IIH Suspicion
Posted , 4 users are following.
Hello, this is my first post here and I hope that it is ok that I post my questions even though I am not diagnosed.
My opthalmologist found a papilledema in my right eye after I'd been complaining about visual disturbances, dizziness, total exhaustion, and tingling/pain in my extremities. I have had a clear CT and a clear MRI and all other tests come back normal. A visual field test showed slight vision loss (a small blind spot in the center of my visual field) in my right eye - consistent with the papilledema.
Initially my doctor (neurologist) had discussed moving forward with a lumbar puncture if the MRI came back normal, but for whatever reason he is kinda walking back on that some. He wants to do another MRI in 3 months before he recommends that and get another imaging test done in opthalmology.
Some reading online lead me to IIH which - of course - I had never heard of before. It seems like it fits really well with all of my symptoms. I am eager to have a diagnosis. All of these symptoms are frightening and I don't feel like myself. It's causing a lot of severe depression.
My question is how was your diagnosis made? Was it a long process? Did your doctor go back and forth a lot with tests?
0 likes, 7 replies
sarahcass40 enidxoreilley
Posted
Hi Enid,
Since July 2015 I'd been having high blood pressure readings and when stressed at work or angry I was getting red faced and felt like my head was going to pop. In February 2016 I went to my opticians (Specsavers) for a routine checkup. I had trouble with one of the tests (couldn't see some of the lights flashing with my left eye, like I had a dark patch). The optician looked in both eyes and said I had bilateral papilledema and sent me to the local hospital A&E dept immediately. I was really scared. He rang ahead and gave me a letter for them. I was seen by the on call ophthalmologist and he agreed with the Specsavers optician. He booked me an appointment with the ophthalmology dept for the next day. I was seen and sent straight back to A&E to be admitted under medical for a lumbar puncture. They did the LP in theatre and my pressure was over 50. As the registrar drew CSF fluid off it kept filling straight back up until eventually it levelled out and they left me with a reading of 10. Instant relief behind the eyes. My blood pressure was normal afterwards and I was discharged the next day. 2 weeks later I had a follow up with ophthalmology and the papilledema was still present and they could not see my discs. I was admitted to a ward and they did another LP and the reading was over 30. Again they drew off CSF and brought the level down to 10. I was in hospital 4 weeks, I had MRI and CT and was put under a neurologist. He said the pics of my brain were clear but because of papilledema and high CSF he diagnosed me with IIH. I had another LP within the 4 weeks and it was high again. I was transferred to Hull Royal Infirmary where I was put on their neuro ward under the care of a neurosurgeon. Further MRI and CT also showed a slight chiari malformation where the brain had dropped ever so slightly towards the base of the skull. The neurosurgeon said it was so slight that it would not need anything doing to it. He told me my ventricles were narrowed in my brain and believed I was producing too much CSF for the ventricles to cope with. He said I needed to have a shunt fitted to relieve the CSF off my brain and optic nerve. I had a choice between a lumbar shunt and a VP shunt. I chose VP as it was supposed to be more affective. It basically is an overflow/drain which is tapped into my ventricle at the back of the brain, CSF passes through it, down a tube under the skin and filters out into my peritoneum. 6.5hr surgery, 7 days recovery in hospital, then home. 9 days later CSF was leaking from my stomach incision which was stapled. Rang neuro ward and they told me to come straight in. The shunt had twisted up in the peritoneal cavity resulting in the top end of the shunt malfunctioning. Straight back into surgery 10.5hrs. Left hospital 9 days later. Nurse at my GP surgery took my staples out my head and stomach 2 weeks later. I was been back in hospital October 2016 for 2 weeks and May 2017 for 3 weeks. Raised CSF pressure, raging head pain. My shunt isn't working properly and keeps blocking up. The neurosurgeon contacted a bariatric consultant for me and got me put forward for gastric bypass surgery as he believes dramatic weight loss will improve the IIH. We've been waiting for a date for surgery and that came through last week. My surgery is 11th October. We will see if it has a positive affect on IIH; if it doesn't, then they will replace my shunt. That's pretty much my diagnosis to present day Enid. Everyone has different stories, some people have suffered with bad head pain before being diagnosed. I didn't suffer from headaches, migraines or anything like that until after I had the shunt fitted. I'd just get so worked up over things that it looked like my head was going to burst and my usually good BP was very high one minute and normal the next (situational BP they called it-or white coat syndrome BP). Weird how people react differently with the same condition/diagnosis. Hope you find this informative. All the best, Sarah
Mrs_F.S sarahcass40
Posted
Hi sarah. Im seeing my neurosurgeon on wednesday. I am really stressed about whats going to happen. Im lost weight tried everything but the pressure keepa building up. Even though im on meds for the last three years. So now shunt is my only option left. And i have seen thay it doesn't always work out well for everyone. I hope and pray that your surgery will be a success and that u find relief after this.
sarahcass40 Mrs_F.S
Posted
Hi Mrs F.S,
Some shunts last for years and some don't. You're right, it doesn't always work out well for everyone. My option was have a shunt fitted or lose your sight, so I looked at the different types of shunt and decided VP was best for me. While I was in hospital I met a young woman 19yrs old who had had LP surgery a year prior and had come into hospital with an infection. She had been diagnosed with IIH for a couple of years, had LP surgery and it hadn't helped that much, she couldn't walk very well and she had a problem where her eyes would move in opposite directions. IIH is a horrible condition, I don't know if you'd agree but since developing IIH I feel like I'm not me anymore. Topiramate really made it worse for me though, it was like a wall was up in my brain and couldn't think clearly through it, came off the drug and things were much clearer. I still struggle to find the words I want to say and stammer quite a bit when anxious. Balance is off still, but worse if I don't take the betahistine. At the moment I'm drinking between 3 and 4 litres of water a day, and I know about it if I haven't had enough.
After the shunt surgery I was so tired. I had to gradually get myself moving, taking it steady. It felt weird having the shunt in, I wanted to rip it out, but like anything, I got used to it as time went by. Over a year after surgery and I'm just taking it one day at a time. I work part time hours now, 25 a week, I'm hoping they will go back up to full time, but I don't feel well enough right now. I've realised I have to accept I have limitations which didn't used to be there. It's frustrating. If I have to do the surgery again, I will make sure Im calm and not anxious about the VP surgery. I was in good hands with my neurosurgeon, but I was really scared and nothing he said could take the fear away. In hindsight, I think being relaxed and trusting the surgeon to get the job done is key and probably would have helped with recovery. I hope things go well for you on Wednesday
Mrs_F.S sarahcass40
Posted
sarahcass40 Mrs_F.S
Posted
Morning Mrs F.S,
I'm very happy for you! I too have stenosed ventricles and they had to use a 3D mapping machine to guide them when the VP was done. The neurosurgeon called it sat nav for the brain so he could see where to put the shunt. I will be thinking of you on 3rd Oct, don't worry, you're in good hands. I hope you have a trouble free recovery and the Lumbar shunt sorts you out long term. Good luck to you!
Mrs_F.S enidxoreilley
Posted
Hi. Ny diagnosis was made by my ophthalmologist as soon as she seen the visual problems. But couldn't guve ne a definite answer until i saw the neurologist who saw me within half hour of the ophthalmologist. I was admiited immediately and had my lumber puncture done ny csf level was 58 and i was 5 months pregnant so was diagnosed almost immediately. I am so glad i had really good specialists who worked really fast or i would have lost my vision. Sometimes if you feek uneasy about a diagnosis always take a second opinion rather than making yourself go crazy. All the best.
LP1981 enidxoreilley
Posted
My diagnosis wasn't actually made my a medical doctor but by an opthamologist. I had sever papilledema. Of course, my neuro and other opthamologist followed up. I didnt have a lumbar puncture until a year and a half after i started treatment. Part of this was because my 1st neuro cut a lot of corners and my 2nd neuro didnt understand why so he felt it necessary to fill in those blanks. I was taking 2 diamox a day when I had my puncture and my pressure was still high. I now take 3 diamox a day, along w otger meds.
You can have IH with or without papilledema. I would suggest asking why they want to wait for the lumbar puncture bc that would either confirm or rule out a diagnosis of IH.
If you do have a lumbar puncture, please heed their warning and lay flat for the suggested time period. I did as much as I could w 4 kiddos and the headaches I had post lumbar puncture were far worse than what I deal with normally.