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The Spinal Tap

I was still shaking from the spinal tap.

The medical term is “lumbar puncture.” Any combination of words that contains “spinal” and “puncture” was going to terrify me. It did.

From working in a law firm that handled personal injury cases, I had read all kinds of grisly stories about spinal taps. Horror stories. The first insertion of the needle wasn’t precise and they had to do it again. Terrible, agonizing pain. Days, weeks of headaches, nausea, blurred vision, speech impairment. All this was going through my mind as I lay on my side waiting for hell to open up.

It didn’t. The procedure went smoothly. The physician was practiced. It only took one try. It was over in about ten minutes.

My body was still shaking from the shock, the mental agony that I’d just put myself through. Body, mind — it’s all one and it was all a whirlwind of panic.

I was told to get dressed and wait while the results were assessed. My parents waited with me. Thank god for their immeasurable comfort and support in that moment.

I was more scared than I’d ever been in my life. It was like standing in front of a firing squad.

Then my doctor came back into the room. She explained that the results of the MRI and spinal tap led her to a diagnosis of MS.

It wasn’t the first time that I’d considered that I might be dealing with MS. From the first tingling feelings in my foot that spread upward to my hip, I started to think about what some of the lesser causes of the sensation might be and what some of the really nasty causes might be. What scared me most about MS was that it was DEGENERATIVE and it was UNCURABLE. A cut will heal. A broken leg can be set. But MS didn’t go away and it didn’t ever get any better. It only got worse.

The doctor’s words were still tumbling through my mind. I took a deep breath. It won’t kill me, it won’t kill me, it won’t kill me … I repeated the mantra. I’m not going to die from this. It isn’t a death sentence. It is treatable, if not curable.

I took another deep breath. I felt my throat closing up and knew that I was going to cry. Post-traumatic shock syndrome from just having a long needle inserted into my spinal column and being told that I have an incurable disease. My brain was trembling.

I asked, “So what do I have to do?”

We went over the options. At least there were options. The ABC drugs were standard and available: Avonex, Betaseron, and Copaxone. Two were given weekly. One was given daily. All were delivered with a needle. I’d have to learn how to give myself shots. Fun.

Okay. Diabetics do it every day. If they can, I can.

I struggled to take it all in but still cried. My parents held me. Then they drove me home.

That evening, I blew up. Fell apart. Exploded. Sobbed for hours. A friend came to sit with me during the detonation.

I think of the week following that day and use the term “basketcase.”

I had to set an appointment with a visiting nurse who would teach me how to give myself shots.

It’s been five years since the diagnosis. And contrary to all my worse nightmares about MS, I have been completely symptom free. I’m healthier than ever in my life. I’m exercising regularly, eating balanced meals, getting eight hours of sleep every night, and managing stress as best I can. I tried the Swank diet for a while and eventually decided to eat whatever I wanted in moderate portions. No alcohol, very little caffeine. I do enjoy good chocolate and am not about to give that up!

I may have had my spine punctured but my life is intact. I’m grateful for every day that I have on this planet and intend to live to be 100. Just watch and see.

ZenGrrrl ZenGrrrl 41-45, F 26 Responses Apr 3, 2006

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i have had ms for 25plus years and had no kind of medication untill recently now i am on gabapentin and tramadol and for the first time in many years i am relatively pain free

Your post was wonderful. Crazy what fear can do. I believe in the end that fear is the worst part of this disease. A lot of what ifs. I felt very similar about the spinal tap...not even sure how I got through. My mom and dad were in the waiting room too!

Oh my god. What a drama queen. I have MS and have been through it all as have most MS sufferers. I appreciate we all are different in our reactions but you need to get over yourself. Its really hard to read this melodramatic biopic when your in the mist of another relapse and struggling. You are not going to help yourself with these histrionics but I thank you for making me see the way not to tackle this condition.

Hi Zen, I also have MS and I am very glad that You feel great it's such a good feeling to know that people like Yourself feel great and are symptom free although I feel so drained in pain every day and lethargic and haven't any energy at all to be able to play with My 18 months or My 8 month old baby girls I just want to sit down and cry! I have recently as 3 weeks ago started a new called Avenex I just hope I feel even a little better if not for Me then for My kids. Thanks Natasha

I just had a spinal tap done this past Wed at the neurologists office by a wonderful lady that does them all the time. A little pain when she numbed my spine no more then when giving blood, a little pressure while doing tap, she and her assistant were great. They laughed and talked and were very helpful with info on what I should do. Drink plenty of caffeine, I had 2 sodas and a lrg tea afterwards and never got the headache. It wasnt as bad as I had heard from different websites.

Thank you for your post. I am 33 and have had symptoms of MS since I was 26. I am scheduled to have my MRI done this Saturday and I'm very scared. My whole life will change drastically if I have MS. I am an officer in the Army and have been physically active my whole life. Your post has given me hope that it won't be as bad as I keep thinking it will be.

How did it go? How are you doing?

Hello Iam going through alot My neuro is trying to find out if I have ms I already went through by blood test and it was normal, then went through baaer testing and everything was normal. He found 1 lesion in my brain and I just went through lumbar and that was the worst experience I ever went through it took 3 times 1st it was for novacain 2nd time hit my nerve and the 3rd time it was finally in. If two of my test came back normally do u think my lumbar testing would come back normal or maybe I should except the fact I have MS. thank you lovebutton.

Hello, I had a spinal tap on Wed 2012 and it took 3 trys and on the 2nd try he hit a nerve in my spine.

Sid anyone have to stop any meds such as pain,anxiety,depression prior to spinal tap?

You can request medications from your doctor. I have received 4 spinal taps and I have been either asleep (due to medications) or drugged up so bad I couldn't feel anything nor remember anything. There are medications via mouth an I.V and various types. Goodluck.

I had a spinal tap 1 month ago to see if I have MS. I have not gotten results yet. I have called numerous times to the doct. First let me explain I had a brain biopsy 1 month before that. It concluded no to cancer. Lesions probable ms. So the neorolgist is the one waithing for spinal result s before he treats me. <br />
<br />
All I am on right now is antidepresents. Whats yalls opinion?<br />
<br />
Thanks

I was diagnosed last year. Had a spinal tap then,which I had interpreted by my general practioner as negative, then the neuro wouldn't really say (just said "this is ms"), I am a nurse on a neuro floor, I see results all the time. Mine are so close to being normal I'm sure they are inconclusive. Neuro doc on my floor said he doesn't even do a spinal tap because results are so unreliable. Just food for thought.
how do u feel?

Oh my gosh! I feel your pain. I was twelve when I had one, and the man missed! I guess, he broke the bank that held the spinal fluid and I bed-ridden for a week because of the head aches and throwing up.

So glad I ran in to this as I go for a LP/spinal/whatever you want to call it on Monday. Having a work up for a 2nd opinion about having MS. I probably do have it. I'm ready to face that, but SO not looking forward to the spinal. Your writing here has really helped. I'd like to just be drugged up so I don't know what's going on. ;) Good to know it will be over before I know it and I will learn to live with MS. Thank you, thank you!

To anyone - I was dx a year ago with relapsing/remitting MS. Took a while to put together the whole<br />
picture, but between the MRI's, Lumbar Puncture and blood work it was + diagnosed. I started <br />
Avonex 1 x week IM injection. The side effects are many : severe headaches, all-over joint/muscle <br />
pain, decrease of WBC and abnormal liver function, increase of Lymphocytes.......aside from this <br />
probably the most troubling symptom involved the GI system, I have horrible gas, very foul, multiple <br />
bowel movements, bowel incontinence, just never feel "clean" . Significant depression also creeped in ---wow, I understand now what a "chemical" depression feels like --- I feel like a <br />
heavy fog is over me most days now. I am taking meds for that too as well as meds for the multiple <br />
anxiety/panic attacks is anyone else experiencing any of this ? I wonder if this is a common problem with all of the INTERFERON meds? thanks for any help here. KR

Please tell me that u have reported all this to ur doc and there is a different med for you?

I think thats the problem with the Internet. BEFORE google and WWW we just got on with our lives. We might get sick, have weird sensations, but we had no clue what was wrong with us. <br />
<br />
NOW we can put our symtpoms into Google and we get all kinds of things back which puts us into a panic and we imagine we have everry awful illness that god can throw at us.<br />
<br />
Its the same with the Lumbur Puncture or the Spinal Tap. Some terrible horror stories from people who have had a bad procedure. Mind you sometimes I wonder just how accurate they are and how many are exagerated, and how many actually genuine.<br />
<br />
When i was to have my Lumbur Puncture the thought of the procedure was more scary then the actual procedure. I refused to read about experiences. My doctor told me to make sure I was well hydrated before I went in, and also Coca Cola was good something to do with the caffeine.<br />
<br />
When i went in my legs were shaking and i felt sick.<br />
<br />
OMG what was I doing...I must be mad.<br />
<br />
BUT it was a walk in the park. I felt nothing just a small tugging that is it.<br />
<br />
I went home and just rested. No terrible headaches.....<br />
<br />
The test showed lots and lots of O Bands in my CSF which would normally have given me the diagnosis of MS, but the blood test that they take at the same time showed I had inflammation in my blood, so I was told this was negative for MS, but they gave me no clue as to why I had inflammation in my blood and O BANDS in my spinal fluid.<br />
<br />
Anyway Zen your post is truly inspiring and its good to see some positive stuff out there about MS not negative. <br />
<br />
There are no guarantees in this life for anything. We get born and we die, and the in between well we have to just live our lives the best we can, love our family and just hope each morning is another one we can enjoy being with each other.<br />
<br />
MS is actually considered RARE even now, much much rare then cancers and other horrible diseases.<br />
<br />
I think positive attitude is the best thing to have. It does have an effect on our wellbeing.<br />
<br />
I actually found the EMG for muscles worse then the lumbur puncture lol.......

I'm taking Rebif now, and my symptons have gotten worse, exspecially when i exercise. I know everyone is different. i just need to here about the medicine someone is taking that works for them and makes them have no symptoms. Somebody please help!

that is nice of you to share that thank you you just helpe dme out alittle bit by what you send gave me some courage thank you alot

LOL. Wow i did the same thing. As soon as the dr said i needed a lumbar puncture i went online and researched it and when i saw the length of the needles n read the side effects i almost died lol...I dreamt alot of crap that night. But it wasnt bad, numbing the area was a bit stingy for me cuz they injected the region but after than it was cool...<br />
<br />
Have had MS now for 2 yrs. havent been the sweetest of journeys but im taking it one day at a time

Hi, zengrrrl, my name is Zen, too. I was diagnosed in 2005 during a total crash of my system that at first looked like a major stroke. I remember the spinal tap well. My older bother had undergone one some years earlier and he promised me it was a breeze, easy peasy he said. During the ten minutes of hell that is a lumbar puncture, I swore I would kill him if I survived the procedure. Well I did survive and I didn't kill him. Actually, I'm grateful he didn't tell me the truth of it or I would never have consented. I'm very glad to know you've been symptom free. Not the case with me, but I truly hope your good luck and good health continue.<br />
<br />
Zen

All I can say right now is thank you for this story! I am so sorry that people really deal with this! I go for my spinal tap in the morning to confrim the MRI findings that I just had Friday! I am young and scared out of my mind! I have a beautiful 4 year old daughter to stay strong for and like you said this is not a death sentance!

I also have m.s. and i was afraid of the spinal tap.I kept tensing up.It did hurt and i hope i never have to get another on.I use Rebif injections 3 times a week.After a while you get use to shots,but it takes a while.I WOULD rather take the shots than suffer without them.

I am in the process of finding out whether or not I have MS. A dental assistant told me, while my mouth was being worked on, that in Canada they use bee stings. She said the venom of the bee acts as a detox to MS in our system. I vaguely remember seeing this on the Discovery Channel a long time ago. She also said that there are many new drugs to help and it is not a "death sentence" by no means. One learns to control it and take care of one's self. Thanks, Callalilly

My six year old cousin had to have lumbar puncture. They thought that she might have a brain aneurysm - fortunately it turned out to be some sort of eye infection. <br />
<br />
I could hear her screaming when they did it. It was awful. <br />
<br />
I'm glad you're dealing so well with the MS and I wish you the best of luck.

I had one of those. terrifying. The waiting was the worst part --to see whether or not I had viral or bacterial meningitis. my mom going hysterical- me afraid of dying of the bacterial kind- turns out it was viral and I was out of the hospital in a week. but it was a scary experience. I'm glad you're dealing with MS positively- that's rather inspiring.

I remember when I was almost 22, I had to have a spinal tap to determine if and what kind of spinal meningitis I had. I had also heard some horror stories about them and was very scared. Mine was smooth, good doctor and a great nurse! I remember it to this day though, not so much that it hurt, because it didn't, but how scared I was. I was in terrible pain, my head felt like it would explode at any given minute. <br />
And I am glad for you that your parents were there for you, mine were with me when I had to have a breast biopsy. I would have panicked if they wouldn't have been there. And it was good for them, they had been divorced for about 18 years then and get along very well, they had lunch together while I was in surgery.<br />
I have a few people in my life who have MS, so I see what they are going thru. One, like you is activly combating the disease by staying healthy and fit, one who smokes and drinks and eats stuff she knows she shouldn't.

Thanks for sharing your story; your courage and strength of character are inspiring. Sometimes the greatest adversities we face are within ourselves, and it sounds like you've gained a very genuine enlightenment from both your troubles and your good fortune.<br />
<br />
I hope your good fortune continues!<br />
<br />
BTW/FYI, the vast majority of lumbar punctures are like yours - problem free and undramatic. When there are problems, they usually occur when circumstances are difficult - people are acutely unwell or have abnormal bones of the spine or have a lot of fat in the way.<br />
<br />
Also, spinal tap is a poor term for it - your spine per se was not punctured, instead it was only the fibrous sheath that surrounds the actual spinal cord. Even then, puncture is not a good term, many needles actually spread the fibres and do not cause a hole in the conventional sense.

Hello. As a M.D. I can understand the fear and stress you felt on the day of your tap because I have a job where I see both every day.In reading your story I'm under the impression you're a very brave and determined individual and I admire you for that. Those are characteristics one rarely see's anymore. No, MS is not a death sentence as you grimly said. Unfortanetly though it does make for quite a change in ordinary way of things in the daily life;as you no doubt have found out by now.But know this,if you continue what you're doing my bet is you're going to have a good life.Good luck to you..Rocky.