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 Update on me & a little warning that may help someone...

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BananasMom
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PostSubject: Update on me & a little warning that may help someone...   Fri May 06, 2016 2:13 pm

Hi all! Just a quick update on me, and a caution for others based on my recent experience.  Ever since I had my first diagnostic LP in 2009, I have not had another, and my neuro has relied on an eye test called “OCT” to help him determine what’s going on with my ICP.  My IIH has been managed with Diamox and more recently Topamax, had been added.  In the summer/fall of 2015, after I reported an increase in my balance problems and a return of brief vision losses when standing up, bending over, etc., this neuro decided based on an OCT, that my pressure was fine and it must just be from “dehydration” and decided to take me off Diamox.  Even though this really concerned me, as I recognized the symptoms I was having as high pressure symptoms, I complied and tapered off the Diamox as he instructed. Very quickly, I noticed a worsening of the symptoms as I discontinued the Diamox, but when I reported it to the neuro’s office, I was encouraged to stick with the medication change plan, based on my “normal” OCT results.  That was the point I was finally concerned enough to ask my primary care doctor for a referral to a new neurologist.


Of course, it took another 3 months to get an appointment with the new neuro … but when I finally did get in to see her, the first thing she wanted to do was an LP.  She didn’t consider the OCT tests to be of any value and said the only way to get a clear picture of what was going on was an LP.  So after another couple of weeks waiting for an appointment for the LP, I finally got confirmation that – YES, my opening pressure was high. So here I am (after coming off bedrest from a week-long spinal headache, of course) starting back on Diamox, and feeling some hope after all these months sick.  Next appointment she has me set for is the ophthalmologist next week to be sure no permanent vision damage has been done over these past several months.  Sad to say, but my new neuro is truly the first doctor I’ve ever sat down with and felt I was talking with someone who knew more about this disease than I did just from reading online.

So anyway guys, please beware if any of you are seeing a neurologist who is telling you an OCT test is enough to give them a good idea of what’s going on with your ICP.  Trust your body and be proactive.  I actually waited too long when I knew something was up.
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Sophiasmom
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PostSubject: Re: Update on me & a little warning that may help someone...   Fri May 06, 2016 3:29 pm

thank you for that warning.  we have had hope that there could someday be a noninvasive way to measure ICP, but as far as I know, nothing has been found yet.  many people have IIHWOP, IIH without papilledema, so looking into the eye cannot always determine what is going on inside the skull.  in our experience, most doctors do not validate that IIHWOP exists, and will refuse further evaluation if there is no papilledema.  your neuro was confused by these misfounded ideas.  after all, papilledema is not one of the modified Dandy criteria.  therefore, by definition, an eye test cannot determine ICP.  I hope that no permanent damage was done, and I'm sorry for the suffering you have endured.  I hope you give your old neuro some follow up so he does not do this to anyone else.
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PostSubject: Re: Update on me & a little warning that may help someone...   Fri May 06, 2016 8:23 pm

I have to say I've been there too which unfortunately led to my having permanent tunnel vision and going down the shunt route. As we know many doctors are extremely arrogant and will not listen to what you are telling them, which i find the most disconcerting thing of all. Despite constantly telling my doctor at the time, that my headaches were a constant and getting worse, as was my vision, that particular one who was a Registrar, insisted on telling me it was nothing more than migraine and would write to my GP, to tell him to prescribe my migraine medication. 

A year later I had to fall down some concrete steps on my way to work, for me to be finally listened too. I worry that this is the case for many of our members, which is why we are honest and have integrity here, and do not censor members experiences, Ity is one thing for your doctor to not hear you, but it's quite another when you turn to support and aren't heard there either.
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PostSubject: Re: Update on me & a little warning that may help someone...   Thu May 12, 2016 8:53 pm

I'm so sorry to hear that you've been struggling, but I hope they're getting things straightened out now!!! And, thanks for the reminder.

I think my most disheartening experience was when I had a surgeon that actually participated in the IHRF Conference in 2011, but still had no idea what he was doing. My original surgeon told me he thought I had symptoms of a Chiari Malformation and my shunt was probably overdraining, so ordered LP. My opening pressure was 14, so he gave me a long speech about how I was not my body and could rise above the pain because there was obviously nothing wrong with ICP in normal range. Yeah, that was the last time I saw him. I went to Ohio State University from there and was very pleased to find a surgeon familiar with IIH. He also thought I had developed a Chiari Malformation because my LP Shunt was overdraining, so ordered another LP. After the resident stuck me 3-4 times and had to call the attending to talk him through my LP, the opening pressure was again within normal limits. He also dismissed my symptoms and suggested treatment for migraines. I took every medication and combination, had botox injections, lost weight, cut processed food, you name it..NOTHING helped. My neurologist actually told me there was nothing more he could do for me because there was nothing left to try and sent me to a pain specialist. The PAIN SPECIALIST told me my shunt is overdraining and LP isn't an accurate way to measure ICP because body position changes pressure. The pain specialist..not the 2 neuro-surgeons, not the neurologist..the pain specialist! I wanted to kiss that man. He made a referral to the headache clinic at the Cleveland Clinic because he said they would sort it out and get me to the right surgeon. They basically told me the same thing. They made referral to a neuro-surgeon, who listened to my symptoms and didn't need any more tests..he just scheduled my surgery. He also said they haven't relied on LP result for several years for overdraining because they're not accurate. Hmmmm..wouldn't you think the "IIH Specialist" from OSU who sat on the panel at IHRF Conference would also have that info?! Um, no. SEVERAL YEARS ago they stopped using LP's. It was amazing. The heavens opened, the birds sang, and everything was right with the world again. I felt like a completely different person after that revision. I was sitting up talking to the nurses and eating jello in recovery because I felt so good. It took me 3 YEARS to find someone that listened and knew what they were talking about. I've had some set backs, but they've known what to do every step of the way without a LP. I have a VP shunt now and feel the best I ever have.

The bottom line is YOU KNOW YOUR BODY BETTER THAN ANYONE, so keep getting referrals and moving on until you find someone that listens!!!
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Sophiasmom
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PostSubject: Re: Update on me & a little warning that may help someone...   Fri May 13, 2016 5:16 am

Hallelujah!  
your story is the justification for "doctor shopping" if I ever heard one.  don't ever let anyone tell you not to trust your own intuition.  you may not be a doctor but you are an expert on your own body, and once you learn about your illness, you will have insights the doctors won't.  wow.  I am so fed up with doctors who think they know what they are doing.  my son has been medically neglected by these doctors for years.
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