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Should I start to worry again

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Jewishmother
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Post  Peter_sky Mon May 10, 2010 4:18 am

Hi,

Some may remember my posts about something that was found on my brain stem when I had an MRI done in March 2009. Well last week I posted that when I had a repeat MRI done last week that when I phoned for the results from the doctor, they said all clear, normal.

Well today I saw my Dr and it wasn't as straight forward, the report read, normal scan, the abnormality found last a year ago is completely unchanged and is unlikely to be of any clinical significance.


My doctor says there is no need for any further action as there has been no change, and the headaches are migraines, which she wants to try me on low dose Amitriptyline for a month to see if that helps, and a nasal spray Sumatriptan if I need it. Should I start to worry again, or should I trust what the Dr says and as the abnormality is unchanged should I stop worrying,

Peter
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Post  Ivy Mon May 10, 2010 4:30 am

Peter,
what should worry you? Do you feel that there's something wrong beyond the weird symptoms of migraine? In this case, I'd ask for a second opinion.
Instead, if you trust enough your doctor and if you think that the MRI was well done, I'd not worry. Worrying, anxiety, tensions are not good for migraine Sad

Take care
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Post  pen Mon May 10, 2010 5:06 am

Hi Peter,

I know it can be hard to accept things are "fine" when you dont feel fine, but really you are going to drive yourself nuts with this.
Migraine is never straightforward and most of us here struggle with weird unexplained symptoms sometimes which scare us.
You have to decide whether you trust the dr or not. If you dont, you need to find one you do trust.

I dont understand what your dilemma is. You said it wasnt as straightforward, and then said all is fine....
Well today I saw my Dr and it wasn't as straight forward, the report read, normal scan, the abnormality found last a year ago is completely unchanged and is unlikely to be of any clinical significance.

What is there to worry you? I think you need some treatment for anxiety and amitriptyline might help with this. I doubt it will help the migraines, but worth a try regardless. Your migraines will almost certainly be worse if you dont stop worrying.

Please try to find something to stop you worrying Peter, it wont help you at all.
It sounds as if NO you should not start to worry again. Smile

Take care Peter.

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Post  AngelTree Mon May 10, 2010 7:40 am

Peter,

I have some really rare health conditions, and my two cents is that if I were you I would get a second opinion. Not to scare you but I had to go to 5 cardiologist, and be remotely monitored three times, and then all of a sudden they realized my heart was pausing for 5 seconds at a time and I got a pacemaker with 5 days warning. Did I mention that I was 27?

That said, through this experience, I've found that doctors are human, that we expect a lot from them, and that getting a second opinion gives me peace of mind. If the second doctor agrees, great! then I can feel more confident in my treatment. If they disagree, then I have more options to think about and I might have just saved myself from a worse fate. I've also found that taking the time to talk to doctors in this process helps me to understand what I have better, and to have more info. that adds clarity to my decision making.

That said to me the most important thing is when something is wrong with my body, I get this intuition that something is just very wrong, and that's when I know to push for a different answer. But I've also been where the other people who posted are, which is that I have to accept that not much else new can be done, and sometimes recognizing this takes an attitude adjustment, as in trying to come to peace with what I got and that it's not going to go away. This second part to me can be very hard.

Hope this helps. It's just my experience to feel free to leave anything that doesn't work for you.

Peace,

Angel

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Post  charmed quark Mon May 10, 2010 8:26 am

Whenever a lot of imaging is done you find abnormalities. I had an incidental finding of liver cysts and spleen granulomas. They thought the cycst were just congenital but didn't know what the granulomas were. So they had me have an ultrasound every 4 months for 2 years. When there was no change they decided they didn't matter.

Same with your brain. Unless it is something like an potential aneurysm, what's the worry. You have some sort of atypical structural deviation in your brain. Even if it was directly causing your migraines, would it be worth brain surgery to fix it?

BTW - amytriptilin/Elavil is not for anxiety. It is an old-school antidepressant that is not used much for depression anymore. But it modifies the serotonin levels in the brain and is considered a prime treatment for migraines and pain. Many people have good results with this drug.

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Post  pen Mon May 10, 2010 9:08 am

We dont want to confuse Peter further of course, but Amitriptyline is no longer used by most of the more informed neuros for migraine, but as an anti depressant, (at least in UK). Although, not anti anxiety it can help with calming the brain if taken at bedtime.

I found it helped a little with anxiety, I wasnt depressed anyway, but no help at all with migraines.
There a re a couple of newer ones that are a bit better including nortriptyline.

I stand by my earlier comment. If you trust your doctor,stop worrying.
If not....find another, get a second opinion....
Gut instinct is everything sometimes.

Pen

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Post  Jewishmother Mon May 10, 2010 10:46 am

Peter - Do you know what the abnormality is? I know it makes me feel better to get specifics from my docs when my tests are not "normal". A lot of times docs just think you should trust them but I know the more information I have the more comfortable I feel about my diagnosis and treatment. Leslie
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Post  Brent Mon May 10, 2010 3:47 pm

From own experience never trust just one doc. Three neuros, three radiologists and one ENT said my sinuses are fine. It was until I found an ENT that specializes barometric pain that found a blocked maxilary sinus.

I could have believed any one of them and still be hurting today needlessly. Trust your gut and research as much as you can on your situation.
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Post  jwar Mon May 10, 2010 5:16 pm

I can't tell you what you should do, but I'll relay my own experience:

When I was 17 I suddenly started having wicked, prolonged "migraines". Anyway, I ended up going to the ER and they did a brain scan and found an "abnormality". Turns out I had a large egg-sized growth on my pineal gland. Many doctors said that it was nothing to worry about and that it wasn't causing my symptoms.

Fast forward to when I was 28 and suddenly I was having daily, unremitting, disabling headaches. The growth, as it turns out, had grown just a tiny little bit: 0.3 of a cm. And this point this thing was pretty damn large and I wanted to revisit the "don't worry" hypothesis. I went to a local neurosurgeon and he said it well could be the cause of my headaches, but that it was in an extremely dangerous part of the brain that no one would be willing to operate on. Then I decided fuck this, I want top university doctors.

I contacted neurosurgeons at Duke, NY Pres, UCLA, Johns Hopkins, etc. All of them agreed that it could be contributing to my headaches. So, I had a surgeon at NY Pres remove the damn thing. In 10 years, brain surgery had progressed enough to make it a far less invasive surgery, but some of the less skilled (for lack of a better word) neurosurgeons would have never been able to deal with the mass.

Anyway, I still get pretty bad migraines, but they're isolated events now. Before the surgery, I had 8 straight months of a NON-ENDING headache. Literally not a minute of relief. I was close to dropping out of graduate school and going on disability.

My point is not to scare you, it's to say: only you know your body best. I never believed that an egg-sized mass in my brain couldn't possibly cause me headache, but plenty of doctors suggested so. My other point is that you should get a second opinion, and I think you should get that opinion from the most advanced/well-respected neurosurgeon that you can convince to see you. It's your brain. Don't screw around.
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Post  Peter_sky Tue May 11, 2010 3:59 am

Hi

Thank you all for your helpful replies.

I will try and answer the points raised.

First I live in the UK, and have no private medical insurance or funds to see specialists privately. This limits me to the use of the NHS, the good thing it is available to all but to be 100% honest we do not have the same level of care as else where in the world. We live in a small rural city in the East Midlands and unfortunately health care is no where as good as in the South of the country. We are limited to only being able to register with one GP surgery as we have a catchment area in our area, there are three doctors in our surgery. I just wanted to show how differently things can be in different parts of the world and even different areas. To put things in perspective our local hospital did not have an MRI scanner until 2000!

My doctor will not entertain referring me for further test, or refer me to a specialist to review my scans again, so my hands are very much tied, although I did see a well respected neurologist who reviewed MRI scans last year, but I had funds at the time to go privately, but unfortunately I am no longer in that position as I am not able to work.


As for the results of the scan. The report reads; The small area of abnormality looks like either inflammatory or a ischemic area. The area is about 3mm.


I am hoping that as it has not grown or changed at all since the last scan done over a year ago then this has got to be good news. The other point is I have been told that to operate in the pons (brain stem) would not be possible so there is very little I can do.

Maybe I should just try and treat the pain, and presume it is just a migraine, afterall it feels like one, and I am used to migraine symptoms although it is only the last three months that they have become chronic daily?

Thanks again, Peter

PS below is the scan in question,



Should I start to worry again BrainMRI
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Post  pen Tue May 11, 2010 5:16 am

Hi Peter,

I live in your part of the country according to some "maps". I understand the limitations of the NHS.
I can serve us well, but we learn to rely on it and when we want to step outside, costs are prohibitive.
So yes it can be difficulties to get the treatment we would like.

I stand by what I said in my earlier post and knowing the difficulties of our health system.
I think gut reaction is important. If you cannot stop worrying, you must somehow get another opinion.
But I know this is very difficult and can take a long time, during which you will still be anxious.
Otherwise, try to ease your anxiety, it will make the pain worse.


One other thought Peter. And I have no affiliation here, but are you a member of Migraine Action?
It isnt expensive and they can be very supportive and even suggest specailists...
Worth joining.

Good luck Peter, try to stay calm

Pen
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Post  Ivy Tue May 11, 2010 7:45 am

Peter,
I live in an European Country where Healthcare is managed more or less in the same way. It gurantees cures to all citizens, but the quality of the cares varies a lot from area to area. The private practice is very spread but it's of course expensive.

I don't know if you can do it in the UK, but here we can chose to be visited in any public structure/hospital of the country if we ask.

For my thyroid I did not absolutely wanted to be operated in the town where I live so I applied for a visit in another city and I was booked. Can't you do something similare and see some hospital in London for instance? Maybe there doctors will give you more up-to-date and professional answers and advice...

Take care
Ivy
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Post  charmed quark Tue May 11, 2010 8:31 am

These incidental brain findings are common. I have high-end insurance here in the USA and as far as I can tell, the proper procedure is to reimage and see if there is any change. If not, it is deemed a non-active lesion. That seems to be what happened for you.

But it certainly wouldn't hurt to get a second opinion.

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Post  moominamy Mon May 17, 2010 6:44 am

Hi Peter

You could ask your neuro to refer you to the National Hospital for Neurology and Neurosurgery in London. They are one of the very best places to be seen in the UK and are a tertiary referral centre (roughly, primary = GP, secondary = hospital care/clinics, tertiary = where the hospitals/clinics refer to when they aren't sure what to do!). They have a long waiting list but you can still see your current neuro in the mean time.

You can choose to be seen at any relevant clinic in the UK if referred somewhere, so if your GP refers you to a neurologist you can choose which one to see as long as you are prepared to travel. This is a useful source of information http://www.chooseandbook.nhs.uk/patients

As to the UK not having the same level of care as elsewhere in the world, I beg to differ. I think the difference is mostly that UK patients are unaware of what is available or how to access the care they need. This is probably due to the public funding and old style paternalistic attitude towards healthcare that somehow continues in some areas. As I see things in the US people are more invested in where their own hard earned cash is going and so research thoroughly and are more persistent with their care options. And because more people are doing this the culture is more open and used to it, so the information is easier to access.

I have a pineal cyst (VERY interesting to read your story Jayme, thanks for posting). It hasn't changed in size over the 6 years between my MRI's, but it does still worry me. My neuros are not very bothered by it as they would only consider operating if it grew, as the risks of surgery are still pretty high.

So if you are still worried you can ask for another opinion and there are options about where you can be seen. But also be aware that migraine is a diagnosis of exclusion, there is no specific test for migraine. So while drs can rule out possible other causes of your symptoms if they all come back negative migraine is a very likely culprit. My symptoms do often sound similar to yours and I have been through a barrage of tests for things, and still my diagnosis is migraine. But that doesn't automatically mean yours is too, so do what you need to to put your mind at rest.

Take care

Amy

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Post  Peter_sky Mon May 17, 2010 7:52 am

Thank you for your replies.

I have been given a follow up appointment for this Thursday at our local hospital. It is the clinic that reviewed my headaches about a month ago.

I shall go prepared with the relevant questions, and find out what my options are. Also I shall ask for a second review of my MRI scan, it is a half hour consultation so with luck I should be able to find out more.

I can not say I have full blown migraines every day, just mild temporal pain, most days. The pain is annoying and does worry me but does not warrant the use of pain meds if that makes sense, my full blown migraines are now far fewer and normally not so intense, but still pretty bad at times.

Peter
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Post  estre004 Tue May 18, 2010 9:18 am

Peter - I'm a little late on this. I hope you had a successful Thursday visit. I just wanted to say that worry will not solve anything. So, just not to worry is easier said than done. I would get another opinion just to stop the worry monster. :afraid:

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Post  Peter_sky Thu May 20, 2010 12:36 pm

Hi,


Back from the hospital appointment, re my head pain.

They looked at my MRI scan again, and all they could say was that there was an incidental finding, and are often found, and he felt that this was nothing to worry about and it had nothing to do with my headaches.

He said my description of my headache was a classic description of migraine, along with daily headaches and/or chronic migraines.


However he did say that my blood pressure was high and should be treated, it was 200/110, he thought this in its self could contribute to the headaches, although he still thought by my description that migraine was the main cause of my symptoms. He reviewed all my hospital records going back ten years and noted I have had elevated blood pressure on each reading, 20 in all.
He said he accepted that there was a certain amount of white coat syndrome involved as I am anxious in hospitals, but even so this could not account for the continuing high readings 200/110 to 166/90. He also reviewed my thyroid tests done over the last few months which are normal. I read my BP on returning home and it was 150/90 so not so bad, so I shall monitor it for a few days.

As for the migraines he wants me to see my GP for treatment, so no real answer there.

Peter
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