September 08, 2010, 02:16:10 PM

Author Topic: My story.....up till now  (Read 836 times)

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Offline Babysox2003

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Re: My story.....up till now
« Reply #15 on: February 16, 2010, 11:52:39 PM »
hi all, thank you for all your words of encouragement and advice. I went to see my gp today for some painkillers and he gave me a thorough examination, rang and spoke to an on call neurologist who advised me to go to a&e as the quickest way to be seen by a neurologist. Had a ct scan which came back normal but now in hospital waiting to have another mri scan on my brain and spine. Hopefully will see a neurologist this week and get a diagnosis! Will keep you all posted. Hugs, Mandy xx
Diagnosed with Chiari 15mm herniation Feb 2010

Offline Chris

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Re: My story.....up till now
« Reply #16 on: February 17, 2010, 12:52:55 AM »
wow, that was all fast ;) Good luck hunny!

TC

chris
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline Babysox2003

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Re: My story.....up till now
« Reply #17 on: February 19, 2010, 07:27:50 PM »
Hi all, quick update. Home from hospital tonight thank goodness.....diagnosed with a Chiari malformation of 15mm but my headaches, tingly sensations, numbness, neckache, dizziness etc are down to chronic migraines!!!! So I have been prescribed some epilepsy tablets that are good for migraines apparently. Had a second MRI on brain and one on spine which showed no change. Had a CT scan that showed no fluid build up which is good. Still going to see a neurosurgeon in March because I am still not 100% sure that my symptoms are down to migraines. Will have to see if the tablets work at all. The first doctor I saw told me that 10% of people with a CM don't have any symptoms at all and that I shouldn't have looked it up on the internet. She made me feel about 1/2 inch tall and like it was all in my head!! Silly woman....was really angry with her. Thank you all again for all the lovely words. Hope you are all feeling well. Love Mandy
Diagnosed with Chiari 15mm herniation Feb 2010

Offline Chris

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Re: My story.....up till now
« Reply #18 on: February 19, 2010, 11:11:12 PM »
How many times have we all heard about migraines and epilepsy tablets......only to find a few months later that its Chiari related?

See if you can get her to write it all down and sign it.............. then when you see your NS roll it up and then go and shove it where the sun dont shine???????

I had a herniation of 17mm and had all the symptoms that you have....guess what? It was Chiari............

My advice is dont take the epilepsy meds.........seriously!

Chiari causes pressure on your brainstem............... pressure onthe brainstem = tingling and numbness and headaches............. taking epilepsy meds will do more harm to your body than good.

No fluid build up is cool.....doesnt mean that the fluid in your skull due to a 15mm herniation isnt under pressure tho???? Skull under pressure = headaches!

When then fkn hell will these medical "experts" understand and start giving patients the correct bloody diagnosis and treatment????

I really do apologise for my language, but these idiots really do make me want to spit with anger!

You have been given an absolute bullsh** answer from someone who obviously understands bugger all about Chiari and its symptoms and effects................. the evidence that you have presented is an obvious and basic classic sign of Chiari yet they have prescribed a drug for you which has the potential to do you more harm than good.

Please get a second opinion before you take the advice of this fool.

10% of patients with Chiari show no symptoms? How the hell do they know that? There isnt even enough information to give accurate details of how much of the population suffer with Chiari?

To get that figure, they must have MRI scanned the entire population, then divided the number with a hernation by the number that had a headache?????? Absolute bollocks!

They should be struck off the medical register for giving you such crap!

sorry, but have heard this too many times.
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline Chris

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Re: My story.....up till now
« Reply #19 on: February 20, 2010, 06:07:59 PM »
apologies for my rant...... I have just heard too many of the same story from medical professionals who havent got a scooby.
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline Babysox2003

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Re: My story.....up till now
« Reply #20 on: February 22, 2010, 06:54:43 PM »
No worries Chris about your rant, I felt pretty much like that myself after speaking to the first dr who basically dismissed me, spoke to me like a child and made me sound like it was all in my head!!!!
I am seeing a neurosurgeon next week (privately through my husbands work health insurance) who apparently has some interest in Chiari so hopefully I will get some answers. If he says it is migraines then I suppose I will have to accept that even though I don't believe its migraines myself. Too many symptoms that go with chiari for my liking!!!!
Thanks for the advice and support and hope you are well yourself and not suffering too much. Love Mandy x
Diagnosed with Chiari 15mm herniation Feb 2010

Offline Chris

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Re: My story.....up till now
« Reply #21 on: February 22, 2010, 07:21:02 PM »
Hi Mandy. I really am glad that you are getting a second (Better) opinion and hope that they get to the bottom of it for you.
TC

Chris
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

Offline Babysox2003

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Re: My story.....up till now
« Reply #22 on: March 04, 2010, 06:48:41 PM »
Well, off to see the neurosurgeon at 7.45pm tonight so fingers crossed that he gives me the right kind of advice!!! xx
Diagnosed with Chiari 15mm herniation Feb 2010

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Re: My story.....up till now
« Reply #23 on: March 07, 2010, 05:17:03 PM »
Hi Mandy,

Can i ask were the epilepsy meds 'Topiramate'? If so can i just say that i have been diagnosed as having a 10mm Chiari Malformation but also suffering from 'chronic migraines with aura'.  Because of that i was given the epilepsy meds which i do have to say i totally disagree with Chris..... (Sorry..!!!) lol

I have suffered with migraines for years..! Its horrible BUT they are different to my chiari headaches however they DO feel very similar and the only way i can tell them apart sometimes is the fact that i get an 'aura'. Since i started on i the topomax my migraines have gone from every 2 days to.. well in the past year i have had 2.....!!

If you research the drug its amazing for 'some' people and i am just so glad that it has worked for me. I also take Imigran nasal spray if i do get a migraine but what i am trying to say is it IS possible to have migraines AND chiari and i am actually hoping that since having had the surgery that they will reduce even more but my GP wont let me come off the topomax until i am 100% strong so i will let you know when i do!!

One thing i do agree with though and that is I am glad you agree that the first opinion was a bad one and that you are getting a better one!! As soon as they saw my flow was restricted i was offered surgery but my NS told me that migraines have never been linked with Chiari but also they havent not been linked either..? Its a case of no promises but we can hope....

I hope you had a better 2nd opinion!!

xx
Diagnosed CM June 09, 10mm Herniation and Decompression 25th November 2009.

Offline Babysox2003

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Re: My story.....up till now
« Reply #24 on: March 07, 2010, 09:31:46 PM »
Hiya, I went to see the NS last Thursday and he really did put my mind at ease. I have a 15mm ACM type 1 which I have probably had since birth.
The epilepsy drugs were Topiramate (Topamax). I asked about coming off them and the NS said were they helping my headaches, when I said no he then said yes you may as well come off them then. I feel better all ready just for dropping the dose down. They really did make me feel tired and zombie like lol.
I have been told that I can have surgery but I have decided that because my symptoms don't seem too severe I am going to see if I can cope without surgery. I am due back to see Mr Robertson in 6 weeks and will discuss surgery again with him then.
I think that I was also making myself feel worse worrying about it all. I was off work poorly last week from Tuesday afternoon as I could hardly function and just spent Tuesday afternoon, Wednesday and Thursday sleeping......
I do know what you mean about migraines being different from chiari headaches and I do get maybe one really bad migraine a month where I am vomiting and the pain is so intense I normally end up lying on the bathroom floor crying!!!!
I really am glad I went to see Mr Robertson and do feel so much better. Am back at work tomorrow and hope to try and get some level of normality back and cope with my headache, neckaches, dizzy and off balance spells and nausea somehow with medication and maybe relaxation or diet.

Thanks all and hugs and tc xx
Diagnosed with Chiari 15mm herniation Feb 2010

Offline Chris

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Re: My story.....up till now
« Reply #25 on: March 07, 2010, 10:00:20 PM »
Great news..... looks like you have a plan now and thats a great big positive ;) Good news about coming off the tabs too and glad that you feel better.

The only reason that I made my comments in an earlier post were because you had not yet had this level of diagnosis, and from speaking with many other people, they have often been prescribed all kinds by mistake.

Laura hunny, you know you can disagree with me any time, thats why this forum is a brilliant place, we can all offer a balanced view ;) Still love ya :)
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com

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Re: My story.....up till now
« Reply #26 on: March 10, 2010, 11:04:17 AM »
I am so glad that you have had a better consultation Mandy and that you are feeling better now!! xx

Chris! If we didnt disagree once every 3 months then i would REALLY start to worry about our friendship...! ;) lol xxx
Diagnosed CM June 09, 10mm Herniation and Decompression 25th November 2009.

Offline Babysox2003

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Re: My story.....up till now
« Reply #27 on: March 12, 2010, 09:36:40 PM »
You guys all make me smile...this forum is so comforting :-)...thank you.

I went doctors tonight for some painkillers and was also told that my spine MRI showed that I have two misplaced discs which could also be causing my neck pain so I am now unsure if it is the chiari or the misplaced discs!!! One is in my neck area and one lower down.

I also apparently have some fluid left on the right side of my brain from when I was a baby lol....that shouldn't be there but isn't a problem. The doctor just said it was very interesting!!!

Have had a fairly good day today, not as good as yesterday but not bad thank goodness.
Hope you are all well and not in too much pain.

xx
Diagnosed with Chiari 15mm herniation Feb 2010

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Re: My story.....up till now
« Reply #28 on: March 13, 2010, 10:17:55 AM »
Mandy, Thats nothing... You should hear me and chris on the phone... like two old women ;) lol (i love him really!)

Im glad you are doing ok, How weird you have water in your brain, bring a whole new meaning to 'water baby', If they arent worried though? lol see? we are all weird and wonderful! Its GOOD to be different and i TOTALLY stand by that comment! :)

I am off to attempt to drive.... First time since my op... Dear god help the people in my town..!! Hang on to your hat......
Diagnosed CM June 09, 10mm Herniation and Decompression 25th November 2009.

Offline Chris

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Re: My story.....up till now
« Reply #29 on: March 13, 2010, 02:51:38 PM »
Laura and Chris = Hinge and Bracket!
http://www.chiariblog.co.uk 17mm herniation and syrinx from C1 to C3. Decompressed April 9th 2009 http://www.loscarmenes.co.uk http://www.loscarmenes.com