After my IIH VA Shunt surgery headaches and dizziness have returned. With a nicked nerve in the throat seriously damaging my vocal cords and impeding me from swallowing properly, I am quite frustrated. Yet, my old headaches returned, waking up in such pain again has really done me in. This chronic pain of pseudotumor cerebri coming back, on top of everything else is not something I ever expected.
22 Headache Update:
After my second Covid Pfizer vaccine I knew that I was experiencing lots more headaches than usual. Here is my experience. This is the beginning of what I was hoping would be an open discussion.
Video 12: Lumbar Puncture – The aftermath… (1/5)
Intro: approximately three and a half weeks after my lumbar puncture, as I had mentioned on a previous video, I am discussing what, in my experience, I consider to be an optimal spinal tap. By this I am not aiming to focus at results, although these are discussed, but I talk about what I consider to be some of the indicators that would make it for an easier patient experience.
Video 13: Lumbar Puncture – Hospital protocol (2/5)
The second video in this series is dedicated to discussing the hospital itself: the protocols before, during, and after. This discussing is not yet focused on personnel (doctors, nursers, transport staff, etc.), as I would like to dedicate a special segment to those people that care for patients.
Video 14: Lumbar Puncture – Patient services (3/5)
The third video in this series is dedicated to patient services in the hospital: the nurses, the transport and other staff, etc. These seeming external dealings can actually be a crucial part of making any medical procedure a more comfortable one.
Video 15: Lumbar Puncture – Medical (4/5)
The fourth video in this series focuses on the medical aspect of this lumbar puncture procedure day. I am specifically discussing on what occurred during the actual spinal tap, what instruments were used, equipment, etc., to facilitate the outcome. This segment is particular poignant to me as my doctors have asked for a smaller gauge needle to be used to minimize the need for a blood patch after the procedure.
Issues discussed in this videos and, honestly, my personal hopes and suggestions for a successful and comfortable procedure are: 1) the avoidance of touching a nerve; 2) the proper use of fluoroscopy so that the needle is only inserted 1 time accurately for CSF removal; the use of an atraumatic needle, or a 22 gauge needle (smaller than the typical needle used), to try to minimize the need for a blood patch; 3) the correct physical position of the patient for a lumbar puncture procedure; 4) step-by-step detailed explanation of what is being performed. In other words a communicative doctor in terms of procedures, results (including opening & closing pressure), etc.; and 5) a proper prep, including iodine sterilization procedure.
Video 16: Lumbar Puncture – Results (5/5)
The last of this video series on the subject of all the possible aspects of an optimal lumbar puncture includes the miscellaneous: what can be expected the day before, day after and subsequent days, and lastly, a discussion on the actual results as I have learned them to be ‘understood’ by the different doctors I have encountered throughout my experience; and as I have read them in numerous journals articles. This is by no means the last word, nor should it be taken as medical advice.
Furthermore, as I explained in the video, I completely understand that your personal specialist might have a different opinion and this is what you should listen to. Lastly, Idiopathic Intracranial Hypertension (IIH) has a myriad of symptoms. An LP result, elevated or not, should not may taken for diagnosis in isolation. It is, usually, a telling factor, but the biggest telling factor in this condition are the eyes. This is why consultation with a neuro-ophthalmologist is crucial in the diagnosis and treatment of this condition.
Video 6: Symptoms (Addition)
There is one more symptom that I would like to mention at this time. Please be aware this is not an essay issue to discuss, so proceed with caution!!
Video 6: Symptoms (Repeat)
Please note: there are two copies of a “Symptoms” video. The reason for this is that I simply forgot I had done the first one (even though I have a written running list). I have left both of these up (plus an addendum) to show the kinds of issues that patients with PTC deal with on a regular basis. It is also obvious the difference in my attitude (even though I am trying very hard), my demeanor, behavior, etc. I am barely coping in this video…
This video details some of the known and typical symptoms of Pseudotumor Cerebri (PTC)/ Benign Intracranial Hypertension (BIH)/ Idiopathic Intracranial Hypertension (IIH). I also discuss my experience with these symptoms, and others not as ‘typical’, throughout my journey thus far, since 1992, with this condition.
Video 6: Symptoms of Pseudotumor Cerebri (PTC)
This video details some of the known and typical symptoms of Pseudotumor Cerebri (PTC)/ Benign Intracranial Hypertension (BIH)/ Idiopathic Intracranial Hypertension (IIH). I also discuss my experience with these symptoms, and others not as ‘typical’, throughout my journey thus far, since 1992, with this condition.
Please note: there are two copies of a “Symptoms” video. The reason for this is that I simply forgot I had done the first one. I have left both of these up (plus the addendum) to show the kinds of issues that patients with PTC deal with on a regular basis. It is also obvious the difference in my attitude (even though I am trying very hard), my demeanor, behavior, etc. I am barely coping in this video…