Since the last blood patch things have been better. I get longer periods of time being up without pain. What I really want to do it push it as far as I can and see how bad the headache gets. Unfortunately, my doctors (and Mere) keep reminding me that is not good for healing. It is getting harder and harder to tell if the headache is spinal or secondary to the blood patch. After talking to Dr. VH I found out this is good. The blood that they put in my neck is an irritant and my spinal cord should be compressed (just a little) which will cause some pain. Hopefully, this means the dura is healing. The overall idea is that the blood clot irritates the dura and encourages healing. The result is that I have mild headaches and neck pain most of the time, making it harder to interpret what is really happening!! The big picture: I feel better since the last patch and am really hopeful. This time last week things were looking so much yuckier.
The good news is that we have a plan (more on that in a minute) and I feel better. The bad news is that I'm still on bed rest and driving is still off limits. Now for the plan:
--Tomorrow morning I'm getting another cervical blood patch, this time they are going to aim towards the left side. It will be followed by 24 hours of not flexing my neck and staying in bed except for bathroom breaks. Then some more bed rest like what I'm used to (showering, getting up for little bits of time, etc) for a week.
--If the next blood patch doesn't work, then another myelogram to assess the anterior tears (the tears are anterior and posterior). That will be followed by some anterior blood patches where they actually go through my spinal column to get to the anterior position. I have to admit that sounds a little scary but not as scary as surgery.
--If that does not work, then we do fibrin glue injections. We are all still not 100% sure how this will work. We are hoping that the surgeon in LA will do some consultations over the phone.
--If after all of the above the headaches aren't better, then they are going to shoot me. Seriously, at this point we will go to LA for surgery.
Regardless of where I am, I am hoping to go back to work in December on very light duty. Truthfully, I'm hoping this patch works and I can go back to full duty in December. Right now the question is can I take a Thanksgiving call at the VA? Dr. VH's initial reaction was probably not. But, then I explained that it is only rounding (2-3 hrs or so) and no beeper call at night or after I leave the hospital so I could come home and rest all day. He wants me to wait and see how this patch works and reassess on Monday but even if I'm not 100% better he is not ruling out the possibility of letting me test drive my patches over Thanksgiving, Am I excited about the potential of being on call? YES. Does that make me question my sanity? Hell, yes.
Things I'm going to do when I get better:
--Go back to work. I miss working. Weird.
--Get more patients recruited for my study (I was procrastinating on this before I got leaky)
--Dance more. I even have this delusional idea of maybe taking a ballroom dancing class. I'm thinking that will pass when D.ancing with the Stars is done.
--Ride bikes with the family (even if it is to cold)
--Run (if I can). If not, then spin!
--Moonlight less (this one will be hard) so I can give some time to the free clinic that I have been credentialed at for a year but have yet to work one shift.
--Go grocery shopping. Mere said that most the of K.rogers they have been remodeling are done. I'm not sure why I'm excited to see the remodels but I am.
--Cook. Anything.
--Go to a game and watch Syd cheer!!
--DRIVE. By myself. Windows down, radio up.
--Get a little more involved in our church. Maybe go back to doing some volunteering at community breakfast. This ties into the whole moonlight less idea.
--Did I mention dancing?
Wednesday, November 11, 2009
Saturday, November 7, 2009
And, you are?
This update will be brief because I am laying flat with a neck brace which doesn't make for the easiest typing. This time around I really am 100% confined to the bed for 24-48 hours. Mere has been great, she is constantly checking on me and being super sweet. The girls are popping there heads in occasionally but are mostly keeping themselves entertained. Every time the come near me, Mere says, "be careful, be gentle, be still." I think poor Layne is afraid to move around me. Yesterday I had terrible nausea but today I feel much better.
We checked in yesterday at 7am ready to go. After some confusion (which is now expected) they got me settled into a room. The nurse was so sweet. It took her awhile to get an IV and she was obviously stressed out about it. At this point in the game, IV sticks are nothing. She eventually got it and they started to fluids. We also had to go through the whole are you pregnant stuff. No, I am not. How do I know? I'm a lesbian. Yes, I will sign a waiver. I'm not complaining everyone is just doing their job. It is like the movie Groundhog Day, the same conversations every time. In the middle of all the preparations a resident walked into the room. She didn't look at me (or Mere or the nurse), she didn't say who she was with, she just walked over to my chart and grabbed a sticker. Then she said something about marking me. That's when I said, "who are you with?" "I'm with vascular surgery." Oops! I think you are in the wrong room. Through this whole interaction she still never looked at me. I know she was busy checking off things to do in her head, taking time to pay attention to her surroundings was not important.
A few minutes later one of the interventional neuroradiology nurses came to get me. I can't remember his name but he was really cute. He took me back to the previously mentioned scary room with LOTS of equipment. It wasn't so scary this time. They got me on the table (face down) with my gown wide open in the back. It was FREEZING in the room. The heart monitor kept showing V tach (a bad rhythm that results in people getting shocked) because I was shivering. I made the nurse promise not to shock me! While I was on the table, multiple people came in to talk to me. Some of them I had seen before and others I didn't recognize. NONE of them introduced themselves. The doctoring lesson for the day: ALWAYS introduce yourself and say who you are with. This is basic 1st year medical school stuff that I have NOT done a million times. You get busy and in your head and you just forget. Who knew it was so important?
Dr. E (the interventional neuroradiologist who is HANDSOME) came in the room and started draping me. The drape was over my head but I didn't care......I had fentanyl and versed on board....bring it! The procedure went well. Sedation helps so much. After a brief time in recovery I was released home. I spent the day half awake in bed trying not to vomit. Dr. VH (my person hero) called later in the day. He told me that the procedure went well and he felt really optimistic. He thinks I might have to have a few more blood patches and will continue bed rest for awhile. BUT, he was hopeful. Yeah!!!!!!
I won't know if it worked until I can get up for awhile. I'm told I get to shower tomorrow so that will be a test drive. Thanks for all the prayers, kind words, and awesome vibes.
We checked in yesterday at 7am ready to go. After some confusion (which is now expected) they got me settled into a room. The nurse was so sweet. It took her awhile to get an IV and she was obviously stressed out about it. At this point in the game, IV sticks are nothing. She eventually got it and they started to fluids. We also had to go through the whole are you pregnant stuff. No, I am not. How do I know? I'm a lesbian. Yes, I will sign a waiver. I'm not complaining everyone is just doing their job. It is like the movie Groundhog Day, the same conversations every time. In the middle of all the preparations a resident walked into the room. She didn't look at me (or Mere or the nurse), she didn't say who she was with, she just walked over to my chart and grabbed a sticker. Then she said something about marking me. That's when I said, "who are you with?" "I'm with vascular surgery." Oops! I think you are in the wrong room. Through this whole interaction she still never looked at me. I know she was busy checking off things to do in her head, taking time to pay attention to her surroundings was not important.
A few minutes later one of the interventional neuroradiology nurses came to get me. I can't remember his name but he was really cute. He took me back to the previously mentioned scary room with LOTS of equipment. It wasn't so scary this time. They got me on the table (face down) with my gown wide open in the back. It was FREEZING in the room. The heart monitor kept showing V tach (a bad rhythm that results in people getting shocked) because I was shivering. I made the nurse promise not to shock me! While I was on the table, multiple people came in to talk to me. Some of them I had seen before and others I didn't recognize. NONE of them introduced themselves. The doctoring lesson for the day: ALWAYS introduce yourself and say who you are with. This is basic 1st year medical school stuff that I have NOT done a million times. You get busy and in your head and you just forget. Who knew it was so important?
Dr. E (the interventional neuroradiologist who is HANDSOME) came in the room and started draping me. The drape was over my head but I didn't care......I had fentanyl and versed on board....bring it! The procedure went well. Sedation helps so much. After a brief time in recovery I was released home. I spent the day half awake in bed trying not to vomit. Dr. VH (my person hero) called later in the day. He told me that the procedure went well and he felt really optimistic. He thinks I might have to have a few more blood patches and will continue bed rest for awhile. BUT, he was hopeful. Yeah!!!!!!
I won't know if it worked until I can get up for awhile. I'm told I get to shower tomorrow so that will be a test drive. Thanks for all the prayers, kind words, and awesome vibes.
Thursday, November 5, 2009
Update (a LONG one)
As I write this update I am alone on the sofa, listening to Michael Jackson, and feeling kinda good. That could change in a minute...who knows? But right now I am peaceful and hopeful. At least for the next few hours I'm untouchable (or at least that is what I tell myself). Before she left, Mere said, "put an update on your blog and put it ALL there so we won't forget this." Hmmm. Hefty assignment. The last few weeks (and especially days) have been a roller coaster filled with fear, love, gratitude, more fear, and more faith than I thought possible. I have become raw and tearful. I cry all the time now....happy, sad, scared, grateful...it doesn't matter they are all met with tears. I never know when I'm going to spring a leak (pun intended).
God, I love Michael Jackson.....I'm going to do so much dancing when this is over!!!
So, the last blood patch didn't do anything. No help at all. The MRI wasn't particularly helpful. On Oct 29th my vacation/sick time ran out and as a fellow we don't have short term disability. Things were looking grim. Mere and I were fighting, mostly because I was attempting to make everyone around me as miserable as I had become. Thankfully, a friend told me to quit feeling sorry for myself and start looking for solutions. Up to this point I just kept thinking that my doctors would figure this out and that the end was just around the corner. I didn't want to be one of those crazy, internet obsessed patients who always thinks that go.ogle is the answer to everything. I ended up on Pub.Med doing searches for intracranial hypotension. I scanned all of the publications for the name that appeared the most. There were 2, a neurosurgeon at Ced.ars S.inai in LA and a neurologist at the M.ayo Clinic in Minnesota. I found a message board with a lot of people who had great things to say about Dr. S in LA. Sunday night I emailed Dr. S and I drafted and email to my team of doctors at U.AMS (my primary care doctor, the anethesiologist, the neuroradiologist, and the neurologist) asking them to all sit down together, discuss my case, and come up with a plan. By 1pm the next day, Dr. S's nurse at Ced.ars S.inai called me and told me what information they needed and how to get it to him. Dr. S had also responded to my personal email and mentioned doing a subtraction myelogram (something no one here had done or mentioned). I called Dr. VH (neuroradiologist) and asked him about the subtraction myelogram. Being the awesome doctor that he is, he started to investigate the possibility immediately. They weren't done at U.AMS but he thought he might be able to do it. He also told me that everyone was meeting the next day to discuss my case.
By 2pm the next day my PCP (and good friend) called to tell me the results of the meeting that all my doctors had earlier that morning. The news was mixed. I could hear the fear and hesitation in her voice. I guess that is the only downside of being good friends with your doctor. She said, "I'm going to level with you." Uhmmm....OK. The key was still in localizing the leak. Dr. VH had devised a plan to do a subtraction myelogram the following morning. The main issue with the subtraction myelogram is that it only visualizes the cervical spine. If it was positive, then we would have some direction, but a negative test would still leave us with more questions then answers. She said, "if the leak is cervical we can try one more blood patch, then surgery. The surgery would be no walk in the park, but it is do-able. We will have to discuss it with the neurosurgeon at U.AMS but they can probably do it here. If you want to go to LA, then we will refer you there and you can have it there. Whatever you want." OK. Then the bomb. She said, "if the leak is thoracic, then this is major. The surgery has a 20-30% mortality rate, the recovery is long, and it can't be done here. They will have to collapse your lungs, you will be in intensive care for a few days, and you might not survive it. It is a big deal. Jessica, listen to me. You have to stay strong, healthy, and together. You have to sleep. You have to eat healthy. I'm going to be with you through this but you cannot fall apart, you just can't. You can't get depressed. You have to be strong. You can't get depressed. We need to keep your immune system in check. I will be with you every step of the way." We talked for a few more minutes and I was given instructions on where to be the next day for the subtraction myelogram.
Thankfully, Mere and T (a very close friend and advisor) were here when she called. I don't entirely remember the conversation that followed. Needless to say, we were all in shock (at least I was). I wanted to disappear, which is what I always want to do in times of stress. I just wanted to crawl in a hole and go into complete shutdown mode. I wanted to drink (a lot), take as many pills as I could find, and sleep for as long as I could. We didn't sign up for this. When this started I was just worried about the financial implications of being out of commission for a month. Now we were talking major surgery in another city with a high mortality rate. What!!!???? About a hour later, the neurologist called. He went on to tell me that if I was his daughter he would try to do everything to avoid surgery if the tear was thoracic. One option (he said) was to put a shunt in my back and drain the CSF (to give the dura time to heal) while I was on 100% complete bed rest (like foley catheter, sponge bath kind of bed rest). Of course, I would need heavy painkillers because the low pressure caused by the CSF shunt would be very painful. Oh yeah, the bed rest could be several months in duration. Talk about options! Risky surgery vs painful, strict bed rest. I'm thinking after a few weeks of that kind of bed rest I would be ready to take a gun to my head, if Mere didn't beat me to it! Ughhh! That was a long day (night). That night there were some very tender moments with Mere and T that will forever be etched in my heart. It is rare to get to a place where there are ZERO walls between people and I'm not sure I've had ever been there before that night. It makes you feel scared and naked and raw. But, I also felt so safe and loved. I have never asked anyone to pray with me, that night I did. I wanted to disappear, but the people I love wouldn't let me. They kept me here, grounded, and grateful.
The next morning we were up bright and early at U.AMS. I walked into the room (my first time in THIS procedure room) and there were huge machines everywhere. Of course, I started crying immediately because that is what I do now. Not to mention there were at least 20 people in the room (a lot of them doctors) and nervous energy. You never want to be the patient that doctors from the entire department come to see. You don't want to be the recipient of a novel technique or "cool" new therapy. These are not the ways in which one wants to get attention. Dr. VH walked into the room and a huge wave of relief washed over me. I'm telling you, when this is over I am going to do something so special for him (if you have any great ideas, let me know). Dr. VH put me in a totally crazy position on the table (face down, neck flexed, arms up) and injected dye into my spinal cord (at the level of my neck just below my ear). Then machines were circling around me for about 20 minutes. Then I was allowed to roll over on my back and "relax" while they all looked at the images. What do you think I did? Yep, just cried and cried. I wasn't in any pain. Actually, the neck stick was WAY better then being stuck in the back which I would have NEVER believed. One of the residents walked over and I asked, "did you find it?" She said, "I think so, but don't get excited yet." A few minutes later, Dr. VH came over and said that he felt like it was in C6/C7/T1/T2 but that he would need at least a day to reconstruct all the images to be sure.
They released me home back to my couch to wait. In the meantime, Dr. S's nurse from LA called to let me know they had received my films (I am still waiting to hear more from him). I got a call about 1pm today from Dr. VH that he felt pretty certain we were looking at multiple tears in C6/C7/T1, anterior and posterior. He has talked to the interventional neuroradiologist and the plan is for an anterior cervical blood patch. So, at 7am tomorrow I get a new procedure and a new doctor. This time I will be sedated (there is always something to be grateful for). Dr. VH is collecting all of the images from the subtraction myelogram so we can get them to LA ASAP.
I am learning that asking about the next step rarely produces concrete answers. If this doesn't work (and it will take a few days to know if it will work), then we will likely end up in LA. But, NOTHING is set in stone right now. I don't know what is coming next. When you think about it, none of us really knows....we just think we do.
There are so many things I am learning. I know that we have the best friends/family in the world (yes, I'm sure you do to). We have had meals here every night this week, the phone is always ringing, and the girls have a wealth of places to go while we are at the hospital. The most amazing thing? We don't even have to ask. It's just done. It just is.
Mere and I are closer by the minute. I have always known she is my soulmate but her strength and beauty through all of this makes me fall in love with her over and over and over again. We have held each other, cried, laughed, screamed, and everything in between. The point is that we are always safe with each other. At the end of the day, she is who I want when I wake up and there has been a lot of waking up over the last year. When she is here, it is ok. No one deserves what we have, we are just so lucky.
I am so grateful for my girls. They just make it all good. How bad can a day really be when Laynie smiles at you? Just before this happened Syd had started sleeping in her own bed. Suprise! She is back in our bed. She sleeps curled up next to me all night and keeps me warm and happy. There is no other place I would rather be. Layne is always asking me if I feel better. We have had time together that we never would have had. Hours on the sofa reading books and telling stories.
I've never thought of myself as a very spiritual or religious person but that is changing fast. I pray all the time. When I am all alone....I'm not. I believe there is something bigger than me at work here and I have to trust in it. Before any of this happened I had memorized a few prayers (at the suggestion of T). At the time I thought it was kind of stupid. I am so thankful to have memorized them. They carry me through every procedure and test and moment of fear and doubt. They soothe me and comfort me in a way that I can't describe.
I'm not sure what is coming next but I know it is going to be ok. Whatever the outcome, it will be fine.
God, I love Michael Jackson.....I'm going to do so much dancing when this is over!!!
So, the last blood patch didn't do anything. No help at all. The MRI wasn't particularly helpful. On Oct 29th my vacation/sick time ran out and as a fellow we don't have short term disability. Things were looking grim. Mere and I were fighting, mostly because I was attempting to make everyone around me as miserable as I had become. Thankfully, a friend told me to quit feeling sorry for myself and start looking for solutions. Up to this point I just kept thinking that my doctors would figure this out and that the end was just around the corner. I didn't want to be one of those crazy, internet obsessed patients who always thinks that go.ogle is the answer to everything. I ended up on Pub.Med doing searches for intracranial hypotension. I scanned all of the publications for the name that appeared the most. There were 2, a neurosurgeon at Ced.ars S.inai in LA and a neurologist at the M.ayo Clinic in Minnesota. I found a message board with a lot of people who had great things to say about Dr. S in LA. Sunday night I emailed Dr. S and I drafted and email to my team of doctors at U.AMS (my primary care doctor, the anethesiologist, the neuroradiologist, and the neurologist) asking them to all sit down together, discuss my case, and come up with a plan. By 1pm the next day, Dr. S's nurse at Ced.ars S.inai called me and told me what information they needed and how to get it to him. Dr. S had also responded to my personal email and mentioned doing a subtraction myelogram (something no one here had done or mentioned). I called Dr. VH (neuroradiologist) and asked him about the subtraction myelogram. Being the awesome doctor that he is, he started to investigate the possibility immediately. They weren't done at U.AMS but he thought he might be able to do it. He also told me that everyone was meeting the next day to discuss my case.
By 2pm the next day my PCP (and good friend) called to tell me the results of the meeting that all my doctors had earlier that morning. The news was mixed. I could hear the fear and hesitation in her voice. I guess that is the only downside of being good friends with your doctor. She said, "I'm going to level with you." Uhmmm....OK. The key was still in localizing the leak. Dr. VH had devised a plan to do a subtraction myelogram the following morning. The main issue with the subtraction myelogram is that it only visualizes the cervical spine. If it was positive, then we would have some direction, but a negative test would still leave us with more questions then answers. She said, "if the leak is cervical we can try one more blood patch, then surgery. The surgery would be no walk in the park, but it is do-able. We will have to discuss it with the neurosurgeon at U.AMS but they can probably do it here. If you want to go to LA, then we will refer you there and you can have it there. Whatever you want." OK. Then the bomb. She said, "if the leak is thoracic, then this is major. The surgery has a 20-30% mortality rate, the recovery is long, and it can't be done here. They will have to collapse your lungs, you will be in intensive care for a few days, and you might not survive it. It is a big deal. Jessica, listen to me. You have to stay strong, healthy, and together. You have to sleep. You have to eat healthy. I'm going to be with you through this but you cannot fall apart, you just can't. You can't get depressed. You have to be strong. You can't get depressed. We need to keep your immune system in check. I will be with you every step of the way." We talked for a few more minutes and I was given instructions on where to be the next day for the subtraction myelogram.
Thankfully, Mere and T (a very close friend and advisor) were here when she called. I don't entirely remember the conversation that followed. Needless to say, we were all in shock (at least I was). I wanted to disappear, which is what I always want to do in times of stress. I just wanted to crawl in a hole and go into complete shutdown mode. I wanted to drink (a lot), take as many pills as I could find, and sleep for as long as I could. We didn't sign up for this. When this started I was just worried about the financial implications of being out of commission for a month. Now we were talking major surgery in another city with a high mortality rate. What!!!???? About a hour later, the neurologist called. He went on to tell me that if I was his daughter he would try to do everything to avoid surgery if the tear was thoracic. One option (he said) was to put a shunt in my back and drain the CSF (to give the dura time to heal) while I was on 100% complete bed rest (like foley catheter, sponge bath kind of bed rest). Of course, I would need heavy painkillers because the low pressure caused by the CSF shunt would be very painful. Oh yeah, the bed rest could be several months in duration. Talk about options! Risky surgery vs painful, strict bed rest. I'm thinking after a few weeks of that kind of bed rest I would be ready to take a gun to my head, if Mere didn't beat me to it! Ughhh! That was a long day (night). That night there were some very tender moments with Mere and T that will forever be etched in my heart. It is rare to get to a place where there are ZERO walls between people and I'm not sure I've had ever been there before that night. It makes you feel scared and naked and raw. But, I also felt so safe and loved. I have never asked anyone to pray with me, that night I did. I wanted to disappear, but the people I love wouldn't let me. They kept me here, grounded, and grateful.
The next morning we were up bright and early at U.AMS. I walked into the room (my first time in THIS procedure room) and there were huge machines everywhere. Of course, I started crying immediately because that is what I do now. Not to mention there were at least 20 people in the room (a lot of them doctors) and nervous energy. You never want to be the patient that doctors from the entire department come to see. You don't want to be the recipient of a novel technique or "cool" new therapy. These are not the ways in which one wants to get attention. Dr. VH walked into the room and a huge wave of relief washed over me. I'm telling you, when this is over I am going to do something so special for him (if you have any great ideas, let me know). Dr. VH put me in a totally crazy position on the table (face down, neck flexed, arms up) and injected dye into my spinal cord (at the level of my neck just below my ear). Then machines were circling around me for about 20 minutes. Then I was allowed to roll over on my back and "relax" while they all looked at the images. What do you think I did? Yep, just cried and cried. I wasn't in any pain. Actually, the neck stick was WAY better then being stuck in the back which I would have NEVER believed. One of the residents walked over and I asked, "did you find it?" She said, "I think so, but don't get excited yet." A few minutes later, Dr. VH came over and said that he felt like it was in C6/C7/T1/T2 but that he would need at least a day to reconstruct all the images to be sure.
They released me home back to my couch to wait. In the meantime, Dr. S's nurse from LA called to let me know they had received my films (I am still waiting to hear more from him). I got a call about 1pm today from Dr. VH that he felt pretty certain we were looking at multiple tears in C6/C7/T1, anterior and posterior. He has talked to the interventional neuroradiologist and the plan is for an anterior cervical blood patch. So, at 7am tomorrow I get a new procedure and a new doctor. This time I will be sedated (there is always something to be grateful for). Dr. VH is collecting all of the images from the subtraction myelogram so we can get them to LA ASAP.
I am learning that asking about the next step rarely produces concrete answers. If this doesn't work (and it will take a few days to know if it will work), then we will likely end up in LA. But, NOTHING is set in stone right now. I don't know what is coming next. When you think about it, none of us really knows....we just think we do.
There are so many things I am learning. I know that we have the best friends/family in the world (yes, I'm sure you do to). We have had meals here every night this week, the phone is always ringing, and the girls have a wealth of places to go while we are at the hospital. The most amazing thing? We don't even have to ask. It's just done. It just is.
Mere and I are closer by the minute. I have always known she is my soulmate but her strength and beauty through all of this makes me fall in love with her over and over and over again. We have held each other, cried, laughed, screamed, and everything in between. The point is that we are always safe with each other. At the end of the day, she is who I want when I wake up and there has been a lot of waking up over the last year. When she is here, it is ok. No one deserves what we have, we are just so lucky.
I am so grateful for my girls. They just make it all good. How bad can a day really be when Laynie smiles at you? Just before this happened Syd had started sleeping in her own bed. Suprise! She is back in our bed. She sleeps curled up next to me all night and keeps me warm and happy. There is no other place I would rather be. Layne is always asking me if I feel better. We have had time together that we never would have had. Hours on the sofa reading books and telling stories.
I've never thought of myself as a very spiritual or religious person but that is changing fast. I pray all the time. When I am all alone....I'm not. I believe there is something bigger than me at work here and I have to trust in it. Before any of this happened I had memorized a few prayers (at the suggestion of T). At the time I thought it was kind of stupid. I am so thankful to have memorized them. They carry me through every procedure and test and moment of fear and doubt. They soothe me and comfort me in a way that I can't describe.
I'm not sure what is coming next but I know it is going to be ok. Whatever the outcome, it will be fine.
Wednesday, October 28, 2009
MRI or meditation machine??
So, at the end of the two weeks I was treated to another myelogram. This time Dr.VH wanted to inject the dye and get me to the scanner ASAP in hopes of better localizing the leak. The plan (funny, that word) was that we would do the myelogram and then Dr. VH would talk to Dr. G and then I would be off for blood patch #2. Bright and early Monday morning there we were....waiting. After about a hour I was finally all prepped and ready to get going. Dr. VH said, "before I stick you I want to run to the CT scanner and make sure that they have it open and ready because we are going to rush you over there." He came back a few minutes later and informed us that the scan had not been pre authorized by insurance and so I didn't even have a requisition number, they couldn't scan, etc. Shocking! Something went wrong, I don't believe it! After another hour of waiting and calls to my PCP (who has to order all this stuff and deal with the pre authorizations) I was back on the table in starting position. This myelogram was the easiest yet. Minimal pain and FAST. Off to the CT scanner.
The results? Still leaking. Better than before but still a lot of leaking. Dr. VH said he needed to go sit and reconstruct some images to try and get a better idea of where it was coming from. I was wheeled to recovery and then wheeled to preop where they started to prep me for the blood patch. IV fluids? check. Consent signed? check. Hospital gown? check. Dr. G ready? check. Then the call came from Dr. VH. His words? "I'm confused." Not something you want to hear the neuroradiologist say. Dr. VH didn't feel like he could tell them where to put the patch and felt like a spine MRI was in order before putting me through any additional procedures. They scheduled me for the MRI the following day.
I have decided, I like the MRI. There is just something about all that noise that sort of hypnotizes me. I get a lot of good praying, day dreaming, and general zen like feelings in that scanner. There wasn't even a hint of anxiety this time.....I'm an old pro! I was in the scanner for about 1 1/2 hours. Seriously, by the time I came out I felt like I had been at a retreat. Refreshed and kinda clear. See, NOTHING can get you in the MRI. It is just you and the machine. In those minutes it is really like the world stops. Ok...well...I digress.
Out of the scanner and back with Dr. VH. The news? UGhhhhhh!! Still doesn't know where the leak is coming from. He knows a few things...it is likely a large tear.....when he can localize it someone will be able to fix it....we are all so frustrated. Now we are on plan D, blood patch from C6-T4 tomorrow, followed by bedrest and a repeat myelogram on Tuesday. After that? Not sure. We are definately on a day by day plan here.
The results? Still leaking. Better than before but still a lot of leaking. Dr. VH said he needed to go sit and reconstruct some images to try and get a better idea of where it was coming from. I was wheeled to recovery and then wheeled to preop where they started to prep me for the blood patch. IV fluids? check. Consent signed? check. Hospital gown? check. Dr. G ready? check. Then the call came from Dr. VH. His words? "I'm confused." Not something you want to hear the neuroradiologist say. Dr. VH didn't feel like he could tell them where to put the patch and felt like a spine MRI was in order before putting me through any additional procedures. They scheduled me for the MRI the following day.
I have decided, I like the MRI. There is just something about all that noise that sort of hypnotizes me. I get a lot of good praying, day dreaming, and general zen like feelings in that scanner. There wasn't even a hint of anxiety this time.....I'm an old pro! I was in the scanner for about 1 1/2 hours. Seriously, by the time I came out I felt like I had been at a retreat. Refreshed and kinda clear. See, NOTHING can get you in the MRI. It is just you and the machine. In those minutes it is really like the world stops. Ok...well...I digress.
Out of the scanner and back with Dr. VH. The news? UGhhhhhh!! Still doesn't know where the leak is coming from. He knows a few things...it is likely a large tear.....when he can localize it someone will be able to fix it....we are all so frustrated. Now we are on plan D, blood patch from C6-T4 tomorrow, followed by bedrest and a repeat myelogram on Tuesday. After that? Not sure. We are definately on a day by day plan here.
The Other Side, part 3
I'm starting to think this is going to be a million part story. But, I really want to capture this whole event so I can go back to it years from now when things seem bad.
The weekend came and went. Unfortunately, Mere had her embryo transfer on Friday afternoon leaving us both on bed rest for 48 hours. Fortunately, we are blessed with an incredible network of friends and family who stepped up and took care of the girls (and us). It really is amazing how many people come out of the woodwork when the going gets rough. It made us both realize that we are at home here, this is where we belong, these are OUR people.
Monday morning came and we were back at the med center. Before they started a woman came in the room and said, "I need you to sign this paper saying that you will pay for this procedure if your insurance doesn't because we don't have preapproval on this yet." I said, "NO!" and she left. This time, Dr. VH did the stick and it was 100 million times BETTER. In fact, the stick wasn't even painful. When he ran the dye up my spine that hurt, a lot. But, it was fast and I knew it was coming. They got me through the scanner and into recovery. While I was laying there, my phone rang, it was Dr. H's office (the previously mentioned neurologist). The person on the other end was calling to inform me that insurance had approved the CT of the spine but not the brain, blah, blah, blah, blah...so on and so forth. Basically, I told her that we would have to deal with it later and that they were repeating this whole mess because Dr. H had messed up in the first place. Luckily, Dr. VH heard about all of this and put an abrupt end to it...no charge...leave her (me) alone. We were thinking that we would be there all day again for multiple scans, but no so. Dr. VH came into the room with the characteristic, "I have good news and bad news. The leak is really big. I can't tell exactly where it is but I think I can get them to the right region." Ohhhh, ok.
After a few phone calls and some more discussion the anethesiology resident showed up in recovery. She was working with Dr. G (anethesiologist) and he was going to do a blood patch. Dr. G and Dr. VH spoke and decided to put the patch in the region of T3-T7. Off to the procedure room we went. Again, I was face down on the fluoro table while Dr. G (well, his resident) guided the needle into my spine. They hit a nerve, I jumped, and they had to pull out and start at a lower position. Once they got the spot and threaded the catheter up my spine, the nurse went to draw blood from my hand. "Are you a hard stick?" she asked. "No," I said. Ok, well, at least I never knew I was a hard stick until that moment. So, I'm on my stomach with a needle in my back and my hand hanging off the table. 3 sticks with an 18 gauge needle later, they got blood. Dr. G slowly put the blood into my spinal column (a blood patch) and told me to tell him when the pressure became pain. After about 18cc's of blood, it became painful. They pulled out the needles and let me sit up, slowly. The difference was amazing. There was still some pain, but NOTHING like what I had been feeling. I could move my neck around without pain and I could sit up without feeling like my head was going to explode. No nausea, no ringing in my ears, yeah!!!! They watched me in recovery for awhile and sent me home with instructions for "taking it easy" for a few days. I went home that night and stuck mostly to the sofa. The next day, I took a shower, a LONG one. By the time I was dressed, the headache and nausea were back, so was the fear. Long story short, I was put back on strict bedrest for 2 weeks.
The weekend came and went. Unfortunately, Mere had her embryo transfer on Friday afternoon leaving us both on bed rest for 48 hours. Fortunately, we are blessed with an incredible network of friends and family who stepped up and took care of the girls (and us). It really is amazing how many people come out of the woodwork when the going gets rough. It made us both realize that we are at home here, this is where we belong, these are OUR people.
Monday morning came and we were back at the med center. Before they started a woman came in the room and said, "I need you to sign this paper saying that you will pay for this procedure if your insurance doesn't because we don't have preapproval on this yet." I said, "NO!" and she left. This time, Dr. VH did the stick and it was 100 million times BETTER. In fact, the stick wasn't even painful. When he ran the dye up my spine that hurt, a lot. But, it was fast and I knew it was coming. They got me through the scanner and into recovery. While I was laying there, my phone rang, it was Dr. H's office (the previously mentioned neurologist). The person on the other end was calling to inform me that insurance had approved the CT of the spine but not the brain, blah, blah, blah, blah...so on and so forth. Basically, I told her that we would have to deal with it later and that they were repeating this whole mess because Dr. H had messed up in the first place. Luckily, Dr. VH heard about all of this and put an abrupt end to it...no charge...leave her (me) alone. We were thinking that we would be there all day again for multiple scans, but no so. Dr. VH came into the room with the characteristic, "I have good news and bad news. The leak is really big. I can't tell exactly where it is but I think I can get them to the right region." Ohhhh, ok.
After a few phone calls and some more discussion the anethesiology resident showed up in recovery. She was working with Dr. G (anethesiologist) and he was going to do a blood patch. Dr. G and Dr. VH spoke and decided to put the patch in the region of T3-T7. Off to the procedure room we went. Again, I was face down on the fluoro table while Dr. G (well, his resident) guided the needle into my spine. They hit a nerve, I jumped, and they had to pull out and start at a lower position. Once they got the spot and threaded the catheter up my spine, the nurse went to draw blood from my hand. "Are you a hard stick?" she asked. "No," I said. Ok, well, at least I never knew I was a hard stick until that moment. So, I'm on my stomach with a needle in my back and my hand hanging off the table. 3 sticks with an 18 gauge needle later, they got blood. Dr. G slowly put the blood into my spinal column (a blood patch) and told me to tell him when the pressure became pain. After about 18cc's of blood, it became painful. They pulled out the needles and let me sit up, slowly. The difference was amazing. There was still some pain, but NOTHING like what I had been feeling. I could move my neck around without pain and I could sit up without feeling like my head was going to explode. No nausea, no ringing in my ears, yeah!!!! They watched me in recovery for awhile and sent me home with instructions for "taking it easy" for a few days. I went home that night and stuck mostly to the sofa. The next day, I took a shower, a LONG one. By the time I was dressed, the headache and nausea were back, so was the fear. Long story short, I was put back on strict bedrest for 2 weeks.
Thursday, October 22, 2009
The Other side, part 2
The next morning we were up and out, checked in at UAMS at 8am. Of course, when I got there, they had NO idea I was supposed to be there or what to do with me. I was warned that this would be the case since this had all been scheduled late the previous day. Luckily, they let me lay down while they figured it all out and got things moving. There was a lot of waiting and being wheeled from room to room. Again, I couldn't help note how scary this would be to the average patient......big, loud machines (which I have seen before) and a host of confused people.
Eventually, they figured everything out and got me prepped and ready for the myelogram. During a typical myelogram the patient lays face down while the neuroradiologist uses fluoroscopy to guide him in doing a lumbar puncture (spinal tap). Once in the correct space, he/she injects contrast dye into the spinal column, tilts the table up so that you are almost on your head (to move the dye around your spinal cord), and then puts you in the CT scanner to localize where the contrast is leaking out and find the defect. For reasons that are still unclear to all involved, Dr. H (the head of neurology and previously mentioned poor bedside manner physician) wanted to do the "stick." Instead of laying on my stomach and using fluoroscopy guidance, he wanted to do the traditional ("old school") blind stick. I would have really rather have had the neuroradiologist do it, but I didn't feel like I had a choice. No one asked me what I wanted and I certainly didn't assert myself because I didn't want to piss off anyone in charge of my care (i.e. aforementioned neurologist). It had been made clear to me by everyone involved that my case was very rare and Dr. H was the only physician around with any experience involving IIH (idiopathic intracranial hypotension). So, I just shut up and let him do the procedure. Again, I couldn't help but think about how ME, a doctor at U.AMS, didn't feel like I had any say in my healthcare. Imagine how many things are done to patients without their real consent or true knowledge of why/what is happening. Scary and ironic all at the same time. Dr. H comes storming into the room, admonishing Dr. VH because he got lost getting to the procedure room and "wasted his time." He came over to me, put me in the fetal position (which was 100x's more painful then laying on my stomach) and started feeling around my back. First, he numbed the space (bee sting my ass) and then he put the bigger needle in and started to withdraw fluid. All at once I felt hot and nauseated and was fighting the urge to pass out when he moved the needle again and OMG! Talk about pain! Sharp, shooting down my right leg and in my groin. I really thought I was going to be sick because the pain was so overwhelming. Then, they injected the dye. This time I screamed and jumped off of the table. It seemed like a bullet in my spine and an electric shock down both legs. It was sudden, sharp, searing, unexpected, and TERRIBLE. Luckily, Dr. VH took pity on me and essentially took over the procedure. After bringing me nothing but pain, Dr. H left and it was just us (Dr. VH, his nurse, and me). I rolled over and looked up at Dr. VH and he said, "just remember, I'm not the one who stuck you." This made us all laugh a little. Later I was told that the needle has been put in the wrong space and the dye had been injected into the wrong space. This resulted in the lower part of my spinal cord getting "lit up" and was the cause of a lot of pain. I also learned that Dr. H "skewered" my pudendal nerve, which caused considerable leg and groin pain for about a week. If you look up what the pudendal nerve innervates, it might make you squirm a little.
They wheeled me out of the room and into the CT scanner and then off to recovery to wait. The original plan was that they would scan my head and entire spine every 2 hours for 6-8 hours in hopes of finding the leak. Apparently, these leaks can be very tricky and Dr. VH said he had never found the leak with just one scan. After getting settled in recovery, Dr. VH came walking in, "I have good news and bad news." Shit. I knew I wasn't supposed to be seeing him so soon. Besides, didn't we have many more scans to do before the day was over? He continued, "Dr. H stuck you so many times and put so many holes in your dura that I can't see where the the leak is because the contrast dye is leaking through the holes he placed. So, we are going to have to do this all over again on Monday." The good news? "You get to go home." Oh, ok. On bedrest for the weekend and then we get to do it all over again. Of course I said, "next time you do all the sticking, right?"
They wheeled me out of the room and into the CT scanner and then off to recovery to wait. The original plan was that they would scan my head and entire spine every 2 hours for 6-8 hours in hopes of finding the leak. Apparently, these leaks can be very tricky and Dr. VH said he had never found the leak with just one scan. After getting settled in recovery, Dr. VH came walking in, "I have good news and bad news." Shit. I knew I wasn't supposed to be seeing him so soon. Besides, didn't we have many more scans to do before the day was over? He continued, "Dr. H stuck you so many times and put so many holes in your dura that I can't see where the the leak is because the contrast dye is leaking through the holes he placed. So, we are going to have to do this all over again on Monday." The good news? "You get to go home." Oh, ok. On bedrest for the weekend and then we get to do it all over again. Of course I said, "next time you do all the sticking, right?"
Everyone kept saying, "aren't you mad??? I'd be furious." Luckily, Dr. VH paused after he said, "I have good news and bad news." In that brief pause, I had enough time to think of all the potential "bad" news that could be on the way. Trust me, doing it again was a picnic compared to the things I was imagining.
I could point out the 10 billion times throughout this encounter that I was thinking of my patients and taking mental notes. When you are the one on the gurney you hear and see everything. The smallest things can make you comfortable and happy vs nervous and scared. The reality? It doesn't take much to tip the scale one way or another. These are the things I have to take home and remember when I am tired, frustrated, or hurried. My role as a physician puts me in a place to have a dramatic impact on a patient (regardless of the healthcare being administered). Just being human, taking time, smiling...these are the things that make the big difference. There are a lot of people that can give the right chemotherapy or order the right tests, that is not what makes the difference. That is not what makes a good doctor. I hope I never forget this.
Monday, October 19, 2009
The Other Side, part 1
This is the first of several posts surrounding our newest adventure. They call it "spontaneous intracranial hypotension." Yep, that is exactly what I said.
The headaches started slowly. They were different than any headache I had ever experienced (I don't usually have a lot of headaches and have no history of migraines, etc) which seemed a little strange. It started on a Monday. They were not that bad, just a little distracting. In describing them to my coworker I said, "it feels like the pressure is off in my head." The headaches were made worse when flexed my neck and they got worse as the day progressed. Interestingly, they went away after laying flat for about 30 minutes. I took I.buprofen, sinus medicine (even though I had no sinus symptoms), and tried to drink a lot of water. I had started a new diet so I thought that might be the culprit. As the week progressed, the headaches became worse. By Sunday, I was in pain. If I stood up, I hurt. If I was laying down, much better. Each day was like a ticking time bomb, I knew I only had so much time before I was going to have a lot of pain. I was barely making it through the day and was going to bed as soon as I hit the door. It was almost like my body was FORCING me to put my head down, it was the ONLY way to make the pain bearable. I had been talking to my PCP through all of this and had one trip to the ER in the middle of it all. Everyone was thinking spinal headaches without the usual preceding trauma (which is rare, but happens). By the following Wed my PCP had an appointment for me with a Neurologist. By the time I made it to his office, the pain was overwhelming. It was searing and felt like lightening through my neck and the back of my head. I was ready to jump off a building, I was hurting. I had been up all morning and was just barely making it by the time I got to the appointment. Thankfully, the woman at the front desk took mercy on me and let me go directly to the exam room and recline. The rest was kind of a blur. The neurologist came in and started examining me. He was rough and had a terrible bedside manner, none of which suprised me since I have known him since medical school (and NEVER liked him). But, he is good (smart) and the head of the department AND he was in my room immediately. Unfortunately, I couldn't quit crying. I was scared and in pain and my medical care was now in the hands of a man I never liked. It was one of those situations where you just can't stop crying, even though you really want to! I wanted to say, "I'm not one of those hysterical crazy women, something is really wrong here!"
After about a hour of questions and physical exam he says, "something is really wrong here. Either you have a tumor or a spinal leak. Are you here alone?" I was there alone because I had gone to work that day and had told Mere to stay home until I found out more, a decision I was regretting. I said, "Yes, but I can have someone here right away." "Your husband?" he asked. "Sure," was all I could manage. Then he said, "we are doing an urgent MRI of your brain. If there is no mass and signs of a leak then we will do a myelogram and then a blood patch or maybe surgery." Me, "how long am I going to be down?" Him, "no matter what this turns out to be, you are down for awhile." At this point in time, I was just to scared to ask anymore questions. Not to mention, I was still in a considerable amount of pain. Of course, my pager had been going off throughout my appointment (because that is just my luck). I called the chief fellow and tried to tell her what was going on and pass off my consults to her (bless her heart, I was crying so hard she could barely understand me).
Off to MRI we went. Now, I know how hard it is to get an urgent MRI. I know the buzz words that you have to use to make things happen so fast. I also know that none of them are good. After they got me settled in the hall on a gurney, it was time to wait. Mere was waiting for my mom to drive from Conway to watch Layne and then she would be there. After about 30 minutes, they moved me to another gurney and then the MRI. Now, I knew that some people got claustrophobic with MRIs and I knew that they were loud. However, I wasn't expecting to have my head put in a brace, earbuds shoved into my ears, and be in a tube with less than an inch around me in any given direction. The tech said as I went in, "it's gonna be loud, whatever you do, don't move. About 1/2 through the scan we are going to pull you out, start and IV, and give you some contrast dye then we will put you back in the scanner." Uhmm...ok. As I started to go into the scanner I could feel my heart speeding up and anxiety coming over me. For a brief moment I didn't think I could do it. Luckily, something (the cozmos, God, whatever) just came over me and I thought, I can relax and do this the easy way or I can totally freak out and delay this process. I shut my eyes and retreated into my own little world. While I was in the machine I couldn't help but wonder if we were going to be dealing with a tumor. It was scary. But, for the time being it was just me and the machine. No one could get to me, talk to me, or call me...I relaxed. I started to think of how patients must feel when they are getting scanned. Big, loud, cold machines and the ability to see all the bad stuff (like cancer) that can be hiding in our bodies. I was thinking of the woman with breast cancer and new onset back pain who gets put through the scanner looking for spinal mets. The young guy with melanoma and new headaches looking for brain mets. How terrified those people must be!
They pulled me out and tried to send me home. Nope, I knew I was supposed to wait to Dr. VH (the neuroradiologist). This was the first of many times that no one really knew where I was supposed to be, luckily, I did, but I fully realize that the average patient would have no clue. Phone calls were made and a few minutes later, he came around the corner. Dr. VH (we had never met before) came up to the gurney and said, "you definately have all the signs of a csf leak and low pressure. Now, we just have to find the leak." Thank God! No tumor. We talked for a few minutes and decided that since it was 4:30 in the afternoon that we would wait until the morning to start the process of finding the leak. I was given the option to be admitted but mostly just wanted to get to my bed, so they discharged me home with instructions to return the next day at 8am.
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