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| Can you provide me with the details (Phone number, etc.for Dr. Sandhu in Adelaide, as I am having the same problem as you had....I have just been in Flinders Medical who didn't seem to understand my problem. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have a son who was diagnosed when he was 2 1/2 with BIH and he is now 12 years old who has of recent been having increased difficulty with his BIH. I have looked into a support group and have only found 1 in the USA as BIH is quite common over there and there is a clinic in Wisconsin for BIH patients. From reading everybodies condition on the web,I am now realising that everything my son complains about is obviously quite painful.Recently his symptoms are very similar to your own.If I learn of any I will let you know. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Later that night I fell asleep on the lounge and found that when I woke my t shirt was wet. I went into the bathroom and noticed something was dripping on the floor. I went into my husband and when he had a look at the wound it was dripping clearish fluid...We rang the ambulance as our first thought was CSF!!! and we were right...back to hospital...but as the fluid was leaking I noticed that after a couple of hours my headaches had reduce...the pressure was reducing as the fluid was getting free. the next 3 weeks in hospital saw me have an op to put my VP shunt in and then a week later I had it redone to improve the position...long time away from home but it was worth it in the end. I did what I was told and had a few weeks off work before returning Part time for 6 mths. I am now doing really well and only have a few headaches from time to time if I try to do too much. Some people don't understand how painful this can be. You tell anyone that you suffer from headaches and they will always have them worse but no one knows headaches until you suffer pressure headaches. Its important to make sure that you are comfortable with your medical team and may sure they listen to you if you are unsure of what they are saying or suggesting speak up! It's your right to do so...I would hate to think where I would be if I had'nt asked for a second opinion all those years ago...listen to your body...It will tell you what is wrong! I have lost the majority of sight in my right eye and a bit of my balance...but it could have been worse...I have my daughter and husband and now my health to be grateful for!! Live for today! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| headaches again...I knew the signs and insisted the GP send me straight away to hospital. Within 48hrs and another failed LP under Xray they figured that the CA Shunt was block and not functioning, tests revealed no infection so they decided to leave the shunt in place and give me a LP (lumber spine to Stomach)shunt. New Neuro never seen me before couldn't believe how high my pressure was until he opened me up and the "Dam" released. I recoverd quickly and returned to work, 3 week turn around this time...Neuro said I have to get use to it as I am obviously going to have to always have one in place. 5 mths after my op, I discovered I was pregnant...Much to my Neuro's concern...It wont be easy but we will give it a go! I was really well all the way through but I was told that I will not go full term and I couldn't push....Needs to say I was in a high risk team and They were fantastic. I went in labour 5 weeks early an after 3 days in labour, I had a beautiful baby girl. I had a bad turn 2 days after she was born, due to the stress of the birth and had a really bad Headaches and loss of vision again in my right eye and no feeling in my arm. All symptoms were gone in 2 days. I continued to have regular checkups always worried that any increase in headaches would indicate shunt malfunction....It wasn't until December 2007 after months of increasing symptoms and feeling unwell that I had another major turn and was rushed to hospital with what they thought was a stroke. Scans revealed no bleed, but increased pressure..Here we go again! Due to the time of year and as I was not well my new Neurosurgeon felt i should recover first and have an operation to remove my LP shunt. Leave it a few weeks and then replace it with a VP shunt. I was scheduled to have my LP shunt on 17/1/2008, everything went well with that op and I was sent home 4 days later. I developed a lot of swelling around my wound site they continued to get bigger, my headaches were still bad... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| They had to take out the drain just prior to my Left eye surgery as it was laying on my sciatic nerve and my left leg was numb. I had my left eye operated on and they place me on Dexamethosone...my WORST NIGHTMARE was about to begin!!!! I was sent home to recover...I developed every side effect that has been documented for it. I developed cushings syndrome and had buffaloe hump to go with it. While receiving treatment I had emotional disturbances that left me in deep depression and crying all the time. I developed a lot of pain and high temp and my husband took me to hospital where they diagnosed that my appendix had burst and that the dexa had masked the infection. I was rushed into surgery. 6 weeks later I was having more troubles and had to visit RPA for a followup, They were shocked and immediately took me off the Dexamethasone, my hair had started to fall out also, they decided to admit me as my headaches had returned over the previous fortnight. I had to have a number of scans and they found that the holes in my optic nerve had closed over and that my only option was to have a shunt put in place. On the 15 December I had to be assisted by my Dad and Husband to walk to my hospital bed due to my extremely bad balance caused by the pressure in my brain. I was operated on the 19/12/98 and had a cisterno Atrial Shunt (CA- Brain to Heart) put in place....all my remaining hair shaved off and a zipper in the back of my head and across my throat I was discharged from Hospital on Xmas day..I walked out myself. The improvement in my balance and headaches were amazing and I started to rebuild myself...I went back to work after having to have 4 mths off. Unfortunately I was given advice from my team that I would not be able to have kids due to a number of issues including loosing a tube due to endrometrosis and burst appendix. Everything went well, no more diamox. Very rarely had any headaches...life was great after we got over the shock. In May 2000 I developed the | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I was diagnosed with BIH in 1996. I had suffered headaches for ages but was unsure of any trigger. It wasn't until I was suffering vision disturbances (Like the blinds were being drawn) I pushed my GP to send me to an opthamologist. He looked into my eyes and advised that I had a mass behind both eyes and that I should take myself straight to hospital....I didn't realise what was happening. I underwent a barrage of tests and advised that I had to have the first of many LP's. My pressure was in the Very high 40's I have 6 further Lp's in the next 8 days.I was seen by a Neurologist and I was put on Diamox and Lasix and told to go home and take whatever pain killers I needed to numb the pain. I was told to learn to deal with it as I will have it forever and there is no cure. I had regular checkups but my vision did not improve nor did the Headaches, 6 mths later I have another 3 LP'a to try and reduce the pressure. This continued until July 1998, I had a bad turn at home and lost vision and balance and the headaches were worse than ever, I was rushed to the local hospital and they were lost as to what to do..the next 7 days saw me have more tests, scans and LP's..When the Neuro came to see me I pleaded for him to fix me or send me somewhere to get a second opinion...They sent me to RPA, Sydney by road Patient Transport for 3 hrs. By the time I got there I wished I was dead! When the neuro team and Optho team came to see me they were shocked at the story I told them and the condition I was in. They tested my vision and found that I need to have Bilateral Eye Fenstrations done immediately or I would go blind. but they could only do one at a time.I underwent emergency surgery and had my Right eye done and at the same time they put in a drain in my lower back and it had to stay in for 7 days and I had to lay flat to allow the fluid to drain..after 2 days I was shocked to tell my family that I had woken up for the first time in 2 years without a headache.. To be continued ... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi laura i also have bih i was diagnosed in 2006 . im 28 and a mother of 3 boys. ive still been gettin a few headaches and was jus in hospital last week with severe headaches. im writing 2 u coz i seen that u have a ringing in ur ear.in about the past month i have noticed a ringing in my ear and its keeping em on edge im waiting for it to come back and start all oevr again.do u know wat the ringing is about |
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| WOW! I had no idea so many people are affected with this condition! I live in Darwin and was diagnosed with BIH in Sept 08. My story is just like everyone elses. I suddenly started having headaches, my headaches got worst over a matter of weeks and within 2 weeks my I have severe lost of vision, double vision, my left eye was turned in towards my nose, I couldn't turn my neck, it was so stiff, loss of balance and I had lost the use of my left arm. I spent the 2 weeks on the GP merry-go-round with them telling me it was everything to the flu without the flu, a pinched nerve in my neck and an inner ear infection - not one of them looked into the back of my eyes at this point - so all the while I am not getting better and they are telling me its something minor, so I'm starting to go crazy. One of the doctors sent me to our one and only hospital for an urgent CT scan that left me waiting 6 hours for the results for and then got sent home with a panadol - again no-one looked into the back of my eyes. Within 2 days I was back up to the hospital with a referral from GP (who looked into my eyes and told my husband to take me straight to hospital). This time someone did look at the back of my eyes and I was admitted and a series of 7 LPs were done over 2 weeks taking out at least 35mL of fluid each time. I was put on Diamox but was sent to Adelaide as Darwin couldn't handle me. I saw Dr Sandhu in Adelaide and he was great!!! I would recommend him to anyone. He put a camera up through my groin and into my brain and told me I needed my Transverse Venous Sinus stented. I also saw Dr Cromption (also would recommend him)about my eyes and he told me I needed that "window" cut into my optic nerve or I will go blind. I had bot opts in Sept 08 and I am pleased to say my life has resumed to normal - no headaches, my vision is almost back to normal - as my pressure was the highest they have ever seen they are unsure if I have any permanent damage. |
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| I feel no pressure, absolutely no pressure in my head since near a month now of my awakening to this with minimal visual disturbances (as the swelling on the optic nerve from six months of pressure raising, still has to go down so this is expected) and through out this whole month now, I stopped taking my medication which was 250 mg of Diamox, 1, 4 times a day, all because I chose to accept this instead of fighting against it, being in a continuous negative state of mind with it. All because I woke up and realized this is just my body saying it is not in-sync with health. All because I began to piece my life back together and all because I chose to not just eat or think healthy but LIVE healthy and smile every morning and put it out there that I AM healing. You see, you can heal, it is, will and always has been inside of you all along. So stop fighting against it. Stop being angry about it. Stop being negative about it. Accept it. Then, from it, you can release and then, then you truly begin to heal. I hope this help if not some of you, one of you because from every experience, weather good or bad, there is ALWAYS something to learn from it and this lesson to learn is that your body is not happy. So change your life, your out look and begin to smile, take time out for yourself, laugh, be greatful, be positive and LIVE healthy. I hope this helps because since awakening out of what we all think is a never ending pit of depression and silent suffering, I am truly healing and know I am going to be healed soon without any medication, surgery, or anything else. You have the power to heal and I hope now you know that. I may only be 19, but we are all the same, still forever learning and this is something that I call a true blessing in disguise that I am so happy has happened to me because now I have awakened to truly changing my life and being happy which now my body is becoming happy with me and healing. Peace and Light and please do not be afraid to message me! |
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| Hey guys I am knew to this and I became a member especially for this reason. I would like to shed some light on this "dis-ease". Here is my story and a message of hope for you all. I hope that this helps if not all of you, one of you! I was diagnosed with BIH in December of last year 2008 after having these symptoms for the past 6 months prior to being diagnosed. I stayed in hospital for 2 weeks with opening LP pressure of 37. I was then released. I went home and within a week I began to feel unwell again with head aches every day, neck pain and visual disturbances. I then went back for my repeast LP a month later which was the in the middle of January this year with opening pressure of 30! So it dropped by 7!. This is now where I want to let you know that you can begin to heal. I went home and decided to lock myself in the bathroom and took a hard look at myself in the mirror and then it clicked to me. This is my body letting me know that it is not happy and this was the physical manifestation of itself to let me know that. So why was is my body not happy? I asked myself this question as tears began to swell up and it hit me. I have been depressed, lost confidence in myself, not eating healthily or thinking and living with a healthy mind. There were parts of my life that I was not happy with and hadn't been happy with for years and now it had taken it's toll on my body. Once I realized this I wiped my eyes and could now see everything clearer. This was my body letting me know that it was not happy so I cleared my head picked myself up and dusted myself off and began to eat healthy, live healthy, think healthy, feel healthy and made it my duty to smile every day when I wake up, be greatful for everything, and whenever I felt in pain I would make it my duty also to turn that pain into motivation. Now, a month down the track, February 17th, I have 1 head ache being only a 2 on a scale of 1 to 10 only once a week. |
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| Hi there, i have just been diagnosed with IIH, I'm based in Adelaide i was wondering if you knew of the specialists here as im currently going to a hospital that i have had some run ins with in the past and just want to explore my treatment options | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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| Hello There, I was just having a read on peoples experiences of BIH when I started to read yours I couldn't believe it as it sounded like it was my own experience. I'm 21 and was diagnosed with BIH last Feb, 4/5 Months after having my son. I had these headaches for a month couldn't get out of bed, couldn't see my son had to leave him with my nan, I felt so bad like as if i didn't want anything to do with him. Anyway after the month my left eye moved inwards, which ment i saw everything double. I was so fed up of going to doctors and hospital and getting told that it was just a migrain or due to stress, that I didn't bother when my eye went inwards, after a few weeks my mum made me go to the optitian, when he look into my eyes and said 'have you had a brain scan?' My heart just stopped!! He was really worried telling me to rush straight to the hospital as i was bleeding in my brain. That was definatly the worst day of my entire life. When I got to doctors he checked my eyes, had scans, etc. But nothing else was done until a month went by of me in hospital (not being able to see my son which killed me inside). They then finally did a LP and found the pressure was 42. My eye went straight back in its place (Thank's God). And was on Diamox for a few months after, but was ok after that. Until a few months back which I have this noise in my left ear and its so annoying especially when i go to bed. But now I feel as if its coming back again, so i have been to the hospital today and got diamox and have an appointment with Neuro next week!!! The thing is we really want to try for another baby also, but am so unsure of what to do. I was told to loose weight but I really can't do it. Also if i'm gonna go back on diamox, i don't want to risk anything. Could you or anyone out there please help. Thank You Very much for reading. Laura. |
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| Hi i am pregnant now wih BIH and on diamox if you wanna chat please send me an email to zoewhatcott@yahoo.co.uk thanks | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I’ve had BIH for roughly 11 years, I was constantly getting headaches in my right temple traveling behind my ear and into my neck, usual accompanied by a whooshing noise in the right ear and a triangle shaped spot missing in my vision. When I was first diagnosed with BIH I was admitted to the Royal Melbourne hospital under Dr King where several different tests were taken including Cat scans, MRI, LP's to measure the pressure and a camera was sent from my groin to my brain to check it out. I remember a big deal being made including a lot of trainee Doctors asking a lot of questions, I was even asked to attend a seminar at the hospital with a large group of Doctors. Photos have been taken of the damage cause from the pressure behind my eye. I was placed on a drug called dextramethazone (and suffered every side effect this steroid had to offered) but it was only for a short time, as an operation to relieved pressure off my optical nerve to prevent blindness was done. The Doctors cut [what they called] window's in the sheath's around my optical nerves. A year later I became pregnant which is when the headaches returned but my sight remained normal [I belive was because of the op]. The headaches luckily passed after I had my child and was explained by the hormone increase during my pregnancy. 10year later I am still having headaches from time to time year to year with, so far, no affect on my eyes. I find that when my weight fluctuates up or down quickly the headaches get strong [by the way, I am around 30kg over weight]. This has been my experience with BIH an until now I had no idea how common this rare condition was. I don’t know if this helps anyone. But I have to say appart from being abrupped and some time disresponcive Dr King was and probably still is one of the most knowledgable Doctors when it come to BIH. I would recommend him. |
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| hi I cant help with the pregnancy thing, however if you post msg on these boards you'll find heaps of answers http://www.iihsupport.org/index.ph p http://groups.msn.com/pseudotumorcerebri/yourwebpa ge13.msn w http://www.ihrfoundation.or g/ Good Luck |
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| Hi All, I was also diagnosed with BIH in May this year - i had severe headaches (i never use to get headaches) so after 2 weeks i finally took myself to the GP who gave me some sinus tablets and casually told me when i hav time to go and get my eyes checked (as i wear glasses too) luckily i went 2 days later, and i was rushed to emergency with a suspected bleed on the brain or an anursym - This is the most scariest thing to be told when im 25 with a 9 month old little boy and with the most fantastic and supportive husband of 2 yrs. After 2 weeks in hospital a LP (pressure 30)2x CT scans a MRI and an angiogram, i was diagnosed with BIH and initially put on a prednisolone (??) (as i was breastfeeding my son at the time) i was given a month to wean then i would go onto Diamox. I was having fortnightly visual field tests and now there every 2 months, I went back and seen my neurologist yesty for another LP and my pressure was a disappointing 34+, we are wanting to start trying for another baby so i was hoping to be given the good news that i could wean of diamox. My Neuro said that although Diamox isnt suggested while pregnant she does have patients who are onit and pregnant (or have been) although with most drugs while pregnant there are risks of miscarry or abnormalites. My question is- Is there anyone out there thats been on Diamox and pregnant? My neuro said that once im pregnant(if we chose that path right now) that to call her and she will talk to us about other drugs such as predisolone that doesnt affect the feotus. Im hoping that maybe i could remain drug free and fortnightly LP while pregnant. |
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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. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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