Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Just a waiting game now

Aug 05, 2016 2:24 PM

So I spoke to the neurologists office again this afternoon. I am not able to tolerate the amount of caffeine they want me to drink. Still with the headache, nausea, etc. His nurse is waiting on an email back from him to see what the next step is. Looks like I might be getting set up for an epidural blood patch at this point. Exciting already, huh? I'm not worried at this point, because I know we need to get the leak to stop already!!!!
That's about all I have at the moment. Will update you guys later on.

Aug 05, 2016 9:44 PM

Sending you hugs & love & praying it's soon! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 05, 2016 11:58 PM

{(hugs}} and hopes for you ๐ŸŒท

Aug 06, 2016 12:07 AM

Heartfelt prayers and lots of hugs to you amandamiddleton!! ๐Ÿ™๐ŸŒน

Aug 06, 2016 5:16 AM

Hi Manda ๐ŸŒท
The blood patch usually works very well... they take ur own blood, and inject it over the leak... then the blood clots... and this causes the leak to be sealed, bit like a blood plaster/band-aid!
I am surprised they have left it so long! Drink plenty of fluids hunni, hope u get fixed up real soon ๐Ÿค—

Aug 07, 2016 6:48 PM

This afternoon, I actually did something I'm not proud of having to do, but it needed to be done.
I actually requested yet another medical leave of absence from work at least until we can get these issues sorted out already.
And yep, still with the freaking headache already. Going back to bed right about now. If I don't, it feels like I'm going to loose my lunch or dinner.

Aug 07, 2016 8:44 PM

Hugs love & prayers they get the headache stopped stat!! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 08, 2016 10:29 AM

Blood patch scheduled for tomorrow afternoon at 2:15 pm. EEK!!!!!

Aug 08, 2016 11:51 AM

U will be fine angel โš˜โš˜โš˜
With u in spirit hoding ur hand tomorrow ๐Ÿค—

Aug 08, 2016 2:48 PM

You know you've got my hand to hold Amanda.. I always keep you laughing and on your toes๐Ÿ˜Š๐Ÿ™ƒ๐Ÿ˜Š

Aug 08, 2016 9:16 PM

Hope today has been a better day. {{Hugs}} and hope.

Aug 09, 2016 1:38 PM

7, it has not been a better day. Pissed off is the least offensive word I can find. Unfortunately for me, I was scheduled to have the blood patch done today, but the doctor refused to do it, because of my past history with MRSA. I don't know if that wasn't communicated or not but I had already registered and everything. I have already left a message at my neurologists office but probably won't get a phone call till tomorrow.
There is going to be a discussion at my next appointment already. I'm done with this crap.

Aug 12, 2016 3:05 AM

Omg! ๐Ÿค—I missed this post Manda... ๐Ÿ˜คwtf! I cant believe they got u all psyched ๐Ÿ˜ฅup for the proceedure and then ripped the rug from๐Ÿ˜• out of u hunni!

How is ur head now? ๐Ÿค•The stress alone from all this pissing about...๐Ÿ˜ฎ has to be the cruellest thing (i know from experience).

๐Ÿ˜‡ try to breathe angel... centre urself and plan exactly what u want to say to the neuro.. ๐Ÿ“so u dont break in his office or on the fone. ๐Ÿ˜Š

๐Ÿ˜Is there any news hunni? โš˜โš˜โš˜Sending hugs ๐Ÿค—

Aug 12, 2016 3:39 AM

Ughh :-( Unfair! What now? Are you suppressed to do their job for then?!! Keep us posted. Are you still nauseated? Rats.
I've the same feeling as when my friend worked at one bank taken over by another & it was legal for them to raid the retirement accounts. Grrr!

Aug 12, 2016 2:15 PM

Lula and 7, unfortunately they told me that I could go to the ER and get a blood patch. By that point, my headache had started to go away.
But, when I woke up this morning, I had the symptoms of my pseudotumor coming back. DAMN!!! 3 weeks after I had my tap done, it started again(pain and pressure behind the eyes, a little bit of a headache, nausea, heat intolerance). I'm holding off on calling the neuros office until Monday, cause they can't do anything for me. I do have an appointment with my PCP on Thursday and I do have some questions that need to be discussed, I don't think that my neurologist knows exactly what to do with me at this point, and I'm getting really frustrated.
He brought up the idea of sending me to a neurosurgeon to talk about getting a VP shunt put in, but then he back tracks on it. I'm hoping that they can communicate my thoughts about it, because I'm not being listened to. Needed to get that out already.
And yes, I was super pissed at them when all that crap happened. Still am to some degree, but not as bad. And no, I refused to go to the ER for that.

Aug 12, 2016 2:26 PM

I totally understand sweetheart... its an absolute bitch! ๐Ÿช im refusing to have an LP here cos it took them 6 tries the last one... i had to lay flat for 72 hours... the head pain was so intense... and now i have titanium cage and osteo-arthritis and stenosis... right where they need to take the sample. I asked for the flouroscope exray thingy to be used... they said no as i had it done privately and its the NHS neuro that ordered a barrage of tests incl. The LP.... no chance!
Sorry u got a rough time of it hunni... take care of ur eye balls tho kitten... u only get one pair x

Ready to start relieving your pain?

Join Community