A short survery of those who have had a lumbar puncture/spinal tap done

[Thebirdman333]

Getting one done soon and I with very severe MECFS am worried about possible leak and needing a blood patch but most importantly worried about a permanently lowering of the baseline I have atm or experiencing permanent side effects.

This is a short 30 second poll. PLEASE ONLY FILL OUT IF YOU HAVE HAD ONE DONE!

https://docs.google.com/forms/d/e/1FAIpQLSc3PX-uhWzfnVdWa2qMVuS-lag3_R_7Xjzyi6Vbq1e-9yXl9A/viewform


Thank you and I hope this poll can also be of benefit to the community and not just myself.

Cheers,

Bird

 

[lenora]

@Thebirdman333.....I filled in the survey, but I had two recent spinal taps close together. One was when I was in a coma so I don't remember it, but the second I certainly do. I would say your biggest concern is a competent specialist to do the tap. My knees aren't great and that wasn't easy, but it's not a bad test compared to the one I had years and years ago....but on the second day (after lying flat for the recommended time period), I developed a headache that was very bad. So please listen to the instructions.

Since I also had other things going on, it's possible that the headache was caused by something else...sometimes it isn't easy to distinguish what causes what. I didn't need a blood patch and that's the important thing.

You can't eat before the test, so try to make it as early as possible. I don't believe the all encompassing weakness I was experiencing for a few weeks after the test had anything to do with the test, but I may be wrong. I had many serious conditions going on and had been hospitalized 8 times in 9 mos. You are given something in the way of a local anesthetic, if that helps put your mind at rest. I tested positive for autoimmune encephalitis and it was necessary to rule out encephalitis. Compared to what I had years ago, this was fairly easy. Yours, Lenora.

 

[Woof!]

The one time the ER docs tried to do a spinal tap on me (to rule out a brain aneurysm), they couldn't position me properly and so didn't get the sample they needed. I had the worst migraine I have ever had at the time and moving in any direction was HELL. Interestingly, an injection of benedryl, together with lots of LRS, pulled me out of it. It was the first (and only) time antihistamines were used for my migraines, but in hindsight, since the migraine may have been linked to a mast cell freak-out due to mildew exposure, it makes sense.

 

[Thebirdman333]

I would say your biggest concern is a competent specialist to do the tap.

Thanks for this comforting reply. I am worried about permanent side effects, as I have heard some horror stories on that end, but this is a good hospital and also not a teaching hospital so I will not have a student doing it lol. I think I will be in good hands thankfully. I plan on asking if they use a cutting or pencil needle as well as too collect a secondary sample to store in case for whatever reason we need it measured again.

 

[judyinthesky]

I just have to add a horror story.

I got a spinal tap because of my vaccine reaction in May this year. Covid vaccine made me from mild to severe, but the spinal tap made me crash from severe to very severe.

I have had a horrible experience with the tap. I usually tolerate medical procedures well, but this was like painfully sucking any life force out of me.
I would need a patch, but I crashed two weeks afterwards and was in constant ME very severe neuro hell, in which I couldn't see a hospital or get treatment. Particularly since a patch can also make things worse before better.

The symptoms of my leak started already four hours into the procedure and are extreme. Up to this date I still have problems with the cranial nerves of different kinds. This was done at a university hospital by an assistant neurologist.

I would only do this in a life and death situation.
The difference between my ME before and after the tap is extreme for me.
Leaks don't have to be self limiting, also iatrogenic ones.

The majority will have no problem, but if you do, it is a hard journey.
If there are problems I would recommend insisting in a patch as early as possible.
Don't wait until your cranial nerves are bothered chronically.

Be particularly cautious if you suspect any connective tissue disorder playing a part in your ME.
I so wish I could turn back time and not have this tap. To me, it increased mast cell activation and neuro inflammation in an extreme way.

I'm not able to do a conversation now or have people in my room.
Before the tap, I did a one hour stress test with no problems and could chat normally.

 

[judyinthesky]

PS any results from the poll?

I am looking for people who have done a patch with severe ME but I realise they are very hard to find. Because if things go wrong they will probably not communicate anymore. Or not even do it in the first place. So catch22 for me

 

[lenora]

Hello @ judyinthesky. I'm very sorry to hear that you had a truly miserable time during your lumbar puncture.

I had two just a few months apart. I was in a coma for the first, so that was fine. That was not true of the second and a specialist who only does lumbar punctures was used. The worst at the time was having to lay on my stomach and having my knees give me trouble.

I was even OK the first night after the puncture, followed instructions about being flat, etc., but I truly lost it the following night. The headache from hell....so bad I couldn't even talk to describe the pain to the doctors and nurses. It did take a good 10 hrs. for it to stop and I was fine (but exhausted) after that night and just wanted to get out of the hospital.

I'll say that this lumbar puncture was much easier than the one I had many years ago. A local anesthetic was given and it was all over within a short period of time. I was exhausted from other illnesses that occurred at that time. I had the punctures to rule out autoimmune encephalitis; but the Mayo panels showed that I had it both times. I also had two epileptic seizures around the same time....and since they were different types of seizures, will be on medications for the rest of my life. This often accompanies older age especially if you're vulnerable.

Encephalitis also has to be ruled out as a possible cause for autoimmune encephalitis. I've been fine since, but did have a close call about two days ago. I'm watchful and take it seriously.

I'm sorry that you had a such a miserable experience. No I wouldn't be happy to have a blood patch either, and I can only hope that you can stay in your own nest and do whatever is necessary to make your life better. A hospital is good in an emergency, but an overnight visit is quite enough. May 2022 give you the gift of better health and the energy to enjoy it. Yours Lenora.

 

[lenora]

Hello @Thebirdman333.....I hope this isn't going to be too late to reach you. Actually @judyinthesky rather mentioned it.....tell them you don't want a student or an assistant doing the test. That is generally respected and in some hospitals forms are signed.

Like I said, I did have a professional doing mine...one man only and I was awake during the entire procedure. During the first surgery I had on my spinal cord, there were many surgeons involved, some just learning techniques. You don't want matters handled that way.

So if this isn't too late, please add this very important comment to your list. Keeping still is very important, so remember that. It's actually a fairly fast test.....and you should be OK. I didn't have a headache after the first one so many years ago, even though there was a lot more pain during the test. Like I said, things have improved.

@judyinthesky......how are you doing? It may take time for your body to heal from what happened to you. It sounds like you had a learner-on-the-spot doing your test. Sorry and I hope that things will go better. You made me think, though, I've had a headache that I get every evening and I've been putting it down to allergies. It feels so much like a sinus headache. The one I had in the hospital was hitting my Syringomyelia cysts even though it started in the head and worked its way down the cord. Interesting. On the whole @Thebirdman333, I had a lot of things wrong with me and if necessary, I would have another done. I'm sorry that Judy doesn't have the same story. Good fortune to you. Yours, Lenora.

 

[Bowser]

@Thebirdman333 How did your lumbar puncture go?

 

[Thebirdman333]

@Thebirdman333 How did your lumbar puncture go?

Hey y'all. It went well I have a minor headache for about a week or so but its mostly gone now and is decreasing on the daily. Don't think I'll suffer complications thank the lord. @lenora @judyinthesky

I will post results in a few weeks and if i dont feel free to bug me lol.

 

[vision blue]

@judyinthesky What kind of symptoms were you getting that seemed to warrant the spinal tap? It still wasn't that long ago, so hoping you can get back to where you were before the nightmare. Your wish you can go back in time , i know exactly what you mean by that! I've had that thought following some catastrophic outcomes. Changes my behavior for the future and was one of the things that fuels my deep hatrid of modern flow chart standard of care non indivudiualized medicine.

 

[judyinthesky]

Hello @ judyinthesky. I'm very sorry to hear that you had a truly miserable time during your lumbar puncture.

I had two just a few months apart. I was in a coma for the first, so that was fine. That was not true of the second and a specialist who only does lumbar punctures was used. The worst at the time was having to lay on my stomach and having my knees give me trouble.

I was even OK the first night after the puncture, followed instructions about being flat, etc., but I truly lost it the following night. The headache from hell....so bad I couldn't even talk to describe the pain to the doctors and nurses. It did take a good 10 hrs. for it to stop and I was fine (but exhausted) after that night and just wanted to get out of the hospital.

I'll say that this lumbar puncture was much easier than the one I had many years ago. A local anesthetic was given and it was all over within a short period of time. I was exhausted from other illnesses that occurred at that time. I had the punctures to rule out autoimmune encephalitis; but the Mayo panels showed that I had it both times. I also had two epileptic seizures around the same time....and since they were different types of seizures, will be on medications for the rest of my life. This often accompanies older age especially if you're vulnerable.

Encephalitis also has to be ruled out as a possible cause for autoimmune encephalitis. I've been fine since, but did have a close call about two days ago. I'm watchful and take it seriously.

I'm sorry that you had a such a miserable experience. No I wouldn't be happy to have a blood patch either, and I can only hope that you can stay in your own nest and do whatever is necessary to make your life better. A hospital is good in an emergency, but an overnight visit is quite enough. May 2022 give you the gift of better health and the energy to enjoy it. Yours Lenora.

Unfortunately my symptoms since the lumbar puncture only got worse and my ME still declining despite extreme resting etc. I have PEM and flu from eating now

 

[judyinthesky]

@judyinthesky What kind of symptoms were you getting that seemed to warrant the spinal tap? It still wasn't that long ago, so hoping you can get back to where you were before the nightmare. Your wish you can go back in time , i know exactly what you mean by that! I've had that thought following some catastrophic outcomes. Changes my behavior for the future and was one of the things that fuels my deep hatrid of modern flow chart standard of care non indivudiualized medicine.

It was months ago so that is a long time ago. I'm pretty convinced that I'll never be able to go back in time, such is just so profound.
I'm very severe now and have been severe before.

They did it to rule out neuro autoantibodies and because of a very serious vaccine reaction.

 

[vision blue]

It was months ago so that is a long time ago. I'm pretty convinced that I'll never be able to go back in time, such is just so profound.
I'm very severe now and have been severe before.

They did it to rule out neuro autoantibodies and because of a very serious vaccine reaction.

Months is not long at all! Though not doubt seems that way. Has it even been a year yet? please hang in there- i'm not ready to give up on things staying very severe for you. need 12-18 months. .

What was the serious vaccine reaction and how long did it take to manifest? Were those the symptoms that made one wonder about neuro auto antibodies or was that seperate? (I have plenty of neural symptomns and its always a concern for me). And on vax, I better not get started).

 

[judyinthesky]

Months is not long at all! Though not doubt seems that way. Has it even been a year yet? please hang in there- i'm not ready to give up on things staying very severe for you. need 12-18 months. .

What was the serious vaccine reaction and how long did it take to manifest? Were those the symptoms that made one wonder about neuro auto antibodies or was that seperate? (I have plenty of neural symptomns and its always a concern for me). And on vax, I better not get started).

Sorry, I've been playing this game with my body since 2019, for ME a pretty fast decline. The reason is that my body goes into flu and extreme dysautonomia mode after eating. It's hard to change because I can't pace, and I have to eat.
Yes I would say months isn't long but since May is a long time and my neuro symptoms have been getting worse every month. I am pretty convinced that they will not get better when I've reached the 12 months mark. Technically I would need a blood patch, but I am too severe to have one.

I'm hanging but realistically. People told me the same after the vac and I knew effects were just too strong that I would be able to bounce back. We know our ME bodies. My body is one of those that has never stabilised.

My covid v was one shot of Pf and made my ME from mild to severe, and that spinal tap to very severe.

I've been collecting new neuro symptoms every month despite being 100% in bed.
I'm further declining. In other words: less is needed for more extreme PEM. It's a limbo because I'm sure you know leak can have lots of chronic long term effects, but I can't have a patch. I can't stand people in the room and didn't even manage to do spinal MRT.

It's an unbelievable horror story like the one of many with very severe ME, and we and my loved ones would all love to have it differently, but unfortunately this is the harsh reality.

 

[lenora]

Hey y'all. It went well I have a minor headache for about a week or so but its mostly gone now and is decreasing on the daily. Don't think I'll suffer complications thank the lord. @lenora @judyinthesky

I will post results in a few weeks and if i dont feel free to bug me lol.

Good news, @Thebirdman333. When will you get the results? I would have been OK except for that wretched headache on the 2nd day. Still, I do think it had more to do with my cysts (inside spinal cord) than anything else. At least I hope so. Yours Lenora.

 

[Thebirdman333]

Good news, @Thebirdman333. When will you get the results? I would have been OK except for that wretched headache on the 2nd day. Still, I do think it had more to do with my cysts (inside spinal cord) than anything else. At least I hope so. Yours Lenora.

Results all came back clean so far. However - the microglial panel has not come back yet and thats the one I was looking forwards too the most... And then they also forgot to measure the csf pressure which kinda ticked me off...

I have some lower back pain at present when leaning forward like a burning. The headache is mostly gone it seems thankfully besides my usual evening headache. I hope the pain goes away soon if not I'll have to get something done to prevent it from being persistent. Don't want to end up with AA.

 

[judyinthesky]

Results all came back clean so far. However - the microglial panel has not come back yet and thats the one I was looking forwards too the most... And then they also forgot to measure the csf pressure which kinda ticked me off...

I have some lower back pain at present when leaning forward like a burning. The headache is mostly gone it seems thankfully besides my usual evening headache. I hope the pain goes away soon if not I'll have to get something done to prevent it from being persistent. Don't want to end up with AA.

It's very unlikely to develop AA from a lumbar puncture only. Only one case study published and that was recently, in 2021

More common statistically with multiple procedures and epidurals

 

[vision blue]

@judyinthesky Thanks for replying. Sucks. ok will wish for now for more diamonds to be with you...

 

[Bowser]

For those who had a lumbar puncture, can you please say what your opening pressure was and whether you have an empty sella on your MRI?