So NOT happy!
 

I went to Johns Hopkins to get a repeat LP done (last one done in 2003) and it was absolutely the worst experience I have ever had getting one. The doc had me sit up and curl over, which was different, but ok. He spent an inordinately long time drawing on my back marking bony structures. Then he decided to numb me a bit.

Aaah.... we're ready to do the procedure. Stick. HOLY COW!!! That friggin hurt. Then he doesn't get it. So he sticks me again. OMG!! OUCH OUCH OUCH!!!!

I'm now tenser than a coiled up spring. He goes in a third time. WTFriggin heck?????!!!!!! I'm going to emasculate him with my bare hands. If he digs any more, the table's going to have marks in the railing from my hands.

I make him stop for a moment, sit up and stretch my back just so I can relax a bit. He decides to give me a bit more local. Before he goes in again, he says, "Gee, if this doesn't work, we're going to go in by fluroscopy." Um.. ya think?? Better because otherwise you're going to be a eunuch.

His excuse? I have a lot of scar tissue back there. Ok, I've had two LPs in the past--one in 1984 and one in 2003. I had an epidural in 1982. A lot of scar tissue? Where is this guy from?

He got in the fourth time, but I have never been so sore in my life. I spent from Thursday when I got the LP until Sunday in pain and had to take Epsom salt baths to help relieve the muscle tightness and pain.

I'm really thinking that I'm never going to have another one again. That was the worst time I've ever had.

Now I have to sit back for the results. The neuro at Hopkins wasn't happy with the one that I had in 2003 because it didn't list the # of O bands. He questioned the procedure. I'm questioning the one I had at Hopkins, but we'll see what the results show.

Neuro said that he's not convinced that even if it shows O bands that he's going to be swayed that I have MS rather than having had TM. Ok, I'll live with that. But he didn't change my dx from MS to TM officially, so I'm going to still say I have MS until something changes officially.

So sorry that was so bad.
I can top that one tho :(
I did NOT get a numbing shot at all and was stuck 6 TIMES and he keep hitting a nerve that runs down the back of my left leg. :(

Oh dear Gazelle. What a terrible ordeal to have to go through.

I've never had one myself, but as an RN I certainly assisted with plenty over the years. I got to know which doctor's knew what they were doing, and which ones didn't...usually by the distress they put their patients through, as well as the excuses they made for their own failings.

I can't change what happened, but I do send you hugs, and hope you feel better soon. :hug:

Maybe it was the same guy? :winky: Or maybe they're related.

That really sucks. I'm surprised that you kept letting them go in. Yikes!

I picked my docs carefully before I went to Hopkins based on what I knew from working with them in a hospital enviroment. That usually worked--the only one I had problems with was my initial neuro. I liked him, but he couldn't keep his mind made up about anything.

You have to be kidding me, right?? :Noooo:

That is absolutely babarbaric! As an RN for 40 years, and assisting with LPs since my student days, I never once saw one done without Local. Hugs for you as well Julie. :hug:

No Fluroscopy?????
 

I am only one person... but I've had this done once and have had numerous epidural pain shots. They were ALL done under x-ray. I didn't know they did it without x-ray?! I feel sorry for you. How do they know where they are going?:eek:

:sorry:


OMG!! That is awful.

Just convinced me to never do that procedure again. My neuro suggested repeating some past tests if my MRI changes sometime to see if there were early false negatives. We will just be scratching ye olde LP off that list! I had enough fun under fluro getting nerve zapped (felt like electicity separated me right down the butt crack):eek: and then got the dreaded headache, too.



:holysheep: Glad I wasn't drinking anything when I read this line. :p

I don't know. Truly. I'm not sure how hard it is to stick a needle into someone's spinal column and then miss--3 times. But then again, I used to do blood gases on people and sometimes I could feel the arterial pulse just fine and when I'd put the needle in, BAM! Nothing. No blood. Guess it happens.

It would kind of been cool to see it done under fluroscopy as I've never seen it done that way.

Wow, your procedure doesn't sound like it was much fun either. I started getting a headache when I was sitting up and then had to drive over an hour back home afterward. My head felt all funny, but I kept hydrating and went flat on my back for the rest of the day and night. Luckily, I didn't get a headache. I heard they're miserable.

Holy cow! Geez, Antelope, sorry to hear about that and I'd be pretty not happy myself.:holysheep:

:holysheep::sorry:

That sounds awful! I hope you at least get the answers you need after that experience!:hug:

Jeez! I wonder if we had the same neuro!

My one and only LP was an absolute disaster. It took the guy 5 tries, I was begging for the fluoroscopy, I had to sit on the table and lean forward, turned into a drawing board beforehand, etc! I could feel him digging around for the cord. It truly felt like someone had their fingers on my spinal cord and was tugging on it!

He finally got in and said" it's running very slow and I yelled "DO NOT TAKE IT OUT!!!!"

I very calmly asked if there was anything I could do to help speed it up and he nervously said " you could laugh"...and I lost it laughing. He was as nervous as I was! Spinal fluid shot all over the place and we got the sample, but I will NEVER have another one.

Sorry to hear yours was so bad! I certainly hope he got what he needed and that you never have to go through that again!

ahhh, Gazelle... sounds like you had a crony of the idjit that did my daughter's spinal tap.

she had hurt her lower back on school playground equipment at age 12.

later, at age 16, she was running a VERY high fever, and was having trouble moving her neck.

I take her to the ER, and they decide to test for Meningitis (a few cases locally at that time)

the doc has her lie on her side, knees to chest, and does the puncture.

he misses.

he does it again.

I'm holding her hand, and she's being very brave, but tears are leaking.

he misses again.

she's clutching my hand and moaning softly now.

he does it AGAIN, and AGAIN, and AGAIN!

I start to object, as I remember reading somewhere that if a nurse can't draw BLOOD in X number of tries (somebody remind me how many?) then they HAVE to get someone ELSE to do the draw!

they ask me to LEAVE the ER stall, and draw the CURTAINS tight.

I'm standing in the hall, and I'M crying by then!

the idjit doc manages to miss FIVE more times, before I RIP the curtains apart, GRAB my daughter, and start stuffing her into her coat, groggy and feverish though she is, poor beautiful girl!

I'm so angry by now I can barely BREATHE.

on my way out, I mention getting an attorney to sue for MALPRACTICE !!

"I'll take her to another hospital, thankyouverymuch... now GTF outta my WAY!"

his excuse was that she had scar tissue from her old school injury, and he just couldn't get the needle in.

fine, but isn't there some OTHER way to test? something NON-invasive?

and what ABOUT that rule that they have to get someone ELSE?

and what about parental consent?

I had RETRACTED my consent when I saw how much HARM they were doing to my child... I TOLD him to stop, and he DIDN'T.

*dead silence*

:( :mad: :(

All I can say is OMG!!! I am so sorry for all of you. I've had two lp's and had none of these problems. I was laying on my side for both of them and had fluoroscopy for the latest one. The only trouble I had was lower back pain for a few days afterward. One stick both times. I guess I was very lucky!

:eek: :thud::eek: :thud::eek: :thud: Enough said.

Sorry (((((((Gazelle))))))))

Oh my gosh, Gazelle! That's just awful. So sorry you had to go through all that pain and agony. Hope you feel better soon and can get some clear cut results. take care and rest.

http://dl10.glitter-graphics.net/pub...k8juucrh10.gif

Mine was done without flouroscopy too. My neuro did it himself in an extended outpatient room at the hospital. I had to about beg to get the LP, so I didn't beg for the flouro. I got lucky and mine was a breeze.

He told me since my lumbar was in good shape and I'm thin, he really didn't need it. He could see my vertibra and knew where to go. If I had to do it again, I'd want flouro though. But I don't see me doing another anytime soon.

Gazelle - I'm with you... scar tissue? From a couple epis and an lp? I think that guy needs a tatoo of Ryan Secrest on his testes... a worse fate than castration.

Somebody might *have* a castrated guy.

:p

:hug:

Hope you feel better soon. And I say 2 O's and that seals it. I'll dx you myself, dagnabbit.

I would like to ask a question here. Why so many repeated LPs and MRIs? Unless you are undx, there is little reason to go through the pain and discomfort of additional LPs or MRIs for that matter.

If you are DX and there are no other unforseen problems, then what does the Doc tell you when he/she wants to do another invasive procedure? Just for kicks? Curiosity?

Just wondering.:confused:

:hug: Sorry you had such a rough time with your LP.

Even under Fluroscopy, it was the worst test out of them all. He kept telling me to relax. I told him that I hate needles and the idea of sticking one in my back scared the you know what out of me.

I'm also interested in the answer of Sally's question since I swore I would never go through that again.

My gosh! What an ordeal! :eek:

I was dx with my MRI alone - guess it had enough lesions to compensate for not having an LP.

I had made up my mind beforehand, though, that I was NOT going to have an LP regardless. My cousin had one years ago - probably more than 20 years ago - and something went wrong but she has had problems because of it since. I need to find out exactly what happened but I can remember my Mom talking about it.

Luckily I didn't need one but I've already told my Neuro that I don't want one regardless of the situation.

I'm so glad that they forced you to take it there where the "experts" are vice at home. That totally sucks. Good news is that it's over. Please tell me that they took blood at the same time???

Hope you're staying flat and guzzling mountain dew! Take good care of you.

River, I'm SO glad you can't hear me right now because I'm laughing just thinking about the fluid squirting all over, although it sounds like it was just as yucky a procedure as mine. Ain't all of us who've had this much fun in a S P E C I A L club? ;) Hmm... I think we should invite those docs to a special club function.

Cayo, GULP! :eek: I do NOT blame you one bit for grabbing your baby and leaving. That's horrible. :mad: I'm sure your daughter remembers that and not fondly. Ugh.... I don't like medical professionals who can't seem to admit that they're out of their league and having trouble with a certain patient. It happens. Been there, done that--and been woman enough to admit it for the patient's sake. Luckily for us, the good medical professionals far outweigh the bad ones with this issue.

Brain, I like your thinking. You're just as evil as I am!

Sally and Fin (and Greta), the reason why he wants to repeat tests is because he says that some of the ones I had in 2003 are "suspect." For example, the LP I had in June 2003 showed a lab report of "suggests presence of oligoclonal banding." My neuro at the time chose to relate to me that I had an elevated IgG index (0.72, RBC ), glucose 57, protein 36) and oligoclonal banding. My blood serum at the time was clean. A normal LP result would indicate the number of bands and mine didn't. Consequently, he doesn't believe the results and thinks that the test may have been done improperly. So we repeat the LP and the blood serum (yes, Greta, they took blood at the same time--I would have been on the phone to the neuro who saw me there if they hadn't done it because then it wouldn't have been a valid test.)

Well, I had abnormal SSEPs too with my left side more abnormal than my right side in my lower extremities. He's not making me repeat them, thank goodness because I had increased symptoms for two days after that test, but his clinical notes say that my July 2003 SSEPs showed "prolonged waveforms from bilateral legs (though perhaps with some technical difficulties)." He didn't discount the results, but the "technical difficulties" in itself is damning enough when you take his suspicion of my other tests to indicate that he may not believe them.

He also wants me to have repeat neuropsych testing done because any change in cognitive function will be more apparent over time. I agree with that. So I am to go back to the same neuropsych that I saw in 2003 and have the whole bloomin' battery of tests (oh what fun :rolleyes:) run again. Um... ok, but I hate to say it that I'll probably remember a whole bunch of things from the first time as that happens when I've read things or done test questions--I tend to remember the answers to things or the test questions if I see them again. Guess I have a bit of a photographic memory in me, but I can't recall squat otherwise. Ask me what I had for lunch yesterday and I probably can't recall. But written stuff...I've always had a pretty good recall that I've read something somewhere and recognize it again. It's why I can't really read books over again more than 10 years or so apart.

I'm also to go back for repeat VEPs, which doesn't bother me. Hey, I can stare at a checkerboard pattern again without any problems. My first test was normal, but I guess he wants to see if there was any optic nerve involvement since 2003. To my knowledge, I've never had ON. I have had bouts of nystagmus, which has made viewing computer screens loads of fun at times, but when I had eye pain once and took myself off for visual field testing, there was no indication that my optic nerve was having problems and my tests were normal. Not one neuro has commented about my optic nerve looking funny on visual examination.

Bottom line is that the neuro at Hopkins isn't convinced that I have MS. He thinks that I may have had TM in 2003 rather than it being MS. Part of the reason for that is that my brain MRI doesn't really show (??) lesions and it should have by now if I have MS.

Interestingly enough, he said that although my prior MRIs of my brain were normal, my latest one in December 2007 (w/ & w/o contrast) was "essentially normal. This is a better quality study than the other ones [he] was able to review, particularly with good saggital imaging to evaluate the corpus callosum, and there may be a T2 bright lesion in the anterior corpus callosum and a T2 dark lesion in the posterior corpus callosum, but these are very subtle, may be artifactual, and there are no other lesions, such as Dawson's fingers or subcortical lesions." The radiologist read the MRI as normal. I find it interesting that he sees what might be two lesions, one bright and one dark, but thinks that both could be artifact. Then again, I read too much into things sometimes with these reports. (I once asked my old neuro in jest when my brain MRI report said "no significant abnormalities" if that meant that I had insignificant abnormalities and what exactly WERE insignificant abnormalities? :D ) Oh, and I know that not everyone with MS has Dawson's fingers and subcortical lesions, so that really isn't a measurement of whether or not those two things he thinks might be there are lesions or not and don't define the MS vs. TM problem.

Ok, so I ain't got a holey brain. I can live with that. But if those are actually there, and my old neuro saw lesions in 2005 (with what this neuro would consider poorer quality imaging) and dx'd me definitively, then what's going on? Docs can disagree on whether or not lesions are lesions and can read MRI results differently, so who do you believe? I'm thinking I should go with the guy from Hopkins, but my old neuro's at the Cleveland Clinic. Hmmm..... :Scratch-Head: Um... 6 to 1, half-dozen to the other comes to mind on this one.

And therein lies the rub--MS or TM?

So he says that even if my LP comes back with banding and nothing in the serum and even if my VEPs show optic nerve involvement that it might not change his opinion that it is TM instead of MS. Makes me feel like I'm nuts for going for repeat testing. After all, if it's not going to make him change his mind or lean to the MS side of things, what's the point?

Also, my neuropsych testing in 2003 indicated that some of the cognitive problems that I was having were "probably" related to depression rather than a neurological problem. The neuropsych agreed that I was depressed at the time and said I should be and wouldn't have been normal if I wasn't. After all, I had the testing in August 2003 or September 2003. I'd been getting sicker and sicker since February and no one was doing anything to help me with symptoms--so I had pain, fatigue, paresthesia, tremor, etc. A very good friend of mine (age 36) had non-Hodgkins lymphoma and I was at the hospital with him and his wife and his 4 kids when his brain started herniating and we had to take him off life support--I talked his wife into doing that and stayed for over 10 hours while he died. Plus, I had hit and killed a dog (and I'm a huge animal lover). People were starting to take decisions away from me (by making decisions about what I could and couldn't do physically) without consulting me first to find out what I thought I could do. So hey, I don't see a problem with why I was depressed! It was friggin' situational!!! And the neuropsych admitted that to me. But he didn't put that in his report. Lovely.....

So now I have to go to a shrink (a psychiatrist) too to rule out depressive aspects of fatigue. Did that today. He said that based on my description of the fatigue it sounds like what I have isn't related to depression, that it's neurological. But I'm going to go back and talk to him some more and explore that a bit just to make sure of that. Can't do that all in one session--it's too much.

And the neuro from Hopkins told me that there is a statistically higher incidence of depression and anxiety in patients with TM than in the general population. It also is the same for those with MS. They think that these diseases operate on the neurotransmitters in the brain, which would explain a higher incidence. Geez, I know I can't handle stress the way I used to before I came down with this lovely illness. I used to be a stress junkie and it gets to me so early now and increases all my symptoms. Whee!

So there's the short answer to your very good question. :) Aren't you really, really glad you asked? :wink:

Hi Sally! I had 2 lp's for totally different reasons. One was for dx and the other was to check for meningitis when I was really sick long ago.

your story is AWFUL.
i wonder if that "dr" was inexperienced and they didn't tell you that.

for anyone reading this IMHO,
anyone who goes for an LP should have it done under floroscopy.
the usual position is laying flat on your stomach.

the dr should be a radiologist and/or experienced in doing the procedure.

i can't stress enuf that you SHOULD ASK Q's. interview the center, hospital, dr. if you're not happy with the answers STOP. you don't have to submit to anything.

and, make sure that they are going to run the right tests. some folks have had lp's only to find out they didn't test for O-bands. handy to have your dr's orders on a prescription sheet to give to the dr doing the test.

sheeh, this makes me so angry for what you went thru.

Judy,

Thanks. :) Good advice for people.

I began to suspect that the guy was lying to me when he told me he'd done well over 100 LPs. I think that if he actually did, he did them on the LPs through the hole in the middle where the spindle went. At least he didn't practice on 45s. Seriously, how do you check to see if someone's experienced when they say they are unless it's afterwards? There was no way that I was going to let a med student do it.

*sigh* The only thing I'm happy about is that it's over, I'm nearly back to normal, and I'll get results.

Gazelle, my eyes are not working properly this morning so I apologize. What IS that in your avatar? I'm sure it's something quite obvious but my eyes are just not seein' it! :o

It looks like a bald eagle to me.

Or a hairy chicken!:D

HereKitty, it's a Bald Eagle.

Ding! Ding! Ding! Holly wins the prize and Flygurl and Greta get the prize for being smart aleks! :p

It's not the avatar that I would ordinarily have used, but I seem to have lost the majority of my avatar files I had on a hard drive that decided to stop working.

I asked my neuro surgeon how many ACDFs he'd done and he said something like 10's of 1,000s ..... he was maybe my age. I tried to do that math in my head.

"Don't leave much time for golfing huh? Any of em live?"

No wonder he didn't like me much.


Q for you... did you mention (maybe I missed it) spine MRIs? Brains are easy to read. Spines, eh, not so much. Maybe get repeats and pass them around.

BTW, I like the Eagle. That's on my bucket list, get a pic of one of those arrogant snots if I have to twist an ankle chasing around the yard.

:p

:eek: You said THAT to him? And you let him WORK on you after that? :eek:


Yep, had a spine MRI, which showed a thoracic lesion. Hopkins guy wants that repeated too. Maybe he's getting a kick back from the tests. I'm sure the insurance company doesn't like him much.

Regarding bald eagles--I saw one last year for the first time. I was driving in some relatively remote area and saw a big bird flying around. Thought it was a turkey vulture. Got closer and the dang thing kept getting bigger, and bigger, and bigger..... Well, by the time I was up on it, it was about 6' or more of wingspan and I realized it was an eagle. BEAUTIFUL bird. They are just amazing to see first hand.

I have to work on a list. I saw The Bucket List in the theatre and thought that it was great. I gotta get me one of them. The only thing that's on it right now and has been is to ride a Clydsdale. I want to sit one of those suckers at a trot!

My first experience was TM, and I as told it was either idiopathic or may turn out to be MS. There were left-over symptoms (after I recovered from paralysis) that went on for the next 12 yrs, but I never had another attack like what I had experienced previously. I thanked GOD every day, if that was what MS going to be like! :eek:

I too had a botched spinal tap. In the middle of the procedure, I flew out of the bed where I had been laying face down with my head propped up. They stopped the procedure and immediately took me up to the Brain Trauma Unit, where I spent the next week under round-the-clock observation. It was seriously touch and go . . .

Fast forward 12 yrs, and I had another "TM" attack. They waited to see if the same body parts/limbs would be effected, and when the paralysis creeped higher, and numbness went to my face this time, they knew they had the "space" (and time) that would verify MS.

I finally agreed to a MRI (I refused any more testing up till that point), and they found the original lesion in my T-spine, the new one in my C-spine, and three little ones in my brain. MS was confirmed.

TM can lead to a MS dx, or can be a stand alone problem. Spinal lesions are a whole different kettle of fish, even if it is MS, and my specialists have advised that there is no drug on the market that can influence them. If you had brain lesions, then perhaps the CRABs may be recommended, but it doesn't sound like you have evidence of brain one's anyway.

Basically, it's a waiting game for you now . . . until the next big or obvious attack. The LP may show O-bands, but that does not mean you have MS either. LP's are meant to rule out other illnesses, not rule in MS.

To be honest, from what you've said, it sounds like a MS dx might be inevitable. I would definitely ask if having O-bands will CONFIRM a dx of MS at this point in time anyway though. Why go through it otherwise?

Cherie

Maybe I should keep this avatar if only to see how many different things people call it!


Holy Christmas, Cherie, that sounds like a horrible experience with the LP and with the first bout of TM too. My neuro never even mentioned TM at the time it was happening. I had no clue what was going on--just knew that I was getting sicker and sicker and no one was doing anything or giving me anything for the SX.

I'm actually on Copaxone. The Hopkins guy says that he isn't sure I need to be. Ok, fine. I don't like sticking myself every day either. Makes me feel great about taking it.

But I do (or don't--depending on who you believe) have brain lesions (and if the Hopkins guy is wrong, I do according 2 neuros).

What gets me is that my first neuro said in 2003 that a spinal cord lesion couldn't account for the SX I was having above the thoracic level. I also asked him about sub-MRI level lesions and he said that was a possibility. His partner saw two lesions in 2005 and DXd me with MS.

I don't know anymore. I'm more frustrated now than I was before. Maybe there is an MS dx in my future that all can agree on. I just wish that I knew whether or not I should be taking the Copaxone. This isn't an easy decision--stop it and risk or take it and not need it.

Seriously, what do you do in this situation?

OMG Gazelle !!!
Just horrible - don't think I could have stood all that and I can only imagine how sore you are.... :hug:

I see a side-view of a lady dancing.

she's wearing a white hat (like a beret) and has reddish hair, a long full swirly grayish skirt, and an orange-ish shirt.

she's doing the flamenco or something, because her skirt swirls way up and around.

anybody think I need my *eyes* checked?

:)

I don't take the CRABs, but that is mostly because medications and I just don't get along at all. :( I am not sure that I would take them anyway, but that is just me.

If you have brain and spinal lesions, and you've already adapted to Copaxone, I'd say you may-as-well stay on. It sounds like you do have MS, and that is what most neuros would recommend.

Cherie

Now that you mention it, I see a Toulouse Lautrec Can-Can lady break dancing. Her boots are a bit on the orang-ish side, her petticoats are swirling all around, and her hands are on the floor.....

Cayo, you and I need to go drinking sometime (in a very safe place where no other people are around so they don't commit us).

sure!

but only if you *promise* to 'splain your sig.tag.

:D