Migraines and high ICP headaches

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Migraines and high ICP headaches

Postby Peggy Dupnick » Tue Apr 09, 2013 11:43 am

Are these two mutually exclusive? Or can they both be going on at the same time? Not exactly the same time, I mean on days with different barometric pressure? I have a nonverbal autistic child who I think is having both pressure headaches and "migraines". They won't diagnose migraines because he can't talk. Yesterday when the pressure was "good for him" he clearly exhibited pain indicators (pressed forehead into table's edge, hard; also bit skin on knee). Has an MRI scheduled for April 16th, probably so the doctors can get me off their back about him, but also to rule out other causes. Any input would be appreciated.
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Re: Migraines and high ICP headaches

Postby syrinx48 » Mon Apr 15, 2013 2:19 pm

Thinking about you for tomorrow! Hope all goes well and that the outcome won't be too disastrous!

Annemarie
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Re: Migraines and high ICP headaches

Postby pmaxwell » Tue Apr 16, 2013 9:35 am

Peggy, since your son is nonverbal, you have to be his voice. Who better than the person who is with him day in and day out to let others know what is going on in his life. I am proud of you!
Together We Can...
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Re: Migraines and high ICP headaches

Postby syrinx48 » Tue Apr 16, 2013 11:25 am

How did the appointment go? I think very high of you, having a child with all these problems, and not knowing what he means or feels. When I worked as a nurse and a patient from another country who came for an appointment and didn't speak one of the most common languages it was also very difficult. I think you can compare this.
But as I said, I am curious to know if you were able to have a diagnosis!

Thinking of you,
Annemarie
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Re: Migraines and high ICP headaches

Postby Peggy Dupnick » Sat Apr 20, 2013 6:27 pm

Thanks for the support everyone! I still do not know the MRI results. When we went to Neuro at the end of March I was told NS agreed to order a MRI (have a witness, so I am not crazy). I called NS the day before the procedure to request a copy of the report to be mailed to me as soon as it is available. The secretary asked me to call back on Friday to remind her (OOOKay) Waited two days, called NS on Thursday to ask if any results were available. Silence. type, type, type, "No it isn't in our system yet." I asked if this was routine for being two days out. I was told, "Well, maybe radiology wanted another look at it. Or it could be in the NS's list of things to look at, (which the secretary had no access to)". So I called back on Friday and said, " I am calling to remind you to send me a copy of the report, as you asked me to do." Was told, "Actually NS didn't order that test, Neuro did." Why didn't they tell me that 3 or 4 days ago? Then the secretary says, "Neuro asked NS to look at it, but we didn't order it, they did." I found that strange, and concerning. Why would they do that if it was ok? Thyroid labs were normal and mailed to my home within two days of test. I told the NS secretary, "Okay, sorry for the confusion, I will call them." I called Neuro and told them that the NP ordered this test and I want a copy of it mailed to me AND that I wanted a verbal report that day (Friday) as I had been waiting several days for an answer and wanted one before the weekend. I left three, count them THREE phone numbers and had placed this call between 1:30 and 2pm. Did I get a call? NO. Why won't they talk to me???? If it's normal, fine tell me. I will be frustrated at not having an answer, but at least then we can move on to plan B. If it's not normal, tell me so we can DO SOMETHING to help my son!!! I think they are passing the buck, or that they just don't care. Sorry for sounding bitter, but I am tired of being dismissed and ignored. Very frustrated. You can bet someone is gonna get an earful on Monday!!!
Peggy Dupnick
 
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Re: Migraines and high ICP headaches

Postby Peachdejour » Wed Apr 24, 2013 12:12 pm

Peggy,
I know the feeling. I kept getting the run around like this from my doctor and then she wouldn't give me all the results. I would have to request a paper copy and read them myself because what she would tell me would be wrong. It's frustrating. Just keep calling.
Heather
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Re: Migraines and high ICP headaches

Postby Peggy Dupnick » Wed Apr 24, 2013 8:16 pm

I have some results, just not answers to all my questions. They found what they are calling an interval hemorrhage (possibly a hemangioma) in the thyroid; 3cm at the longest. Which sounds huge to me. Also mentioned it could be a protein build-up.. from where? I ask? Where? Syrinx is still shrinking (Good, not worried about that so much now.. haven't been for a year; seems to be the only thing NS is interested in talking about). The hemangioma inside L3 vertebrae seems to be stable or shrinking slightly. I still have some questions about some shots of the brain that might be something, not sure. Struggling to get calls returned and answers. Requested a referral to ENT or Endocrinology to investigate thyroid issues. Not freaking out yet, but still concerned to be a pain in the backside to anyone who won't talk to me.
Will let you know what else I find.
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Re: Migraines and high ICP headaches

Postby Peggy Dupnick » Wed May 15, 2013 9:59 am

Met w/ an Endocrinologist yesterday. My son is looking at having his thyroid removed. She said the mass is "pretty big" at 3cm and given my history of thyroid cancer it is probably best to just remove it. My son and I both have a predisposition to develop cancer:( Nothing scheduled yet, but please keep him in your prayers. He has been through a lot in the last few years and this will also be hard for him to deal with (nonverbal autistic, CM/SM, w/ many other medical problems).
Thanks.
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Re: Migraines and high ICP headaches

Postby Peggy Dupnick » Thu May 23, 2013 3:38 pm

Surgery scheduled for June 5th. Two weeks seems like a long time, but at least we have a date to shoot for. Maintaining reasonably calm status here at home, with meds approaching the right level and as little stress for him as possible. Please keep him in your thoughts and prayers for June 5th and the recovery period after.Thanks!
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Re: Migraines and high ICP headaches

Postby wendi » Mon Jun 17, 2013 10:00 am

Peggy, I just saw this, I hope your son is doing well after his surgery. This forum is not as active as it used to be. I wish you both well.

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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