ArtistDi
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posted
The doctor that I am working with (llmd) wants a spinal tap done on me because of progressive neuro symptoms and seizures. Although he doesn't routinely ask for them, he feels in my case, it must be done to see if anything infective is in the spinal fluid.
Some things are not showing in my blood after I used to test + for them a couple of years ago, but I have been off treatment for 2 years.
Did your llmd or neurologist do it? Anything I should know about? What kind of anaesthesia (sp) was used at needle entry?
[This message has been edited by ArtistDi (edited 13 February 2005).]
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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Veteran of 7 spinal taps here including two a few months ago.
Anesthesia-wise, they just inject lidocaine into the area. But to really reduce the discomfort, ask for a pediatric-sized needle! It will take longer for them to collect the fluid (slower flow through narrower needle) BUT (A) it is less uncomfortable going in, (B) the hole (in your epidural space) is smaller, less fluid leaks, less chance of "spinal tap headache", and (C) your back feels better (not sore) in a day or two instead of several days. Just lay low the day you have it and the next and that speeds the healing along.
As for the whom part, who hasn't done it on me? But of all of them, the two that went the best were both neurologists (different ones!). If you need a local guy, my neurologist from Holyoke did it on me at Cooley Dick (he was terrific!). Also, oftentimes anesthesiologists do it (they do a thousand a day giving epidurals to women). If you go that route, AVOID LIKE THE PLAGUE Dr. Lee at CDH. She is horrid. My LLMD did it once and, sad to say, provided one of the lesser experiences.
You'll likely be baraged here by folks saying "don't do it!" But if you have other stuff going on neurowise and tests are needed to rule out other things or figure out how to treat you, then doing the above will help you along.
If you need any more tips or just want to talk the whole thing over "with a veteran," feel free to email (you still have my email address, right?).
All the best, ~Dura Mater
[This message has been edited by duramater (edited 13 February 2005).]
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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posted
Jordan had a spinal tap on 2/4. His opening pressure was 275 which is high. He took .50 of Xanax before we left home.
The procedure was done by a radiologist. He uses fluoroscopy. The tap doesn't take very long. Jordan had 26 cc of fluid drained was it took a little longer.
He had to stay there are 1 hour on his back. He did develop the spinal headache on Sunday. It took until Thursday to feel better.
The nurse said very few people develop a spinal headache. People with headaches are more likely to.
Jordan had a spinal tap in 2001 and the same doctor did both procedures.
ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Durameter, could you email me once, as I don't think I remember the email address.
Would have it done at Cooley Dic and I see a neuro named Dr. O'Connell in 'Hamp. Ever have him do it?
I don't want just anyone.
Cave--Good idea. LLMD wants the fluid sent to Igenex and MDL for pcr, I believe. Thinks something is really pushing the seizures and blood isn't showing whole picture.
Di
[This message has been edited by ArtistDi (edited 13 February 2005).]
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
I have had 2 spinal taps. Both were done to test for CIDP (chronic form of GBS), so no testing was done for Lyme.
The first one, I was 13 and my pediatric neurologist did it. It was HORRIBLE. I was so nervous they had to give me a sedative (may have been why it was horrible - I was tense). It hurt really bad, and the doctor had some problems resulting in him hitting some muscles which hurt as well. I spent the next week flat on my back and missed school. The headache was horrible. The tap showed him that my CSF protein was 107, which is high (supposed to be under 40) and shows that there is inflammation in the body.
My 2nd one happened this past spring when I was 21. It was much better. I had it done at Mayo, by a lady who does them all day. She played soft music so I would relax before and during the tap. This is very important I think - you need to relax. It hurt much less, and I had a slight headache the next day, and that was it. They gave me a hint there - the day after, if you can tolerate caffeine, drink lots. After every cup of a caffeinated beverage, I was told to drink a cup of water. So I was switching between Mt. Dew and water, and I barely had a headache.
Oh, and the results from that test was that my opening pressure was high (over 200) and my CSF protein was still rather high (69).
So have the doctors check the pressure and protein as well. This may show inflammation in the body, which may be further aggravating your nerves.
Good luck!
Posts: 26 | From West Bend, WI, USA | Registered: Jan 2005
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ArtistDi
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Oh, you guys are great! Thanks a million.
I had an epidural during labor, so I kind of get the general picture of the needle work.
Would a spinal show menigitis?
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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Foggy
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posted
I had 2 done by my pcp. It wasn't valuable for Lyme but diagnosticaly valuable as it ruled out other conditions. The 1st wasn't smooth as I didn't take a sedative and was too tense. The 2nd was done with plenty of Valium and went well, notwithstanding the nasty headache I had for a week. I had to lie down constantly to keep the pain down. Ask the MD about the potential for post-tap headaches.
In hindsight, I'd probably insist that it be done by an interventional radiologist or Anesthesiologist under fluoroscopy for safety and accuracy.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I have had 2 spinal taps-both by neuro. I did not have any problems at all with headaches etc. The back was a bit sore afterwards-but nothing crazy. I did take a sedative before both of them.
Good luck - let us know how it goes.
Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003
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posted
Jordan's intracranial pressure was high and 26 cc of fluid was taken out, so I think he is more likely to get the spinal headache.
I found this information online when I was searching for the cause of the spinal headache:
The average sized adult human has roughly 150ml (a little less than 8 oz or 1 cup) of a clear watery fluid, called cerebrospinal fluid (CSF) in the central nervous system, surrounding the spinal cord and brain. One of the functions of the CSF is to provide a protective layer, essentially to act as a cushion to shield the brain from the hard bony skull and to provide a soft environment for the blood vessels to supply and drain blood from the brain. There is a thin membrane surrounding the brain and spinal cord called the "dura". When there is loss of CSF for whatever reason, usually as a result of a hole in the dura, the brain tends to sag, due to loss of this protective fluid cushion. This brain sagging causes stretching in the connective tissues in the cranium, this stretching is sensed as pain, and hence the headache. Also, the loss of some CSF causes blood vessels in the brain to dilate, which can also be perceived as a painful sensation. The technical term for this kind of headache, known commonly as "spinal headache", is post-dural puncture headache, or PDPH.
ArtistDi
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Thanks for the explanation, Pab, and for looking it up. I want to play it safe as I can because I do have seizures.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
I had 1 spinal tap done, a year ago. I found it to be a virtually painless and simple procedure. I drank a coke after it was finished, and sat still for 5 minutes. I then resumed fairly normal activity, and felt fine. It was a little tender at the site, but that was it.
I think it's pretty much purely mental, like most medical procedures of the sort. It only takes a minute, and if you don't freak out about the needle, you'll likely be fine.
Posts: 160 | From Frederick, Maryland | Registered: Nov 2004
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beachcomber
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A technician in my Neurologist's office did my LP. I was told that if the Dr. did it I would have to be admitted to the hospital. I was also told that I did not want my Dr. to do it because she doesn't do them as often as the LP specialist.
All was well until the needle hit the nerve that goes to my bladder and put an abrupt halt to the ability to urinate. So, I ended up in the hospital anyway with a catheter up me to drain my bladder. The office staff was not equipped to handle this kind of mishap. I was not a happy camper.
LPs scare me a little. Plus, the PCR came back negative, even though my blood levels were highly positive. Guess the timing has to be right with the LP. I have/had tremors, shaking head, slurred speech, lots of neuro symptoms - still the PCR was negative. Am being treated for neuro symptoms anyway by my Lyme MD.
My advice is to check the credentials of the person doing the procedure. Don't be afraid to ask how many he/she has done.
posted
While it's always good to have a positive mental attitude, I think in this case it really depends on the doctor who's doing the procedure,the size of the needle they use and the time they take to withdraw the fluid.
I had mine done by a neurologist. She used a small needle and VERY SLOWLY withdrew the fluid. I had minimal pain during and after the procedure (with no sedative) and didn't get a headache.
cootiegirl
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Member # 3216
posted
My LLMD did my spinal tap. It was a virtually painfree experience. This doc was very skilled at performing the procedure and I did everything that I was supposed to (drinking cola, staying on my back, etc). I only had some slight back stiffness the second day, but other than that, my experience was uneventful.
I didn't care to know the gory details like the size of the needle or what exactly he was doing when, because I'm a huge weenie. It did not show lyme, but it did show bartonella and ruled out other health issues. cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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ArtistDi
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I spoke with neurologist yesterday on the phone, and will see him today. He said he could do the tap as he does them all the time, and uses a smaller needle than usual. He said he does them in the office now because some insurances require deductibles and a patient was once charged $500 in hospital.
We discussed my seizure activity, but he said if I had one, he would help me out of it. He would also withdraw needle.
Soo....here goes. Will determine the day and time. Oh yes, women--does the timing of menstrual cycle impact the tap? Will ask that today.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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TheCrimeOfLyme
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Di:
You asked if a tap can show meningitis. I don't know if anyone answered that, but YES it can.
THe other thing is , if you get a headache, has anyone told you about a blood patch?
There is absolutely no reason to suffer a spinal headache, at all. ( And they are BAD) I had one.
My sister, mother and my other sister all had LP done. every single one of them got a spinal headache. I got one with a spinal given to me for labor.
If you get the headache, they draw some blood out of your wrist and shoot it into your back ( blood patch) to close the opening.
Viola- the headache is GONE.
Don't worry about the headache part of it, but let them know at the slightest hint of a headache, you will be askign for a blood patch!
I was recently just to have a spinal tap done. However, I skipped it. The neuro was to draw four tubes I think, out of my spine, let me lay for 40 minutes,
send me to the hospital with my own spinal fluid to have blood drawn out of my arm, and then send me home.
There is absolutely, positively, no way that I would have NOT gotten a spinal headache getting up 40 minutes after a tap , and walking across the street to the lab to get my blood drawn!
So I skipped it. Plus, he was a neuro that knew SO MUCH about lymeS.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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ArtistDi
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Crime, yes, neuro told me about blood patch and it would stop headache. Also, told me it could detect menigitis. Will have cbc first, MRI (am due since had one two years ago) and llmd/neuro say another about due.
I am so tired of running around, but it is hard when llmd is out of state and I need to make arrangements at home.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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