By the time I got this you are already at your spinal. I am praying for you!!!! Dear Lord....guide the Drs hand and remove all fear and discomfort from Wendy. Let this part of her ordeal be over quickly and give the wisdom that is needed to get her the relief that she so needs and deserves!!! Lord...YOU are the great physician who knows our needs. Bring a quick resolution to this for Wendy!!!!!
I'm sure you will lay low for the day. I hope you have a plan in place to move forward very soon. I'm so sorry that this has gone on for so long. I'm glad your Dr is so great but she needs to move faster for you! As I keep saying...if only they lived 1 day in our bodies they'd think sooooo differently!
Your feedback about my apt and NL makes me feel hopeful. Glad it sounds like he listened. I'm surprised I got the tests so quickly too. I can only pray that it shows something. My fear is that since I'm not "textbook" they will dismiss it. I will have to make sure I am up all day and feeling sx big time before going into that tube. Feel like I lay down and it doesnt' show. As for the neuro exams....so frustrating. How can we feel like such crap and pass the exams?? I wonder if he considers me passing. The loss of balance seemed new to me. There were a couple other reflexes that he seemed to really have to try to get. Wish I knew more about what each tests to know if I passed. Interesting that a chiari neuro is different. Why aren't there more chiari specialists!!! ugh
I'm glad he didn't get all arrogant on me when I informed him.....I just find it hysterical that we know more than they do. REALLY??? I actually found a great sx checklist that TCI makes pts complete which I did. Of course they never wanna look at stuff you bring and just wanna have a conversation but I think it's important so I am actually gonna drop off a packet with that and my previous MRI reports....and info explaining what a basilar invagination is (hee...hee...I was right!) I included a letter and did ask him to order the CINE-MRI since I'm having the MRI anyway. I'm so afraid my insurance will start denying tests that I actually need so I hope he gets my letter/packet before tomorrow!
I am thinking about you. Hope the rest of your day is restful!
Your encouragement and compassion mean so much to me. I read your post when I got home yesterday but I wanted to answer when I felt better. It's over so I am relieved but it was not a good experience. I'd never had a Spinal Tap before so I have nothing to compair it to. Basically I was a training tool.They had a doctor come and explain it to my husband and I and then she walked me in the room and my husband had to stay outside because they used an xray machine several times. She got me situated on the table face down and told me not to move and then 3 other women "doctors" came in the room. There was NO walking me through what they were doing when they were doing it. It was very quite and they were very quite because I didn't know until about 20 minutes in that the doctor wasn't doing it. It was a student doctor who had never done it before and they never told me. Their energy was spent walking her through it. I didn't mind at first because I thought that they were just taking it very seriously because it's a serious proceedure and a lot could go wrong. Well it took around 1/2 an hour of poking around to find "the pocket" of fluid. They kept having to start over and I have 5 needle holes (only one punctured the pocket of spinal fluid) but she kept hitting bone. It was less painful than I expected but more painful than it had to be because she hit the bone so many times and it took so long. They had to stop in the middle and renumb me because it was wearing off.The nurse came in saw what was happening and brought the Attending in but by that time they "Hit the pocket" They drained the fluid and then I had to go to recovery and lay flat for an hour.
The only thing they said was that I was "A trooper for suffering through that". No bedside manner or kindness at all.I have a bruise the size of a silver dollar and my lower back is very sore. Now that it's sealed up I am going to put on some cream I have to help it heal.I didn't get a headache from it, they didn't hit a nerve and it's over so I'm happy.
I have always had a fear of putting a needle in my spine. I had 2 babies natural childbirth because I was so scared of the epidural. Did I say that before? I'm sorry if I'm repeating I'm very foggy. I didn't sleep much.
So now it's your turn for tests today.That's awesome you dropped off the information. Love it! I hope it's okay and that he adds on the Cine but if he doesn't at least your getting the brain MRI and the CT angiogram. I begged my last nl for a full spine and a Cine for over 5 years and she never did it. So I say that your research knowledge and tenacity paid off. It is such a shame that we know more than the people who study and work in the field. My new ns is the only person I have ever spoken to that knew more about Chiari than I did. It blew me away. It's like you have been speaking English all these years to people who speak Russian and then all of a sudden someone is speaking English back to you. I want that experience for you.
I'll be thinking about you today and I am praying for you. The people in imaging are usually really nice and happy to help and answer questions. Let me know how you make out when your okay to do so. Thank you so much for your support and friendship.
Wendy
Di said:
Hi Wendy
By the time I got this you are already at your spinal. I am praying for you!!!! Dear Lord....guide the Drs hand and remove all fear and discomfort from Wendy. Let this part of her ordeal be over quickly and give the wisdom that is needed to get her the relief that she so needs and deserves!!! Lord...YOU are the great physician who knows our needs. Bring a quick resolution to this for Wendy!!!!!
I'm sure you will lay low for the day. I hope you have a plan in place to move forward very soon. I'm so sorry that this has gone on for so long. I'm glad your Dr is so great but she needs to move faster for you! As I keep saying...if only they lived 1 day in our bodies they'd think sooooo differently!
Your feedback about my apt and NL makes me feel hopeful. Glad it sounds like he listened. I'm surprised I got the tests so quickly too. I can only pray that it shows something. My fear is that since I'm not "textbook" they will dismiss it. I will have to make sure I am up all day and feeling sx big time before going into that tube. Feel like I lay down and it doesnt' show. As for the neuro exams....so frustrating. How can we feel like such crap and pass the exams?? I wonder if he considers me passing. The loss of balance seemed new to me. There were a couple other reflexes that he seemed to really have to try to get. Wish I knew more about what each tests to know if I passed. Interesting that a chiari neuro is different. Why aren't there more chiari specialists!!! ugh
I'm glad he didn't get all arrogant on me when I informed him.....I just find it hysterical that we know more than they do. REALLY??? I actually found a great sx checklist that TCI makes pts complete which I did. Of course they never wanna look at stuff you bring and just wanna have a conversation but I think it's important so I am actually gonna drop off a packet with that and my previous MRI reports....and info explaining what a basilar invagination is (hee...hee...I was right!) I included a letter and did ask him to order the CINE-MRI since I'm having the MRI anyway. I'm so afraid my insurance will start denying tests that I actually need so I hope he gets my letter/packet before tomorrow!
I am thinking about you. Hope the rest of your day is restful!
I have been thinking about you SO much...I'm so happy to hear from you...but so disgusted to hear what they put you through. Come on.....a student Dr doing something so serious and on a patient that is petrified of the procedure to begin with. That is JUST AWFUL! You should write them a nasty letter. Drs need to undergo these tests to know what it's like to be a patient. That is just unacceptable. I'm glad it's over with and that you didn't experience the headache but the emotional anguish can never be erased. What exactly are they looking for with this test? Do you have a f/u with your NS soon? I sure hope she schedules your surgery soon.
Today is my day. I have been praying nonstop that they see something so startling that they wonder how the heck I've walked around!!! If it shows nothing I will sob. There has got to be explanations for these awful sx. I still think the laying down part impacts things if I'm not "textbook" but last night while putting my daughter to bed I sorta experimented with how I need to put my neck b/c tilting my head up just a bit totally brought it all on...that is why I think my c2 dens pokes into my brainstem! It caused that awful pressure feeling and all my limbs went spastic. I felt so ill and ended up going right to bed. I think my CSF gets obstructed. I started having pulsation at the base of my skull and the base of my spine. It's weird. I will be sure to do that today. It better show. I do pray that the Dr got my packet yesterday (I only wrote URGENT all over the front of the envelope) but I also pray that he wasn't totally insulted by me providing him with information on all of this to prove I was right. Just hope he orders the cine....if it's just a matter of adding a pulse ox seems simple enough....why make me have to do it at a later date. But then again....we seem to think logically...Drs do not!
If I don't get anywhere I may just look to see if your NS is in my insurance plan. I need someone that is gonna listen, believe me and do whatever it takes to do the tests to show what's going on.
My apt is at 1. Gonna try to move around and be as upright as I can before that. I will keep you posted. I don't suppose even if they do find chiari or CSF obstruction that they contact you immediately right? Hoping they would if my bone is poking into my brain!!!
So glad to hear from you. Have a restful day...I'm sure it'll take some time for your body to recoup from the spinal. I'm so that that we connected
Good luck with your MRIs. Let us know how it goes!
I think the doctor will have to order the CINE separately. From the patient perspective it is just like a regular MRI except for them monitoring your pulse however the actual MRI machine has to be programmed differently. It is programmed to take scans in time with your heartbeat. In my case my local hospital where I had my first 2 MRIs couldn't even do the CINE. I had to go to a bigger hospital an hour away!
I've been thinking about you. Hope it went well. I sent you a message on your page.
Wendy
Di said:
Hi Wendy,
I have been thinking about you SO much...I'm so happy to hear from you...but so disgusted to hear what they put you through. Come on.....a student Dr doing something so serious and on a patient that is petrified of the procedure to begin with. That is JUST AWFUL! You should write them a nasty letter. Drs need to undergo these tests to know what it's like to be a patient. That is just unacceptable. I'm glad it's over with and that you didn't experience the headache but the emotional anguish can never be erased. What exactly are they looking for with this test? Do you have a f/u with your NS soon? I sure hope she schedules your surgery soon.
Today is my day. I have been praying nonstop that they see something so startling that they wonder how the heck I've walked around!!! If it shows nothing I will sob. There has got to be explanations for these awful sx. I still think the laying down part impacts things if I'm not "textbook" but last night while putting my daughter to bed I sorta experimented with how I need to put my neck b/c tilting my head up just a bit totally brought it all on...that is why I think my c2 dens pokes into my brainstem! It caused that awful pressure feeling and all my limbs went spastic. I felt so ill and ended up going right to bed. I think my CSF gets obstructed. I started having pulsation at the base of my skull and the base of my spine. It's weird. I will be sure to do that today. It better show. I do pray that the Dr got my packet yesterday (I only wrote URGENT all over the front of the envelope) but I also pray that he wasn't totally insulted by me providing him with information on all of this to prove I was right. Just hope he orders the cine....if it's just a matter of adding a pulse ox seems simple enough....why make me have to do it at a later date. But then again....we seem to think logically...Drs do not!
If I don't get anywhere I may just look to see if your NS is in my insurance plan. I need someone that is gonna listen, believe me and do whatever it takes to do the tests to show what's going on.
My apt is at 1. Gonna try to move around and be as upright as I can before that. I will keep you posted. I don't suppose even if they do find chiari or CSF obstruction that they contact you immediately right? Hoping they would if my bone is poking into my brain!!!
So glad to hear from you. Have a restful day...I'm sure it'll take some time for your body to recoup from the spinal. I'm so that that we connected
Well, the tests are done. Only took 4 sticks to get the IV in for the CT angio. It was a bit hard to tilt my head back as much as I would've liked b/c they put your head in that crate type holder but I still felt a bit "off" so it better show something. Then the MRI - at one point the tech stopped and said "you seem to be moving a lot are you ok?" I told her that I was twitching all over b/c this is what happens when my spinal cord is compressed...that's why I was having the test. Glad something happened that was abnormal! Again could't really tilt head back as much as I wanted. When it was done she said she didn't see anything stand out that made her have to call the radiologist to get contrast approved....so I said "that's the problem nothing is ever wrong" but she jumped in and said "I didn't say nothing was wrong" Hate it when they make comments b/c I try to read into it. I got 2 copies of the tests on CD - will mail one to the NS at Tufts so that maybe he'll see me. Have a f/u with an Orthopaedic Surg next week - was holding off as to whether I"ll even see him. No clue who I'm supposed to see and for what! Way too much in that area of our body to know what is causing what. Oh...and no CINE added so either he didn't get my packet or I really pissed him off!! haha....but now that you explain that the machine has to be programmed differently maybe that is why
All I know is I want the neuro sx to STOP! However they need to make that happen!
Well gonna rest a bit before my kids come home. Hope you're doing well
I just attempted to look at the brain MRI...not that I really know what I'm looking at but am thinking that c2 could most definitely be puncturing into brainstem. Don't see a huge chiari...if anything it'd be more like a crowding in that area...which I've read can be worse. If anything let's hope they just have to shave down c2 and fuse my skull! Not that that really sounds fun either......Uggghhh...just want answers