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One Centimeter Colloid Cyst - Referral

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Old 05-15-2015, 06:55 AM   #21
Jabra Taweel
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These are the CT scans.

Last edited by Jabra Taweel; 01-26-2016 at 05:33 AM.
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Old 05-15-2015, 12:25 PM   #22
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Jabra,

That sounds like a good plan, and an ongoing check every year seems enough for the Doctors to track any growth. Sometimes we have to bow to their experience.

Now, the headaches. Here, a neurologist has Clinics to dx and deal with the different kinds of headache. If you still have them at any level, and the Doctors don't think the Cyst is the cause , try to ignore it in your dealings with them - don't mention it at all. Seek another cause for your headaches.

I know it is difficult, I have multiple symptoms that can be attributed to my Arachnoid Cyst, but Neuros here ignore them unless they are bending your skull, it seems. I have to keep my thoughts about my own Cyst to myself, or be fobbed off.

Dave.
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Old 05-15-2015, 02:24 PM   #23
Jabra Taweel
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Thank you Dave. I just don't want this thing to kill me. It is obvious that therebis no hydrocephalus, and I had these headaches for 5 years so I guess my doctor is on to something.
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Old 05-16-2015, 09:43 AM   #24
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Quote:
Originally Posted by Jabra Taweel View Post
Thank you Dave. I just don't want this thing to kill me. It is obvious that therebis no hydrocephalus, and I had these headaches for 5 years so I guess my doctor is on to something.
Hey Jabra,
I have to agree with Dave "...my thoughts about my own Cyst to myself, or be fobbed off..." The dr's can be experts in showing no empathy whatsoever. I have tried to query them about things before only to be 'fobbed off' and made to feel stupid. It turned out I had every right to be concerned, but they just brushed over things. The more I pushed, the more they pushed back and in the end everybody got ****** off. I found another Dr.
Try to take another approach, look at treating your symptoms. Exhaust all other avenues, if you can show that none of them have benefited in treating your symptoms, then the surgeon may look more favourably at relieving your symptoms surgically (if they can), but there maybe more risks from surgery than benefits. Each time they have operated on me, which is 5 times now, I've had an explosion of other symptoms/sensations/oddities that they call "recovery symptoms", but have lasted long after any recovery time. So surgery may not be the magic pill you expect, believe me.
I'd be trying to get an independent opinion. Show them the pictures, tell them the symptoms but 'try' to keep emotions from the conversation. I say 'try' as I know this is not easy at all, but some dr's do not handle emotions very well and will 'fob you off' as just being emotional.

Good luck
Merl1n
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Old 05-17-2015, 04:25 AM   #25
Jabra Taweel
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Originally Posted by Merl1n View Post
Hey Jabra,
I have to agree with Dave "...my thoughts about my own Cyst to myself, or be fobbed off..." The dr's can be experts in showing no empathy whatsoever. I have tried to query them about things before only to be 'fobbed off' and made to feel stupid. It turned out I had every right to be concerned, but they just brushed over things. The more I pushed, the more they pushed back and in the end everybody got ****** off. I found another Dr.
Try to take another approach, look at treating your symptoms. Exhaust all other avenues, if you can show that none of them have benefited in treating your symptoms, then the surgeon may look more favourably at relieving your symptoms surgically (if they can), but there maybe more risks from surgery than benefits. Each time they have operated on me, which is 5 times now, I've had an explosion of other symptoms/sensations/oddities that they call "recovery symptoms", but have lasted long after any recovery time. So surgery may not be the magic pill you expect, believe me.
I'd be trying to get an independent opinion. Show them the pictures, tell them the symptoms but 'try' to keep emotions from the conversation. I say 'try' as I know this is not easy at all, but some dr's do not handle emotions very well and will 'fob you off' as just being emotional.

Good luck
Merl1n
To be fair the doctors both said that it COULD get serious, but it most likely wont. They both said if it grew I will require surgery but for now everything is good. As for the headaches I don't know, still I will get to see another doctor in israel tomorrow since they have better doctors there.
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Old 06-08-2015, 04:01 PM   #26
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Does anyone know how to recognize a symptomatic colloid cyst from an asymptomatic one? The doctors say mine is asymptomatic but what are the chances in having headaches and discovering a colloid cyst.
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Old 06-08-2015, 06:20 PM   #27
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Hi Jabra,

Have you read the very informative and detailed Wiki page?

http://en.m.wikipedia.org/wiki/Colloid_cyst

I would also constantly badger your Doctors about a Dx and treatment for your ongoing headaches if they think the two things are unrelated. Headaches are not natural and need investigation.

Dave.
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Old 06-09-2015, 02:25 PM   #28
Jabra Taweel
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Quote:
Originally Posted by EnglishDave View Post
Hi Jabra,

Have you read the very informative and detailed Wiki page?

http://en.m.wikipedia.org/wiki/Colloid_cyst

I would also constantly badger your Doctors about a Dx and treatment for your ongoing headaches if they think the two things are unrelated. Headaches are not natural and need investigation.

Dave.
Yes Dave. I read the page many times.
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Old 07-22-2015, 01:17 AM   #29
Jabra Taweel
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So I went to see the doctor again today. He insisted it was stress and gave me another three months of xanax and elatrolet. He didn't want me to take an mri because he said it is still early and the cyst wouldn't have grown in four months.
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Old 07-28-2015, 12:28 AM   #30
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Hi there, I had a 12mm cc removed by craniotomy one year ago today. My first concern when referred to my neuro surgeon was how many colloid cysts has he actually removed over his career and I had not been convinced I was willing to have my surgery in another city. As it turns out all was well but the fact was that it did have to be removed. **
I do think you are doing the right thing by getting a second opinion. From what I have seen one centimetre is the largest it should get before extraction becomes necessary.
In the meantime, all the best, and keep us posted!
Carol from Canada


Quote:
Originally Posted by tomc View Post
Hi,

I have a one-centimeter colloid cyst. My doctor seems to believe that everything is ok--believe and all. I am looking for a second opinion with a neuro specialist who deals with these cysts on a regular basis. Rochester NY.
Thanks for any suggestions

Last edited by Chemar; 07-28-2015 at 09:58 AM. Reason: NT Guidelines
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