Michelle's Brain Tumor and Intracranial Hypertension Journey

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Michelle's Brain Tumor and Intracranial Hypertension Journey Michelle is fighting two battles. She was diagnosed with Intracranial Hypertension and also a Brain Tumor. In November 2019 Michelle had her 3rd brain surgery.

May 2016, Michelle was admitted to the hospital due to having a TIA (mini-stroke) at the time she was diagnosed with a Meningioma (brain tumor) in her left parietal lobe. Since then Michelle has been to many different Doctor’s in not only our surrounding areas but also was traveling to the Dallas area to see specialist. Michelle has had many tests ran (EEG, several MRI’s, CT’s). Michelle traveled to Austin to Seton Medical Center Hospital of The University of Texas in hope of finding the answers that she has been desperately needing, the answers, the relief and the solution to fighting these Brain Tumor. She met with neurosurgeon Dr. Zui and it was the answer to her prayers. Dr. Zui jumped in, went over every inch of each record that Michelle has had done in the past, took the time to listen, and explained in full detail what steps need to be taken. Dr. Zui is ordered Michelle to have more tests ran (MRI, CT Angiogram, EEG). Dr. Zui set up a team of Doctors for Michelle’s treatment plan that will work alongside him. Dr Vaillant a Neurologist at the Austin Cancer Center came on board along with Dr Zui. After many tests, lumbar punctures Michelle was diagnosed with a non-curable brain disease called iih ( Idiopathic intracranial hypertension). So in November 2016, Michelle had her first brain surgery to place a VP shunt so they could control the pressure in her brain. Unfortunately, not to long after surgery Michelle’s neurosurgeon in Austin moved out of state, so Michelle had to find another Neurosurgeon for her case. She then started the traveling to Houston, where she saw Dr. Viswanathan at Baylor College of medicine. Michelle had 2nd brain surgery in July 2018, to remove the old VP shunt and place a new one. Even at draining the most CSF fluid Michelle was still in high pressure, so in October 2018 Michelle had an LP Shunt placed in her spine to drain more CSF fluid off her brain and spine. Michelle and her family many trips to Houston for shunt adjustments, trying to find the correct setting on both to take the pressure off Michelle’s brain. Due to the pressure on Michelle’s brain, she was losing her vision because it was causing swelling of her optic nerve. So in May 2019, Michelle was admitted to hospital in Houston and had emergency Optic Nerve Sheath surgery on both eyes. We are very thankful and blessed that the neuro-Ophthalmologists saved Michelle from going blind. For months Michelle just did not feel good and we could not get the shunts at a good setting to take the pressure off her brain. The 9 hour car ride to Houston took a big toll on Michelle and her family so in September of 2019 Michelle was hurting so bad that her family driver her to UT Southwestern in Dallas to their ER. She was immediately admitted, they did a Lumbar puncture and found that Michelle had high pressure. It was then Michelle was assigned to a neurosurgeon at UTSW, Dr. Jonathan White. He took Michelle’s case and built an amazing Neuro team for Michelle. She was admitted to the ICU at UTSW for an iCP monitoring, which is when they monitor your CSF pressure 24/7 so the Neuro team could see how the pressure was running and make a new plan. That surgery Michelle was awake for and also when they shaved most of hair off. February 2020 Michelle’s LP Shunt failed so she had have surgery to remove the shunt from her spine, the doctor decided he did not want to place another shunt in her spine. Then Covid hit and therefore Michelle was left to deal with the brain pressure because of the lockdown. She was in constant, daily contact with her team of doctors in Dallas but they were unable to give relief due to the pandemic. She was admitted to hospital multiple times during these months for many Lumber punctures to give Michelle instant relief, but it was only a temporary solution. December 2020, when surgeries were allowed to start back up again, Michelle had her 4th brain surgery to remove her brain tumor. It was performed by her new neurosurgeon that was also added to her team at UTSW Dr Abdullah. Michelle spent a few days in hospital and went home to recovery. March 2021, Michelle had her 5th brain surgery, to completely remove and replace her VP Shunt, due to the older one not working at all. Since the last surgery Michelle has been fighting high pressure again, so she is still traveling back n forth, frequently to Dallas to see her team of Neuro doctors.

15/06/2025

Hello followers! I am so sorry it has been so long since I have posted any updates. Life gets a little hectic at times.
A short update…. I have had some roller coaster rides since my last post. But nothing I cannot handle. My shunt seems to finally be on the correct draining setting which means less pressure buildup, which means I am having more feel good days… thank God.
I look back at the past 10 years, what a roller coaster it has been. Some days I didn’t have the strength to even keep going but faith kept me, held me and made me stronger. I know this is something there is no cure for but having an amazing team looking out for me and taking care of me, does make it much easier to live with and even more so on those hard days. I definitely have learned a lot and count my blessings even more so.

I promise to do better with keeping this page updated

Michelle 🫶

09/12/2023

4:00 The icp monitoring bolt was removed … thank god. No pain med, a couple of stitches later

I can wash my hair in 2 days. Now just hoping to be discharged soon

6:00- discharged and back at hotel for the night. We will drive home tomorrow. I needed to stay close tonight in case. Now I am hoping for a good nights sleep.

Thank you for the calls, texts, well wishes, and prayers
Michelle

05/12/2023

Dallas bound to be admitted to the Neuro ICU for testing of my pressure in my brain. So thankful I have an amazing support system, thank you for all your calls, texts, prayers and well wishes. I am so thankful I have you all ❤️
A big thank you to my parents for making this trip with me… ya’ll are truly the best.

18/11/2023

Update…
I was in Dallas the past couple of days. I had a few appointments with my team of doctors and some tests ran.

I wish I could say I came home feeling better but I still feel like 💩. So I will be shut down for a few days.
CT showed my shunt is working but they do not understand or know why I am still in high pressure. It did show I had thin ventricles which is a cause for my high pressure and feeling like 💩. They made an adjustment to drain off more fluid, I am to give it 2 weeks then report back of how I am feeling and if not better then Dr and I will plan either a visit to the ICU for an ICP Bolt ( monitors my pressure continuously) or just put in a new shunt. And NO more LP’s, it is causing me many problems with my back plus it only gives me maybe a day of relief so i was told no more LP’s.
Thank you for the texts, calls, posts, prayers and well wishes.

07/09/2023

Lumbar puncture complete ✔️

The specials team at Medical Center Hospital has always been amazing and so super professional. Dr. Townsend is amazing with my LP’s.
My opening pressure was high 28, so he pulled off 20cc and let me tell you it is instant relief. Now send results to my neurosurgeon to determine next step.
But for the rest of today I get to lay flat in my bed.

27/08/2023

I know it has been awhile since i have given any updates but here is the latest

It has been a long past few days. My trip to Dallas was not a good one. I have been trying to wrap my mind around everything and all I keep coming up with is Why Me??? I know we are not to question God and what he has in store for our life, but I just don’t understand why me. As if being diagnosed with a brain tumor wasn’t enough, then finding out I have a non-curable brain disease that can only be “managed”, not cured. My life has completely changed, so much has changed for me. To now being told this brain disease is taking my vision as well. To say I am devastated is an understatement. My eyes just keep getting worse and worse to where eventually I will be declared legally blind. I had appointment to see if I was a candidate for lens replacement but unfortunately I am very high risk because my eyes are so bad already. So that is a no go for me. While at this appointment when they took the pressure in each eye, they both were high. I have been fighting my high pressure symptoms lately but nothing I can’t handle but having high pressure shown on my eyes explains why my eyes hurt. Because the pressure in my brain is putting pressure on my optic nerve which puts pressure on my eyes. So this week I will be contacting my neurosurgeon to find out what he wants to do next, to be honest I am begging for a lumbar puncture, who does that?!?! Begs for a needle to go into their back and pull CSF fluid off so it brings some relief and it is a very short term relief….Well that would be me, I am that person. We shall see what he decides to do.
But to now know that this disease is going to take my eye sight, it is really hard to accept right now. I have spent all day today in bed. My eyes feel like they want to pop out of my head, they are swollen, the ringing in my ears is loud and my head just hurts and feels foggy. I just keep trying to make sense of it all and again it leads me back to… why me??

16/05/2023

So here is short brief update from Dallas. My NS adjusted my shunt to drain more fluid off since I know I am having high pressure again. I am to give it a month to see if it improves. Between then and now if I need immediate relief he will send in order for a Lumbar Puncture. I also saw my Neuro ophthalmologist. My optic nerve is not swollen… thank god. However, my vision has deteriorated so bad that I could be declared legally blind. So he is referring me to another eye specialist with UTSW to see if I am a candidate for lens replacement surgery. However, since I have such a strong strength prescription, that surgery if very risky.  so being told I am pretty much legally blind, is hard to accept. And then having to wait to see if I am even a candidate for the surgery. In the meantime, The pressure in my eyes and my head is killing me.
Michelle

02/05/2023

Wow, it has been awhile since any updates and for that I apologize. Life gets busy at times. I have had good days and to be expected, I have had my bad days. My neurologist feels confident all my meds are the right fit for me as far as my migraines. I do feel like my pressure is high again and some days it has me in bed. I have appointment in Dallas soon with my NS regarding my high pressure and also appointment with neuro ophthalmologist. I do appreciate all your continued prayers and well wishes.

Michelle

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