My story........1 year later :)

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My story........1 year later :)

Postby Amy Joe » Sat Oct 18, 2008 10:03 am

What a journey getting to this point. I am now 11 days post op. Right from when I opened my eyes in recovery I knew I was going to be OK. The pressure was gone from my eye and ear.

Every day I think, remember, see, smell, taste, touche and feel things differently. It is like I am reborn or just alive. What so many take for granted.....laughing without nearly passing out, being able to have a 3 way conversation and not have to say WHAT, slow down!

I am following what my NS has told me to the T. I have invested so many hours or research, appointments and testing. If my healing process is 6,8 or 24 weeks, that' OK with me. Just so long as I am moving forward.

Very sad that over these couple years all my records stated "Borderline Chiari Malformation". My operation note reads "Chiari 1 malformation". Somewhere along the line I lost the Borderline. Oh for all of us I really hated that word. Even though I had surgery, still gathering ALL my records. This should never end!

Last night was my first good night sleep in nearly 3 years. I went to bed at 10pm and sleep the whole night till 7am. DH told me wow did you move around a lot, stole all the blankets, ooppps, so sorry hunny! I am back! Today was my first real shower since surgery, ended cold because I just did not want to get out, felt so good. Not being dizzy or unsteady on my feet.

Last night I did something else new... walked barefoot! The balls of my heel were OK with this. I love being barefoot! All these simple things make the little bit of pain I have in my incision OK.

So for now I look at this as my current full time job. My pay is reclaiming some of my life. I have been taking everyday in shifts......sounds weird I know! I have things I can do in the AM (7-2) then a little rest for an hour or so, then move on to Afternoon, then a long flat walk, help plan dinner. Then DH comes home and we visit, watch some TV, this is when we may have company over. I think if I looked at it like...........oh I have nothing to do,or what should I do...I may fall off the wagon of recovery!

For anyone planning this surgery, I would try and plan as much in advance as possible. Knowing that you will be laid up for long period of time. Don't fret the small stuff, dished in the sink, bed unmade, dusting to be done. Do Not Do These Things! In your planning you should have your support staff ready with everyone having their part to do. Pre Surgery is the most important time for communication.... Also you should have 1 person for the first 10-12 days administering your medication. You get sent home with so many different ones, keep a time log when you take anything!

I found when trying the ice that frozen veggies to uncomfortable, same as gel packs. What I have been using is wash clothes soaking wet, folded and put into double zip lock sandwich baggies. I keep a couple in the Fridge in the crisper. These stay really cold and mold very nicely to either side or down the middle. They sit really well and nothing sticking at me.

All and all I am very happy I was able to get my surgery done. My quality of life has greatly improved. It really is not as bad as I thought it was going to be. I had envisioned Brain Pain! Oh which there is none! Surgical pain is normal and this will go away in time. Most importantly before anyone has this surgery done..........excepting that it is NOT a CURE! It is part of TREATMENT. Not a fix all!

I will be back to further update my recovery as I have many more weeks.

Amy Joe
Last edited by Amy Joe on Fri Oct 09, 2009 5:43 am, edited 1 time in total.
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Location: Fitchburg, Ma

Re: My story

Postby *Hope* » Mon Oct 20, 2008 6:25 pm

Hey Amy Joe! I know we've all posted to you in the other forums, but I wanted to say that I think it's so exciting that you have a story for this board. You've come a long way! :) Congrats and I hope it only continues to get better from here.
CM1
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Re: My story

Postby Amy Joe » Fri Oct 09, 2009 5:42 am

Ya baby, 1 year! Still learning, still healing but I am feeling great.

What helps is support, faith and a positive attitude. I have gotten so much done this summer. Painted my bathroom, living room, hallway up and down! Small rooms!!:). Put in my flower garden out front with the help of all my kids. Planted 5 small Lilac trees and a bunch of lilies out back.

I have re-connected with so many family memebers. I love this!

Figured out my immune system problems: D and B12 deficent....then Celiac. This is getting better slowly with diet, supplemnents and walking.

I have learned and excepted the things I can do and can not do. This really was a biggy for me. In a better place now from excepting.

I can still walk barefoot!!

Something I found out and struggled with was medication. I went all cold turkey, thinking Oh big tough me!! NOT. That was stupid because my quality went down hill in a manner of months. NOW I am back on a couple things and realize that I need the help. So doesn't my NL cause he wants to see me every 4 months, just to make sure I am NOT over doing it.

I am blessed! I am happy to share my first year with you all. I get concerned and discouraged when I read.......impatience! Please this condition did NOT happen over night, surgery is NOT a cure, you will not be out jumping on a trampiline in 6 weeks nor should you be driving a caravan of kids to a soccor game. I can say this because this is MY post ans MY opinions. ALL my Dr's agree that success is 40% quality of NS and 60% from Pt.....I so believe this.

I so can not wait to update again next year! Perhaps by then I can wear my Raulph Lauren 5' slide in shoes.....I have had then neatly packed away! Love those shoes.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Amy Joe
 
Posts: 2919
Joined: Tue Jan 01, 2008 10:52 am
Location: Fitchburg, Ma

Re: My story........1 year later :)

Postby Janice » Sat Oct 10, 2009 10:13 pm

Hi Amy Joe,

I am thrilled that you're able to post a success story!!! It's extremely important for new comers to read knowledge and experience from those who have gone through surgery. They're able to follow along your recovery road, read about some of your tried and failed experiences, understand the hard work involved in protecting their investment, and know that there is a chance for a significant quality of life, afterward. There are times when surgery can/does help.

Thank you for sharing your experiences w/all of us.

Take care, I'm looking forward to hearing about you wearing those Ralph Lauren 5' slide in shoes!!! (((((Prayers, Love & Hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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