Want to dive even deeper? Check out our

"It's challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one's life."

ARmain_profile

Alicia

My name is Alicia Robinson, I am 32 years of age living in Jamaica. I have had severe headaches, impaired vision, and nausea for most of my life, but the cause was never known. My headaches significantly worsened and my vision started to deteriorate in June of 2021. I went to my general practitioner, who prescribed an MRI, which revealed that my pituitary and optic nerve findings were equivocal for IIH. I saw a neurologist and ophthalmologist and after a series of testing, I was diagnosed with Idiopathic Intracranial Hypertension (IIH) and papilledema.

Being diagnosed with IIH and papilledema changed my life forever when I found out I was very close to losing my vision. My neurologist started me on headache management medications along with Acetazolamide/Diamox to help reduce the pressure; unfortunately my vision continued deteriorating. At this time I found out that I had lost my peripheral vision and I was only seeing centrally. I was then referred to a neurosurgeon for shunting. This was the last resort as nothing was helping to control the pressure and build up of my cerebrospinal fluid (CSF).

My neurosurgeon requested another lumbar puncture (LP) to confirm an elevated opening pressure and determine if shunting was the best option for me. The lumbar puncture did in fact reveal that my pressure was extremely high, therefore I needed to have a shunt placed to help reduce the pressure to my optic nerve in order to save my vision. This procedure would give me a 50/50 chance where my vision may not be fully restored but it would help it from getting worse. If the scare of losing my vision wasn’t enough, exactly 3 days after that lumbar puncture, I tested positive for COVID-19 which worsened my symptoms.

My shunt surgery was delayed not only because of lack of funds but because I had to be COVID-19 free and then by the time my fourteen days of quarantine was completed, the c-arm machine (an advanced medical imaging device) went down at the hospital, pushing my surgery another week back. So the next available date was October 12th, my birthday. It was a difficult choice to have surgery on this day but saving my vision was way more important, knowing each day I delayed was a risk of me losing my vision.

I prayed day in day out for God to show up on my behalf.

On October 12th, 2021, I did surgery and it was a success! I came out of surgery as strong as a lion ready to conquer the world again, within two (2) days I was out of the hospital and was on the road to recovery.

I returned to work in January 2022 with restrictions. Late February, early March my symptoms of IIH started to return; how devastated I was. My heart was broken again, I started experiencing severe headaches, nausea, vomiting, abdominal pain, tingling in my hands and feet, neck and shoulder pain, tinnitus, and burning sensation on my shunt side. Of course I was back in the ER for treatment and had to be doing weekly follow-ups with my neurosurgeon, neurologist, and ophthalmologist because my shunt was over-draining. This was the worst feeling ever. In these same visits, my shunt was adjusted but my symptoms only got worse and I had to go for surgery again. I felt so frustrated and at times depressed because I really thought I could have my life back and get back on my feet financially after having used all I had towards my medical expenses.

I started questioning God! When will I get the treatment and relief I deserve? When will I no longer just be told to lose weight, take this medication, get a lumbar puncture, adjust my shunt and have my symptoms recognized as more than just a “headache”?

After my second surgery in June 2022 my IIH symptoms did not change. I started to look elsewhere for help and it was through my support group on Facebook I found Dr. Athos Patsalides, an Interventional Neuroradiologist affiliated with one of New York City’s leading Hospitals known for numerous successes in treating patients with Idiopathic Intracranial Hypertension. He consulted with me and my neurosurgeon in Jamaica and recommended Venous Sinus Stenting after finding stenosis on an MRV Brain scan which I had previously done.

 

women in hospital bed

With this intervention I thought I would finally have my life back in a few months and I would be able to celebrate my 32nd birthday pain free but unfortunately that did not happen.

I left Jamaica for surgery in New York which was scheduled for September 2nd 2022, unfortunately it was discovered that my gradient pressure was low and so the surgeon decided that he would not place the stent.

I was then faced with a decision of what would be the next steps. I am still at risk of losing my vision based on my continued IIH symptoms which have not changed with my gradient and CSF pressure being low (my NS states with a gradient pressure being below 10 and placing a stent, the risk was greater than the benefit). So with surgery on hold we had to go back to the drawing board.

My surgeon in New York recommended that I see a neurologist and a neuro-ophthalmologist for further consulting and testing with the hope that these tests will provide some insight into my prolonged IIH symptoms and vision deterioration. These additional expenses were never budgeted for and all the funds I took with me for surgery was now depleted and I had to return to Jamaica.

Upon my return to Jamaica my symptoms only got worse and I have been in and out of the emergency room, back and forth with my neurosurgeon trying to find some relief for my symptoms. I finally got to change my neurologist who is currently trying to rule out Multiple Sclerosis after being diagnosed with IIH, Chronic Migraine, Optic Neuritis, Venous Sinus Stenosis, and Fibromyalgia.

Two (2) years later my symptoms have not changed, I am still doing appointments, MRI’s and undergoing lumbar punctures. It’s challenging to describe this invisible illness and the severity of how living in chronic pain everyday can change one’s life. Despite all the difficulties this chronic illness presents and the potential that I am still at risk of losing my vision, I continue to have faith that my condition will improve and that a cure will be discovered in the future. 🙏🏾

ARmain_profile

Alicia

You are not alone

This hub is filled with resources to help you navigate IIH. Sign up for our mailing list to receive monthly updates about new tools and resources.

More Stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

Like what you are seeing?

Join our next webinar.

Thank you! You’re registration is complete for:

IIH Community Chat

Discussion on navigating through the healthcare system

April 25 at 10am ET