Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi guys.. So glad that there is some more press.... I, personally, am not comfortable with Neurologists knowledge base with Chiari. If you read this article, it sounds like FAR too much in the diagnosis, is being based on the ole' " length of herniation " ....Arrrggghhhhhh! Yes, considering a syrinx is important, but not the end all. Gee, how about symptoms displayed and blockages shown???? Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa PS...And yes, letters to the editor may well be a very " good thing " ! Neurology Now > ACM mentioned in the magazine Neurology Now. > > > > http://journals.lww.com/neurologynow/Fulltext/2011/07010/Ask_the_Experts__Ch > iari_Malformation.13.aspx?WT.mc_id=HPxADx20100319xMP > > Tiny Link: http://tiny.cc/sg7am > > > > I am writing my letter to the editor, perhaps if there were more of us we > could get some points that were made clarified J > > > > angie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 Thank you for that info on nne Cash Sally. I see that she tried Diamox (one of the drugs suggested in The Driscoll Theory). This drug was unsuccessful in her case but when you look at her MRI there is no collection of CSF above her brain, so that may be why. Has anyone from this forum managed to get on Diamox ? I'm curious, has it helped alleviate any symptoms ? I have read many reports on other forums of it's success. I have been unsuccessful at getting it, here in the UK but I wont stop trying!! - I can't get surgery here either so I'm running out of options - aaarrrgggghh!! Regards Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 > To: > From: ThatBarbaraLady@... > Date: Sat, 9 Jun 2012 18:02:25 -0400 > Subject: Re: Neurology now > > Thank you for that info on nne Cash Sally. > > I see that she tried Diamox (one of the drugs suggested > in The Driscoll Theory). This drug was unsuccessful in her > case but when you look at her MRI there is no collection > of CSF above her brain, so that may be why. > > Has anyone from this forum managed to get on Diamox ? > I'm curious, has it helped alleviate any symptoms ? > I have read many reports on other forums of it's success. > I have been unsuccessful at getting it, here in the UK but > I wont stop trying!! - I can't get surgery here either so I'm > running out of options - aaarrrgggghh!! > Regards > Barbara > (UK) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 My surgeon tried me on it before decompression in the hopes that I could avoid surgery. It didn't work though. But 6 weeks after surgery he put me back on it saying that with surgery my body may react differently to it. It was a life saver for me for the next couple of years. I went no where without it! My uncle began to have such severe Chiari symptoms after an injury that he actually lost his job. I told him about Diamox and he asked his doctor for it. Soon after he was symptom free! He has had no surgery and has even been able to get off the Diamox as well! So, yes, it can be successful. Not everyone responds the same to it though. But if you can get it, it's well worth a try. Cortney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2012 Report Share Posted June 11, 2012 Hi With regard to the other drugs mentioned in The Driscoll Theory, those that deal with the Mast Cell Activation, the H1 and H2 inhibitors, has anyone tried those ? If anyone is wondering where the connection is between Chiari sufferers and possible Mast Cell Activation, well, many of us have EDS, giving us connective tissue problems and, to quote several medical sites: " Mast cell: A connective tissue cell whose normal function is unknown but which is frequently injured in allergic reactions " . Food for thought, eh ? Regards Barbara (UK) Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2012 Report Share Posted June 12, 2012 I was on Diamox for many years. I was first told that I had PTC. The Diamox did nothing for me. But I have Chiari and hydrocephalus so I don't know if that is the reason. Debi > > Thank you for that info on nne Cash Sally. > > I see that she tried Diamox (one of the drugs suggested > in The Driscoll Theory). This drug was unsuccessful in her > case but when you look at her MRI there is no collection > of CSF above her brain, so that may be why. > > Has anyone from this forum managed to get on Diamox ? > I'm curious, has it helped alleviate any symptoms ? > I have read many reports on other forums of it's success. > I have been unsuccessful at getting it, here in the UK but > I wont stop trying!! - I can't get surgery here either so I'm > running out of options - aaarrrgggghh!! > Regards > Barbara > (UK) > > Quote Link to comment Share on other sites More sharing options...
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