I just needed a place to express my thoughts. I feel terrible complaining when I see so many on here are much worse off. I was diagnosed in Jan/11 Chiari 1 with 4-5mm so very small. I haven't seen another NL since the first one told me it was no big deal. My issue now is that the headaches are getting worse sometimes to the point of nausea and vomiting, I have numbness in my face and left side of my body and my vision is blurry, occasionally, I will stumble while walking.
My husband is such a great support, but he doesn't know what to do and now he is really worried because some friends of ours had their daughter pass away suddenly at age 33 and she had been complaining of headaches for 2 weeks before she passed. (I am 48)
I guess I just need to know that I am not going crazy. Sometimes I feel like I am making up the symptoms (I have been told that before when I had seizures) so I don't want to waste money going to the Dr, if I am just going to be told that there is nothing wrong with me.
Thanks for letting me ramble on. I am trying to cope with these things without resorting to whining or complaining because I really have it easy compared to a lot of people, but sometimes you just to vent your frustrations to somebody that understands.
First of all you are not crazy. The symptoms are real. I was also told that my seizures were not real (pseudo seizures) because you have to be actually having a seizure while being tested, the odds are very low unless you are having intractable seizures. They finally saw one during a test after 6 years.
As far as anyone’s symptoms and pain being worse then yours, who’s to say what is worse. We all have very different pain tolerances. I had decompression, duraplasty and laminectomy surgery in 2006 and am allergic to most all pain meds so I only given Tylenol and muscle relaxers for pain. My son has had an open fracture of his arm wher he was young and calmly came into the house and actually asked me if I thought we should go to the dr.
The size of the cm does not matter it is the symptoms and csf flow. You should try to find a ns that specializes in cm and knows this.
The headaches and numbness that you describe sound like the compound migraines that I have. I’ve not had a lot of luck with drs with these. But I do find some relieve from meditation and biofeedback because of my problems from pain meds and Triptan’s . I hope you find some relief and a dr that listens.
Barb
God I feel the same way sometimes. I was in a MVA 8 years ago and saw so many doctors and each one tried different things and nothing seemed to work. The only thing that helped was the pain meds and that was if I took more than what the doctor prescribed. It was the only way to get the pain to go away. Its phantom pain that nobody else can see. its hard to explain to someone the way you feel when they cant see the true pain. It drives me crazy/
So sorry you were blown off by your NL...Just my 2 cents.....at this juncture, I would suggest, highly to see a NS and remeber that in the Chiari world ...the size of the herniation DOES NOT MATTER....Mine was only 5mm and caused a long list of Sx's.
I agree as well with the folks that wrote b4 me.
YOU ARE NOT CRAZY..I hate that feeling.....I felt like I was being looked at by these docs as some bored housewife , who has nothing else to do but take up a new hobby....going to the doctors~ Finally, I was validated by a NS and I got a 2nd opinion in Boston..who 100% agreed with my NS....5mm can cause many Sx's and suggested decompression....I ended up having it done in my home state ...Rhode Island..where I was living at that time...4 yrs ago.
Keep the faith and keep us updated...you are not alone in this....we are here for you!
I agree with the above. See a NS who specializes. I had the same facial numbness and it has gone away post-surgery. I don't know why so many NL like to tell us we are crazy and making things up!
First, you are not going crazy. Just about everyone who has had Chiari had a Dr. tell them that there herniation "is no big deal". For a 48 year old, 4-5 mm is not "so very small". It is clinically very relevant. So, the question perhaps is not whether to go see another doctor or not ... the question is which doctor would be most helpful to go and see. You can save yourself a lot of time and hassle, at perhaps great expense, by going to a Chiari center that specializes only in Chiari like the ones in Long Island, Wisconsin, and Colorado. You might "role the dice" and go to a research university hospital near you who has a neurosurgeon who specializes in Chiari but you will be taking the risk of being dismissed again. With this disease, you have to really, really educate yourself and advocate for yourself. Since your husband is on board, he can help by educating himself and help advocate for you. A good place to start is watching some of the videos at this link: http://www.csfinfo.org/lectures ... I think that this one is especially good: "Chiari Malformation: A Name Which Leads to Unnecessary Confusion" but it is given by my surgeon so I am biased. Finding NLs and NSs who know a lot about this disease is very, very difficult. This is mainly because little is known about it and less is understood by the medical community. So, be intentional in researching NSs who understand the disease and NLs have performed a lot of surgeries. Your symptoms, in conjunction with your MRI results, certainly should make a knowledgeable NL or NS give creedance to the possibility of Chiari as a diagnosis. So, research doctors, find one who is knowledgeable, and make an appointment to see them. I have said it many times already on this site, getting a Chiari diagnosis when your herniation is between 3-7 mm is very difficult but it is worth the effort and expense to get to the proper NL or NS to guide you through this. Take care and persevere, Fr. D
Thank you for your input. I appreciate the information. I plan on researching to see if there are any Chiari centers in my area. I know that there is one NS in Washington that everybody seems to like, Dr. Ellenbogen, so I might take my chances at getting in to see him.
Fr. D said:
First, you are not going crazy. Just about everyone who has had Chiari had a Dr. tell them that there herniation "is no big deal". For a 48 year old, 4-5 mm is not "so very small". It is clinically very relevant. So, the question perhaps is not whether to go see another doctor or not ... the question is which doctor would be most helpful to go and see. You can save yourself a lot of time and hassle, at perhaps great expense, by going to a Chiari center that specializes only in Chiari like the ones in Long Island, Wisconsin, and Colorado. You might "role the dice" and go to a research university hospital near you who has a neurosurgeon who specializes in Chiari but you will be taking the risk of being dismissed again. With this disease, you have to really, really educate yourself and advocate for yourself. Since your husband is on board, he can help by educating himself and help advocate for you. A good place to start is watching some of the videos at this link: http://www.csfinfo.org/lectures ... I think that this one is especially good: "Chiari Malformation: A Name Which Leads to Unnecessary Confusion" but it is given by my surgeon so I am biased. Finding NLs and NSs who know a lot about this disease is very, very difficult. This is mainly because little is known about it and less is understood by the medical community. So, be intentional in researching NSs who understand the disease and NLs have performed a lot of surgeries. Your symptoms, in conjunction with your MRI results, certainly should make a knowledgeable NL or NS give creedance to the possibility of Chiari as a diagnosis. So, research doctors, find one who is knowledgeable, and make an appointment to see them. I have said it many times already on this site, getting a Chiari diagnosis when your herniation is between 3-7 mm is very difficult but it is worth the effort and expense to get to the proper NL or NS to guide you through this. Take care and persevere, Fr. D