I found this amazing website really quickly and only made a profile today so please bear with me if I commit any faux pas. My husband and I are brand spanking new to this and his VERY recent diagnosis so we both have no idea what we are getting into here.
A little back story: My husband started experiencing SEVERE migraines that we originally were told were cluster headaches by the ER docs but thankfully, he only had an episode about once a year. However recently, within the past few months, he cannot raise his heart rate without almost immediately triggering one of these debilitating migraines so he got an MRI. The MRI showed that basically his brain was being squished and coming out a little through his foramen magnum. So we went to a neurologist and he diagnosed him with Type 1 and reassured us that it was no big deal and prescribed him Propranolol, Indomethacin, and then Thorazine for when he might have another terrible migraine so he would not have to spend 6+ hours at the ER. The doc said that he would need to take these meds for probably a year and after researching these drugs and Chiari Type 1, it seemed to me that surgery would probably be his best option. He is active military who cannot PT and this condition is most definitely affecting his quality of life in a very negative way. My question is, is our current doctor considering the best available options for him? And the meds he's taking sound very dangerous if taken long-term like he described. My husband is only 29, I don't want his body unnecessarily compromised with unneeded medications.
Please consult a Chiari specialized NS. With quick elevating heart beat it makes me think POTS or some other type of dysautonomia. As for the meds the NS should be able to comment on that. I take propranolol for my dysautonomia and it helps a great deal. I’m sorry this was the answer to the horrible symptoms, but at least you have something to point at!
First, welcome! Second, I agree with the others about seeking out a neurosurgeon. I am currently in the position of finding a Chiari specialist who can take a look at my mris and give me a second opinion. I was diagnosed last spring and just this past month was told that I now have bulging discs and a syrinx in the middle of my back. I wont see the neurosurgeon until the day before Thanksgiving. But yes, definitely seek out a specialist. I personally believe that making a list of questions always helps when going to see a specialist of any kind. And thanks to everyone on this site I have a few specific questions to ask. But never fret to ask ahything in here. That is what we are here for! We all have been through different routes and medicines that someone in here will have an answer for almost any question. Its like another family in here, we try to help each other out. We are the support we need when nobody else understands.
Geez, what if he winds up in the ER?? do they transfer him to a VA hospital?? Find out, maybe that would be the way to go if it is a back door. Go to the ER next time he has symptoms & explain his situation as well as you know. I have had such a rough road finding someone qualified to deal with me with my crappy insurance, but given the ignorance in the medical community about our condition, I fear for him getting to the proper people
buglady said:
Thank you for your suggestions, however we cannot look for a specialist since he is in the military. He must be referred by his PM on base to any doctor for literally EVERYTHING and they only referred him to his current neurologist. If he chooses to see a specialist without a referral, then we have to personally cover any and all of those expenses. Which honestly, we are not in the position to do so.
I do however really like your idea about keeping a detailed journal about his changing symptoms. I will have to force him to do it but I think it will be well worth it. Thank you so very much for taking time out your probably very busy schedule to offer advice and words of encouragement. It definitely gives me more hope than before I found this website!
Depending on how much you want to rattle cages, there are many times active duty military are cared for outside the military structure if the referring MD feels that expertise outside the available MDs is needed. My experience has been that, if a patient comes in with more data than the treating MD(and reading through this site will give you more information than most primary care MDs(or general neurologists) know about Chiari), and then specifically requests a referral to a Chiari expert, it is almost always granted. Truly, a general neurologist doesn't want to be responsible for a diagnosis with which they are uncomfortable. Once the referral is made, a letter of agreement is made by the specialist and TriCare.
So, I would suggest you try the medical regimen for a few weeks. If it works, wonderful(and you want to document failure of medical management prior to considering surgery). If it fails, you want to know which specialist would be willing to see your husband and has worked with TriCare in the past. Calling the offices of Chiari specialists in TX should get you that answer.
buglady said:
Thank you for your suggestions, however we cannot look for a specialist since he is in the military. He must be referred by his PM on base to any doctor for literally EVERYTHING and they only referred him to his current neurologist. If he chooses to see a specialist without a referral, then we have to personally cover any and all of those expenses. Which honestly, we are not in the position to do so.
I do however really like your idea about keeping a detailed journal about his changing symptoms. I will have to force him to do it but I think it will be well worth it. Thank you so very much for taking time out your probably very busy schedule to offer advice and words of encouragement. It definitely gives me more hope than before I found this website!