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Worried about my upcoming lumbar puncture. Has anyone had bad experiences? CSF leaks?

Messages
97
So my new neuro wants me to get a LP to check for viral neuroinfections (i don’t see the point tbh bc i’m not displaying any signs of acute neuroinfection). I’m super worried about getting a CSF leak and that causing me further issues. I suspect I have spinal issues but there’s no way i could get checked for CCI/chiari in the part of the world where i live.

The neuro won’t give me IVIG otherwise. I’m severe. I hate that he’s pressuring me into this and i don’t trust his judgment when it comes to CFS. He is not a CFS specialist and has only treated a few mild cases.

Should i go through with this? Am i worrying over nothing? The majority of CFS patients i’ve spoken to did not have a negative experience but a few did.
 
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lenora

Senior Member
Messages
4,975
Hello @serafim. I can certainly understand your concern because about l-2 years ago I had two lumbar punctures (spinal taps). There are times when they're absolutely necessary to rule out all infections. In my case, I had unknown autoimmune encephalitis...and it can do great damage to the brain. The only way at present of ruling it out is via the lumbar puncture.

I was unconscious for the first, (naturally as I had a number of serious problems), and the sample was sent to the Cleveland Clinic. About a week later I had symptoms of something else and again, a lumbar puncture was needed. Yes, I've know people who have needed patches and I did have some difficulty that was not common.

Unknown to me one of the doctors had abruptly stopped one of my long term medications. Never told me, of course. Anyway, the test was fine....really over in no time at all. Local anesthetic prevented it from hurting. I stayed flat until I was told I could gradually sit up. This was during COVID so there was a nurse shortage.

To shorten a long story, on the 2nd day I started speaking in a loud manner and really just didn't care who was bothered by it. I felt like my mind had taken flight. Finally, that evening I was given an injection that certain silenced me, but left me with an extreme headache and pinging sensations all over my back. It was so bad, yet somehow familiar and yet I couldn't explain the feeling to anyone. I finally remembered that I had the exact same sensations when I had surgery for the cysts in my spinal cord. A horrible headache accompanies this....and I still have it occasionally today. Other days I have sinus headaches, but I have allergies so I simply live with it.

I wouldn't think they would do a lumbar puncture unless absolutely necessary. My second sample, again sent to the Cleveland Clinic, confirmed that indeed I did have autoimmune encephalitis. My crazy yelling and talking was the only symptom.

After the diagnosis, I had to be seen by a psychiatrist because of damage to certain parts of the brain. This is a serious matter and no, ordinary tests don't provide the answers the doctors need. I was seen over 3 days and finally given the OK for discharge. I have some memory problems, but I have insomnia and I am an older woman....what do I expect? I came out of that ordeal with two types of epilepsy and have to take meds for each one. No, the lumbar puncture didn't cause them, and doctors saw exactly what my seizures were like....but I couldnt' remember anything. Even now I have the extremely rare seizure and can't remember falling and breaking my wrist for example.

This would be my only real caution if you decide to do the test: Why is it necessary and exactly what are they looking for? You'll only have the one test. If your knees are bothersome, ask for the puncture to be done on your side...my only complaint was that it was hard on my knees. Apart from that, there were no problems whatsoever. The method of getting the sample was much easier on the patient.

Things like epilepsy become more common as we age...a fact that I didn't know. I've had 4 lumbar punctures over probably 40 years. Some things like autoimmune encephalitis do great damage to the brain...you need treatment and without it, you may not be in good shape. Stop reading about all of the things that can go wrong.....it causes anxiety plus. It's never easy, but you really have to weigh your options. I wish you good fortune and hope that all goes and turns out well. Yours, Lenora
 

Tammy

Senior Member
Messages
2,200
Location
New Mexico
I hate it when Dr.'s put on the pressure for us to do something we are not comfortable with. I've never been comfortable with getting an LP and their have been several Neurologists over the years that wanted me to get one. I always just politely told them I wasn't comfortable with the procedure.

Curious................did any of the CFS patients that you spoke to tell you that their LP results offered any clues or insights into their medical problem?
 

Wayne

Senior Member
Messages
4,360
Location
Ashland, Oregon
Should i go through with this?
1) "No signs of neuroinfection..."
2) "I'm super worried...."
3) "He's pressuring me..."
4) "I don't trust his judgment..."
5) "Not a CFS specialist..."

Hi @serafim -- Your post was relatively short, but the above comments say volumes. I think you've answered this question for yourself. I myself would never do anything that didn't feel intuitively right. There's likely other options you could explore if you didn't get IVIG from this neuro.

Take care!
 

Judee

Psalm 46:1-3
Messages
4,538
Location
Great Lakes
1) "No signs of neuroinfection..."
2) "I'm super worried...."
3) "He's pressuring me..."
4) "I don't trust his judgment..."
5) "Not a CFS specialist..."
Plus, "...has only treated a few mild cases."

Meaning he's unknowledgeable about severe ME and possibly has an ego that likes to experiment on people. Yikes.

I think you might want to get a 2nd opinion.
 

lenora

Senior Member
Messages
4,975
Hello everyone......I wanted to say that at least at the time I had Autoimmune Encephalitis, there was no way to determine the illness except for a LP. This was then sent to a specialized lab at the Cleveland Clinic.

AE can damage the brain terribly....and fast. Yes, meds can help, but they're only good if a final diagnosis was made. I can't say I'd raise my hand for a LP in the future, but I can't say that my symptoms were terribly obvious, so that worked against me. Besides, it would have been assumed that my two types of epilepsy, and heart problems were the major culprits.

The type of brain damage you're left with is hard if not impossible (in most cases) to reverse. So those were the choices. A team of neurologists was all for it (I live in a city) and the LP itself was done by a surgeon who does nothing but that procedure. I know I would have been on my way to a mental ward if my behavior had continued. To be honest, I can't say I'd blame them.

I'm constantly amazed at the damage a virus can do....and that was another one. There were very few known cases at the time I had my round with it....and it has affected my short term memory. I was lucky though, although I've never regained what was lost. No recurrence and yes, more is now known about it, but an LP is still the preferred way of diagnosis. A serious talk with the neurologist (I hope) is in order. Encephalitis is not uncommon, but AE is. It's now thought that Encephalitis can go into AE. Good wishes. Yours, Lenora
 
Messages
97
@Wayne @Judee this doctor is the closest thing to a CFS specialist i was able to find in my country. it’s the only hope i have of receiving any kind of treatment. i should have mentioned that. he was really adamant about me having to get the LP. i don’t think there would be any use arguing. i’m sure you guys know how doctors get when you’re not ready to do everything they say with 0 reservations 😅
 

lenora

Senior Member
Messages
4,975
Hi @serafim....I don't know where you live, but I do hope you're seeing a specialist such as a neurologist. Generally speaking, they're the top tier of medical specialists and are very well versed in the brain and spinal cord.

As with any doctor, not all are ready to go the extra mile, but if he is insistent, I would feel OK asking him what he's looking for? He may simply be trying to rule out multiple illnesses. An MRI can't always do that. True, nerve conduction tests are also used, but then so LP. Yours, Lenora
 
Messages
97
Hi @serafim....I don't know where you live, but I do hope you're seeing a specialist such as a neurologist. Generally speaking, they're the top tier of medical specialists and are very well versed in the brain and spinal cord.

As with any doctor, not all are ready to go the extra mile, but if he is insistent, I would feel OK asking him what he's looking for? He may simply be trying to rule out multiple illnesses. An MRI can't always do that. True, nerve conduction tests are also used, but then so LP. Yours, Lenora
thanks for sharing your experience Lenora, and no, he’s not even looking for MS or anything like that. he’s gonna run a PCR test to look for viruses. so it seems like he has a personal theory of CFS (that it’s caused by neuroinfections, which i haven’t heard of before) but i don’t think that such an invasive procedure is warranted in my case since i’m displaying no signs of an active infection. i doubt there’s much evidence behind his theory and i don’t like to be experimented on
 
Messages
95
I’ve had two and had no problems afterwards. In my hospital there’s an option to have a guided lumbar puncture (by radiology imaging or something like that?) which I didn’t have either time but if I ever have to get another one I’m requesting it. Honestly, I was told by both doctors that gave me an LP that I was an especially difficult patient to give an LP to and they both had to make many many attempts at it. Despite that, I still had no issues. It was just unpleasant, not painful.
 

lenora

Senior Member
Messages
4,975
@serafim.....Just go where your heart tells you to (insofar as the LP is concerned). If you're even worse in a number of months, you can always talk it over with your doctor again. Good luck. Yours, Lenora
 
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