Unexpected medical adventure

[stracci2000]

I'll be thinking of you TP, and hoping for the best! {{Hugs}}

 

[kenny]

Haven't read this 3-pg thread, only the OP.

TP, my heart goes out to you and I send you a big e-hug!
Medical issues can be so frightening and all-consuming.

Now, to read the thread.

 

[Bonfire]

Healing vibes and big hugs coming your way TP! I admire your brave attitude. All the best!

 

[princessandthepear]

TooPatient, I wish you a safe successful procedure and hope that you continue to have the best of medical care on your journey.

 

[MaisOuiMadame]

Thinking of you TP! keeping fingers crossed for successful procedures, fast diagnosis, efficient treatment and fast recovery!!

 

[WhitePeonia]

Dear TP, I join the other PSers in saying that you are in my thoughts and prayers.
Sending you my hugs and the most positive healing vibes!!

 

[KaeKae]

Thinking of you today, TP.

 

[missy]

TP sending bucketloads of healing dust and good luck for today's procedures! (((HUGS))).

 

[Sunstorm]

Healing dust and positive thoughts sent your way! You must be having your tests now. Will anxiously be waiting for results. This is such a scary situation but at least they are checking you thoroughly now.

 

[junebug17]

Thinking of you today TP. (((Hugs)))

 

[tkyasx78]

I am sorry that you are going through this. Good luck and I am Thinking of you today!

 

[Cluless]

TP I just saw this, so sorry you are going through this. Thinking of you, keeping you in my thoughts and prayers. Gentle Hugs to you.

 

[rainydaze]

Thinking of you TP. Hoping they find some answers for you. Hugs!

 

[Dee*Jay]

TP, thinking of you and hoping you get your issue diagnosed and resolved very quickly!

 

[azstonie]

TP, go get 'em today!!!

I also thought of another thing regarding lumbar puncture: Frequently the proceduralist will forget to record the opening pressure and the closing pressure. This is good information to have. Remind them: Please record the opening pressure and the closing pressure.

If I'm too late for today's LP, if you have one in future (I know, cra cra, but sometimes there is more than one).

 

[redwood66]

You will be in my thoughts today and every day TP.

 

[TooPatient]

TP, go get 'em today!!!

I also thought of another thing regarding lumbar puncture: Frequently the proceduralist will forget to record the opening pressure and the closing pressure. This is good information to have. Remind them: Please record the opening pressure and the closing pressure.

If I'm too late for today's LP, if you have one in future (I know, cra cra, but sometimes there is more than one).

Good to know!

My LP was supposed to be 9am. Transport came to wheel me down at 8:45. The nurse had not yet given me ativan. They also hadn't asked about the dose increase I requested. Transporter impatient. Nurse get call back from doctor. Good logic start 2mg they can add more in room as needed.

Atervil is PAINFUL going in. Especially after having it yesterday.

Got downstairs coherent, anxious, and not at all ready. They could fo oral Ativan (where was this before!?!?) but the delay waiting for the nurse who didn't give in preparation meant they had no time.

Rescheduled for 4pm with an anesthesiologist to do sedation.

 

[junebug17]

I'm sorry TP, it's a shame there was such a long delay and this has been dragged out. Hang in there, sending good thoughts and comfort.

 

[AGBF]

I am very, very sorry they screwed up your Ativan, TP. I was a total mess before a colonoscopy recently. I had had a very bad prep with a migraine and dry heaves and chills. My BP was high; I was gasping for breath from anxiety; and the nurse was running my blood pressure around the clock to see if it would go down. There is no excuse not to give you a medication that you could have been given before your procedure and to give it to you in a timely manner. It sounds as if you (or your dh) fought for you to get it before you had the LP. On the other hand, this way you had to wait all day. I cannot tell you how sorry I am that before a serious procedure that you were not treated more carefully.

Big hugs,
(((TP))))
Deb

PS-I love it that red said you would be in her thoughts every day. You will be in mine every day, too. You are precious.

 

[sarahb]

TP, am so sorry you are going through this, nothing can be more unsettling than an undiagnosed health issue, sending buckets of Dust. (I think Audrey should add Missy's emotie to our smiley selection, love it Missy!). I was diagnosed with MS over 30 years ago in my late 20's. The first presenting symptom was double vision, (vertical diplopia) shortly followed by numbness (full body) & loss of fine motor control in my hands--this went on for a couple of weeks in varying degrees. Could not button buttons, use mascara wand etc. Everything eventually subsided, the final diagnosis was intermittent MS. & its been fairly benign over the years. Have led a full & complete life! Have had some episodes though, & thankfully am completely ambulatory. Went through multiple lumber puntures, a visual evoked test & other tests I can't remember in an effort to diagnose. Now I get yearly scans--can't remember if they're CT's or MRI's to monitor the brain plaque. MS is 100% diagnosed from a collection of tests as you might already know. Until they figure it out, just hang tight, nothing you can do. I was actually relieved it was MS! But if you find yourself newly diagnosed, I'm sure you'll hit up google. Keep what info you read relevant to your situation & not go off the deep end if you see info not pertaining to your own MS involvement. I'd be more than happy to discuss this further if it is MS ultimately, I hope it all goes ok for you today & will be checking back in later!! Sending Dust & hugs!

 

[missy]

Frustrating for sure especially because you warned them you would need more than the average dose of Ativan. But OK now they really get it and the 4PM LP is going to go smoothly!!! Sending bucketloads more dust to you my dear TP and more hugs and love. We are all on your side rooting for you.

@sarahb this dust emoji is in the hangout section of emojis but I agree...would love to see it added to the bottom of the page with the rest of the oft used emojis here. It's a very useful one and very visual which of course is what a good emoji should be.Visual.
@AGBF I am so sorry you went through that ! And I agree with you about what a lovely sentiment @redwood66 wrote. Today and every day we are keeping you in our thoughts @TooPatient.

 

[ksinger]

Good to know!

My LP was supposed to be 9am. Transport came to wheel me down at 8:45. The nurse had not yet given me ativan. They also hadn't asked about the dose increase I requested. Transporter impatient. Nurse get call back from doctor. Good logic start 2mg they can add more in room as needed.

Atervil is PAINFUL going in. Especially after having it yesterday.

Got downstairs coherent, anxious, and not at all ready. They could fo oral Ativan (where was this before!?!?) but the delay waiting for the nurse who didn't give in preparation meant they had no time.

Rescheduled for 4pm with an anesthesiologist to do sedation.

Sigh. Nice to know hospitals are the same all over the place.

So sorry for the delay due to screw up. I'm glad yours wasn't life-threatening, and is only (ha!) anxiety-producing and time-wasting, but there's really no excuse for stuff like that. Even non-life-threatening screw ups can be pretty awful on the patient. Yeah, I have stories, of course. For another day.

So stay strong and hold tight: you're going to make it through this. I'm glad you're going to get sedation. I'm a huge fan of being sedated for damn near everything. There's rarely a reason nowadays to NOT give sedation for stuff. Suck up to the anesthesiologist, that's my motto. Tell them they are more important in your eyes than the doctor doing the whatever. Tell them they're beautiful/handsome. Flirt. A good anesthesiologist is right up there with God, in my book.

 

[TooPatient]

Coordinating Dr was just in. He is going to talk with the other Drs involved and see if a pic line is needed.

Not sure how I feel about one. Not familiar with them.

ETA: no pic line. They are waiting for LP to confirm, but planning first steroid treatment tonight then another tomorrow. May be sent home tomorrow!!!

Referring to one of the best neurological MS specialist in the world.

 

[ksinger]

Coordinating Dr was just in. He is going to talk with the other Drs involved and see if a pic line is needed.

Not sure how I feel about one. Not familiar with them.

ETA: no pic line. They are waiting for LP to confirm, but planning first steroid treatment tonight then another tomorrow. May be sent home tomorrow!!!

Referring to one of the best neurological MS specialist in the world.

Yeah I was wondering when they were going to hit you with the steroids. Hopefully, that will put your eye on the fast track to back to normal.

I don't know what the docs have told you, but for you and for anyone who is interested in such things, here is an explanation of the rationale for the LP.

They are going to be looking for unmatched antibody banding, aka oligoclonal bands or O-bands for short - in your spinal fluid. They will match the banding in your blood and in your CSF. Any banding that occurs only in the CSF, is an indication that there is immune activity that is confined to the CNS. If you have banding it will still not be "the thing" that shows you have MS, but it will be one more piece of the puzzle. Unfortunately, if you don't have banding, it doesn't mean you don't have MS, it just means they have to work harder at the diagnosis.

And it sounds like you're in a place that probably has the ability to run the O-band test. Many places still have to send their testing to The Mayo. Where I am, I got the results in about 3 days, so we have the tech here to do those. I hope you do too. Otherwise the wait can be weeks.

And I'm SO glad you've got a great specialist. MS specialists are not plentiful, and often hard to see. I'm sure he'll do a great job for you.

 

[azstonie]

PICC LINE ? Unneeded. Nope. Lot of hospital-acquired infections come through lines and catheters. Refuse unless necessary, for example, wear adult diaper instead of catheter.

REQUEST OPENING AND CLOSING PRESSURE ON YOUR LP. It's pertinent info to Neurology/Neurosurgery.

 

[mary poppins]

Lots of good news for you today, TooPatient. Yay for ativan, anesthesiologist, no picc line, referral to one of the best neurological MS specialist in the world, and possibly going home tomorrow. Thinking about you and sending more dust. I hope the LP goes well and you can leave tomorrow.

 

[azstonie]

ksinger, I was at Mayo for just under 10 years. They have good Neuro-MS docs, I think.

 

[caf]

TP - thinking of you. Stay strong!

 

[junebug17]

great news about the specialist TP - keeping you in my thoughts and hoping all goes well this afternoon and you can go home tomorrow.

 

[ksinger]

ksinger, I was at Mayo for just under 10 years. They have good Neuro-MS docs, I think.

They do. Mostly. But they have a bad rep in the real MS-world. They are known for using their own diagnostic criteria for MS, that was (is?) different than the standard McDonald Criteria, or they were last time I read about that - say 2015 or so. There's even a disparaging phrase on many of the MS websites because of it: "Hold the Mayo". Which of course, says nothing about their lab facilities, just their docs. I think sometimes places like that start believing their own press a bit too much.