I have been reading thru all these post, it's been awile since I have been on because of my surgery..... But I do want you to know I was born with Chiari 1, and I have had headaches as far as I can remember, I am 52 hrs old now and I remember as far back as 12 yrs old saying "my head hurts" but doctors always found excuses... As I told you aand so have Selma, you can have a child, your doctors will be more attentive to you ,actually I think it is a good thing that you found out, so you are more prepared during child birth, I didn't know when I had my 3 kids and they were all dilivered naturally, and back then we did not have epidural, much much more pain than now, trust me I was with my daughter when she was in labor and once she had that shot it made a world of diffence!!!!!
Your doctors are rite you need to make the decision, you need to figure out how bad is the Chiari effecting your life rite now!! Just keep in mind you will need a lot of help in the beginning if you have surgery first, and it takes time to heal,, but also a pregnancy is 9months long so consider that time too, as adding more time to your healing process.. :) keep us posted
I Am at a loss for words , I am so so sorry for your loss.... I wish we could get answers from God why things happen, so we would know how to deal with it better... Sorry I didn't see your post till today , I have not been on the forum since my surgery on the 17 of dec... It's still a little hard to read, especially with the headaches and the fact I can't bend my neck...
But I hope that you do not loose faith, my oldest daughter had my grandson and decided to waite a year then have another one, but in the beginning she could not get pregnant, and when she finally did, after a few weeks she went for a routine check up, and it showed on the ultra sound that the baby had no heart beat...I don't know who took it harder her or I.... I was at work when she called me and told me , I was a totale basket case could not stop crying had to go home... At that point she decieded she was not going to try any more and get her tubes tied....I kept asking her to waite a little while but she decided to call her OBGYN and set up an appointment and go on with the decision that husband and wife made.... But just a week before her appointment, she was getting sick in the morning and that she was late that month, she went and took a pregnancy test at home and it was positive... I am telling you this so you don't loose hope....you never know
Hello Selma,
Thank you for the reply, i have to say that i do feel better after your message. I find it hard to settle with this issue and any symptom i feel i get really scared so it helps to have your encouragement.
regarding the pregnancy, after you message i discussed it with my husband and we have agreed to proceed with a pregnancy :) i am scared but we are making an appointment with a high risk doctor and once we have all of our questions answered and they confirm our decision we will return to RMA and proceed with the process. Did you have a hard time sitting up and holding her because if the Chiari or something else? did this pain get better with months?
Oh how nice you went to Guatemala, what part do you remember? My brother renounced his status here and decided to move back and settle down there so it has been 2 years since i saw him, I havent been to Guatemala and i am excited to see him but i was scared because all of my symptoms, i wasnt sure if should leave the country, the state or even my city for that matter. I guess that will be another decision to make before or after the pregnancy and surgery if i decide to.
Regarding work, thank you for the tip. I was let go from a small company in August because they felt my Chiari was causing me great stress, sure it was but not at work. I visited the ER twice at the end of July and missed the company summer party and then August 4th is when they let me go. My work background is all at small companies, prior to this company i was at a small company for 9 years as the customer service manager and before that 5 years at a swingset company as assistant store manager. So me getting let go was a pretty hard blow, i had never been fired before from a job. I was diagnosed but didnt tell them until July. I have always worked and so i want to get back to work but i dont want to end up in the same situation so i want to start part time and build my way back into full time if i can.
So how long were you dealing with Chiairi before you had the surgery? Can i ask what your symptoms were? Mine are dizziness, light headed and nausea and a lot of fatigue. After my ER at end of July i have to admit i was having a lot of symptoms and back to back, I slept a lot, no appetite and a lot of nausea , a lot of dizzy spells and body weakness, I started to feel a bit better around October, November was good besides the headaches and a bad episode i had n Veterans day: i was cleaning my pantry and so i kept looking up a lot, climbed on chair and back down, for about an hour finally my body got weak and i felt faint my entire body was weak and i kept feeling like i was going to faint, thank God i didnt my husband was with me so he laid me down and sat me up and laid me down again trying to make me feel better, i was just so weak, this lasted an hour and a half and then i was exhausted, December consisted of 12 bad days with headaches or the above i mentioned. This month so far i am doing good and it is the 23rd. not alot of headaches besides 3 days and slight nausea but not dizzy spells. flares? if a i appeal for disability, assuming i cant work, does it depend on whether i had surgery or not or must i have surgery to be considered for disability? I have learned on what not to do, i havent cleaned my pantry since that day myself but my husband has :) so little by little i have been learning. i wake up earlier and move slower, not on the go, i dont jog, etc.
Selma thank you for your time and reply. your feedback does make me feel better, i am not as nervous regarding my Chiari and my decisions.
I am sure you could ask 10 of this and get 10 different answers....for me, I did have lower back issues...and seemed to have more issues once my DD was born as I had a hard time just sitting and holding her....
I went to Guatemala one month b4 I got my Chiari DX...so sure...go ...visit your DB and enjoy....I even went on a burrow ride thru a coffee plantation while there...it was not easy getting on one but they helped me....
As long as your job does not having you lifting too much, pulling pushing etc....you should be able to work....thing is trying to locate an understanding employer...as we have good days and bad in addition to possible limitations at work....so, it may be best to look for a small family business to work for....one that understands what is going on.....
Now talking about pregnancy and surgery....if you want a child and are looking at your age...then go for it now...as recovery take take a while and we have to be patient....rushing to meet a goal is not the best thing post op....granted you know about your Chiari and I did not when I was pregnant....this is something to discuss with your DH and family as you may need help....
I am surprised how much more I can do now that I had surgery...for yrs I pushed myself to keep going....and we can do that I just wonder if it can hurt some with other issues....
Disability is not easy to get if you are just DX'd with Chiari....it can take up to 2 yrs to get and most need to appeal with the help of an attorney....
Only you know if you can forge forward with your symptoms....and no one knows how your pregnancy will affect you....it may not do a thing....so, do not look for issues just live your life and if new symptoms occur inform your Dr asap....no one can tell you if or when your symptoms may change....so again look at how your feel and are able to do now...and talk with your DH and family.
SelmaS,
Thank you for your reply. Is the weight and stress of carrying the baby harder on us Chiari patients? I really want to at least have 1 child of our own, my husband and i have openly discussed adoption but we both agree that we would at least like to have 1 child of our own. I have to admit i am scared of getting pregnant and it being bad on my body. There are many Chiairi specialist here in Stamford CT i had to go see Dr. Retake at TCI in NY. He assured me that he highly thought i would be able to have a child before or after surgery but given my age i would much rather have a child now than after surgery, if i decide so. That is another part that scares me Selma, the decision to have surgery. He asked me to score myself and i scored myself at a 70 and he said they didnt recommend anyone above a 70 to have the surgery, which caused me to question the severity of my chiari now and if i should go ahead and have a baby now. My gyno told me it would be a high risk pregnancy and that they would do a c-section, does that sound about right? Thank you for the book tip, i will be sure to get it. Truth is Selma this Chiari issue terrifies me and i just want to live and be here with my husband and family that i love so much. I am not working at this time because i was let go in August, after my ER visits at end of July. That's another thing and im sorry if i am too upfront, can we work? I am looking for a part time job instead of full time, can we get disability? I want to go to Guatemala and visit my brother, can i travel? can i go on a cruise? Thank you for your comments and any advice will ease my nerves.
I am posting to let you know that you are still in my thoughts. I hope today is a little better for you and that you are caring for yourself. Stay current with this forum. There is great support and encouragement.