Sydney, I’m so sorry that you’re having so much pain! I hope you can eventually go to college. Thank you for your advice, though. I’m hoping that medication will help, but if not, I will look into surgery.
Thank you!
Sydney. said:
Sadly, I tried in high school. But high school was to much for me, the pain was just to overwhelming for me to attend class.
So they put me on homebound and online school. Which is much easier, but still hard.
I don’t plan to go to college, or at least a full time college until I’m well enough.
My suggestions, would probably to cut down on the classes. OR if you can, transfer to online for now until you can find help?
It’s not good, if you fail the classes or not attend. You are just putting money towards them, and they would gladly accept it wether you are sick or not.
Medicine doesn’t help me, so it’s a struggle. I know how it feels…
I understand, surgery is kinda, big. But you might gain relief from it. I do have to say, I don’t have some of the same symptoms, but new ones came back. But don’t just go on my case, look at all the success’s.
IF you can’t control the pain with medicine, or if they cannot help you anymore. I believe you should try and find some help so you can live a life without pain.
Hope this help!
My son has all of those problems and i have seen that works for him is there is a heating pad that goes on your bed and heats up as well as a heating blanket and that seems to help him have a better night sleep and is able to go to school all day.
But like anyone with this problem you will always have those bad days. I would try that and see if it helps.
Crazygirl,
Thank you so much! I hope your son feels better! I know how much having this sucks!
I think I live with a heating pad actually I have bought 3 in the last 6 months cause I use them so much and they go out
Crazygirl said:
My son has all of those problems and i have seen that works for him is there is a heating pad that goes on your bed and heats up as well as a heating blanket and that seems to help him have a better night sleep and is able to go to school all day.
But like anyone with this problem you will always have those bad days. I would try that and see if it helps.
Totally have to agree with the last part of this. Don't let others judge you for bringing heat/ice packs to class. You're there for you and to learn, and to hell with what they have to say. ;)
Surya said:
Hey Meghan!
I am in the same boat with you--I'm also a sophomore and have to deal with these kinds of things. How many credits are you taking? I would suggest taking the minimal of 12-13 (based on school), and if you're worried about graduation time, take classes over the summer. Though, the summer classes are probably a good hour to 2 hours longer than your average class, and as chiarian, that can be hard to sit through.
Do you live on campus? Being close to your classes would make things easier. Does your campus have a system where they transport students who have leg injuries, walking issues, etc? You could apply to that. Bring ice packs or heating pads to class to help with sitting through it. Bring a lumbar pillow if you have to sit in straight back chairs. Drink a ton of water.
And in all honesty (and excuse my language), don't give 2 shits what other people might think of you. Bring those heating pads, etc, to class! You are the only one in your shoes, so do what makes you happy.
Hope this helps and please write me if you have questions--I know exactly what you're going through! Hugs!
Surya
I really think you should go for a radio therapy rhyzotomy. It will take a few minutes of treatment and block your pain for 12 - 24 months. After mine I needed no pain meds. You will be much more able to cope, more energetic and able to concentrate on your studies, go to class more often etc. Discuss it with your NS and have them do it for you. You will be in theater for 15 min from start to end, the next day carry on with your life feeling so much better. Also ask them to prescribe mirtazapine which helps work against headaches and depression. I wish you all the best.
Shasta87,
Thank you so much for your support! I was sadly forced to medically withdraw for the semester, but I plan to take summer classes and return in the fall.
Flerrie,
I had not heard of this treatment before. I might talk to my Neurologist if things continue to be bad. I had Botox treatment and migraine cocktail infusion about a week and a half ago. I have felt a little bit better since then. I’m not sure I’ve tried mirtazapine, yet. Does it actually prevent migraines?
Hi Meghan, I went straight to a neurosurgeon for treatment when I was diagnosed. I do not suffer any pain because of the rhizotomy and mirtazapine. I do not use pain meds at all. I do not need any other meds to see me through. It is worth going into it. When I read how everyone is suffering with pain and I look at the blessing of my treatment and painless situation I wish all would go for it. Even when I went for my decomp operation to take pressure away I did not have all the pain and came through very well. For pain control I would not go any other way.
Flerrie,
I am in between neurosurgeons right now because mine moved, but I definitely will see about getting this done! I do the Botox treatment now which aims to do about the same thing in a different way. I would love to live with even lesser pain if not zero pain. Thank you so much for letting me know about this treatment option!
You are welcome. What I like is in a radiofrequency rhizotomy no foreign matter is injected. A thin needle is used to transmit radiofrequency to stun the nerve. The nerve still functions, it just no longer carries pain signals.
All the best to you
Is it a very painful procedure? How long did it take after the procedure for your pain to leave?
Not at all. They give you general anesthetic then perform the procedure. and you wake up within 15 minutes. The pain is gone and you can go back to work or classes the next day feeling like totally a different person.
Wow! That's incredible! I'm going to find out where I can get this done near me. It sounds wonderful!
It is. As I said I live pain free and sensibly. Rest enough and do not put any strain on your neck. Live according to the list of things chiarian,s may or may not do. If you start getting pain again, go and have another one done. I have had two done. One in 2008 and again in 2010. Decompression in 2011. No pain. I use mirtazapine at night, no pain meds at all. I use Lamictin to help with balance. That is all. I use.
That’s so wonderful! I definitely want to do this procedure if it means I can live a normal life. I’ve been trying to find something that would do that for me.
I have a few issues to get off my chest I live in texas and all of my family is in Oklahoma I am married I am just a little frusterated cause my husband seems to think there is nothing wrong with me and when I had my surgery he says all of the chiari was fixed I have no support from him and it is kind of aggrevating he never ask me how I am which I have got to the point that I keep all of my problems with the chiari to myself he works out of town sometimes I had to go to the hospital with issues from the chiari was there for five days I was there all by myself I think he could have came home I have tried to tell him to read up on this disease he said I have. how can I get him to understand how I feel sometime. I had the botox injections and my eyes have been swollen since then I ask him questions about it and all he has to say is I don't no. if things were switched around and he had this disease maybe he would understand. and my neurologist has told him that this was a hard surgery but he does not pay attention to him either I feel like he only cares about him self he is so selfish and he don't understand that noise really gets to me he has 6 grandkids when they come over it is like a daycare here and I just get overwhelmed running around the house screaming he says nothing what should I do about these issues any advice from anyone
I sort of understand people not understanding what you are going through. My parents were sort of in denial for the first several month and especially when I had to move back home a year ago. They didn’t realize that some morning I couldn’t get out of bed because the pain was so bad. They thought I could do house work and kind of be a maid, but somedays I would have to sleep or lay on the couch all day. They would get really mad at me, and it took them a while to realize that these weren’t just migraines. I still don’t think my dad gets it because recently he told me that somedays I have to suck it up like my mom who has chronic migraines(not Chiari related). It makes being at home extremely stressful, which makes me feel worse. Only my close friends and boyfriend seem to understand. My parents try, but it’s really hard for them.