I was diagnosed with Chiari Malformation Type 1 when I was 15-- I suffered from chronic daily migraines (debilitating) since I was at least 4 years old but they began becoming worse and worse with accompanying symptoms since age 10. Symptoms include nausea, extreme fatigue, pain in the eye, horrible necK pain, back pain(which was diagnosed as being caused by a tethered chord, which was operated on-- but pain still persists)-- I also have visual disturbances, muscle pain, memory problems (overall cognitive def.) & sensitivity to light and sound. Now no one thinks that my Chiari is the only problem-- I only have a ~4mm measurement (the cerebular tonsular ectopia)-- and most doctors have said this is because (thank God) I have a very large foramen magnum and therefore I have "extra room"-- so doctors think that doing the decompression surgery would not fix everything...they think there is a much larger problem. I have had MRIs looked at... I have had catscans... I am in pain everyday of my life and I am praying that maybe some new mind will care enough to maybe look at my symptoms in a new way-- and see if they can help--I am almost 22 years old now and this pain is something I can no longer handle- my dream is to become a neurosurgeon... And I need to be healthy to achieve everything in order to arrive at my dream's door.Thank you,Alexis
Person's Gender: Female
Person's Age: 22
The Diamond Headache center
Neurologists (quite a few)
Pain Blocks (unsuccessful )
Hi. I'm online and happy to answer your question today.
Good Evening Alexis. I'm sorry to hear about all the difficulties you have been going through over the years. I think you would make a great Neurosurgeon....as long as you don't mind 14 years of additional training after Highschool ;)
Ok. Well, it sounds like you have spent a number of years trying to get to the bottom of what is going on. I am sure that your previous doctors have thought of, and ruled out, all of the common and easily treatable conditions that could be causing your issues. Would you say this is a correct statement?
Great. What are you studying?
Chemistry is a lot of fun...and still a good major to get all the premed required courses under your belt. But, we digress :) They have also better evaluated your Chiari malformation and figured out that doesn't seem to be the entire issue at this point....
Well, what is the next step you can take?
I think it might be time for you to take a very difficult, and bold, step to see if you can get some relief. It seems obvious to me that your current doctors have reached the bottom of their bag of tricks and, yet, you are still having these problems. Is this something that I'm going to be able to figure out using "chat" as my only diagnostic tool? Of course not....I'm good, but not THAT good lol! I do, however, think I can point you in the right direction.
It sounds like you have been receiving good care from very qualified physicians without any significant lasting improvement in your condition. At this point I think the best thing you can do would be to gather up copies of all your medical records and travel to a large University Teaching hospital. At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.
Does this make sense to you? I realize that during the school year this would be very difficult for you but summer is just around the corner and now might be a great time to go down this road. What do you have to loose at this point?
Also, if financing is an issue, many of these University Hospitals have programs in place to help with the bills, either with deep discounts or outright free care if you are seen by some of the doctors in training along with the Professors.
Let me see if I can help you. What large city are you near/in?
Well, there are excellent teaching hospitals in both Cities.
Do you have a preference?
Ok. let me check....
I know Northwestern Hospital, which is one of the primary teaching institutions for University of Chicago Medical School is a world class place. Here is their contact info:
A friend of mine trained there many years ago I know for a fact that they have a program to help people like yourself who have complex medical issues and financial issues. You should give them a call at the number listed at the webpage and I'm sure there will be someone you can talk to about a consultation.
When you call tell the operator that you want information on help with getting care as an uninsured patient who has a complex issue and needs help. They will point you in the right direction.
My pleasure. Good Night and best of luck to you :-)
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It was a pleasure to help. Let me know if I can answer any other questions for you. Have a great day.
I was just thinking about you and wondering if you had a chance to contact the folks at Northwestern Memorial Hospital and, if so, how things are going....