Discussion in 'Fibromyalgia Main Forum' started by lynncats, May 31, 2009.
spinal tap anyone?? If so, how long did the "after" headache last?
or at least called my neuro to let him know, but, my 'after' headache, despite laying flat, consuming caffeine, taking OTC meds for the headache, drinking plenty of water, etc. lasted a total of FIVE & A HALF HELLISH DAYS.
The tap itself was fine, none of that bothered me a bit- it stings for about 10 seconds, like nobody's business, from the *numbing* medicine... after that- piece of cake. I also had 8 tubes of blood taken (plus the 3 vials of spinal fluid, lol)..
But MANNNNNN OH MAN my headache was TERRIBLE.
Now, my aunt had had a tap about 6 mos before me, and she told me I should've gone to the ER for a blood patch.... she had to have one. I'm still not certain I needed one, but, a large consensus amongst my fellow MS'ers, seems to be that I probably did.. but, as you can see, I'm still here,
mine was in 03.
Five days!!!!!!!! Let me tell you, this is the WORST thing since chiledbirth, I mean the headache part. I agree with you, the procedure wasn't tooooo bad, but I have scolisos, so they said they is why it hurt me so much.
Aint', - what does a neuro actually do for this CRAP!! They told me to follow up with one. But my god, NOW, I have another Doctor???? Thank you so much for replying!! Have a goodnight!!
"Aint', - what does a neuro actually do for this CRAP!! They told me to follow up with one. But my god, NOW, I have another Doctor????"
Ok, if a neuro did not DO your spinal tap- I shudder to wonder WHO DID?? A neurologist (and, preferably one I've known a while, BEFOREHAND, lol) is the only person I would ever trust with a spinal tap. So many things can go wrong,
My neuro, while, he can be 'funny' now & then, is awesome, for the most part, and I wouldn't trade him for the world.... I've been seeing him for over 7 yrs now, and absolutely DREAD the day he retires, which is a very real, and very possible thing, within the next few years or so..
I like him for so many reasons, intelligence, bedside manner (boy is he a BEAR, when in a *bad* mood, but, I've only seen it maybe 3 times, in 7+ yrs, thank god..), I appreciate SO much, that he treats ME as an intelligent human being, (as a human being at all! is far more than I can say for MANY of the millions of specialists I've had to see over the last nearly 9 yrs now)..
I respect him, because, when my mother directly asked him 5-6 yrs ago "If she went on one of the MS drugs,.... would she get better" he flat out gave his own, honest, personal opinion... "No.... in fact, with her conditions especially, she could get worse on the shots- side effects include fever, flu-like symptoms, injection site rashes/irritation, " and, also, he'd said "there's not any *real* proof, that those drugs work- or if it's just a person's 'natural disease course" "I mean, we're talking about a disease (MS) that *naturally* "waxes & wanes"..... Good point doc.
I was glad he didn't just jump right on that pharmaceutical/doctor bandwagon, & throw me on some $800-$1,400+ a MONTH injectable drug, simply because I fit the 'typical' picture of MS... (brain lesions, one, particularly seen in an area of the brain that "is usually MS"), especially in my early 20's, with a history of symptoms going back into my early teens, Abnormal physical (clinical) exams (reflexes, lack of, hyperreflexia, abnormal gait/balance, etc)... and several other things...
As to the question of "what does a neuro actually do for this CRAP!! I'm not sure, are they just having you follow up with a neurologist for the results of the spinal tap... did they find anything IN the spinal tap results, are they sending you to one for fibro, or headaches, or??
My neuro personally, believes very much in fibro, but, does not address it at all, ever. He did tell my mother though, again- when she asked... that, "No." he did not* believe that they would EVER find a cure for fibro- he did not elaborate really, as to why, he just said no. My mom disagreed with him (we HAVE to believe!) and just chalked his answer up to possibly having a relative with severe fibro, or him just having had a bad day... or understanding the severe LACK of understanding amongst a lot of the medical community... who knows..
So, I don't know, I know some people on this board DO see a neuro..... *seemingly* for fibro- I don't know what a neuro could/would do for it... other than run a LOT of tests, to help find answers to the cause(s) of some symptoms... and or rule out several other things... I think lots of fibromites see neuros also for *migraine* help, and sleep disorders too...
Best of luck, I'd be glad to help you with anything I can..
Hang in there... I know for at least the first 2, if not 3 days after my spinal tap, I could NOT sit/stand up, for more than 15-20 minutes, before my head would explode. Then right back to laying down again... 5.5 days, it finally went away..
I have to have a spinal tap soon...my MRI on my back showed no bulging discs so my neuro is wanting to do a tap to check me for MS because my back hurts soooo bad. It takes my breath sometimes and makes my legs hurt much worse. I have FM so i'm not sure i want to go with the spinal tap.
Any thoughts...anybody that has FM and had the tap done...is it worth it...isn't there another way to check for MS or back problems. I have heard horror stories about the after headache and i'm so sick of feeling pain...i dont want any more brought on me.
How is your headache today? Is it starting to go away at all?
gentle hugs, Susan
From your post:
" I have to have a spinal tap soon...my MRI on my back showed no bulging discs so my neuro is wanting to do a tap to check me for MS because my back hurts soooo bad. It takes my breath sometimes and makes my legs hurt much worse. I have FM so i'm not sure i want to go with the spinal tap.
Any thoughts...anybody that has FM and had the tap done...is it worth it...isn't there another way to check for MS or back problems. I have heard horror stories about the after headache and i'm so sick of feeling pain...i dont want any more brought on me. "
A spinal tap is usually in the latter, if not one of the last tests, done by a neuro, to check for MS- to put it in the exact words of *my* neuro- " a spinal tap is very helpful in the diagnosis of MS, but, it does not *exclude* a diagnosis," He meant, (and he's told ME, that it is MOST helpful, really, if a person is within 12 weeks of an MS exacerbation, or so.(like a fibro flare- but MS).
So, in my case, with having BRAIN MRI'S (have you had one or more BRAIN MRI's done?? or just the spine one?) In my case, having lesions in a certain area of my brain, being 22/23 yrs old when they were first found, a diagnosis that goes hand in hand with MS usually in my age & gender at that time, and several other abnormal tests.. my 'normal' spinal tap... did not 'free me' of "MS" in fact, I've been diagnosed by several different doctors, in several areas, WITH MS, since that tap... due to other things.
Has the doctor that is wanting to do this spinal tap on you done OTHER tests at ALL? Back pain- is NOT a reason for checking spinal fluid for MS- I've NEVER heard of that- just doing a tap, specifically looking for MS, because of extreme back pain-...
So, have you had any types of NERVE CONDUCTION tests done? (SSER- Somatosensory Evoked Response) test, EMG (muscles testing), Brain MRI, and where in your spine, was your MRI, was it your ENTIRE spine- to the tailbone, or one area, (cervical, thoracic, lumbar....??)
I would NOT have a spinal tap, if you've not seen a neuro, and, if allllll other, far less invasive tests had been run- especially when the main symptom is something as vague as extreme back pain- so many things can cause that (and the legs... nerve impingement does sound possible, but, I wonder if your doctor is doing enough to check for that)..
I'd definitely have a brain MRI, if you haven't already first... along with nerve conduction tests, EEG, etc... before a spinal tap... and make sure you have 100% confidence & trust in who you allow to do your tap, should you go that route... I'd let my neuro do a spinal tap on me any day. I don't feel that way about a single other doctor I see... most of them I wouldn't trust to cut an ingrown toenail out (my primary literally has screwed the same toe up TWICE now, she left at the end of 08' - now i still got 2 screwed up toes- one of them twice screwed up!)
Anyways, hope that helps,
Lynn, hope that headache is GONE by now... hugs to all.
Ourlife- Are you having a spinal tap or a mylogram? They are very similar as the needle goes into the same area but with a mylogram they inject dye into your spinal column instead of taking a sample of your spinal fluid. After injecting the dye they tilt the table so that the dye moves from the base of your spine to the top of your neck. Then they take a special type of X-ray to look for any compression of the cord, pinched nerves or disk problems. I had this test when I was having severe pain in my hips, back and neck. Turned out I had a severe spinal cord compression in my neck. I was told not to fall before surgery because there was a good chance I would end up a paraplegic. If your having severe problems with your back then this might be the test they plan on running. If you do have it be prepared. When they tilted the table to run the dye up to my neck I thought my head was going to explode! I'm not trying to scare you but the tech told me "you might get a small headache but nothing really bad". I don't think he realized that with FM I would feel it so much worse than others.
Lynn-I hope your headache is gone! Those spinal fluid headaches are the worst!
The headache is still with me, although not as bad (said I was one of a few that the headache last longer than other people). I actually just got out of the hospital, had to go back to the ER on Tuesday and they admitted me. Final result was tension headache. Gotta a lot of stress going on do to my son and dil, and her family, I've posted about this before. I will NEVER in my life have a spinal tap done again. Hope everyone is doing good. Gotta go take my meds and lay down for awhile. Take care!
I wouldnt ever have another one done. I had one done in 1997 and had a headache afterwards (it took them 3 goes to get a needle in). I was then told that the headache was psychological and i was making it up. I spent most the time between 1997 and 2005 laying flat on my back in a dark room with a splitting headache and still i was making it up.
In 2005 they decided to do another LP and again in really really hurt, they tried very hard but couldnt record an opening pressure as it was too low. They eventually drew some spinal fluid and sent me home, the headaches were ever worse. I got home and was so sick i ended up in A&E less than 2 hours later. They kept me in for a few days and sent me home, i was re admitted less than an hour later.
Back and forward again the eventually after a month concluded i had low pressure in my spine due to a leak (they never admitted caused by the original LP). They performed a blood patch and within a few minutes of having it done i sat up in bed and the headaches of the last 8 years had all gone, it was amazing.
The only issue was i completely lost feel / use of my legs which wasnt that good as i am not a paraplygic.
What they dont tell you about bloodpatches is there is a risk that when you put blood into the spinal column ( it clots and blocks holes that are leaking) your body reacts to it as there isnt supposed to be blood in there and your body fights it and causes a lot of damage.
I wouldnt have an LP done if i had know then facts before i had it done. Every so often now my spine leaks for no good reason and i have to have IV caffine to sort it out.
There is no good reason for having an LP done. Before the days of MRI scans it was a diagnosis tool for things like MS etc but with MRI scans they can see any legions etc and MRI scans carry little risk.
I have to agree with you, and others, that I will never have anotherLP done unless I am knocked out and it's a life threating problem.
Back in 84, I had one done, and it took them, 5 trys to even get me numbed enough for the Tap.
Then it was still a big problem gettina a draw, thank goodness my hubby was with me, to hold on to my hands.
I was in bed flat on my back for over 3 weeks, my hubby had to dump a bedpan for me, because if I did get up, I would get a headache like no other, right away.
and my spine would hurt, and it felt like something wasn't right, not sure how to explain it.
Anyway, the Neuro, who did the test, said that I had to much protien in my spinal fluid, and also there was blood, more, that what was to be expected for doing the test.
He thought that I had a small bleed in my brain, and that it was brought on by my drinking, that's another story,
I quit drinking, tho, and don't really miss it.
I have had 2 before that one, and they were hard to do also, but never like that Last one.
I also had a Mylogram, in 92. when my C7 had to be operated on.
I have since found out, that the Oil that they use, can stay in your spine, there is a condition, caused by that procuduer.
They also have to Hold you head during the test, so you don't move it, as it could parlaze you. Again I had the most horrific headache, that night and ended up in the ER.
THat is the last time, they will ever stick needles in my back.
I usually don't talk about it to much, as I don't want to scare others off, if they really need one.
But there are so many New test's these days, that thoes 2 test's should be a last resort.
I also believe that is when the FMS started, I had weird symptoms after that, that I know now, are caused by the FMS, and CMPD.
I think people with our DD's have a harder time with these types of test's.
I also had problems with Dental work and them getting me numbed up enough to work on me.
If they were to pull any teeth, then I had to be put out,
I have none left, so that is No longer a problem, )
Hope you all are having as good a day as possible, and may the Sun shine on you, it's hiding from us here, in "Sunny? Ca"
Had trouble trying to post this to my above post, hope this will be helpful to those who want to know more about this condition.
Causes of Arachnoiditis
There are 3 main causes of arachnoiditis:
Arachnoiditis has long been recognized as a rare complication of spinal surgery (particularly after multiple or complex surgeries) or trauma to the spine. Other similar causes include multiple lumbar punctures (especially if there is a "bloody tap" with bleeding into the spinal fluid), advanced spinal stenosis, or chronic degenerative disc disease.
In recent years, myelograms have come under scrutiny as being a possible cause of this condition. A myelogram is a diagnostic test in which a radiographic contrast media (dye) is injected into the area surrounding the spinal cord and nerves. This dye is then visible on x-rays, CT, or MRI scans and used by physicians to diagnose spinal conditions. There is now a concern that exposure (especially repeated exposure) to some of the dyes used in myelograms may cause arachnoiditis. Similarly, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis, especially if the medication accidentally enters the cerebral spinal fluid.
Arachnoiditis can also be caused by certain infections that affect the spine such as viral and fungal meningitis or tuberculosis.
There is no cure for arachnoiditis. Treatment options are geared toward pain relief and are similar to treatments for other chronic pain conditions. Some examples include the following:
Pain medications such as NSAIDs, corticosteroids (orally or injected), anti-spasm drugs, anti-convulsants (to help with the burning pain), and in some cases, narcotic pain relievers. Some of these medications may be administered through an intrathecal pump which, when implanted under the skin, can administer medication directly to the spinal cord.
Physical therapy such as hydrotherapy, massage, and hot/cold therapy.
Transcutaneous Electrical Nerve Stimulation (TENS) is a treatment in which a painless electrical current is sent to specific nerves through electrode patches that are placed on the skin. The mild electrical current generates heat that serves to relieve stiffness, improve mobility, and relieve pain.
Spinal cord stimulator is a device that transmits an electrical signal to the spinal cord for pain relief.
Surgery is not recommended for arachnoiditis because it only causes more scar tissue to develop and exposes the already irritated spinal cord to more trauma.
Living with Arachnoiditis
Unfortunately, this condition can cause serious disability. It is never easy to live with chronic pain. Not only does it adversely affect your body, it can also cause mental stress as well. Sufferers of arachnoiditis are encouraged to join support groups or find other therapeutic outlets for stress. Treatment methods should be focused on pain relief and maintaining quality of life. More research is needed about this and other chronic pain conditions so that someday a cure may be found.
Last Updated: 02/11/2009
[This Message was Edited on 06/07/2009]
Separate names with a comma.