Return of pre-ETV symptoms despite normal MRI and flow study. Has anyone experienced this?
Please read!!! I need help and advice. I am looking for opinions and advice from people who had (or someone or people you know who had) an ETV or shunt failure even though they had normal scans. I am very sorry in advance that this is long, but I wanted to give as much information as I could to get the best advice and opinions. It would mean a lot to me if you could read it.
For reference, I have non-communicating hydrocephalus. More specifically, aqueductal stenosis. I am currently 21 years old. I had my surgery when I was 18 years old. There were no complications during or after my surgery and I have been symptom free for the past 3 years up until the last 3-4 weeks. From what I do know from what happened in the surgery was this, they went in to drill the hole for the ETV. They noticed the area where they needed to make the hole was smaller than usual and they were about to not make the hole. They were about to place a shunt. They ended up making the hole for the ETV as there was just enough room to make the hole and not cause any serious complications. I am also unsure of what size my ventricles are at right now or what they were prior to surgery. However I do know they measured 4.2 cm in size a few months after surgery. I believe they told me there was little to no decrease in the size of my ventricles after my surgery. I would have to pull up my pre-operative notes to see if they say anything about the size of my ventricles.
Recently in the last 3-4 weeks I have had a return of all my pre-surgery symptoms. They feel identical to what I experienced in the days and weeks leading up to my surgery for the ETV. The symptoms fluctuate from day to day, some days are much better than others, but overall they have continued to recur everyday. The surgery was preformed 3 years ago. The surgery was successful and all my follow ups have been good since.
We called my neurosurgeon’s office and informed them that all my symptoms have returned and feel the exact same as before my surgery. They told us we should go to the ER and we did. In the ER they did a CT Scan and the CT Scan showed slight swelling around the ETV site. We were told by the hospital we went to, to go to where my neurosurgeon is located and to go through the ER. They did an MRI with a flow study and everything came back clear. They said the hole was opened and there was flow and there was no increase size in my ventricles. They also preformed an eye exam and my optic nerve looked perfect and untouched. I will note that I have never had an issue with my optic nerve, not even before my surgery. They ordered another MRI 2 weeks after my ER visit, which I had done a few days ago.
My symptoms are:
-positional headaches (also just normal headaches) (gets worse when i am laying down and bending over)
-nausea (no throwing up)
-feeling dizzy, unsteady, “off”, “weird”
-feeling as though i am “drunk” even though i am not drunk
-sometimes (not all the time) i will get “fuzzy” vision
-more tired than usual
-more irritable
I am trying to get opinions and advice (especially from people who had (or someone or people you know who had) an ETV or shunt failure but it didn’t show on the images or anything (or it was something that was hardly noticeable on the scans and they passed over it)).
Is it possible an ETV can fail even if all the images and tests come out clean?
Are there any other tests I can request?
I am having another follow up appointment in regard to my most recent MRI that I got a few days ago.
Is there anything I should ask or say during my appointment?
Is there anything you or your friends and/or family did and/or asked to get the answers and help you needed?
Is there anything I can do or say to advocate for myself?
I cannot think of any other questions I could ask, but if i think of anything else I will edit the post. Feel free to ask me any questions as well. Feel free to leave answers to questions you can think of even if I didn’t ask.
I have done some research prior to posting this and I have found that this can happen and it is possible. However, I am looking to see if this has also happened to anyone else and what they did to get the help they needed. (I am not sure if any of this is true but..) From my research I found that the brain could become “stiff” after surgery, this can result in the ventricles not expanding even if the ETV is failing. I also found that the ETV hole could be open and show flow but that it doesn’t mean that a lot of it is flowing through the hole. It also said something about how the fluid could be getting stuck somewhere else past the hole that they are not catching and/or seeing. I have also read that the hole could be pulsing and showing/mimicking flow even if there isn’t none or very little. I have also read about how the fluid could possibly not be absorbing into my bloodstream properly and/or at all.
***** I am not asking for a diagnosis. I am looking to find advice and opinions. I am also looking for people who had similar experiences.
Thank you in advance!