Blank
Blank
Blank
Blank
Blank
Blank
Blank
Blank
Blank
Post It
Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
9432311 tn?1432825085
05/15
You're in my thoughts all the time, but especially today.
I want to know about your well-being. Please fill me in on your present situation, thoughts, and symptoms. Let me know about your level of activity and your work schedule. And, again, thank you for asking and caring about me. It means a lot to me.
Blank
Report
9432311 tn?1432825085
05/15
You're in my thoughts all the time, but especially today.
Good morning, I am always happy to see notes from you, cduque. By the way, what is your name? I am recovering well, physically, with the exception of some neck stiffness and occasional pain. My real issue is not being able to drive. I am the primary food shopper, as my dear husband works an 11-hour day. Plus, I really love to do the food shopping and the meal planning. So, I guess I am frustrated. Do I regret having this second (fusion) surgery, you ask. Absolutely not, it's a valuable thing. It is just not my usual self to let other people do everything for me.

Blank
Report
10169340 tn?1415846161
04/15
sorry this site will only let you write so much, but if you have any more questions don't hesitate to ask I will try to help you as much as I could.. Oh by the way my name is Nella  :)  what is your name ? Take care I think about you often , I am so glad I found you on this site,exspecial you that we are from the same state it means a lot to me !!!!!!
Blank
Report
10169340 tn?1415846161
04/15
hi so glad to hear back from you & to hear that your headaces are not as bad,that is Awsome !!!! My decision to have surgery was not difficult, actually I had no option, my health was so bad and every month that went by it got worse,I had terrible headaces and the dizziness was so bad I could not stand for more than 10 mins that I would loose my balance and feel like I would faint,I need help to walk someone had to hold my hand like a child, the short term memory was really bad too!!! I couldn even have an adult conversation with my husband anymore that I would forget what I wanted to say, it was bad!!! My poor husband he put up with a lot from me for 1 1/2 yrs!!!! But thank God for him and my 3 kids they are adults and helped a lot with taking me to doctor app..
Blank
Report
10169340 tn?1415846161
04/15
Hi cduque, I am doing very well thanks,I have to say honestly that I only had a slight headaches when the weather is making these drastic temp. Changes, but living in New England this  is something that we are used to, maybe we should start thinking about moving somewhere warm !! Lol
How are you doing ??
Blank
Report
9432311 tn?1432825085
04/15
I won't lie to you - this was a bit more difficult than just the decompression I had in .July. Taking the prescribed pain medication faithfully does help you to deal with the pain, but I really get uneasy when I get mental confusion. So, today is the first day off the pain meds, and it's already 6:30 pm. Wish me luck.

Thank you, cduque, for caring about me. I am so comforted by your notes. And I will be there for you. For now, I just wish I could someday meet the kind friends I have found here. Stay well, friend.ust a quick note to say hi!
Blank
Report
9432311 tn?1432825085
04/15
Just a quick note to say hi!
Hello, cduque, You are right! Today I turned a corner,so to speak, on managing the pain. Those crazy narcotics had me hallucinating. But, how needed they were. I woke up today to try only Tylenol. It is working. Ibuprofen works so much better, but it causes bleeding issues so I won't be taking them for a little time.

This note continues
Blank
Report
10169340 tn?1415846161
04/15
You're in my thoughts all the time :)
Blank
Report
10169340 tn?1415846161
03/15
Hi sorry I haven been on this site for a while, how are you doing? How did your app. Go with the high risk doctor?? The FB page I am always on is a closed group,I have gotten other in it that are patient of my doctor ( Dr Bolognese ) do you have FB send me a friend request you will find me under  Nella Lastrina Negri, but let me know what your name is on FB...so sorry I didn get back sooner, let me know how your doing?  :)
Blank
Report
9432311 tn?1432825085
03/15




Just a quick note to say hi!
Thank you for asking about my recovery. I went for my post-op visit on February 6. At the time of my surgery, the doctor told my husband that there was something he was watching in my cervical spine. He noted that it didn't at that time warrant surgery but it may in the future. Six months later, and I am still having significant neck pain.
Blank
Report
9432311 tn?1432825085
03/15
Just a quick note to say hi!
I hope you got my notes. I cannot see that it was sent. Let me know; if not, I can resend it.
Blank
Report
9432311 tn?1432825085
03/15
Just a quick note to say hi!
This is the second part of my note. I was cut off before. What i was saying was that my measurement had progressed in the six months to 8.8 mm. The doctor suggested surgery, said that I was a candidate, and to go home to discuss it with my family. Fast forward, I am scheduled for an Occiput to C2 fusion surgery on April 15th. i am still having a lot of neck pain and my head is heavy on my shoulders. I am just in a holding pattern now, waiting for the date to come. Now, what is your current status on pain and healing?
Blank
Report
9432311 tn?1432825085
03/15
Just a quick note to say hi!
Thank you for asking about my recovery. I went for my post-op visit on February 6. At the time of my surgery, the doctor told my husband that there was something he was watching in my cervical spine. He noted that it didn't at that time warrant surgery but it may in the future. Six months later, and I am still having significant neck pain. I started reading before I went for the visit. What my MRI showed at the February visit was a progression in what is termed a "Grabb-Oakes Measurement." I had read a lot about how many people have Craniocervical Instability. I researched a lot. The doctor showed me that my measurement was at 6 mm at the time of my surgery. Apparently, the indication for needing cervical fusion surgery is for a Grabb-Oakes measurement of 8 mm.
Blank
Report
10169340 tn?1415846161
01/15
i will keep you in my prayers, that God will bless you with the pregnancy, and that everything goes well!!! Yes my dr is Dr Bolognese, but there are many Dr at TCI that are good, my oldest daughter had Syringomaelia, and needed emergency surgery at the age of 18 due to an auto accident, but it's been 17 yrs since,and last year her left arm was not feeling rite, she had also an MRI and the Dr here in CT they told her it looked like the syringo. Was back she went to see a doctor at TCI (not Dr B) and they told her not to worry,syringo was not coming back!!! So listen to your doctor at TCI and your OBGYN, and everything will be fine!!! Good Luck I will be praying for you
Blank
Report
10169340 tn?1415846161
01/15
also I forgot to tell you, on Facebook I am part of another Chiari support group, you need to be accepted in because it is only open for people with Chiari , and their might be someone there that has had a pregnancy after Chiari, I hope I helped you a little keep in touch ... Nella :)
Blank
Report
10169340 tn?1415846161
01/15
psorry for se inc so many notes but it will only let me write so much or it won't post, anyway I am not a doctor , and much older than you, my children are all grown and 2 of them are married , and I have 4 grand kids!!! But I will tell you that Dr Bolognese ( my doctor) said that the younger you are the better!!! So in a wY my age was somewhat against me I am 20 yrs older than you!!! I will also say I was talking toa girl in the UK, who just found out she was pregnant, and it happen after her surgery,and she was very worried about it to, I told her that maybe having the baby naturally (vaginal) which she was so scared of, that she might want to think of. C-section, it is a good alternative and it's not that bad , my daughter had both kids that ways... Keep I touch, keep postinp!!
Blank
Report
10169340 tn?1415846161
01/15
i am so glad you contacted me, finally  someone from Ct !!!  To answer your question, I was diagnosed in April of 2011 with CM1, but at that time I did not know about TCI, And I had found a doctor in Boston, who only understood Chiari and nothing else!!! I had my first decompression thru him in October of that year, because my headaches were really bad, but only a few months later all my symptoms came back and they came back with a vengeance!!!! You found a great place!!! TCI is  very good, that is where I found my Dr, he now left them and went to another institute,and I followed him..
I had to have a second decompression because my first one was not done correct.. But that is not always some people do well with just 1 surgery...
Blank
Report
10169340 tn?1415846161
01/15
Hi cduque welcome to our community, so glad you found this forum , it's a  really forum, I found a lot of support here and also some other Chiari support groups.. I am sorry I didn't back to you sooner, I am 5 weeks post op of my decompression and the spinal fusion, and I had some complecation during my surgery, so I think recovering will take longer, I have been having some real bad headache for the past few day, some due to weather changes some because I pushed myself this week a little to much.. Lesson learned !!!!!
Blank
Report
9432311 tn?1432825085
01/15
You're in my thoughts all the time, but especially today.
Hello cduque,
Thanks for thinking about me. My surgery was July 29, and it went well. I have been recovering steadily. I have my 6-month post-op aointment with Dr. Bolognese on February 6. I am having some neck pain with a grinding scraping sensation. I. An't wait to see what he says.

As for your surgery decision, the question is what does Dr. Rekate think about a timeframe for you to decide? What specific symptoms affect you daily. There is so much to weigh when making the decision to have surgery. One thing that may make you feel a bit more comfortable, is that I had a very good hospital experience and I am glad that I had the surgery.

What are some of your specific fears?
Blank
Report
620923 tn?1452915648
07/14
Welcome to our Chiari community! : )  "selma"
Blank
Report