Worried Sick about 18-year old daughter!

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alohamomof3
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Date Joined Oct 2008
Total Posts : 13
   Posted 10/27/2008 8:16 PM (GMT -7)   
Hi -

My daughter started having chronic headaches in August - we had her get an eye exam (normal), and then had her see her regular doctor - she put her on a preventative med called Propanolol - it doesn't seem to be helping, and then 2 weeks ago she started seeing black spots - the doctor then decided to order an MRI - she had the MRI, and Friday I was told the report was Normal - yay! We had a follow-up (per her dr) with a neurologist scheduled for this Wednesday . . . . . then, today, her doctor called to say that another radiologist (different from the radiologist who read the report on Friday, and said it was normal) looked at the report and also said "normal" except that there was a small area he could not see very well, so now they want her to have another MRI w/contrast - (they put a liquid in an IV, which will highlight anything suspicious on the MRI) this is sheduled for Wednesday morning - needless to say, my daugher and I are pretty upset about this - her doctor is concerned because the medicine should be preventing her headaches and it's not - she told me today she's been getting them daily - the odd thing is, though, they aren't preventing her from daily activities! (ie, working full-time, going shopping, going to dinner with a friend, etc.)

Any thoughts on this would be great!

alohamomof3

auntcici515
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Date Joined Oct 2008
Total Posts : 3
   Posted 10/30/2008 5:24 AM (GMT -7)   
What other symptoms does she have. I don't know how much you already know about migraines, but they are usually on the one side of the head. Light & noise sensitive. My auras are blurred vision, flashing rainbow spot shaped kind of like a C and it doesn't go away when I close my eyes. My upper neck even starts to hurt. I can also feel dizzy. Sometimes I get all these symptoms and sometimes I might only get 1 or 2. Stress and Sinus headaches are a big trigger for me. The doctor needs to switch her meds if they aren't working, because every person is different when it comes to migraines and that is why they are so hard to treat. Ask for a medicine she can take when she is getting one. I was on Elavil as a preventative and then I have Relpax when I get one (no other meds worked). I was starting to get them about 5x a week. I drink 2 cups of caffienated coffee every day to help prevent them. Some people caffeine helps, some it makes worse. I have also downed a hersheys chocolate bar and gulp 1/2 can of soda to help get rid of a migraine. Really start looking for what triggers it. Foods, stress, allergies. I know it's a pain, but have her right down everything from that day she had one. Might find a common trigger. Preventing them is a big step. Mine started out has ones I could work through. Even though it hurt so much I still did all my activities. Then over the years they got worse to were I was in bed in a very quite and dark room. Hope this helps. I think the MRI will come out just fine.

Cici

migrainern
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Date Joined Oct 2008
Total Posts : 9
   Posted 11/1/2008 9:54 PM (GMT -7)   

As a RN and a migraine sufferer I can tell you not to panic yet. You may just be at the start of your journey. Mine has been going on for seven years and to date has not really been treated with meds but I am not the norm and still believe in the medical establishment. Some of the main points that I have learn in my long journey is that not all migraines (if that is what she has) are all vascular only in cause so propranalol which is a low blood pressure med may not be the cure. Many are more like seizures or hyperactivity goining on in the brain and this is causing the nerve endings to flare in pain and that is why antiseizure meds work well to control the headaches. Some patients need a combination of both. Maintaining good communication with you doctor and be realistic to the fact that it may take  long time and a lot of experiementing with several drugs to find the right combination for her. The great thing is that once the combination is found, her life will go on as before. There also has been great advancements in the area of abortive meds the stop the headache as it is coming on if the preventives are working. These new drugs are not narcotics so she can function normally. This is another important discussion to have with her doctor. I hope that the information that I have provided was helpfull and if you have any more questions, please don't hesitate to ask. I feel that I have been given this condition for a reason and if I can help even one person not have to go through what I have I will have been worth it.

Kim


alohamomof3
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Date Joined Oct 2008
Total Posts : 13
   Posted 11/2/2008 10:32 AM (GMT -7)   
To Cici and Kim - thank you both for your replies to my post -

Update: My daughter had the MRI w/contrast on Wednesday (as I said in my post from Monday), and Friday I spoke with the doctor and he said he was calling with good news - they had 3 radiologists look at the MRI w/contrast and they all said normal - they did, however, see scar tissue (?) - he asked me if I remembered her ever having a fall or getting an infection of some sort when she was younger - off the top of my head I couldn't think of anything - he said those types of things would show up as scar tissue on the brain - he said they also refer to it in the report as "non-specific white matter", and that the final report will say to follow-up in 3-6 months with doing another MRI to make sure there are no changes - we see a neurologist on Wednesday - I am hopeful and anxious at the same time that she will be able to help us get to the bottom of her headaches -

After speaking to the dr, later in the day, I spoke to my husband, and we were remember her learning to walk, having chicken pox at 3 years old, etc. I suppose any of those things could have caused scar tissue!?

Kim, since you are an RN, I am wondering if you might be able to answer a couple questions I have -

1. Why would scar tissue change over time (regarding the follow-up MRI in 3-6 months)

2. Could a tumor be mistaken for scar tissue or are they 2 obviously different things on an MRI w/contrast?
(FYI, I deal with health anxiety, so this has been a roller coaster for me these past 2 weeks!)

Also, I'm starting to think these headaches aren't migraines, because she is getting them daily and I'm under the impression from migraine sufferers I've talked to that they don't get them daily, even though a migraine itself can last 2-3 days. Also, she has been able to do her daily activities without interruption, ie., working full-time, going to dinner with friends or her brother and sister, etc. ??? I am concerned about the fact that the propanolol (a preventative) doesn't seem to be working at all, but I am not going to mentally "throw in the towel", as this is the first med they have tried, and I'm sure there are many, many more out there to try for her.

Any thoughts would be great!

supermom3 smhair

migrainern
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/2/2008 7:10 PM (GMT -7)   
Hi, those are all very good questions that you have come up with and please remember that I am just a nurse not an MD but will try to give the best answers as I know them. As to the first one, the change in the scan, if I read your post correct the first one was done without contast and the second one with. This would indicate to me not necessally a change but just a better picture. When contrast is added that is a die the is shot through the blood vessles and gives a clearer picture of solid objects in the brain. That is why if before the they use it the see "something suspisious" usually a shadow, they will ask for the contrast to get the clearer picture. As far as to truely being a tumor and being missed I would say very unlikely. Tumors or masses in the brain when the contrast is added show up as a very dack almost black spot on the films and are very hard to miss. My husband had one in his spinal cord and even he with no medical training was able to point it out on the films and it was not very large. Radiologogist spend their whole day doing nothing but reading films to look for the worst so if it was they they would find it for you. To the third questions the daily headache there is a type of headache called chronic daily headache and most neurologist do put it in the migraine class and treat it the same. It may have some tension componets to it and thats okay too they can work with that. I know alot about this because I have migraines daily and there is a post on this site about constant head pressure that has 4 pages of posts with people suffering daily pain. Again please don't let me scare  you just because myself or a few others haven't found help does't not mean that you daughter wont. I believe with every disease there are going to be us rare few that medicine doesn't work for but I still believe 100% in the medical establishment and continue to fight for the cause that new medications and treatments will come our way too. Like you said don't throw in the towel yet there are 100's of drugs to try and relief for 95% can be found. wink

alohamomof3
New Member


Date Joined Oct 2008
Total Posts : 13
   Posted 11/2/2008 7:30 PM (GMT -7)   
Hi Kim!

Thanks for your most recent reply! The MRI she had on 10/23 (without contrast) was normal according to the 1st radiologist who looked at it. They happened to have a 2nd radiologist look also, and he said normal as well, but there was a small area that he had trouble clearly seeing, so that is why she had another MRI (with contrast) on 10/29 -

We then got the call on 10/31 that 3 radiologists looked at the 2nd MRI (with contrast) and they all said normal, but mentioned seeing a bit of scar tissue on the scan - I don't mind having her get another MRI in 3-6 months, but I didn't realize that scar tissue could change - (they said 3-6 month follow-up to make sure there are no changes?)

idea

thanks again!
alohamomof3

migrainern
New Member


Date Joined Oct 2008
Total Posts : 9
   Posted 11/7/2008 5:25 PM (GMT -7)   

As far as I know scar tissue doesn't change. They are probable looking more for changes due to the headaches then at the actual scar tissue. If there is any changes in the scan while she continues to have the headaches, then they know that it is not just migraines but possibly something else and they need to expore other options and treatments. I too had follow up MRI's to rule out MS. MS will show up as changes where migraines wont. Don't fear though, my friend who has MS had spots on her first MRI as well so I didn't fret it when they told me they wanted me to repeat mine due to me fainting and having eye issues that they found could go either way. My first and since MRI's have all been clean. You will find doctors are overly cautious and thats better then them missing something big right? I am sure that since they didn't see anything on this one she just has migraines and the next one will come out just the same. If you have any other questions just let me know and I will be glad to help in any way I can.

Kim


alohamomof3
New Member


Date Joined Oct 2008
Total Posts : 13
   Posted 11/7/2008 6:22 PM (GMT -7)   
Hi Kim!

Thanks for your reply!

We had a neurologist appt on Wednesday, (11/5), and the neurologist tried to reassure us as best she can (she said the only way to know 100% what the white area is would be to have a biopsy!) that it is just non-specific white matter and to have a repeat MRI with contrast in 6 months.

I don't know if you are at all familiar with reading MRI reports, but I wanted to know if you could interpret this:

An area of increased signal intensity (?) in the right frontal region persists. This measures about 8 or 9 mm in diameter and is seen just lateral to the right frontal horn. With Magnevist enhancement there is no contrast enhancement in this area or elsewhere in the brain. (no contrast enhancement is good, right? I was under the impression that a tumor would "light up" on an MRI)

This could represent a microvascular (?) lesion or perhaps a solitary multiple sclerosis plaque. Old trauma could have this appearance. An inflammatory or infectious lesion could possibly have this appearance but the lack of contrast enhancement tends to rule this out.

The neuro thoroughly examined our daughter and asked her a lot of symptom (yes or no) questions. She feels very confident that our daughter has been dealing with "classical or aura" migraines, and she has started her on Topamax.

Any thoughts would be great! I will understand, though, if you feel uncomfortable giving information or advice on the report - I am just wondering in this scenario if we should get a second opinion. She doesn't feel the "non-specific white matter" lesion has anything to do with the migraines - it's just a coincidence - I guess I am not looking for a 2nd opinion on the "migraine" diagnosis, but maybe on the MRI finding more so.

Thanks!
alohamomof3
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