and minimizing my C1 and possibly C2 vertebrae. Where the skull is removed a membrane patch will be attached for protection. There will be physical therapy during my recovery in order to get the neck muscles back to full working motion. This is going to be a very long recovery process and REST is very important. I look forward to visitors after getting home and settled. I will let you all know when I am "visitor" ready. Thank you for your understanding.

I must admit that I am very anxious, but I want to get this all past me. I received a phone call from Adam Hamilton, the pastor of my church and it was very comforting. I shared my fears with him and he helped put it all into perspective. I feel so blessed to have had the opportunity to share my thoughts with him and pray with him.

I have to say THANK YOU one more time for all that everyone is doing for my family. God is good and has blessed me with so many fabulous friends and family. I know my girls are in good hands and will have so much fun with their aunties while I am in the hospital!!!

Love to you all!

Amy/Shelly

Reality check

It has been a hard couple of days, I think this bad dream is now unfortunately a reality. I had my pre-op at the hospital on Friday at Shawnee Mission. Everyone I met was very nice and informative, but it was still hard. I sat there with Pat by my side just crying in shock of what was happening. That day would have been difficult even if this wasn't going on since it was 4 years ago to the day that I lost my Dad. I do feel comfort knowing he will protect and guide me through this journey.

God truly blessed me with a very supportive husband, family and group of friends. Words can not describe how much I appreciate all that everyone has done for my family. Please know that not one call, message, meal or card goes unappreciated.

I have met some great people on-line who have Chiari and have had the same surgery I am having. The information they have provided has been a great comfort.

Off to get Lexi to bed for the night, chat later.

The unknown will get you everytime!

Let's just say this has been a crazy experience for me and my family. I am blessed to have an answer to the symptoms I have been having and excited to have some relief. There have been many questions as to what my symptoms have been. I will start at the beginning and go from there.

I remember rocking DeLani in her glider and suddenly feeling as if I had electricity running up the entire side of my body. (19months ago) It was so intense that I actually looked at the closest outlet to me to see if something was shooting out of it.(OK I know that sounds weird, but it was that strong) By the way I know a lot of this is going to sound weird but after 19 months of it I was searching for anything. The electricity stopped after a few minutes and I went on with my evening. I wrote it off to my body "getting back to normal" after just having my 2nd c-section in 2 years. (Yes, I pulled a Brittany Spears and had them 15 months apart) I then started having headaches that were so bad I was having trouble driving. My primary ordered a CT scan of my brain that was normal. She sent me on my way telling me it was stress. The base of my skull and top of my neck hurt so bad on a daily basis that all I wanted to do was lay down to relieve the pain. I didn't care if I was in Price chopper, I wanted to lay down and lay down now. I didn't ever lay down in Price Chopper by the way, but the freezer section is where I would have if I did.

Poor Pat was so sick of rubbing my shoulders on a daily basis I felt bad asking anymore, but he always did it. Then the pain started traveling through my shoulder and into my left arm, tingling, numb, and painful. I am left handed so I write, carry my purse, work bag and kids all on my left side. I saw the Chiro, acupuncture and massages and tried to change my habits of using this arm so much.

About 3 months later the Dr looked into possibility of stroke, that wasn't scary or anything being in the office doing the tests to see if there were signs of stroke or not. (these tests did come in handy later) They then ordered a treadmill test to rule out any heart conditions causing the pain. From here on things progressed rapidly, I was having abdominal pain, chest pain, muscle twitches all over my body,and everything was on the left sideand major fatigue. Again more tests were run and stress was the answer I got every time. The left side of my neck started feeling very strained and it was beginning to be difficult to swallow and catch my breath at times. I started getting frequent dizzy spells. I also have been dealing with some kind of barometric pressure in my head when I leave one climate to another. I went to an ear, nose and throat Dr about this and was told "you are a medical mystery", seriously he said that to me. My left eyeball (not eye lid) started twitching or spasming. Others couldn't really see it so don't picture me walking around looking like a googly eyed freak but I could feel it and it was painful after a while. I started having shooting pains in my face again on the left side. Went back to Dr, and again the stroke tests... Sent me home saying I needed more sleep!

The final straw was when my leg stopped working twice. I now know this is called "drop attacks". My leg just went dead, not asleep with pins and needles but just dead. On one occasion my girlfriend Laurie had to help me out of our favorite Taco via to my car with the dangling leg. I knew THIS IS NOT GOOD. This is when the MRI was finally ordered after I basically said I wanted it done. All of the symptoms on a daily basis on top of working full-time and handling my babies were getting to be to much for me to take.

Now let's add the mental part of it. After Dr visit after visit of hearing that it is stress and you need anti-depressants I started to think I was loony. You know your body better then anyone and if you feel "off" you must stay on top of it. I started logging what I was feeling because the symptoms come and go and aren't all there everyday. You must be your own advocate. I suggest keeping your personal life out of Dr. visits. Let me say that I really like my primary Dr, so I am not "blaming her" just seems that young people are often over looked with chronic pain. When she asked if I had a lot of stress at the time I was truthful and told her... I just started a new job, my husband started his own business, we have 2 babies under 2 and we just built a new house... Who doesn't have stress, but I feel that from that point on it was easier to blame things on stress. I wonder if I wouldn't have shared anything with her would I have had an earlier diagnosis? Six of one half dozen of another, doesn't matter now.

If I can share anything with anyone it is to stay on top of your health care providers if you aren't feeling right. You know your body better then anyone. Now this doesn't mean google every ache and pain or you will go nuts with the things that pop up. A pain in your little toe could be a symptom of some rare cancer, don't go there. The hardest part of all this was trying to stop my mind from running. When I lay down at night is when my "brain pain" is the worst. I would lay there at night praying that I wasn't going to have an aneurysm or stroke that night. I even did the "stroke tests" to myself to make sure I still passed them. It was so scary feeling these things happening in my body with no answers. All I knew is I had to figure it out to be healthy for my family. Now that I have a diagnosis and treatment plan and am working on letting go of those unknown fears I had developed over this period of time. I am just glad I stayed on top of things because my condition can cause paralysis over time if untreated. I am fortunate to have only had mine last this long, I have read about people having the symptoms for 15 years! (Again watch out how much you read on the Internet, can be dangerous). So there are my last 19 months in a nut shell. It has been hard but I kept going for my girls. The last couple months have been the hardest and at times I told my mom I wasn't sure I could live like this. Chronic pain of any kind is not fun but it adds to the stress of it when you don't know where it is coming from or why. Still thanking God for an answer and excited for relief.

The diagnosis

I wanted to start this blog to inform everyone of what is happening in my life. I have not been feeling well for along time, really since my youngest was born 19 months ago. I have been to the Dr so many times and had a number of tests run with the end result being STRESS. It has been a very stressful year but this was more. I KNEW that what I was feeling was more then stress. After some really scary neurological issues they thought I may have MS. I had an MRI that showed NO signs of MS, however did show Chiari Type 1 Malformation. The medical description of the disorder is on the page, but let me break it down in laymen terms. My brain is too big for my head! I am so damn smart. hehehe The base of my brain is longer then yours and hangs so low that it is crowding with my spinal cord in the base of my skull. Average Joe's brain stem is 0-4mm, mine is 9mm. This is causing my signals to get lost in translation due to the crowding. I am relieved to have an answer however VERY scared of my pending brain surgery. I can't believe I just typed those words, still feels like I am dreaming or speaking of someone else's situation. I DO NOT have cancer, I repeat... I DO NOT have cancer, this is a blessing from God. I however do have a totally rare brain disorder, that is non-curable. The good part is the surgery has 80% success rate to rid me of all pain and symptoms. At this point I will take any relief after the pain and suffering during the last year of my life. My surgery is scheduled for Friday, April 3rd at 7:30am. I will go in for my pre-op work later this week. Thank you for all the prayers, keep them coming. Looks like I will be in the hospital for 3-5 days with a long recovery of 2-3 months at home. It will be a long road, but can't wait for a fun PAIN free summer with the girls.