Dayummmm Syphilis

[Ac75088]

I'd help u out if I could!!

[BT65]

Good luck Phil.  I'll be looking for an upate, and wish you the best.

[phildinftlaudy]

Thanks for the kind words and support everyone -
I leave here (work) at 1:30 and a colleague is driving me over to have the procedure done - then another colleague is picking me up and driving me home after the procedure.

I will be leaving here in about 40 minutes - signing in at UM at 2; procedure at 3; and should be out of there around 5:15 and home by 6....

Ugggghhhhhh, and yes the nerves have kicked in, but it will be okay. 

[phildinftlaudy]

LP done - at home resting
I'm a little sore from where they put the needle for the procedure and did the lidocaine injections - they had to give me an extra one because the first one wasn't deadening the spot enough.

I have a very slight neck ache - but nothing too bad.

Overall, it went well.

I should have the results within a couple of days.

Thanks all for your support.

[Jeff G]

Thanks for the update . hopefully the worst is over and you will be on the mend soon . Hang in there .

[Buckmark]

I happy your LP is finally done, Phil!  But not as happy as you are, I'll bet!

[WillyWump]

Phill, so glad your LP went fine, and glad you avoided the dreaded headache.

Anxious to hear the results.

Now go take it easy for a bit 

-Will

[phildinftlaudy]

Phill, so glad your LP went fine, and glad you avoided the dreaded headache.

Anxious to hear the results.

Now go take it easy for a bit 

-Will

Thanks Will - but...... neck is starting to hurt worse - I've taken 4 tylenol so far ----
and feeling dizzy.... getting ready to lay back down on the couch and be immobile - which is hard for me - I'm used to moving around and doing things ---- Mr. Multi-tasker  (lol) but feeling kind of crappy right now.

[BT65]

Phil, I hope you're feeling better today, and that those awful side effects go away soon. 

[phildinftlaudy]

Thanks B -
Neck is still hurting --- nothing extreme - just a constant low level pain; still some dizziness when I sit up for too long...

I am working from home today - I brought all my paperwork and info I need on flash drive - and have access to my work email.... I have a conference call at 10:30 and another at 1:00 - which I can do remotely.

In between writing three grant projects that I am working on (one with a 9/1 deadline, one with a 9/2 deadline; and another with a 9/6 deadline) I am making sure I keep some caffeine going in me (to ward off the headache), taking Tylenol, and taking intermittent breaks - laying on the couch.... 

I think I am getting through it okay - I might have been able to go to the office, but didn't want to chance being on I-95 in rush hour traffic this morning and having a bad headache or the dizziness hit (the drivers are crazy enough without me driving dizzy).  I also would have had to take breaks laying on my office floor and that isn't really too comfortable.  Boss was cool with me working from home - I will go into the office tomorrow and finish up a couple of the projects - the goal is to have them ready for College President approval first thing Monday A.M.

Thanks again all for the support and dealing with my anxiety over the procedure - which really was unwarranted as it wasn't that bad.

Now, just waiting for results - they took the samples immediately to the lab yesterday after the procedure, so those should be back today or tomorrow.

[phildinftlaudy]

So the results are starting to "trickle" in --- Still waiting on the primary results (the VDRL).

got this email from my doc a little bit ago...

OK Phil, so far everything looks good (cell counts, glucose, etc) but the VDRL is the main test and that will be done later today.

I’ll let you know.

Hopefully, I will know more later today ---- and the headache has now become more persistent, but not debilitating.

[Since2005]

I'd help u out if I could!!

Me too! An order of chicken noodle soup is on your way

Hope you recover soon!!

[phildinftlaudy]

Good news -
Doc just emailed me -
Test results = Non-reactive

She says "no worries" and for me to contact her next week, so we can arrange for the two cement butt shots and that should take care of putting the titer in its place.

 

[Rev. Moon]

Yay!  I'm happy for ya 

Now, don't go celebrate at the local bookstore.  Take a little break, ho 

[phildinftlaudy]

Yay!  I'm happy for ya 

Now, don't go celebrate at the local bookstore.  Take a little break, ho 

But, I only go to the bookstore to read the books and magazines 

[Raf]

Congrats! and well, at least all you will get it's a couple of (big) pokes behind there 

[Ac75088]

Yay!! So glad you don't have to go thru the boredom in the hospital that I had to endure! Glad u are doing good..Keep sucking down the caffeine and DO NOT drive with that headache! You might end up like I did..On the side of the road crying like a 2-year old

[BT65]

Great news, Phil.

[Ann]

What a relief! Good luck with the cement shots. Ouch!

But, I only go to the bookstore to read the books and magazines 

Yeah, yeah, yeah. We all know you only look at the pictars.

[denb45]

Good news -
Doc just emailed me -
Test results = Non-reactive

She says "no worries" and for me to contact her next week, so we can arrange for the two cement butt shots and that should take care of putting the titer in its place.

 

What did I tell ya Phil ?  I was correct wasn't I     now keep outta them n bookstores, they aren't good for you    I 'm happy that it all worked out for the better, take care now 

[Buckmark]

Good news -
Doc just emailed me -
Test results = Non-reactive

Great news, Phil.  Time for a Snoopy Dance!

http://www.darkharbor.com/snoopydance/

[Assurbanipal]

Glad to hear that Phil

A

[Basquo]

Phil, I've been purposely avoiding this thread because it brings back memories of a S-situation with my now-deceased ex...and it was very selfish of me to do so.

I read it all today, and the support you have been given (and a lot of the side-tracks) is priceless! I'm glad everything went well and ended up in only the cement butt shots. Healthcare is a lot of people involved in scheduling a lot of shit and having to fill out a lot paperwork. I agree with you and everyone that the scheduling headaches were unnecessary.

Speaking of headaches, in case anyone reading needs pain relief after a LP, the last time I checked, Excedrin still has caffeine in it. It was the drug of choice for Rush Week when my sister was a sorority girl.

Hugs,
Creighton

[phildinftlaudy]

Thanks for the support everyone -

It looks like I spoke too soon yesterday ---
I just got back from the hospital - I had to be taken there by ambulance this afternoon about 2 pm.  I had a massive post-lumber headache and neck ache --- was vomiting and everything --- WORST headache i have ever had in my life - I was crying like a baby.

They gave me a CT scan and some dilaudid -- but they elected not to do the epideral blood patch - but gave me a script for percocet and caffeine pills. 

I am back home now and resting - and I do mean resting.  I think I tried to do too much yesterday and had plans to go into the office today and tomorrow to catch up on some work - but no matter what I plan, my body is telling me different.

WORST headache ever --- I wouldn't wish it on my very worst enemy.  I am hoping it has passed now - I am scared to death of it coming back - that is how bad it was.

[Ann]

Shit Phil, I was worried this would happen after you were going on about how much you were doing instead of LYING DOWN. One could be forgiven for thinking that should have been easy for you.

I hope you keep still for a while and GET SOME REST DAMNIT!!!! They should have kept you in the hospital and tied you to the bed.


Feel better, ok? Bad headaches are no fun. I used to get migraines so bad that I'd bang my head on a wall because that actually felt better. Weird, eh? Anyway, I can empathise.

[buginme2]

So sorry to hear about that. I hope you feel better soon.

[Rev. Moon]

Shit Phil, I was worried this would happen after you were going on about how much you were doing instead of LYING DOWN. One could be forgiven for thinking that should have been easy for you.

I hope you keep still for a while and GET SOME REST DAMNIT!!!! They should have kept you in the hospital and tied you to the bed.

I knew it. 


Phil, you silly hooker, I told you not to go tricking at Twist and the adult bookshop last night.  You are supposed to REST. 

Hope you are feeling better now.  DO NOT GO TO THE OFFICE TOMORROW.  Stop playing.

Hugs 

[Jeff G]

Sorry Phil ... feel better soon .

[Ac75088]

Oh no!! Phil Im so sorry that u caught that horrible headache..I know it all too well..U were like me! Tryin to work and shit! It's one of the most awful things u can have! Worse than a toothache! The post LP headache is the ONLY headache that made me cry too..I actually considered suicide lol...Rest Rest Rest!! I would spank you if I could!

[Ann]

I really have to wonder why hospitals don't treat an LP as an inpatient procedure and strap workaholics down to their beds for at least 24 hours afterwards. It couldn't end up costing more than the follow-up when the intense headache happens, could it? I mean, when you add in the cost of the ambulance ride, the CT scan..... it all could have been avoided by an overnight stay and some straps.

Phil, hope you're feeling much better today. If you are, DO NOT take that as a sign you can do some work. REST! That's an order, mister!

[phildinftlaudy]

I will say that the LP headache is nothing like I have ever experienced before - worse than any migraine I have ever had --- I honestly didn't care what they did to me at the hospital, as long as it was going to make the pain stop.  It is that intense. 

I agree Ann that they really should do better post procedure care - as it had to cost a fortune for the hospital visit yesterday with ambulance, CT, etc.  I don't know how much I will get hit with - it depends on whether my insurance company defines the ambulance ride as medically necessary.  I know that I will have a $200 copay for ER - since I was not admitted.  If they would have admitted me, it would have been waived - but then I would have had  a $300 a day (for up to 5 days) copay for admit. 

The CT and other procedures will be covered.  The ambulance will be no charge if considered medically necessary - otherwise, I think it might be another $100.

I feel a lot better today - I still have some neck pain - and I have a fear of the headache returning, so I am taking it slow.  However, I do have to do some work today - as I have a deadline for a $750,000 grant that has to go for approvals tomorrow and a $35,000 grant that also has to go for approvals.  I am going to go easy on things though - and ease my way into it,  but with $800,000 on the line and all the work that various people have put in to getting the proposals done, I can't just drop the ball....   I only give the above info to put into perspective why I have to work when I feel not quite up to it -- believe me, I would love nothing more than to not do anything - but that is not an option.

I will definitely go easy though and space everything out.

[hope_for_a_cure]

Phil... what are we going to do with you buddy???  Glad to read you are feeling better at this point in time. 

[phildinftlaudy]

This just don't make no dayummm sense --
I keep trying to get some of this work done, but I can't sit up for more than 10 minutes without my neck hurting and stiffening up so bad that it nearly brings me to tears.

Extremely frustrating.

I wish this pain would just pass already.  They should have sent me home with a morphine drip, dayummm it!!!!

[Jeff G]

This just don't make no dayummm sense --
I keep trying to get some of this work done, but I can't sit up for more than 10 minutes without my neck hurting and stiffening up so bad that it nearly brings me to tears.

Extremely frustrating.

I wish this pain would just pass already.  They should have sent me home with a morphine drip, dayummm it!!!!

Go lay down NOW ... its the perfect solution  .

[Ann]

They should have sent me home with a morphine drip, dayummm it!!!!

They should have strapped you to the bed like I said earlier.

This is a time when a houseboy would have been ideal. He could have held your laptop above you at just the right angle so you could work while lying on your back in bed - if his dangly bits didn't distract you too much, that is!

I get how important this bit of work is to you, but isn't there a coworker who could help you out? I mean, come on Phil, your health has got to come first. Dayummmm indeed!

[skeebo1969]

  Sounds like a horrible ordeal, I hope you feel better soon.

[hope_for_a_cure]

Go lay down NOW .

Exactly!!  

[buginme2]

I like Ann's idea of a houseboy! 

[phildinftlaudy]

Sent home from work today as I have excruciating pain in my neck - I can barely move it.  I only feel no pain when laying completely flat.

I have contacted doc who did LP - he says its not his responsibility to handle situation - and told me to contact the referring doc (my ID doc).

Talked to my ID doc who says it is not her responsibility to handle as it should be the doc who did the procedure.

Talked to ER at UM - they say it is responsibility of either my ID (referring doc) or the doc who did the procedure to handle as there is nothing they can (or will) do.

I have called Patient Relations - they are trying to sort things out and see who can handlle the situation -

They seem to think it may be a leak of CSF (?) fluid - causing the brain to push down on the brain stem - which is located at base of where head meets with neck - but no one wants to take responsibility to do a epidermal blood patch to seal the leak.

So, here I lie at home - waiting for UM to find out who will take care of me ----
My mother, who is my medical surrogate - is giving them until 3 to call back and then will be calling them.

And, yes, I am lying completely flat as I type this...

[hope_for_a_cure]

Somebody needs to fuckin do something and get you some relief from this excruciating pain. 

[Jeff G]

Phil I'm so sorry this is happing to you . You seem to be handling the frustration you must feel in stride . Get well soon .

[Miss Philicia]

This really sounds like a ridiculous situation, and ultimately your PCP needs to sort it out as to who to send you to. Why can't you just go to the ER?

[phildinftlaudy]

This really sounds like a ridiculous situation, and ultimately your PCP needs to sort it out as to who to send you to. Why can't you just go to the ER?

I went to ER Saturday - and they said they don't do the blood patch there.  I spoke with both docs yesterday via phone conference call facilitated by Patient Relations.  They have me on bed rest until tomorrow.  The doc that did procedure says I am just one of the rare cases that is having an adverse effect.  He still does not want to do blood patch as he says it has its own potential complications.  He said if I am not better by Thursday (one week post procedure) he will consider doing it.  Meantime, they have me on caffeine and pain pills - but I still can not stand or sit upright for more then a few minutes without severe neck pain.  I'm hoping it passes today.

[Ac75088]

Oh Phil, I am feeling your pain all the way over here in Texas..I can't believe they are pushing u back and forth like that..That's an entirely different headache on it's own..I feel so bad for u man, since I have felt that headache..It truly is a sledgehammer blow to the back of the head..I cried everyday I had it man..I just hope yours will begin to subside soon..I went thru 5 agonizing days before I was admitted to the hospital for my syphilis treatment and they gave me pain meds to help with it..Headache was finally all gone a week after my LP..Keep ur head up buddy...or...in this case, keep it down, on a pillow

[phildinftlaudy]

Thanks all -
Back at work today -
Headache/neck ache finally passed last night around 10:00 pm (5+ days post procedure)

I am going easy on things today - as I feel much relief, but at the same time I can tell that if I move too suddenly or jar myself in any way that it may come back.

Now, I just have to schedule the follow up with my doc for the cement butt shots - which should occur next week sometime.

Dayummmm syphilis!  Also, my doc has been informed that unless it is a life or death situation, I will NEVER have a LP done again. 

[phildinftlaudy]

So, the hospital sent their claim to my insurance company for the ER visit last Saturday:

$10,308.00!!!!

Of course, my insurance has their established agreement with the hospital - so they will actually only have to pay $895 and my co-pay is $200.

Still waiting on the ambulance bill.  That should be another nice one.

[alberche]

Dear Phil,

Glad to hear that wasn't neurosyph!

I was surprisingly diagnosed of syphilis last July. Testing done since I got infected until this one in July have not  showed anything. My doc says that titleing is in the lower range, which means a secondary stage, so I should have go infected some time ago.

I've been a good girl, I promise!!!! But, in my case, it has not been enough though! (Maybe I have to make a new definition of what means to be a good girl....)

Well, I got immediately those six cement injections, two each week during 3 weeks.

Now in October I will be tested again. My doc already has informed that if titles remain unchanged, I'll be candidate for a LP and intravenous. So I hope cement did its job!!! Don't have any particular interest in having a LP done, the sole idea makes me feel the pain already.

I am a bit tired of all this! but, what did I expect?? Let's wait and see.

Thanks for sharing your experience!

Hugs!

[phildinftlaudy]

Hi Alberche -
Hope your titer goes down ---- the LP procedure itself is not bad at all.  They basically give an injection of lidocaine in the area (which stings a little) - then they do the actual puncture (which I did not even feel) - I just laid there and tried to keep my mind at ease (meditation) and kept my breathing relaxed.  Immediately after, I didn't feel anything either.  It really wasn't until a couple of days later.  I would suggest asking your doc (if they do have to do an LP) for a script for some pain pills (like 5 or 10 mg Percocet) - that way you can have it filled and ready to go to be immediately ready to deal w/ the headache if it starts coming on.  Both docs involved in my care admit that is where they "dropped the ball."  If you can get the headache under control before it gets the upper hand then you should be able to handle it.  (They say only 30% get post LP headache and only 5% get it as severe as I had it)

BTW - tomorrow at 3:30 I get my two cement butt shots - the doc hasn't let me know yet if it will be one round or if they will do three (with my titer hanging at 1:8, it may only be one round - and I think the clinical guidelines for syphilis treatment w/ people co-infected w/ HIV has been revised to say just one round of the shots is needed - although, some docs still go old school with it).

Best of luck on your labs - keep me informed - and feel free to PM if you need to ask anything during the process.  Ac (one of the members here) was a big source of support for me during my experience - as were many others on the forums.

-Phil

[Ann]

(They say only 30% get post LP headache and only 5% get it as severe as I had it)

Trust you, Phil. You're so speshull! Good luck with the cement. Hope it sets well.  

[phildinftlaudy]

Good luck with the cement. Hope it sets well.  

Well, getting ready to leave the office and head to my doctor's office at UM to get the 2 cement butt shots..... I can think of a lot of other things that would be more enjoyable.  I should be posting in a few hours, albeit in pain (Ouch, already hurts just thinking about it).