SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
hi everyone, I'm so sorry I haven't responded yet to my other post or PMs. Thank you so much for caring and all the helpful advice. I'll respond to individual PMs when I'm feeling better, but I can't tell you how much I appreciate your thoughts and prayers.
Unfortunately, my spinal tap did not go well at all and I've been bedridden since then. First, my dr was an hour late and stressed from car troubles (not a good start!). And I apparently don't respond to Lidocaine (he said some people don't), so I felt the entire procedure and it was much more painful than I anticipated (and I have a high tolerance for pain).
Part of the increased pain was that he had trouble getting the fluid and had me MOVE during the procedure. It was unlike any pain I've ever felt and after it was finally over, the pain only got worse (back, pelvis, legs)
I ended up staying in the hospital for many hours and after Demerol, Valium, etc didn't touch the pain, they just kept telling me "this never happens", acted as if I were crazy, and tried to push me out when I couldnt even move my leg without crying.
Not surprisingly, the dr and nurses were so nice to me BEFORE the LP, but after it didn't go so well, their whole demeanor changed.
But since I didn't exactly WANT to be there either, with much difficulty, I finally went home. The next night, despite lots of caffeine and lying flat for almost 48 hours, of course I developed a severe spinal headache on top of all this!!
I tried to tough it out for a few days, but eventually had no choice but to go back to the hospital for the blood patch. At this point my back pain was more bearable and I thought I'd be ok since it was being done by an anesthesiologist, not my neurolgist.
But the anesthesiologist had the same troubles getting the needle in the right spot and again, I had no response to lidocaine and the procedure was horribly painful. He said I had obvious scoliosis in that area possibly adding to the problem. (and previous back injuries in that area too)
Thankfully the blood patch cured the spinal headache within 10 min (if only I could get a procedure to cure my daily lyme headaches!! -although the spinal tap did help those a bit - my opening pressure was on the high end)
However, since then my severe back pain has been even worse and unlike after the spinal tap, it doesnt seem to be getting much better (and it's been almost a week since the blood patch). I still can't sit up for long or stand/walk and even lying in bed is uncomfortable. I've also been feeling systemically very sick as well, and I'm not sure if it's my "usual illness" flaring from all the stress and trauma or something else.
Unlike my neurologist, the anesthesiologist is taking it seriously and suggested I go to the ER to be evaluated for possible complications from the procedure. I wish there was somewhere I could get evaluated without having to go to the ER because with neurolyme, that place is torture. But since anesthesiologists don't really see patients in an office, my drs say that's my only option right now. Sounds absurd to me though.
It makes sense to me that with the scoliosis, lyme, and previous back injuries, everything would be flared up, but it's not getting much better and now I'm getting worried I could be in that small percentage of people who develop complications.
I don't have numbess in my legs or arms though, the pain is in my lower back/spine, and radiates to my abdomen and down my legs, but isn't numb. In my back and abdomen it's more of a intense pressure/swelling sensation with sharper pain when I move or cough,etc. Also occasionally pin pricking sensations. they want to make sure I didn't get an infection, and said I may need an MRI too.
I'm sooo frustrated and sick from all this. But I'm gonna try to wait it out a bit more because I'm dreading the ER and so sick of drs.
Has anyone had something similar happen??
Sorry this is so long! Thank you for listening to me whine (and for all your help in my previous post).
BTW, the initial report did not show acute meningitis which is good, but he said it will take a while to get the other results.
Posts: 1563 | From MA | Registered: Jan 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Im sorry this all went bad for you
I am hoping you feel better. I would definately get an MRI if u can get someone to do it ( of the abdomen as well as spine).
I had just sent you an email- didn't see this post before I wrote it.
Thinking of you.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Both of my boys have had several spinal taps. They are done under sedation and are done by a neurosurgeon. They do get the really bad spinal headaches. But, their "normal" headaches are reduced.
Jordan had a caffeine IV after his last tap and it helped a lot.
How high was your opening pressure? Jordan's highest was 450 (or 45).
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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I'm so sorry to hear how badly the spinal tap went for you. I hope you are able to get the MRI and get taken care of soon.
I had 5 spinal taps when I was 12 because of supposed pseudo tumor cerebri (which now my doc says was probably actually Lyme) and increased pressure to the brain. The spinal headahces were horrible, but I did not have any complications, so I feel really bad for you. I hope you feel better soon.
Jill
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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Carol B
Unregistered
posted
-what a nightmare- I would be a basket case of despair. You have just confirmed all the reasons I ran(sort of) in the other direction when a spinal was suggested.
Blessings and prayers for continued healing, Carol
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posted
I had one in May. It didn't hurt while it was being done but it was a nightmare. He stuck the needle in under fluoroscopy and couldn't get any fluid. Like you, he had me moving, tilting the table, bearing down etc. He eventually placed a second needle a level higher. Again no fluid.
He could see the fluid but it would not come out. He said "I"ve never seen anything like this". Anyway, he slowly withdrew the fluid with a syringe. It took one hour to get a small amount.
I was flat for 3 hours then went home. Later that night the pain started. Worst pain I have ever had. I was screaming, couldn't move. I was like this for 36 hours before I went to ER.
I was admitted. They gave me IV dilaudid and IV caffeine. I went home the next day. The headache persisted for about a week.
Posts: 340 | From Ohio | Registered: Oct 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Sorry you had such a bad experience. Hope U feel better soon.
I will NEVER have another LP without sedation & Fluoroscopy. I needed 4 mgs of Ativan to be comfortable during this awful proceedure.
I also don't like the idea of an intrathecal needle without xray guidance.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm SO sorry, SunRa. I KNOW that headache and it's really indescribable...not to mention your back pain! Sometimes even doing EVERYTHING RIGHT doesn't help, as you proved. Hope you are feeling better soon. Sounds like your boyfriend is a prince!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
SunRa, wow, what an ordeal you have been through! I'm so sorry to read what a disaster it was for you then/now!
Good news; we had a new member join this weekend, BLUES DOC, a retired ER MD, who left his job due to lyme! Hopefully, he may eventually stop by your post; who knows?
If not, look for him. He's been giving excellent advise on topics he's read to date!
Hope you get to feeling better soon.
If you have an MRI, I had one in hospital where they put me OUT COMPLETELY. I could not handle the head mask being put on & strapped down for an open MRI plus the LOUD NOISE of MRI machine.
Bettyg ...praying for your complete recovery!
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
thanks for all the wishes and good thoughts (and flowers!)
from what I hear my experience is pretty uncommon. Maybe it just really angered some nerves and/or set off my old injury. Unless things get worse tomorrow, I decided to try to get through the weekend, then if I'm still bad I'll go to the ER Monday at a quieter time.
My wonderful acupuncturist is paying me a house visit tomorrow so I hope that helps a bit.
pab - 450? wow! mine was 200 and he said that was a bit high.
pattilynn - sorry yours went so badly too. thankfully once he found the right spot, the fluid came out fine. I dont think I wouldve been able to have the needle in for an hour! I wonder why they didn't give you the blood patch for the headache ??
Foggy - meeee tooo, although unless I'm definitely dying, there won't be a next time! I had IM valium beforehand, but wish I had requested the fluoroscopy.
Michelle - yes, he is definitely one-of-a-kind!! He's even been sleeping on an airbed (that slowly deflates all night due to an invisible leak!) because any movement in the bed hurts my back. poor guy
betty - thanks, I'll look for him!
Thanks again to everyone, I really appreciate all the good wishes!!
Posts: 1563 | From MA | Registered: Jan 2003
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posted
Sun Ra, I'm so sorry. Sending healing thoughts your way. hats
Posts: 956 | From MA | Registered: Nov 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
SunRa, Does your stomach still hurt? I want to talk to you. My sister had an experience with a spinal ( back disease problems big time, herinations, slipped disks, degenerative disk disease, neuropathy for her) but she had a spinal done ....
and they slipped. She just reminded me of that today when I mentioned you.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
I just had a spinal tap last Tuesday at "The University" to rule out MS. I am still recovering.
The Dr. said I might have a headache after the procedure. He neglected to tell me I would not be able to get out of bed for 3 days. To make matters worse all my symptoms flared up big time.
The internal blow torch feeling is back!
Oh yeah and the dr. said he had never heard of anybody being sick for three days.
I think I missed my calling as a neurologist. Order tests someone else does, when the come back negative say "maybe you will get MS, next year."
Posts: 20 | From NC | Registered: Jun 2006
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posted
I guess hubby has been really lucky. He has had 3 spinal taps and never gotten a headache.
First one was done in the neurologist's office. Neuro did a test that is no longer done -- CSF ratio test -- compares Lyme antibodies in blood and spinal fluid. Hubby's ratio was .93 and a positive test for Lyme would have been greater than 1.0 Of course it took another 6 months to get Lyme diagnosis as we never thought to question the reliability of the test.
2nd one done in a University "teaching hospital". Hubby was unconscious in his hospital bed and it took about an hour -- the resident doing the procedure couldn't get the needle in -- tried 4 or 5 times and then it dripped really slow and clotted so she had to stick him again --
she had one of the students holding him down at first, but he was so out of it that he never moved and they just moved his legs into position and he didn't move a muscle the entire time. Protein was elevated this time -- he most likely had encephalopathy.
The doc promised to send some of the spinal fluid to MDL but this didn't get done.
3rd test was done in hospital using Fluroscopy. Everything was normal.
Sunra, so sorry things went so wrong for you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Jen, I feel for you. I had five spinal tabs before I met Dr. K., however, I had no problem with any of them, no pain before and no after-effects whatsoever. However, when another school type recommended another one later on, once Dr. K. was in the picture, he said 'absolutely no'.
I hope very much for you to find a competent doctor that can help you. Please send me your new e-mail. All the best to you and R.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
They didn't offer me a bood patch but they did offer another spinal tap to see what the problem was. My answer was "NO WAY".
Posts: 340 | From Ohio | Registered: Oct 2005
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
thank you so much for all the good wishes. And pab, thank you for checking back in -- the support on this board is amazing. I've been able to move a bit more here and there, but still in a lot of discomfort. I'm hoping the next couple days bring some more relief so I can avoid the ER if possible.
Crime - thanks, I left you a message yesterday...I'm curious to hear about your sister's experience.
jcbaum - I'm so sorry you're in discomfort from your LP as well I'm sending healing thoughts your way and wishing you a speedy recovery.
Bea - thank you for sharing your husbands' experiences. I'm so glad he didn't have any complications. I think I'm a rare case.
Gudrun - thanks I will email you soon!
thank you all again for the good wishes, I really appreciate it I'll keep you posted if these incompetant drs find anything!
Posts: 1563 | From MA | Registered: Jan 2003
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
quote:Originally posted by pattilynn: They didn't offer me a bood patch but they did offer another spinal tap to see what the problem was. My answer was "NO WAY".
wow I can't believe they even suggested that!! Posts: 1563 | From MA | Registered: Jan 2003
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
So sorry to hear you had such a terrible time.
My husband's spinal tap went very well.
But he did just fine, and worked the next day.
Posts: 1366 | From Southeast | Registered: Sep 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Bummer! I had a similar experience but, not quite so bad. All seemed fine until the LP "technician" hit the nerve to my bladder with the needle. Ouch - everything in that area shut down instantly.
I ended up in the ER with a catheter to drain my backed up kidneys. The back pain was pretty bad too.
The Neuro's office claimed this has never happened and was related to my meds, not the LP. Excuse Me?!?!?! It happened DURING the LP. They took no responsibility and offered zero help. Had to rely on the ER nurses for help. They (nurses) said they have seen this before.
To make it worse, I was charged a bundle for a follow-up visit to my neurologist, which insurance denied because the office would not admit that it was for complications due to LP - wrote it up as a chiropratic adjustment. Huh?
Needless to say, I hope to never have another LP and, certainly not as an outpatient.
quote:Originally posted by pattilynn: They didn't offer me a bood patch but they did offer another spinal tap to see what the problem was. My answer was "NO WAY".
That's nuts!! As I've said many times here, my life would have to be in danger before I'd say yes to one. SunRa's story is not the first horror story I've heard here.
The medical establishment is losing their grip!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I am so sorry that you have had such a rough time. I had a tap done last year and was in terrible pain afterward. Hope that you get answers and feel better soon.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Hey Jen, long time no hear- but sorry to hear your LP was so aggravating, I hope you're doing better now. I think of you often and was hoping that when I "saw" you again, you'd be well. Do you still see our Dr.? Have you moved? We're both coming up on ~the 4 year mark for seeing the Dr. and joining this BB. Too long for anybody to have to suffer the horrible effects of this disease, with too few practitioners who know how to help. Anyway, once again, hope you continue to improve. Hugs, Cindy
Posts: 688 | From CT | Registered: Jan 2003
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
quote:Originally posted by Lymetoo: How are you, SunRa??
Hi Lymetoo and everyone, thanks for caring. The intensity of the pain has lessened a bit, but it's still debilitating -- especially combined with my systemic symptoms. I feel more feverish and dizzy, etc - maybe directly related to the back pain, but also could be my "usual" illness flaring.
I decided to give it until Wed morning -- if I'm not any better, I'll be going to the ER. I keep delaying it, hoping this will resolve on its own. In case you c�n't tell, I hate that place! I'll keep you posted.
beachcomber - yikes that's awful!! hopefully this post can be used to help educate others about the potential risks associated with an LP b/c the drs certainly downplay them.
cindy - wow, hi! yep unfortunately I'm still in this mess. I actually stopped seeing our dr when I moved to MA. you've entered my thoughts many times as well - how are you?? I hope you're improving.
thanks for the good wishes everyone!! I'll keep you posted...
Posts: 1563 | From MA | Registered: Jan 2003
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
I ended up going to the ER this morning and thankfully it was practically empty when I got there. I even got my own room with a TV which is a first for me in an ER! but it's good since I was there for over 6 hours (!!)
They were immediately concerned about spinal hematoma (bleeding) and spinal compression so they sent me for an MRI and told me I had to wait for the results and couldn't eat or drink anything just in case I needed emergency surgery.
it took them over 2 hours to come tell me the results - and of course that whole time I was anxious as hell after what they told me!!!
But THANK GOD the MRI results were ok!! ...except for some disc problems, but they don't think its from the LP. However, they do want me to consult with a neurosurgeon to investigate further.
I'm so exhausted and flaring from today, but I have to say the staff was so incredible and supportive which made everything much easier.
Even though I still don't have any concrete answers about what went wrong with the LP/blood patch, I'm glad I went and that the more serious complications were ruled out.
I'm not sure what to do next...I guess I'll consult with the neurosurgeon and hope that time begins to heal this.
thanks again for all the advice and for keeping me in your thoughts, I really appreciate it Posts: 1563 | From MA | Registered: Jan 2003
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posted
Jen, I do not come here very often, but when I saw SunRa I was hoping for some good news. I am so sorry things are still so rotten for you! I hope you will feel better soon!!! Marta
Posts: 121 | From CT | Registered: Oct 2003
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Jen,
So sorry about the spinal experience. Even with all my sensitivities, it didn't go down like that. I did take the Benedryl and some Clonopin before, but just had to lay down on the couch for some days. Couldn't tell what was a spinal and what was a lyme headache at the time.
I sincerely hope that you will get some relief. I do remember it set me back some because my stamina was poor over a year ago.
I am praying for a break for you.
Love, Di
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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Nancy2
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Member # 95
posted
Sunra...........I PM'd you. Are you doing any better? Nancy2
Posts: 1487 | From New England | Registered: Oct 2000
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SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
Marta, Di, and Nancy -
it's so nice to see you all!! thanks so much for the thoughts and prayers. Sorry I didnt respond sooner, I was staying with family in Ct - they dont have a laptop and it was hard for me to sit at the computer.
I'm not feeling much better, back is still really bad and all over not doing well. I need to get another opinion - this is insane!
I'll get in touch again when I'm feeling a bit better. thanks again for the kind words. I hope you're all doing ok! xo
Posts: 1563 | From MA | Registered: Jan 2003
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posted
I had heard a few people talk about how painful a spinal tap can be before having one done so I expected the worst. I realize now I should feel blessed.
I didn't feel any pain during the tap or afterwards.
Mine was even difficult because I have two metal rods in my back. I crushed my lower vertabrae in a car accident years ago.
They had to move me to XRAY to be able to the spinal tap. The neurologist couldn't get anything in initially due to the rods getting in the way.
They had to look at an XRAY while inserting it. Go in high and come down low. They tried about 10 times before they finally got what they needed.
And can you believe I didn't feel a thing and was relaxed through the whole thing.
I'm so sorry to hear so many of you have painful stories to tell. I wonder if it matters who the doctor is or is it just another every person is different thing.
Posts: 547 | From Maryland | Registered: Mar 2005
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-what a nightmare- I would be a basket case of despair. You have just confirmed all the reasons I ran(sort of) in the other direction when a spinal was suggested.
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