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| You can find an excellent (world wide, online) support group at www.pseudotumorcerebri.co m--just click the link on the upper left for the support board. I know there is at least one active member fairly close to you there. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hey Rhiannon, I was diagnosed about 5 weeks ago. I went from being diagnosed casually as an outpatient to spending two weeks in hospital feeling very sick. I deal with a neurology team and an ophthalmic specialist. You definitely need to see specialists when it comes to this, I can only suggest Sydney, Melbourne or Adelaide (depending on where you feel like driving to) are your best bet, but Dubbo may have VMO (visiting doctors who know about it). Make sure they do a MRI before/after any LP’s and that you are happy with your doctors because every case of this is different. I’m not much help with which doctors as I’m from QLD. MA~ |
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| Hi my name is Rhianon and I was diagnosed with BIH 2 days ago!! I live in Broken Hill but have decided to go else where for my treatments as the doctors here dont have a clue about what I have!! I was wondering do u have nice specialists? If so who are they?? Thanks for your help |
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| I have just found out that I have this two days ago after visual problems for a week in my right eye. I have had an MRI and found out that I have narrowing in my transverse sinus. I am interested in hearing what everyone experiences are. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Here is a link for an Aussie group .. im a member, tho it has been very quiet of late.... post a message you WILL get a reply. I have had BIH since 99 .. seems to be under control now thanx to a VP and LP shunt. Drop me a line if want, feel free to ask questions I will help if I can. Sally :O) http://health.groups.yahoo.com/group/Australian_PT C-BIH_Network/ |
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| Hi! Sorry I'm not aware of any support groups...I've been searching the web like mad for information since I was diagnosed with BIH in Aug 06, I was found to have a 'narrowing' of the straight sinus (which I've had no treatment for...stents have been discussed). On average I've had 1-2 LP's per month since..and been on some meds. I'm never without a headache, it varies between high & low pressure ones. I found your post today when I was trying to find out more info on VP shunts...I got a phonecall today informing me I will be having the a VP shunt inserted next week...so I'm back to the PC to get as much info as possible. Most of the information I've found is on Hydrocephalus...but the symptoms & treatment sound very similar to BIH, so it has helped a little. I was hoping that there was some sort of BIH Foundation that could be a one stop shop, but I haven't found one! I can't believe you've managed so long with this condition!! My back is a wreck just after 6 months! I'm not sure if my post will help at all...but finding your post let me know that I'm not the only person who is finding it difficult to find information/support. |
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| Hi, i know you post was a while ago now but would likee to know how you got on with your BIH. I was diagnosed 5 years ago but wasnt until 2 years ago that my headaches were persistant.. i have now had a constant headach for 2 years and 2 months. Have had so mant LP's that my back is ruind and have had stents placed into my transverse sinus in my brain to open them to see if that drains the fluid.. NOTHING... No Change. I am now booked to have a VP shunt inserted in 2 weeks. I live a few hours from sydney but like you would like some sort of support group. Sorry.. also what Dr's are you seeing. regards Kel |
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| Thanks for your reply. Have you tried going to a chiropractor? I hope you can find out what's causing your headaches. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I am sorry to here of your problem it sounds very unpleasant and I am unable yo assist you with any support group in Sydney. I do however suffer from an ailment which causes me headaches daily and it has been this way now for 5 months and driving me nuts. My doctor is monitoring the situation and suggested it was from arthritis in my neck however, another doctor I visited on another issue has suggested it must be from a damaged nerve to cause the type of issues I am having. He didn't diagnose neuralgia, but to me it seems like it is. Any ideas? |
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| I was diagnosed (following a lumbar puncture) with BIH about 3 years ago after suffering from pressure headaches causing loss of vision (when laughing, sneezing etc.) I am on medication for this but still have pressure headaches and I was wondering if there are any support groups for people with this problem in Sydney. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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