Hey guys, I'm new on here and newly diagnosed. I've been dealing with pain for over four years and I've always felt like a faker. I'd go to the hospital and doctors for years, and no one was able to tell me what was wrong. My doctor at one point told me to talk to a counselor because he thought things were bothering me and that's why I was feeling this pain. I found out on April 5th that I have Chiari. I'm scheduled for surgery on May 17th. My mom works for a lawyer and apparently his brother is a neurosurgen. So she brought my MRI to him so he can check them out. My mom called me on Wednesday while I was in class and told me that he believed I didn't need surgery. I was so upset when I found out. I wasn't upset that I didn't need it, I was upset that I prepared myself for this relief, finally, and a doctor told me I didn't need it. I couldn't imagine what could be done to help relieve this pain that's only getting worse. I know it is ultimately my decision but I fear that my mom is going to prefer the second opinion just because he is her boss's brother.
What I want to know is, is anyone taking alternative treatments or methods for your chiari? is there anyone that has done this and still needed surgery? What would you do, or what did you do, if you were in this situation? Hope everyone is doing well and is staying strong!
I'm new here too. I am the mom of a CM1 diagnosed daughter. There is alot of information on this site and very helpful people who are much farther along with the daily living with this diagnosis and many who have had the surgery. Gather as much patience as you can. There are alot of ups and downs. Sometimes just putting a name to a thing that is causing you pain helps alot. Then to have the surgery option pulled out from under you can be a devastating time. Up and down. But you are a fighter and have toughed out already the times when doctors didn't believe you or you see five different ones and all give you different opinions. There is a place on the resources page that recommends what you should ask your neurosurgeon. That might help you. Also how old are you? Its hard when you have to work with and through a parent to get diagnosed and treated. My daughter was diagnosed with CM1 in 2009. She is 18 going on 19 now. We have both had to learn to have frank and open discussions. First because she is one of a set of triplets and they all went to college for their freshman year this past fall. So as a mom I've been going through the learning curve of how to let go in general. Then I also have to learn to let my daughter make the decisions about her treatment. Did SHE like the neurosurgeon? No , then it should be her choice to choose how and when we see another. I have to learn to ask "Would you like my advice on this matter" during some of our talks and not just say " you should do thus and so". I've been giving directions to three people for 18 yrs! I have to learn to back off and let each child/adult learn to experience life by themselves and use me for advice WHEN THEY ASK. Heehee I'm not perfect, I'm still working on it:) I ask my daughter " Am I mominizing again"? as a way to open discussions to help her say her piece and for me to listen to her as an adult, not my baby, which in my heart all three will always be. Does that make sense? I JUST learned that she has always had headaches and she thought, for instance, that when she learned to tie her shoe laces, many many moons ago, that getting a screaming headache was normal when you leaned over to tie them. She never said anything all these years because she thought the pain was a normal human thing. I never knew! As a mom you are driven to protect your baby from all things and I never even knew she was in pain! Shocker for me! You may be at a place when doors are opening, not just to how you treat this CM1 diagnosis but also how you and your mom communicate. Be brave, be respectful, be determined. You may be surprised at what you both discover. AND, you have a whole family here!
Hi Aimee
I'm also new here, however I've also been dealing with Chiari for a number of years. I also have chronic pain and at this point have decided, together with my family doctor and neurosurgeon, not to have surgery. You should definitely go and see the neurosurgeon and discuss pain management options as there are many. Its trial and error and it may involve some lifestyle changes as well. I'm sorry you've found yourself in this Chiari world, but hang in there, there are many of us who understand exactly what you're feeling. Take care.
Missy
So more information about everything, the second neurosurgen stated that just from the MRI, which he recognized he didnt know any symptoms or anything, that i didnt need surgery. I am scheduled to see him this week, so I'm hoping he could explain more of his opinion.
Emmaline said:
Welcome Aimee!
Not enough to go on here, but right off It would be strange to get an opinion with out being seen by the NS. It is very important to see the patient to assess what is going on. Simply looking at an MRI is only giving a NS half of the picture. Another NS visit would be needed. You also need a Cine MRI, it's a regular MRI, but they put a pulse ox on your finger. It's a measure for the spinal fluid flow in your brain.
Hi!! I'm 19 and I've been dealing with a majority of these symptoms for most of my life. When I was in middle school, I tried doing colorguard and doing cross country. I couldn't do it because I lost my breath so fast that I thought I wasn't going to get it back. I've gotten my tonsils out and had shoulder surgery, which my first neurosurgeon says I probably wouldn't have even had. I always thought it was normal to lose my breath that quick, or even just have trouble taking even a deep breath at any time, yawning sucks also. I always thought that it was normal to hurt. I thought that it was normal to have this numbness/tingly feeling between my spine and my right shoulder blade. I tell my boyfriend, he thought I was nuts when I told him I thought it was normal. I got so used to people telling me that what I felt had no cause or anything that I got used to it and thought it was normal. It was my normal at least, and I guess all of our normal, it some ways. It sucks because I have no one to relate to, no one understands. My sisters complain because of headaches or migraines, but none of them understand the headaches I have, or the pain I experience all over my body. I don't say anything because I don't want to look like a cry baby, or seem like I want attention all of a sudden just because this thing finally has a name. I don't say anything because no one could do anything or say anything. It's a relief to have this site and I'm so glad I found it.
azrider333 said:
I'm new here too. I am the mom of a CM1 diagnosed daughter. There is alot of information on this site and very helpful people who are much farther along with the daily living with this diagnosis and many who have had the surgery. Gather as much patience as you can. There are alot of ups and downs. Sometimes just putting a name to a thing that is causing you pain helps alot. Then to have the surgery option pulled out from under you can be a devastating time. Up and down. But you are a fighter and have toughed out already the times when doctors didn't believe you or you see five different ones and all give you different opinions. There is a place on the resources page that recommends what you should ask your neurosurgeon. That might help you. Also how old are you? Its hard when you have to work with and through a parent to get diagnosed and treated. My daughter was diagnosed with CM1 in 2009. She is 18 going on 19 now. We have both had to learn to have frank and open discussions. First because she is one of a set of triplets and they all went to college for their freshman year this past fall. So as a mom I've been going through the learning curve of how to let go in general. Then I also have to learn to let my daughter make the decisions about her treatment. Did SHE like the neurosurgeon? No , then it should be her choice to choose how and when we see another. I have to learn to ask "Would you like my advice on this matter" during some of our talks and not just say " you should do thus and so". I've been giving directions to three people for 18 yrs! I have to learn to back off and let each child/adult learn to experience life by themselves and use me for advice WHEN THEY ASK. Heehee I'm not perfect, I'm still working on it:) I ask my daughter " Am I mominizing again"? as a way to open discussions to help her say her piece and for me to listen to her as an adult, not my baby, which in my heart all three will always be. Does that make sense? I JUST learned that she has always had headaches and she thought, for instance, that when she learned to tie her shoe laces, many many moons ago, that getting a screaming headache was normal when you leaned over to tie them. She never said anything all these years because she thought the pain was a normal human thing. I never knew! As a mom you are driven to protect your baby from all things and I never even knew she was in pain! Shocker for me! You may be at a place when doors are opening, not just to how you treat this CM1 diagnosis but also how you and your mom communicate. Be brave, be respectful, be determined. You may be surprised at what you both discover. AND, you have a whole family here!