I have started the blog again by request so that there is an area to post comments and/or questions, support one another and to talk to one another without the hasle of sending a mass bulletin through MYSPACE ( as most of us use) All I ask, is that you are all respectful of one another while posting and avoid hurting ones feelings even if you think your idea, answer or past experience may be more helpful than another individuals! Have fun with this and lets be here for each other!
Love, Devin
26 comments:
Im glad that it is back! Great price on the wristbands! K
:)
HANG IN THERE DEVSTER. You are LOVED.
We love you! Stay strong! Grest article!, Jamie
Hi my name is Angie and I'm a newcomer to Chiari(just diagnosed May 17th). My surgery is scheduled for June 11th. Any suggestions or helpful hints about the surgery or recovery? I totally thought I was alone in this Chiari thing but am so grateful I found Devin's website and blog. Thank's for listening(reading?)
Hey Devin and everyone! I finally made it to your blog...sorry it took so long...but you do know how it is! I'm trying to figure out how this works so this post will be a test. Just wanted to let you know I am on board now!
~carrie
Okay, now that I know this works...let me introduce myself to everyone...I am Carrie, living in Ohio, 35 yrs old and was diagnosed with Chiari in Feb 2007. I suffer from severe neck pain, headaches, heart palpitations, pains in my arms and legs, tired all the time, definate chiari "fog", and some others I can't remember at the moment...see it's the fog! lol I have not been decompressed and am trying to avoid it at all cost. I am here for anyone that just needs to vent or that is looking for another Chiari friend. I am in the process of making a "Carries Chiari Connection" web site which will also link to Devin's Diary! We all need to come together and raise awareness!
~carrie
I am glad that conversation is finally starting! We need to support each other, Welcome Carrie and Hello Angie. Angie, I hope that you will feel comfortable sharing your feelings here. Please post anything you all have questions about or that you want to talk about.
Hey, it's me again. It's just crazy how some days it seems like my pain will never go away and then a good day happens! Thank goodness for those days because without them I think I would just ..... I don't know.
Hope to talk to Angie soon and would like to hear how things are going.
Devin, Hope you are well and that your dairy is all straightened up! LOL --I hadn't laughed so hard in a while...thanks.
love to all
Carrie
Hi Gals,
So glad to have a place to talk about concerns, joys, symptoms.....
Hi Carrie, I have a question for you. I'm just curious why you are not having the surgery done? I'm curious because my neurosurgeon told me I must have this done. Is there things about the surgery that I should think twice about? Devin, you have experience in talking to several people who have and have not had the surgery, what is your input? As of now I have 11 days to go before surgery.
Have you all been on the yahoo Chiari support group? Devin, I think you mentioned this when we talked that it wasn't helpful to you. I'm feeling like it is a little depressing reading about all the re-occurences of symptoms even after surgery. I am reading them though because I feel I need to gain more knowledge about Chiari, and maybe somehow I can be there to support someone else.
I go in today @ 1:30 to the neurosurgeon to see if I have fluid around the brain and need a shunt before the decompression. I really hope I don't and that I need just the decompression.....
Devin did you say you had a shunt?
Hope to talk again soon...
Angie
Hi Angie
Good to hear from you. The reason I have not had the surgery is because my doctor told me it is an option at this point. It probally depends on which doctor you go to and the degree of obstruction of CSF. My CSF in diminishing but is not obstructed at this point. I am trying other procedures, medicines, and anything possible to deal with the pain and symptoms. I fear surgery may make it worse or not change anything at all. We are all unique in our "Chiari situations", we can lean on eachother for support but our decisions have to be based on our own personal feelings, diagnosis, and what our doctors tell us. Then again, don't believe everything you hear, always get a second opinion. Your situation may be more severe than mine is. I also do not have a syrnix which normally results in necessary surgery.
Devin and Angie, I got a new invite to a new group today on yahoo, not the one with Chip. It has great info and has a very nice layout with facts and information from respected surgeons. The name is Chiari Connection International. There is some great Q & A on there with docs from The Chiari Institute.
Hope you both are doing great! As great as great can be for us.
lots of love
carrie
p.s another mostly low level pain today--now if I could just get rid of these darn heart palpitations!
Hi, girls. Wow, I am having a rough couple of days. I will write more later today but, Carrie, I have also checked out that new group, looks good. Angie, you may find useful information there! I am having major problems with my neck and right side today, completley numb!!! UGHHHH
More later...Have a great day!
Love, Devin
I'm sorry to hear about your pain today Devin. For some reason my neck is hurting today too. Maybe it's the weather? Or it could be that I got up at 4:30AM to drive my sister and her husband to the airport.....
I found out I do NOT have hydrocephalis (Spelling?)so only one surgery!!!!
Carrie thanks for the input. I appreciate all the input.
I will be prayng and sending good positive thoughts to you both today!!!
Angie
Angie, you are right it may be the weather, I took an hour and a half nap and I still feel icky. Call me when you can...I want to see how you are in the getting ready for surgery department.....Angie, you need to make the ultimate decision but,I dont regret it(surgery) as far as the difference in headaches, and symptoms. Mine were so extreme as I know yours are as well. Surgery will alleviate if not improve those symptoms. Many have said that ~D
Carrie~ How are you feeling this afternoon, any better? I saw your post on the Chiari connection page. What is your book about? How exciting..I dont know if you mentioned it to me before. Are you going to the walk in Ohio? I am not sure I am anymore. ~D
Devin: I tried to call you back that night we talked but you must have went to bed..anyways..I started writing a long time ago but then changed my objective to base it around my life with Chiari. I don't work on it as much as I should. I am still planning on going to the walk and really wish you would go. We can find ways to make you comfortable.
As far as how I feel: went to the follow up appt yesterday and they put me on moraphine and zanaflex hoping it helps my neck pain. Also I am suppose to go back in one month to get injections into my "trigger" points where my muscles have gotten bunched up. So far Im not real sure about the meds. It makes me feel tired and sluggish..like I need that! I still experienced some pain on and off today but overall it's not all that terrible. I have had a lot worse off days.I am sorry that you are in so much pain..hope you feel half way decent soon.
talk to you later
Angie...your welcome.
~carrie
Hey girls, and anyone else...
It's 4 am and I'm dressed and ready to go to work. Remember I have to work all that stupid overtime the whole month of June??!! YUCK! Be sure to send some postive energy my way because I am going to need it to deal with this month. I am in pain this morning but I am also hopeful that I will be able to do this.
Angie..I hope your doing well. I know your surgery date is drawing near but I know you are going to be fine! I will be thinking of you.
Devin...Thanks for the talk the other day...it helped way more than you will ever know. My kids told me that I should talk to you everyday because of my good mood change! :) I ended up taking them out for ice cream and we came back and watched a movie.
Take care...Love and hugs!
~Carrie
Hi Guys,
Well 5 more days till Surgery......
I'm starting to get nervous, for what I don't know. I have been crazy busy trying to get my house cleaned and every errand done so I don't have to worry about it after surgery. I broke down the other night just before going to sleep because I felt completely scared. My son is going to be starting day camp that day and I felt bad that I am leaving drop off and pick up for him to other people (grandparents), also he has a baseball game that night and I don't know if it would be too much for him. What do you think? Is it best he try to keep busy? He knows about the surgery and that he won't see me that day but I guess I worry about his feelings. Ugh... I hate this feeling of being out of control!!!!!
Thanks for letting me vent.
I hope you guys will have a good day and that it will bring laughter and joy into your lives :)
Hey Angie, I hope that you are feeling ok. I think it is great that he will be busy that day, think about it, he will be enjoying hisself. Thats what we all want for our kids right? I know being in the hospital makes you feel bad and nervous, but Yes, I think you are right: it is best to keep him busy! WHat else is going on? Are you ready do you think?
Carrie: You are welcome for the talk....I am your friend, anytime, You do the same...I love ya!
Carrie: by the way is the medicine starting to help?
Angie: Remember the story about my kids and the hospital? Kids are so resiliant. I PROMISE YOU HE WILL BE OK. You need to try to trust your self, god and the situation! You are on your way to feeling better! :)
Hey gals,
I'm ready as I'll ever be. Thanks for the encouragement. For right now I'm smokin it up (cigarettes) and planning to quit day of surgery. I have been a smoker on and off since 15 but just this last couple months have had a relapse. I've been on Weight Watchers as well and I needed something!!! Thanks you guys for all your support.
Have a great Day!
Angie: Im glad you are calm, LOl. I tried to quit and resorted to the new pill Chantix. It worked for my husband and I. It's amazing. Are you feeling more relaxed about your son? Remember to call me when you can!
Love, Devin
I have been so worn out with working 50 hours in 4 days! I also have been trying to adjust to the moraphine with still having pain! I called the doctor and they told me to double my dose and the next day I was sick to my stomache and battled falling asleep at work for 10 hours! It has been that way all week for me. I hate being that tired so I reduced the morphine back to original dose and still had trouble today staying awake. I had to slip into the bathroom to shut my eyes for a few minutes. My job wants a letter from the doc saying it's okay for me to work on the meds but I haven't gotten a call back from the doc yet. If the doc says I can't work on the morphine then my job wont let me!! So I would just tell them to get me off of it, I want to be taken off anyways! I hate the way I feel with it and regardless of the dose I am still in pain! The pressure in my back of my head has been horrible for days and when I move certain ways I have to grab my head and squeeze it.
With that being said, I called the Cleveland Clinic to confirm my appt in July. I really need to go now. I need ONE doctor to gather all the facts on me and figure out what to do, I can't take it anymore!
Sorry to be so down.
Angie, I wish you all the best with your surgery..I know it will make things better for you in the long run. I wish I was scheduled already myself. I know my CSF is acting weird because of the horrible pressure where the herniation is.
Maybe it's getting up at 3 am everyday that is killing me--anyhow..thanks for listening (again)
love and hugs
~Carrie
Devin, have you heard from Angie to see how her surgery went? I hope everything went well. I am anxious to hear about it.
I hope to see you at the walk Devin.
~carrie
Carrie: No, I have not and was wondering the same!
Angie: let us know how you are doing :) We are concerned and thinking of you, Devin
Hey Devin hope all is well with you. Did you see that I added your link to my website?
Have you heard from Angie?
I put some more stuff on my webpage, check it out...and oh hope you don't mind I put a pic of you on the pic page with me. Anyone who wants to be added can just send me a pic.
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