My wife and I have been waiting for an appointment to have the LP that her Neuro wanted done. I can't tell you how many times I have called them. My sister-in-law has been calling them as well and we can't ever get an appointment and it is starting to drive me crazy! They keep telling us, we'll let you know and then they never do! Its bad enough that my wife is going to have a hard time dealing with this. She doesn't ever want to see another doctor or have any procedure again! She's frustrated and I am too as I have to do this balancing act between trying to get the office to give me a firm apppointment, take off time from work, and then try to convince my wife to do this, and then deal with all the emotions. I know already, that she will be in a bad mood, upset the entire time, and I just hope the LP isn't uncomfortable. I'm thinking that if they'll let me, I'll stay with her as they do the LP.
Is this typical? I mean I know it is New York City and it's Columbia University and there are SO many people, but I'm about to bust a vain here!
The family is very concerned that she get this done. They hope that maybe it might be 'something else' rather the AD. And maybe I do too, but I'm nothing if not a realist. If there was a chance it could be something else, I would have thought they would do the LP ASAP. It was supposed to have been set up 3 weeks after the visit with the Neuro.(9-25-08) It is now 11-03-08. I can still do math and that's more then 3 weeks.
Guy, cant you have it done somewher else ?and have the results sent to her dr? or call her dr again and have his nurse call and schedule it for you? i would be concerned they havent responded by now, it would raise red flags for me about how things are run there..divvi
Guy, what is a LP? Sorry about your delay. I have run into similar problems getting appointments scheduled and it is ridiculous. Be nice if you could get it done someplace else.
Yes maybe having it done by someone else may be the way to go here. He's a great guy, but his office has lots to be desired. When we saw him on the 25th, he said we weren't scheduled for that day, even though I had called and confirmed the appointment. He was very nice and said he would see us, but we had to wait for almost 3 hours!!
I'm going to give them until the end of this week. I will call them every day! isn't this all hard enough without putting up with a situation like this?
well with what you just said, i would opt to go ahead and schedule in another hospital. i think it can be done anywhere, they will draw fluid etc...and do tests, basically..the same i would think without all the hassles. anyway, best of luck hope you work it out! divvi
Guy, this is just wrong on so many levels. I agree with divvi, the more you tell us the more convinced I am that I would be going to another hospital. If they treat their "new" patients this badly, scares me to think of how they treat their regulars. eeek If you really do want to go to this particular doctor, it wouldn't hurt to put a call into the hospitals human relations department. I have had to do this a couple of times. If you fear it will hurt your wife’s care, you can always do it anonymously. They really do need to know how slack this office is run.
I just brought a whole thread on spinal fluid/Lumbar Puncture to the top for you to check. Don't mean to add to your burden, but it is always best to have all the information possible before making such decisions.
Guy, do you know exactly what the doctor is looking for? Because if you don't, then it would be hard to arrange for someone else to do the test. Or he may be planning on using an experimental technique not available elsewhere.
People involved in research can be very distracted by everything that they have going on. Neuro's are especially bad. It's a pain, I know, but please don't bust anything. Sometimes you do just have to keep pestering the life out of them. Consider it a challenge that requires a little ingenuity.
If you have email or a fax number for the doctor, contact the doctor directly and tell him what's going on. Or perhaps you can locate the Chair of the department or someone else "higher up", and explain, pleasantly and politely, that you are getting lost in the cracks and would sincerely appreciate some help.
best of luck guy. If your wife is anything like my husband... do yourself a favor and don't tell her about it until you have to on Friday. Let us know how it goes.
It's going to be rough for my wife as she just hates all of this. I am SO concerned that her stress levels don't go through the roof. Or mine! She was always the strong one, and I was always.. uh... not! I'm doing the best I can, but it is going to be a bit hairy or more then one front.
It's just that the family really believes that NOW that we have the LP, we'll know for sure! I don't want to contradict them, and I guess they are hoping against all hope. The thing is, I think that they may not think I'm doing all that I can and that just feeds into my own feelings of not doing the best I can. I just don't know... everyday is different and it is a real struggle just to breath and think clearly. Today is very hard, I worked late last night, and I've got a busy day today. FYI, I work in the IT field so I can work at home some days (like today), but going back and forth between work and care makes me dizzy sometimes. I wish I could go on, but I gotta get some more stuff done. I'll let you all know how it goes and I can't thank you enough for the support!!!!
Guy, considering your wifes stress levels maybe you could get her something now to give her to calm her down some til friday? it may make a difference in how she copes and will make the testing and getting to the appt less for you as well. ativan works well if she can tolerate it, my DH has a few pills for special ocassions like ER visits and it makes him smiley and so easy to manage. the anxiety til its over is hard esp if both of you are suffering. take care, and let us know..divvi
no-guy= ativan is rx only. your dr can get you a few pills but ask him if she can take this -you know most aggitation sedative type rx med produce some side effects. luckily this one has been great for my dh it makes him dreamy and smiley-:VERY minimum dose too-)but some here havent had as good results. just ask though i think you should insist she have something to calm her down if possible. divvi
Ok Divi… will do. We spoke about this morning and she is in that 'state' of anticipatory anxiety.
I told her I would go through the whole process with her and be by her side. She then told me to not talk about it anymore. So I stopped, but told her if she wants to talk about to me at anytime, that I will be there for her.
She was never like this. Always out before the crack of dawn to get any tests the doctor wanted her or me to have. Pray for me to be strong for her!!
MANY here will be praying for you as well as everyone else who needs the power of prayer. stay strong you have all of us like the verizon commercial in your wings:) divvi
Guy, i checked the rx for ativan for DH and its the generic lorazepam .5mg. they gave the .5mg to DH in ER and he was 'dreamy' for a whole day, so take heed, dr said only HALF of the .5mg and this is what i give now. of course, this depends if her dr says she can have anything and if she has to participate in the tests or can be 'quietly' restful.:) the pill is sooo tiny and half of it looks insignificant but wow its powerful. maybe even a half of a half if you start and you can always add the other half if needed. just thought i should tell you. divvi then again they may not want her to have anything..
My wife had her Lumbar Puncture yesterday. Twice!?
We were up and out at about 6am to drive into the city. We arrived 30 minutes before the 9am time to have the LP done. And that is no small feat when you live on Staten Island and have to drive to 168th street.
The plan was to have the Neuro do the LP in his office. He tried with her laying down in the fetal position. That didn't work. He tried again with her sitting up, and I was holding her. Nope, no luck. She was in a lot of pain with all jabbing and poking!
SO…. off to radiology where they use an X-Ray to guide them as they insert the needle to pull out the fluid. He wanted about 25 ccs. To make a long story short. That worked. She had to lay down for an hour after the procedure, which this time took about 45 minutes and went smoothly.
And the fact that I was on call for work, (I work in the IT field) was one more thing to add to my anxiety for the day. I got a few calls and was able to connect to my company's network with my laptop and trusty blackberry device using it as a tethered modem. That only happened twice throughout the day. The other times I was able to just send out emails on my blackberry to resovle a problem or answer some questions.
On the drive hope I put the front seat down so she could lay almost completely flat. We called the family to let them know we were on our way home.
We got home, and I had my wife lay down for about 4 hours as I continued to get calls for work and tried to make her as comfortable as possible.
At about 7 pm my wife was resting and I at some point just fell asleep holding her.
The day wasn't any fun, but I'm glad it is behind us. The folks at the hospital we very nice and helpful!
Glad things went as well as they did. I was thinking of you a lot yesterday. Glad you updated us. I think a lot of people don't realize that not only taking care of our spouses is a full time job, some of us have full time jobs outside the home which can be very demanding. It's the juggling act that is so tiring. I sometime feel like that man on the Ed Sullivan Show who used to spin plates on dowl rods. He kept adding and adding plates, frantically running all round to keep them spinning so they don't fall and break. Everytime someone adds a responsibility to my life, up goes another plate. It's hard to keep them spinning all the time, and good grief what a mess if one of them falls and shatters. As hard as it is keep everyone's plates spinning happily, I have found it is easier to run around than it is to clean up the aftermath of someone's broken plate.