Lumbar Puncture Procedure, December 2023
After yet another Lumbar Puncture procedure for IIH, results show that the VA shunt placed during the May surgery is not functioning correctly and further procedures are required. These news have been difficult to take. Please join me in a discussion of the present situation.
The Return
After a hiatus, I have decided to share with you not only the joy of ‘getting better’ but also the bumps on the road and the fall backs. Here I am again to give anecdotes and stories that may make you laugh, think, or perhaps even shed a tear. As always, many hugs to all of you!
IIH: Cough
My coughing attacks continue and getting worse. This saga is becoming a real issue and one that was completely unexpected and leaving specialists speechless. I am truly being tested physically and mentally. An interesting phase in my life and yet another outcome of a VA shunt that was completely surprising to me.
Pain
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.
Welcome to my path to another surgery!
After a long time of resisting surgery, my body is giving strong indications (future video) that I need to go through yet another operation. I ask for all your support, positive vibes, and prayers (if you are so inclined) to wish me the best in this endeavor.
My plan is, with my hubby’s tech help, to give you as many updates as I possibly can. Please be aware that for the hospital’s privacy I will not discuss any names. Also, I will include a black screen at the beginning of any video that might contain possible sensitive material (bandages, etc.) I will not be videotaped with anything that is past a certain level of décor. This would simply be unfair to both of us, my privacy and your taste.
Again, thank you very much for all your support. I so appreciate your kindness, the love you send me, and all the support through all this years. Many kisses always!
21: Would you have this surgery for your headaches?
When doctors tell me that we have reached a dead-end road with pain medication for my headaches the next step proposed is a left side of my body VP shunt procedure with a possible septal fenestration. I am not too keen on this idea due to its risks. My question to you is: what do you think? Would you do this surgery if you were in my shoes?
As you can see, especially if you have seen some of my past videos, I am a bit lethargic. The pain is quite severe at this time. I have put on my best face but it is truly not easy.
17. Do you have COVID-19 symptoms & Pseudotumor Cerebri? My experience…
I began to experience mild symptom at first, such as: throat ache, diarrhea, and an overall flu-like sensation. These progressed over the weekend into body chills and aches, very severe and acute headaches (which are my weak spot having Pseudotumor Cerebri), and I went from no fever to a low-grade fever.
Having so many medical issues I am not one to panic. But I am also very aware that I need to safeguard those around me. Hence, I called my doctor who suggested, due to my symptomology, a COVID-19 test. Now mind you, I live under very strict precautions as I am high-risk. So, how would I have ever contracted a virus, any virus/bacteria? The question still remains. Curiously, and even though I was sure I did not have this particular virus, the wait for the results was my new understanding of the possible horrific outcomes and ramifications I might be facing. Is living in this ‘fear’ the new ‘normal’, I wondered?
Yet, fortunately, my test came back negative. Yippee! And also, yet, there was also a lack of care for whatever ailment I was dealing with, which was a another new outcome to me.
I share this video, and this experience, when I was still feeling quite ill, especially with a bad headache, wishing to get off camera and quickly as possible; but knowing that maybe this might help someone out there. May all your results be negative, and may you continue to search for health in this seemingly void of answers. Thank you for listening!
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.