Spinal Tap Advice

    • Anonymous
      May 30, 2006 at 2:33 am

      I was diagnosed in 2001 with CIDP – since then I have had the full range of treatments from IVIG, paresis, predinsone, and other drug therapies. I used to think I was suffering from a relapsing strain of CIDP – but over the last 2 years I think I am progessing. Treatments have stopped being effective and I have fewer good days.

      Over the years my nerve conduction tests have gotten worse. I had a spinal tap in 2001 which showed abnormalities in several categories.

      Back then I did not know what to ask or think of any of my test results. I did have an MRI that was clear and they ruled out MS at the time.

      My neurologist is now sending to the Mayo clinic in Rochester to be tested – since my treatments are not working.

      I am wondering if others have had spinal taps and what results and questions should I ask about while there?

    • Anonymous
      May 30, 2006 at 5:23 pm

      I’m not sure about the questions you should ask about the spinal tap…I have to think about that some more. But I do know about procedure. Make sure you stay on your back after the procedure for as long as you can. If you develop a headache, call your doctor immediately and ask for a blood patch. Good luck…Annie

    • Anonymous
      May 30, 2006 at 6:36 pm

      I really don’t know the questioins to ask either, but your story sounds so much like mine. Dx in 2005 went on plasmapheresis, slowed progression but did not reverse it. Then went on IVIG again it stopped progression but did not reverse it and I had to tke IVIG bi-weekly.

      started steroids by IV 6 weeks ago. feel great after but doesn’t seem to last till next treatment and wow do I go down fast. I am real interested to know how you make out at mayo. GOOD LUCK-GOOD HEALTH


    • May 31, 2006 at 12:30 am

      the jerk who did my spinal tap lied to me and said my insurance company would not approve a blood patch following the spinal tap. I kept insisting and instead was sent home with vicadin which made me throw up and then torodol which again did nothign for the pain.
      I ended up being rushed to the ER 3 days later with a headache and pain that landed me in the hospital for another 2 days. On the 2nd day, I was finally given the blood patch and the pain stopped almost immediately.

      ABout spinal taps…

      Good LUck and I hope it isn’t too painful. sounds like you have been through enough!!

    • Anonymous
      May 31, 2006 at 1:38 pm

      I have had four spinal taps. 2 went without any problems, and 2 gave me a headache for a few days. In my experience it all depends on who gives it and how knowledgable they are. Caffeine is given at mayo to help reduce the chances for headaches. The have you drink a caffienated drink just before they do it. Just try to relax as much as possible, it will be over pretty fast. It may not be a bad idea to get some painkillers before your trip to Mayo, in my opinion.

    • Anonymous
      June 1, 2006 at 12:26 am

      Starli, thanks for starting this thread.

      I have long been searching for an answer for my daughter’s situation concerning spinal taps. In October, she had to endure 4 spinal taps over a 6 week period. Each was extremely painful. I’m talking about screaming pain. She has been tramatized to the point that she told me after the last one that she would never have another – if it came down to that – just let her die. (She reminds me each time we have an appointment to see a new doctor) During the first two, I thought mabe she was so aprehensive that she was too tense, making it more difficult to obtain the fluid. (This is what the doctor told her during the procedure) The third one, she was given Adavan by iv. At the point when the doctor inserted the needle, she screamed and moaned – it was still painful for her, but thankfully she was druged up enough to not remember it. The final one, I stopped the procedure because no painkillers were given (doctor insisted a spinal doesn’t hurt), and he seemed to be having trouble – taking a looong time, ………and I couldn’t bear to listen to her crying.

      Sorry this is so long, but on this forum, most have relatively mild to no pain during the procedure, and headaches are the most common side effect. Now, Jennifer has backaches and migraines. What physiological condition could be causing her excruciating pain during the procedure? How can we deal with it in the future? We have finally found a neuro that has “heard” of cidp, and acknowledges that in some instances gbs reoccurs. We are scheduled for a re-evaluation in a month, as she insists on her own evaluation – not those performed by others. I’d like to have some options to minimize the ordeal. Any ideas floating around out there? I trust the advice and kindness from all of you here more than the professionals.

      Thank you all for being here!

      By the way, what is a blood patch? :confused:


    • Anonymous
      June 1, 2006 at 3:25 am

      Hi, Starli.

      As you’ve seen, some people have problems with spinal taps, but actually most don’t. I was told to lie flat for the first hour afterward and drink plenty of fluids–immediately after mine was done I was brought a cup of hot tea which I had to drink through a straw while lying down. (BTW, here in England a nice cuppa can solve all your problems! A nice Merlot helps as well.)

      At any rate, I don’t know of any questions to ask at the time of the tap. In CIDP they’re looking for a raised level of protein in the spinal fluid, and most hospitals I know of aren’t equipped to do that kind of pathology immediately. They’ll send the results to your doctor, and it’s your doctor who will be able to tell you the results and what they mean.

      Best wishes in the battle.


    • Anonymous
      June 1, 2006 at 8:47 pm

      I would hope that your experience could be as gentle and easy as mine was. Mine was done in the neuro’s office. I didn’t even have to take off my clothes.
      I sat at the end of the examining table and leaned on it. What I felt most was a dull, heavy pressure as the needle passed into the fluid. Afterwards I feared the awful headache that I had heard of, but I never had one. The MD had given me a script for pain killers, but I didn’t need to take them.

      I have found deep breathing to be very helpful before and during such procedures. It also helped me with a bone marrow biopsy.


    • Anonymous
      June 1, 2006 at 11:55 pm

      I have only had one tap and my neuro did the tap at the hospital, outpatient. He gave me versed, not sure of the spelling.

      I remember sitting on the bed talking with a friend, then I heard my docs voice, and remember talking, but not what about. Next I remember is being back in my room telling the nurses I would climb over the rails to get off the transporting bed..lol..

      I too, was told to drink caffeine and immediately was given 2 cups there and layed flat for 2 hours and went home. I drank more coffee throughout the day from my bed, in a thermos so I would not have to get up. I stayed in bed until the next morning. (A friend made the coffee and brought me dinner, that is the only time I sat up, just long enough to eat, several hours after.

      I had no problems, nor pain that I can remember.

      Can’t think of any questions I would ask. I think most of mine I asked before we scheduled it. I can’t remember them now.


    • Anonymous
      June 2, 2006 at 11:04 am

      I mention the painkillers not only for the spinal tap. When you get to Mayo you will be seated in a large waiting room and assigned a number. When your number is called you see your assigned neuro. He has a standard list of tests to run, and some of them are painful, others painless and easy. They likely will give you a shot in the stomach to numb you then do a mini liposuction deal where they insert a bigger needle to remove some fat to test for another disease amyloid something something. One of the painful ones I remember. I walked from the 5th street best western to the hospital every day for four days, in the middle of January. That in itself was painful. It is like assembly line medicine with all the sticking and poking. The final result was the nerve biopsy to prove beyond a doubt they told me. The surgeon after doing this told them to give me tylenol……I told him hell no you just cut a nerve and made a six inch incision in my leg. The attending neuro had to give me a script. I do not mean to scare you off, just telling you what I went through. There are some great restaurants there and my time not spent at the hospital I enjoyed greatly. Rochester is a beautiful little town with very nice people there. Feel free to email me if you have any questions.

    • Anonymous
      June 2, 2006 at 10:41 pm

      I’ve always had to lay flat after my spinal taps– for the first one, about eleven years ago, it was 48 hours. Now it’s down to 24 hours, because they’ve gotten much more accurate– the neurologists no longer do the spinal taps here, instead it’s the [I]radiologists![/I] That was a quite a hurdle to accept the first time I had it the “new” way, but what they explained to me it makes sense– at the hospital where I get mine, the radiologists *watch* the needle going in and where it is relative to your spine on a machine that’s like real-time x-ray moving picture– I watched it on the monitor myself, and they really [U]can[/U] see exactly where the needle is.

      They said since they started doing the procedure this way there is even less of a chance of the dreaded spinal headache.

      NOTHING scares me, and I’m so terrified of getting a spinal headache that I follow all the recommendations to a T– I get someone to drive me home (and I lie as flat as possible in the car) then other than getting up (ever so gingerly!) to pee, I’m flat on my back for the prescribed time. I also drink lots of water.

      [SIZE=”4″]Good luck to you! [/SIZE] When I have it done they find protein, and once or twice they tried to find Lyme (but didn’t.)

    • Anonymous
      June 4, 2006 at 1:13 am

      In 2000, my neuro did it in his office. I took off my shirt and put on a gown, he gave me a numbing shot, he took the necessary fluid. I laid flat for an hour. I did OK until a trip to the bathroom the next morning. I was a bit constipated(not related) and grunted. I felt a little “pop” in my back. I had severe headaches for three days. Then I was fine. It was over a weekend, and by the time I could have gotten back, I was better.

      It isn’t a bad procedure, my Doc was good. Other than the headache, I had no problems. I hope you do fine.

      Dick S

    • June 6, 2006 at 8:27 am

      Sometimes while doing a spinal tap, the cerebrospinal fluid may begin to leak out. You will know this by the headaches that don’t seem to want to go away. A BLOOD PATCH is where they take the patient’s blood and inject it into the area where the leak is happening. This ‘seals’ the leak.

      Here’s a handy website that offers some information and advice for a spinal tap…

    • Anonymous
      June 9, 2006 at 2:29 pm

      I have had 9 spinal taps by 3 neuros,3 of which were floroscaps while being x-rayed at dartmouth hichcock in lebanon n.h. and they could not get any spinal fluid. Rooostah