I got a nice welcome and was asked to introduce myself. I hope this is the right place!!
I've had bad neck pain for about 3 years. Finally went to have it checked. 5 MRIs later they said I had chiari 1, bulging cervical discs, and cervical arthritis. All the doctors I saw (neurologist, pain doc, etc) discounted the chiari- said it couldn't be a problem.
I had fusion disc surgery in June, and the pain is worse. Pain is increased by sneezing or pulling and pushing heavy objects. I am abnormally klutzy and have balance problems and (according to my sister) an unusual gait.
Now I have had vision problems- supposedly "ocular migraine".
I don't know how to figure out if chiari is part of my problem, I can't find a doctor to take that seriously.
Welcome. My son was diagnosed with Chiari in May and had surgery in June. Let me first say I am so sorry you are going through this. I have found this site to be very helpful. Being able to connect with others that understand Chiari symptoms is rare and people on this site have been very helpful. I will share with you some positives from my son’s surgery. His vision has come back and is now better than 20/20. His fine motor skills are improving. The dizziness had gone away. I have found that pretty much no doctor knows or understands all the components of Chiari. It has been my experience that the neurosurgeon understands the surgery part and that is about it. We have to be advocates and educate our own doctors and ask them to do research on it so they can fully understand it. My husband is a family practice doc and is now teally learning first hand about the disease. I am pushing him to become an expert on it as so few physicians really understand the symptoms, surgery and post surgery issues that patients and their families face. I wish you the best with your journey. Stay positive, listen to your body, change doctors if you feel they are not taking things seriously because Chiari is serious.
I am sorry you have joined the chiari ranks. Not a fun place to be, but stay strong and you're not alone.I think we have some similarities. I had 2 herniated discs and had 2 levels fused in my neck in 2011, best surgery ever, so much pain relief! I had been in extreme pain for over a year and tried PT with all my might but I could no longer enjoy life. Neck pain, discomfort and some tingling numbness had start at 26 years old but took until i was 44 to come to surgery. 6 months post fusion I started getting lightheaded when I would stand up, this progressed for a year or more before the chiari head pain started following the lightheadedness. My son has chiari and is decompreesed so I requested that my Dr do an MRI. I was told it was normal (I should have requested a copy and viewed it myself) they felt i had exertion headaches and symptoms continued to progress for another year so before I got to a neuro that read my original MRI and found the 13mm chiari. I am still under going some testing by neurosurgeon to make sure fusion is good and a closer look at other bulging discs and nerve damage. I also have what some drs refer to as occular migraines . Where they last for 30mins and its like flashing mirror pieces in a shape in field of vision. I've gone from 20/15 vision to needing tri focals in 3 years. They claim eye sight is just my age, 48. I have a meeting with my ns next week and I will be asking if this chari is the cause behind my bad neck. I'm sure there is no scientific evidence to back it up yet but in my mind I have always wondered why I can be a very healthy , in shape , strong woman that has not totally abused their body and have a neck so much older than my age. Now knowing I have chari I really think the pressure must at least contribute to my neck problems. I have felt chiari pressure symptoms since I was 15, but it was never a daily thing. My oldest some had decompression surgery at 21. And my youngest son 17 was diagnosed last month but is not having any sympyoms as of now. I do agree with all that Lisa ^^ said we end up educating most doctors on chiari. Most MD's I have run into haven't even heard of it. Stay strong and educate yourself.
I am sorry you have joined the chiari ranks. Not a fun place to be, but stay strong and you're not alone.I think we have some similarities. I had 2 herniated discs and had 2 levels fused in my neck in 2011, best surgery ever, so much pain relief! I had been in extreme pain for over a year and tried PT with all my might but I could no longer enjoy life. Neck pain, discomfort and some tingling numbness had start at 26 years old but took until i was 44 to come to surgery. 6 months post fusion I started getting lightheaded when I would stand up, this progressed for a year or more before the chiari head pain started following the lightheadedness. My son has chiari and is decompreesed so I requested that my Dr do an MRI. I was told it was normal (I should have requested a copy and viewed it myself) they felt i had exertion headaches and symptoms continued to progress for another year so before I got to a neuro that read my original MRI and found the 13mm chiari. I am still under going some testing by neurosurgeon to make sure fusion is good and a closer look at other bulging discs and nerve damage. I also have what some drs refer to as occular migraines . Where they last for 30mins and its like flashing mirror pieces in a shape in field of vision. I've gone from 20/15 vision to needing tri focals in 3 years. They claim eye sight is just my age, 48. I have a meeting with my ns next week and I will be asking if this chari is the cause behind my bad neck. I'm sure there is no scientific evidence to back it up yet but in my mind I have always wondered why I can be a very healthy , in shape , strong woman that has not totally abused their body and have a neck so much older than my age. Now knowing I have chari I really think the pressure must at least contribute to my neck problems. I have felt chiari pressure symptoms since I was 15, but it was never a daily thing. My oldest some had decompression surgery at 21. And my youngest son 17 was diagnosed last month but is not having any sympyoms as of now. I do agree with all that Lisa ^^ said we end up educating most doctors on chiari. Most MD's I have run into haven't even heard of it. Stay strong and educate yourself.
It is reallly helpful and reassurarring for you to respond to IZZY as your husband is health care professional and you both think surgery is the right way to go...would you mind sharing with us..how old is your son..how is he now..has he experiencing any complecations..is just so scary..that I heard in the UK quite lots of them facing lots of issues..I am gong to see another neuro surgeon for second opinion soon..so would be helpful if you could give me any tips Lisa said:
Welcome. My son was diagnosed with Chiari in May and had surgery in June. Let me first say I am so sorry you are going through this. I have found this site to be very helpful. Being able to connect with others that understand Chiari symptoms is rare and people on this site have been very helpful. I will share with you some positives from my son's surgery. His vision has come back and is now better than 20/20. His fine motor skills are improving. The dizziness had gone away. I have found that pretty much no doctor knows or understands all the components of Chiari. It has been my experience that the neurosurgeon understands the surgery part and that is about it. We have to be advocates and educate our own doctors and ask them to do research on it so they can fully understand it. My husband is a family practice doc and is now teally learning first hand about the disease. I am pushing him to become an expert on it as so few physicians really understand the symptoms, surgery and post surgery issues that patients and their families face. I wish you the best with your journey. Stay positive, listen to your body, change doctors if you feel they are not taking things seriously because Chiari is serious.
Wellcome to the forum, I am new as well, I am sure you will find this group are very useful..lots of the members are veryhelpful..I am the same as you but waiting for my second opinion with another neuro surgeon..and so terrify what it may come?
Wellcome to the forum, I am new as well, I am sure you will find this group are very useful..lots of the members are veryhelpful..I am the same as you but waiting for my second opinion with another neuro surgeon..and so terrify what it may come?
Thank you , I will keep you informed, is your son still on medication..I suppose I am lucky my gp is good, even though they know tiny bit about it..but the first neuro surgeon who saw me referred me to the best one in the UK..so wish me luck.. b2wc said:
Hi Lisa,
It is reallly helpful and reassurarring for you to respond to IZZY as your husband is health care professional and you both think surgery is the right way to go...would you mind sharing with us..how old is your son..how is he now..has he experiencing any complecations..is just so scary..that I heard in the UK quite lots of them facing lots of issues..I am gong to see another neuro surgeon for second opinion soon..so would be helpful if you could give me any tips Lisa said:
Welcome. My son was diagnosed with Chiari in May and had surgery in June. Let me first say I am so sorry you are going through this. I have found this site to be very helpful. Being able to connect with others that understand Chiari symptoms is rare and people on this site have been very helpful. I will share with you some positives from my son's surgery. His vision has come back and is now better than 20/20. His fine motor skills are improving. The dizziness had gone away. I have found that pretty much no doctor knows or understands all the components of Chiari. It has been my experience that the neurosurgeon understands the surgery part and that is about it. We have to be advocates and educate our own doctors and ask them to do research on it so they can fully understand it. My husband is a family practice doc and is now teally learning first hand about the disease. I am pushing him to become an expert on it as so few physicians really understand the symptoms, surgery and post surgery issues that patients and their families face. I wish you the best with your journey. Stay positive, listen to your body, change doctors if you feel they are not taking things seriously because Chiari is serious.
Thanks for the reply-- how soon is your next opinion? I just don't know what route to take. Are neurosurgeons the best? What if they say "no it isn't that"?
b2wc said:
Hi Izzy,
Wellcome to the forum, I am new as well, I am sure you will find this group are very useful..lots of the members are veryhelpful..I am the same as you but waiting for my second opinion with another neuro surgeon..and so terrify what it may come?
Thanks, Lisa- wow, it sounds like you have done a lot for your son! I don't know if I can keep going to doctor's, it's so hard to trust myself, in light of their valid medical opinions"!!!! Thanks for the input~
Lisa said:
Welcome. My son was diagnosed with Chiari in May and had surgery in June. Let me first say I am so sorry you are going through this. I have found this site to be very helpful. Being able to connect with others that understand Chiari symptoms is rare and people on this site have been very helpful. I will share with you some positives from my son's surgery. His vision has come back and is now better than 20/20. His fine motor skills are improving. The dizziness had gone away. I have found that pretty much no doctor knows or understands all the components of Chiari. It has been my experience that the neurosurgeon understands the surgery part and that is about it. We have to be advocates and educate our own doctors and ask them to do research on it so they can fully understand it. My husband is a family practice doc and is now teally learning first hand about the disease. I am pushing him to become an expert on it as so few physicians really understand the symptoms, surgery and post surgery issues that patients and their families face. I wish you the best with your journey. Stay positive, listen to your body, change doctors if you feel they are not taking things seriously because Chiari is serious.
This is the second specialist agreed the result of the MRI scan, is just now to see another surgeon whether the operation is the best option as well as the impact after the surgery but the one the first surgeon suggested to me apparently the best in the UK..he is also sit in the Brain&Spine organisation as well as done lots of teaching and specialist in this field. But I am still scare what the result even if he his the best after the surgery because of the story I heard....
Izzy said:
Thanks for the reply-- how soon is your next opinion? I just don't know what route to take. Are neurosurgeons the best? What if they say "no it isn't that"?
b2wc said:
Hi Izzy,
Wellcome to the forum, I am new as well, I am sure you will find this group are very useful..lots of the members are veryhelpful..I am the same as you but waiting for my second opinion with another neuro surgeon..and so terrify what it may come?