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 Vent-- Visit to Neuro-Opthamologist

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painoh
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PostSubject: Vent-- Visit to Neuro-Opthamologist   Fri May 20, 2011 1:07 am

Bear with my frustration, but hoping someone will have some advice on how to proceed.

Diagnosed in 2005 after rapid weight gain, onset of migraines, and papilledema. CT scan, lumbar puncture, and all else pointed to IIH (my original pressure was near 40, I believe). Was monitored and treated (Diamox) throughout next few years until 2007. During pregnancy with 2nd child in 2007, symptoms eased up to almost non-existant and stayed that way until approx. 2009/2010. The last two years, it's slowly been getting worse again. I have floaters when I lay down, neck stiffness, fatigue, migraines and regular other headaches (such a barometric ones), my vision has declined, and so on. I moved in that time, so I had been without a doctor and treatment.

Last month, my regular visit to optometrist found some damage to my optic nerves, despite no current papilledema seen. He ordered a visual field at a neuro-ophthalmologist, one that supposedly was well versed in IIH and had done some research himself. I was optimistic that I might actually get to see a doctor who could help and that knew what he was talking about.

Nearly three hour appointment today. Visual field showed some loss in my peripherals, especially my left eye. Doctor said normal for someone with IIH, but not significant enough to be worried about loss. Then, he proceeded to tell me a series of conflicting, confusing things.

The first was that he believed I was "cured." Since I had no current papilledema, the pressure was likely normal, and my headaches were likely something else entirely. He said something I had never heard put the way he said it, which was that nearly all cases of IIH resolve themselves in 1-3 years. He said I should go live my life.

He also said that, if I was not satisfied with his suggestions, I should go find a neurologist, but he went into a lengthy warning that they would insist I have a CT Scan and lumbar puncture before they could consider IIH (despite previous diagnosis). He seemed to really want me to be discouraged by that option, as his tone changed and he labored on and on about the negative. Rather, he suggested I lose weight, because that was "the easiest and healthiest" solution that would GUARANTEE I no longer have any IIH issues (no mind to the fact that I was entirely of normal body weight and an athlete before the rapid weight gain associated with my IIH onset).

An aside, he also noted something else that no one had mentioned before-- that my left optic nerve(the one that happens to have the most damage) is some 30% smaller than my right. He noted never seeing that before, yet it didn't seem to raise questions for him at all. Anyone ever been told this?

I obviously left very frustrated. I'm not a fan of lumbar punctures or the thought of a shunt, but now I am left without any immediate medical relief (drugs) for my migraines (not to mention the amount of money that he'll end up paid). Not only that, but now I have basically been told that I am crazy. That I am better, and that my current pain and other problems are either in my head or the result of something else entirely.

What is a girl supposed to do? Find a neurologist? I have never even seen one before. My original diagnosis and treatment was done by a neuro-opthamologist. He also suggested I call my family doctor to have him investigate my headaches. What the heck?

Thoughts?
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PostSubject: Re: Vent-- Visit to Neuro-Opthamologist   Fri May 20, 2011 2:19 pm

OMG!!! [You must be registered and logged in to see this image.] I can't believe that man was actually a doctor! For one you can still have IIH and not have papilloedem and that is well documented, secondly there is no cure for IIH, amd thirdly he seemed completely clueless about IIH.

I don't know where he got nearly all cases resolve themselves in 1-3 years from, as that is totally untrue and has never been mentioned in any medical studies or articles about IIH. I don't have to imagine how frustrated and angry you must feel hug, because this doctor has totally failed in his duty of care to you.

Yes you will probably have to have a CT and LP to check your pressure, but that is standard practice for diagnosing IIH, and for also checking pressure on someone who has it and is experiencing symptoms such as yours.

I think it would be wise to see a Neurologist, and preferably one who has experience with IIH, as the advice this doctor has given you plus lack of a treatment plan, has put you in a serious situation especially in regards to your vision.I am surprised you have not been monitored in all that time by your Neuro Ophthalmologist, and have been left with just your regular doctor who obviously hasn't treated IIH before.

Here is the link to help finding a Neurologist that is provided by the IH Research Foundation Resources for Finding a Doctor I hope it is of some help to you. Also here is the link to our guidesheet on the kind of questions you can ask him about IIH and treatment. Talking to your Doctor about IIH


There is also this which I think could be of help to you Advocacy for Patients with Chronic Illness

I really hope these links are of help to you, and please let me know how you get on. Also, you can contact the IH Research Foundation by email for anything to do with IIH.
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I really hope these libnks will be a big help to you. hug Let us know how you get on.
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PostSubject: Re: Vent-- Visit to Neuro-Opthamologist   Fri May 20, 2011 2:39 pm

Thanks, Heidi. Lack of treatment the past several years was my choice, as I grew so frustrated with this process of no one knowing or being able to do anything about this disorder. As symptoms have come back and my optometrist insisted, I decided to finally try to get treatment again.

Go figures this is what I end up with! This neuro-ophthalmologist from yesterday was actually one from the NANOS list!

And really, I'm just not convinced that, with two small kids, that I want to live the life of regular spinal taps. I think quality of life might be better without vision than being still sick AND poked and prodded. Every story I read is always so bleak in that regards. I have already decided that a shunt is out of the question. I will not risk my life for my vision. So, I guess I am making the choice to live with my IIH instead of get sucked into that cycle of treatment. If doctors want to refuse me prescription relief because I won't do another spinal, I guess I have to live with that too. :(
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PostSubject: Re: Vent-- Visit to Neuro-Opthamologist   Fri May 20, 2011 3:48 pm

I know what you mean as I was the same when my daughter was a baby. I did manage quite well on Diamox with an LP when necessary, but I still managed to care for her on my own, and go back to working when she started school. This lasted for 12 years until my vision was much like yours but my peripheral vision was disappearing, I went into complere denial for a year until I fell down some steps, and that's when I had my first shunt.

Although I permanently lost my peripheral vision and depth perceptioln, the shunt did halt it taking any more vision. Even though I was anxious about the shunt, the thought of not seeing my daughter grow and see her on her wedding day and so on, kept me focussed on that it was my best option.

I know it is not something to be taken lightly having a shunt because it's not a temporary thing. During my first 12 years it was suggested to me a few times, and I always refused, now in hindsight perhaps I should have and then my vision would be full instead of partial.

Have you discussed it all with your family? I think it's a big load on your shoulders and you need your family's imput and support.

I have a VP shunt now, so I've been shunt reliant for 10 years now, and as you can see it enables me to run this support group, and I have a decent quality of life. Please don't be put off by everything you read, because the ones you aren't getting to read are the positive ones of people who have returned to a normal life. I know of quite a few shunted people who have returned to work and resumed their favourite activities, and maybe ths is why we never get to read their stories, because they feel they no longer need to use a support forum.

Your doctor shouldn't be refusing you pain relief, especially as you need it. I commend you for wanting to get on with your life and tolerate your IIH, and with two small children I know that it wont be easy, we are here for you to support and help you as much as you need. hug
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PostSubject: Re: Vent-- Visit to Neuro-Opthamologist   Fri May 20, 2011 9:16 pm

Ok, my synapses are apparently NOT connecting today..I've tried to reply twice, but keep hitting the wrong buttons..lol..some days it is exhausting and frustrating..I want to give up..I'm sick of doctor's and tests, and would just like to retreat into my bat cave. BUT, I remember what my life was like before treatment.

I had huge holes in my vision, constant floaters, and my peripheral vision was extremely limited. I was in constant, excruciating pain. I couldn't work, some days couldn't even stand..it was HORRIBLE! My diagnostician told me "no one knows your body better than you". He told me there are a lot of specialists and experts out there that would try to diagnose and influence me, but that I'd have to keep looking until I found someone that heard me..that was truly the best advice I ever received. I finally found that person and have had my Lumbar Shunt since 2002. It hasn't been perfect, but I'm working fulltime and love my life..a life I wouldn't have without treatment. And, my neuro-ophthalmologist said no one would know I ever had issues w/ my vision, if they didn't know my history..I have no permanent damage thanks to the shunt. Every body and system is different so you may have to experiment and do your homework, but there are a lot of options out there. I even know someone that sees an iridologist and has been able to control symptoms w/ supplements.

I can only imagine how defeated you must feel..to get such conflicting information from an "expert", no less. My advice is to just go w/ what you know..your vision has been affected and you're in pain. If your GP is supportive, I would start there. Your GP can at least start the testing process and hopefully confirm some things by the time you find/schedule an appointment w/ a neurologist. I absolutely HATE spinal taps and understand your hesitation, but you could find instant relief if your pressure is high..they can also confirm it's IIH causing your issues. I've found that I have a much better experience if I request a LP by fluroscopy (guided x-ray) and ask for no students or residents. Luckily, I only have to have them every couple years.

I do hear you, and I know exactly where you are..hang in there!!! Heidi's right, you have to reach out to family/friends and find someone to help support your efforts..you're the one that has to advocate to improve your quality of life, but you need support. If your doctor's aren't listening, then go to the ER, Urgent Care, Physician Referral, IHRF and find someone who will. I wish you the best of luck, and please keep us posted!
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