Dreading “high-volume lumbar puncture”

I wanted to let everyone know that I had the high-volume lumbar puncture and it was not too much of an ordeal. It is not the kind of experience I want to have on a weekly basis but I was able to tolerate it well enough. I took a milligram of lorazepam before the procedure and I think it helped a lot. I still felt a small amount of pain or “discomfort,” but it wasn’t my first spinal tap, so I knew what to expect, more or less.

I am now planning to go ahead with the shunt surgery. My wife immediately noticed that I was steadier on my feet and the physical therapist also said she could see a difference.

I did have mild headaches for a few days after the puncture, but it was easy to tolerate with acetaminophen or Celebrex.

I was surprised to hear from the neurosurgeon that I will have to spend a couple days in the hospital after the surgery, because it seems like only the most serious cases have to stay overnight nowadays. The operation is going to be in the same hospital where I had my tonsils removed back in 1976 when I was in high school.

A LP is one of the most basic procedures doctors learn how to do. It’s really a simple procedure whether they remove 10-15mi or 50ml you cannot tell what when it’s happening. Many times they will use a small amount of Novocain to numb the site and they will do this for some patients. You’re over stressing yourself for nothing.

@jenatsky, I appreciate that a lumbar puncture may be a basic procedure for the physicians. Thank you for letting people know that it is a common procedure. As a nurse, you know that for the patient, the procedure is not common and not something they face regularly. Being anxious about a procedure is common. 🙂

@ltecato, thanks for returning to share your experience with the lumbar puncture procedure and that all went well and better than you anticipated. I always appreciate it when people come back to report how they did. I'm sure your story will help someone who may have to face this procedure in the future.

I wish you all the best with the shunt surgery. When I had my tonsils removed back in the 70s, I remember the ice cream. 🙂 When will you have the surgery?

The date of the surgery is not certain because my primary doctor will have to communicate with the neurosurgeon’s office to do the necessary paperwork. The neurosurgeon said it could be the first week of March but my wife thinks it will inevitably take longer.

I never got any ice cream after my tonsillectomy, but really I was in no mood for anything but morphine or Demerol because it was extremely painful. 😣 I have often thought it was odd that the pathology lab did not find any cancer in the tissue that was removed during that procedure. Eventually I had a big lymph node swell up on my neck about six months later, but even then it was mistakenly diagnosed as Hodgkins. I nearly had to have a laparotomy and splenectomy for staging but a visiting pathologist looked at the slides from my neck and told the oncologists that he thought it was either nasopharyngeal or testicular cancer.

@ltecato I think I've commented about this before, but my 'high volume' spinal tap went much better than expected. No headache. I think you're more likely to get the headache if they 'pull' the fluid out, rather than letting it drip out slowly. It took 90 minutes for them to get 29.5 mL of CSF- they wanted 40 mL. Some context- I'm a retired RN with 50 yrs. experience, and all those years I was petrified to get a spinal tap. Truly- the only procedure I was absolutely scared of.
I have a shunt and it's been a process! It's opened on the lowest setting & for right now, appears to be working. I was only in the hospital overnight.

I was diagnosed with NPH, the final factor of diagnose was the longer drainage of a lumbar puncture...3 days, every hour, 24 hours of discharging fluid. It was a piece of cake, honestly. The only frustrating thing was having to lie in bed for 3 days, being woken up every hour and having to alert someone when I needed to use the toilet. I also did not experience any headache. Other than that, I am extremely very happy I have my life back and walking. Wishing you and everyone wishing you good health.

@ltecato I went home the day after my surgery, mid day. I could not wait to go home. I was completely fine, the only pain medication I had was 2 tylenol capsuls. No pain at all. Plus I could walk!! Good luck and good healing!!

I wanted to report that I went through the shunt installation on March 20 and ended up staying in the hospital for a week. For the first 24 hours I was in the hospital ICU, which I understand is routine. The first-day pain was bad at times and accompanied by nausea and vomiting. I was given medication for both and I believe it worked well enough. The pain was not only in my head but also in my upper body, I assume along the path of the drain tube.

I have a few complaints, but first I will describe a positive experience that I can’t praise enough: This hospital actually does an excellent job of venipuncture and phlebotomy. (I went to a laboratory chain a week before surgery to get a blood draw and the technicians there were unable to get anything out of me after two sticks. The company has a new policy that sets a limit of two failed attempts per visit. I went to my primary doctor’s office and a staffer was able to get the required samples after three sticks. At least she didn’t torture me in the process.)

I was dreading the IV setup before surgery because that same process took an inordinate number of stabs the last time it was done on me for a surgery. My wife was in the pre-op with me and she says it 10-12 failed attempts. I must have blocked it from my memory because I only remember five or six.

But I’m happy to say that this time, the phlebotomist found the vein the first time and even better I felt no pain. I had trouble believing it worked so well. The IV stayed in place for entire week I spent in the hospital and never gave me any problems, no leaks or bruises. I also had three or four blood draws with minimal discomfort and never more than one poke at a time.

Now for the negatives: I am almost completely deaf and have only one ear that still functions with a hearing aid. The surgical team had to remove it before I was anesthetized. After I woke up, they were trying to tell me things and ask questions but my hearing aid was stored with my other belongings and they didn’t bother to get it back to me. I asked them to write down what they were saying so I could read it but they were not willing to do that. This is perhaps the third time nurses have disregarded my request for an ADA accommodation. First of all I don’t understand why I get so much resistance when I ask for this. It’s not an expensive accommodation, nor is it excessively time-consuming or labor-intensive. Why is it too much to ask? Do hospitals tell nurses to disregard ADA requests from hearing aid users? Or do they tell them that the ADA has scarcely any teeth and compliance is optional? Do nursing schools tell students that they can get away with ignoring requests for accommodations?

Second hearing-related gripe: Medical staff repeatedly attempted speak to me through my deaf. I assume that they thought it was my “good” ear because it doesn’t have a hearing aid. In fact, the opposite is true. This ear is hopelessly destroyed by a combination of cancer and radiation for that cancer. Doctors and audiologists have tried repeatedly over the years to find hearing aids that work, but eventually gave up and focused on the ear that is only ~95 percent deaf.

Final complaint: Staff were told that I have severe dysphagia and require a special diet called “soft mechanical.” A speech therapist visited me while I was still in the ICU and was very well-informed about dysphagia and what can be done about it. I told her I lived for a time with a feeding tube but I had so many problems with it falling out and getting infections at the site of insertion that I eventually quit having it replaced. I gave a long list of reasons why I never want another placed in me until I am permanently in a nursing facility that can handle the maintenance of a tube and feeding pump.

I told her my speech-language pathologist has been requesting a modified barium swallow study for over a year but insurance has thrown up barriers that my doctor’s office can’t get around. So the hospital offered to set up the procedure in its radiology department. I eagerly agreed. It sounded like a great deal.

But what happened was, the test results were interpreted as ominous, so ominous that the SLP who did the test told me that she was going to put “NPO” on my chart. This terrified me, because it would mean that I would not be allowed to eat or drink anything but crushed ice as long as I was in the hospital. I have been NPO for months and it absolutely nothing I want to experience again.

After my feeding tube fell out for the last time, I was lucky to see an ontological oral surgeon who gave me prescription for daily doxycycline to prevent osteoradionecrosis. Coincidentally, I believe, it has prevented me from getting aspiration pneumonia, which the feeding tube was also intended to prevent (but didn’t). I believe if I was taken off the antibiotic, I would start getting pneumonia again.

The thought that I might be forced to get a new feeding tube was a source of major concern. I told my wife to come get me out of the hospital because I was certain they try to starve me until I agreed to get another tube in my stomach. On top of that, I feared that the NPO order would cause my doxycycline to be cut off because the prescribing doctor would be threatened with career-ending consequences.

I buzzed the nurse station and told them I was going to leave and ask them to remove my IV. No one responded, so while my wife was en route to the hospital, I took off my heart monitor to start preparing to leave. That brought a nurse to my bedside who asked why I removed the monitor and I told him I was not going to stay if I could not eat or drink through the mouth.

The nurse talked me down. He told me that he had personally intervened when the NPO popped up on my chart. He told me that the SLP had no authority to do that. I was relieved and grateful. That nurse will always be my hero.

The next part of the saga is so confusing that I don’t know what to believe: The SLP came to my room the next day and denied that she ever tried to get me designated NPO. I’m pretty darn sure that she told me that the NPO was already on my chart, but she was very and wanted to give me tips on coping with dysphagia, so I spoke with her for about 30 minutes and parted on friendly terms.

However the ordeal gave me such a bad feeling that it caused me to leave a skilled nursing facility the next day. The staff there got off on the wrong foot by refusing to bring me oral hygiene supplies the first night and I started to get paranoid about being robbed or assaulted while asleep and without my hearing aid in place. I left the next day AMA and am now home with my wife and cats. I’m afraid I lost my patience and was less than diplomatic when explaining this to the rehab facility staff. But I tried to do it the nice way and the staff did not seem to be taking me seriously, so I walked away and returned home with my wife. She told me the cats were missing me but they seemed pretty nonchalant upon my return.

Addendum: I forgot a weird thing that happened after the surgery: nurses asked me why I had several new holes around my abdomen. I knew from a previous “minimally invasive” procedure that surgeons will poke instruments and fiber-optic devices into a patient in order to do the job without “opening up” the patient like they did when I was a young cave dweller. I don’t work in the medical field and I know this from watching TV. I’m a little surprised that nurses don’t, but no harm done this time, I guess.