06/15
Just a quick note to say hi! No worries...I was also having issues with my laptop...malware or something like that , so not feeling well I was not on much, I tried to post a few times via my phone but it is so small...ugh...difficult to see....but I am doing better thanks.....
06/15
Just a quick note to say hi! I did not get a separate thread done as I was not online early enuff as I was not feeling well....I did however post on the thread that members post the surgery dates on.....sorry.
05/15
Last part 3 :): im reply considering this surgery this summer. I want to get back to work I don't like being home. And we want to have a family, the high risk doctor doesn't recommend a pregnancy unless I get the surgery which made me sad. Are all chiari patients different bc I have to say I don't suffer from alot of headaches but certainly dizzyness, flushes of weakness, heart racing etc.
05/15
Part 2: sp since last year I have not been working which is hard for me since I've always worked, since I was 14. I was laid off Aug.4th and the rest of the year was pretty up and down. January I started feeling better but right when I thought I was ready to start applying I would get a dizzy spells or an episode so my husband prefers I stay home and not put myself in a situation like before where I would be laid off. My symptoms vary, headaches have subsided alot but I have dizzy spells and alot of left arm weakness that goes into my neck. I had an EEG done yesterday and my annual MRI.
05/15
Hi Elisaandbucky,Thanks for replying, my name is Celeste. Im so happy to hear that you are doing better and that this second surgery has helped. When will you be cleared to drive you think? I hope the neck stiffness will go away eventually and that you will be back to your normal self soon so you can enjoy driving and grocery shopping again. How is your son doing? As for me I am staying positive. I was laid off from work last year 1 week after I went to the hospital and missed work for a few days. They said they felt my chiari was causing me great stress and so it was best to part ways.They composed a resignation letter on my behalf but I said I would not sign because I didn't compose the letter and I didn't want to quit my job so they terminated me
05/15
Hello Elisaandbucky,
How are you doing now? Are you beginning to feel better and recuperating? I pray that you are always.
04/15
Just a quick note to say hi! How are you feeling? It's was so nice to se the note from you!!! Can't tell you how happy I am that your doing so well and so soon off those meds WOW !!!!! Your much better than I was, I stayed on them foe almost 8 weeks, I think I was scared that the pain would return.... Sorry I didn't respond sooner, now that I am back to my full time hrs at work I get home very tired, if you need to ask me any questions send me a message thru pm on face book, that way I will see it rite away because my phone get the alert,I can respond....to answer your question about sleep, I got to say it is still a little difficult , my neck gets very stiff at nigh, even with the 2 x a week of PT ,and I am taking all natural muscle relaxers?
04/15
So happy to hear back from you, are you back home or at TCI still? I am sorry to hear about the narcotics, how was your day off of them? what is the recovery time for this surgery? I pray and pray that God sends healing your way. it's always nice to hear from you and Nellan12. keeps us posted on your recovery and I too wish we could all get together one day and meet, one day. :). For now I will continue to pray for you and your recovery. I pray you won't need another surgery either... enjoy your day and I hope it gets easier from here for you.
04/15
Hi Elisaandbucky, you are in my daily prayers. How is the recovery process going? I remember your surgery was April 15th, how are you doing now? Is this time around much harder than the last? I pray for you daily.
04/15
You're in my thoughts all the ti
04/15
hi Elissa, been thinking about you so much lately, been praying for you on your sugery date, please let me know how your doing as soon as you can....your in my prayers
04/15
Hi Elisa,
I have been thinking of you and wonder how your surgery went? I am not on here much but know that my fellow chiari friends are in my thoughts and prayers. Please le me know how you are doing. My well wishes sent your way!
Mel
04/15
Hello Elisaandbucky,
How are you doing? I am doing fine. I have just started to ride Trigger again and Yes I love the Budweiser commercial. I have not been doing to well. From going back and forth to and from many dr appts. I really haven't been on here that much. But I must get back on here. My support system seems to falling apart and I am going crazy. I go back to dr H to figure out when surgery is will be happening. So my baby must be put back on the burner and only be ridden by the exceriser. Which he hates. He loves his mom but he understands that I am not up for it. but thank you again for the concern.
03/15
Hello Elisaandbucky,
I am sorry to hear about the neck pain and instability as well needing a second surgery.how do you feel about the second surgery, nervous at all? Are you still glad you had the first surgery? I always keep you in my prayers and will continue to. I will pray for a safe surgery and recovery. Is this part of Chiari or anything to do with it? Is Dr. Bolognese performing this surgery as well? I am thank GOD feeling better. My head hurts only with activity like laughing and bending down. The nausea has subsided as well as the dizzy spells. I pray God keeps me safe everyday. Husband and I are considering a pregnancy, we have an appt this Thursday and see what the high risk doctor advises, do you have thoughts or insight on this? I will continue to pray for you.
03/15
Hello Elisa,
how are you recovering? as always i continue to keep you in my prayers. How did the 6 month follow up go in February? did Dr. bolognese help with any insight on what the scraping feeling was? I hope that you and your son are doing well!
02/15
Just a quick note to say hi! Sorry I just saw you message I will look for the link and try to send it to you, I know I got mine thru FaceBook, do you have a FB? If so we can connect that way, you can find me under... Nella Lastrina Negri , my first name maiden name and last name, let me know .
02/15
Hi again, you need to be strong and stronger for your husband!!! My poor HusbandChris he always put up this front of being ok, but there were times when we were alone in the hospital and he though I was sleeping that I heard him cry, it just as hard on them to see us suffer as it is painful on us!!! I don't want to scare you I am just being honest, but don't forget also that I had complications and that they are very rare.. There is a YouTube video on Dr B you can research CFS flow and Craniolcervical instability..I am so glad you got back to me I have been thinking about you in the past few day a lot ..if you need to know anything that I can be help to you please let me know :) and keep in touch ((((( hugs)))))
02/15
i am so sorry I never saw your first note before you left, I actually have not gone to his new offie yet, I will be there in June for my 6month postop... When you went there did you have any idea that he was going to talk to you about the CCI or was totally new diagnose? He was the one who did your decompression, didn't he see the CCI before? Sorry about all the questions... And I know exactly how you felt when he does that test in his office, with pilling up your head and then pressing down, he did that to me too. Awful feeling!!!! Your poor husband, this is much more serious surgery, I got to say the first 7-8days are the most difficult!! It's cutting me off I will continue in another post
02/15
please message me back as soon as you can let me know how it goes!!! Be careful with your long drive, I will pray for you safe drive there and return home,and hopefully you will get good news from him!!!
01/15
Hello and thank you for the reply,
Not sure if i answered already- I am so happy your surgery went well and you are recovering steadily. I wonder what the scraping next pain and hope he can provide and answer for that. We didnt speak on a time frame for me to decide or when to have the surgery. My fears are the anesthesia and the pain after i guess. Ive never had surgery before besides oral surgery and that was about 8 years ago, i am terrified of this surgery and the process. My symptoms come and go, I move slower now then i did before so my morning headaches arent as bad when i first wake up, still some dizzyness here and there. December consisted of 12 bad days but this month is better. So happy to hear from you- sending you lots of get better fast wishes and prayers!
01/15
Hi Elisa,
How are you doing? We chatted before your surgery in July. how did it go? how are you feeling? I went to see Dr. Retake at the Chiari Institute in September but i have yet to decide if i am going to do the surgery i am beyond petrified. I was looking to see how it went and if your better. I have been keeping you in my daily prayers and your son as well. i have been thinking about you and praying for you since we last talked in July.
01/15
sorry to hear that you are not feeling well..did the surgery improve your symptoms at all? Your package will get there don't worry, same thing happen to me when I sent all my paperwork in before the surgery,
I am doing ok I think ?? I am not in beds so that is good ,I do spend a lot of time in my recliner, I am able to walk around the house and take care of myself, although I still can not make dinner for the family, yesterday was my husband's first day back to work since surgery, so it's kind of harder for me, but it might be for the best making me move more, I have a neck brace so I can't do very much,and I think that the back of my head is till very numb,but I get these pains on the rite side the shoot up my ear into my head, might be from the second surgery. Time will tell..
01/15
You're in my thoughts all the time, but especially today. Hi I was wondering if you went for you post op visit with DrB yet? If so how did it go ?
12/14
Again thank you for the support! You sound like a really amazing person and mom!! Your son is very lucky to have you!!
12/14
because a few months after surgery all my symptoms came back and the headaches were much stronger,and the dizziness was getting so bad I could not stand at work.i had seen 6 doctors including the NS that I had and no one could tell me what was wrong..DR B was the only one who saw the MRI and said to me I know what is wrong and I can fix it for you!! He said the first surgey was not done complete and I also had CCI
12/14
Just a quick note to say hi and thank you for the kind kind words and support much appreciated!! I hope you are doing well
12/14
i am having the second decompression, because my first surgery was not done complete, this is what Dr Bolognese explained to me,also my previous Dr should have never done the surgery without taking care of also the CCI,this is why it will be a little more complex, surgery is 10 hrs long, and my age as Dr B explained it takes aalittle longer to heal..
Sorry to hear that your not feeling better, I will say, I was bed ridden for 3 weeks after my first sugery, but after that I slowly got better..I was headache free,for about 2 months then they came back and they came back with a vengeance !!! Much stronger and with so much more symptoms..
Can you give your NS a call let him know your still not feeling well? Who was your NS ? let me know how you make out you can always PM me like you did now..
11/14
Thank you for for the Birthday wishes and yes I am 1 yr OLDER THAN YOU ,I don't know if it's a good thing after 50 just want to feel good not think about the # ...lol :)
11/14
Thank you for remembering !!! Yes it is my Bithday today
11/14
Just a quick note to say hi and thank you for the lovely note....it is nice to know I am making a difference for someone....and I love to see the members become a community and help each other....thanks again for the lovely sentiments.
11/14
Thank you, I love hugs !!! I know how you feel ,I had 51 too and it will be my 52sd birthday this Friday,OMG , I do not like the number !!!! Lol :)
