March 1, 2011
i'm going into the hospital for a diagnostic lumbar puncture tomorrow. i'll be there three to five days. it's in baltimore.
lesli
March 2, 2011
It turns out i have internet in the hospitaal and i can sit up for periods. i don't have a needle sticking out of my spinall cord. tkhey toodk the needle ouut and just left a placstick tube sticking out which is much more comfortablke.,
i'm in baltimore.
this test is mostly just for diagnostic purposes. they are measuring my pressure for a couple of days day and night and then will drain some for a day or two to see how that makes me feel. the hope is it makes me feel ilmproved. but after they stop i will feel worse. then I/they decide whether i can get a shunt or a stent put in.
lesli
spinal fluid catheter
email from steve summers--
Lesli has more definitive proof of having a brain than anyone I know. I've never seen mine and its existence is frequently brought into question by my decisions. I do have a decent documentary awareness of the rest of my central nervous system.
March 4, 2011
So, how much longer do they think you will be in the hospital?
Sandi
i don't know . theky screwed up the test. i'm feelilng bkpretty low. i hate being here. i hate it all,and it's not even givng an;y useful information
Lesli
March 4
the night nurse last night accidentally moved the valve and started shunting spiinal fluid without realizing it so she ruined the test for the entire night (which is the main purpose) and the preivous night i hadn't slept well enough for the them to get good enough pressure readings. I had dto tell her several times that the cfs pressure readings were looking lower before she got another nurse in to check who figured out that the shunt valve was open. It had been open for hours
So this miserable awful test may not have provided accurate readings. they started shunting this morning anyway, even though they didn't get the pressure readings properly.
lesli
other than that this hospital is the best i've been in. best food, for the most part nice nurses. the nurse last night was even nice, just incompetent.
lesli
March 4
today hasn't been a good day. i've had it with the not mkoving. i can endure a lot if i think its going to do any future good. but i no longer think this test will.
i think night nurses are often worse than the day nurses because th;ey are the newbies or hte ones that can' t get a job during the day.
the night nurses in new ;york were a nightbmare after major surgery. i found myself dreaadi;ng the night because i knew i coulnd't get much help.
here they have so far been more helpful, but she was really incompetent last night and wouldn't listen for a long time when i was pointing out that the cf pressure was reading musch lower than before.
the night person last night who i had to call and then she would call my nurse was terrible. she was mean and grouchy and just woulndn't answer or she would answer and then never call the nurse. otherwise everyone at theis hopital has been nice.
i got more mininutes on my phone, but i hav edoug's fphne right now.
lesli
March 5
the shunting does seem to help.
i had a very good night nurse last night and that was very good and ;important because we kept having to adjust the shiunting rate. it didn't shunt much at all whilel i was sistting up, but within an hour of lying down it had shunted over 20 ccs, which caused a bad headache, ,so we had to keep slowing the rate until the headache levelled off (about 4 am). That just wouldn't have worked well with an incompetent nurse. This nurse was nice and competent. She was from asia.
there are little droids that drive around the halls and deliver medicine to different rooms. I had no idea that robots were at a point that that would be cost effective for a hospital. they move around and stop when something is in front of them. they can navigate the halls and elevators. wow. it's just like old sci-fi shows.
Kathryn Summers-
I saw the robot briefly as I was walking out the other night. I had to stop and watch as it stopped behind a bed someone had carelessly left in the way. It dithered a bit, then managed to detour around the bed, went back to its spot next the wall, and continued forward until a person got in its way. Then it stopped again. The person moved, and it restarted. I was charmed. It looks like a cart, but it hummed to itself a bit and had lights, and so you could tell immediately that it was a robot.
I'm surprised that you had to mention the robots - I guess Doug is probably to busy figuring out how to design the next generation model.
steve
spinal fluid catheter
March 6
i was going to go home today but im haveing trouble with low pressure
Lesli asked me to finish her email for her. She has very bad headaches whenever she sits up (because the fluid is draining away from her brain) so she has to stay longer at the hospital. We don't know how much longer.
Doug
She asked me to explain that normally she has high pressure (which this test confirmed) but that they drained the fluid as part of the test, and then more of it fountained out when they removed the tube, so the problem right now is too little pressure.
Doug
March 6
steve summers' email--At this point are they working to simply stabilize it so she can go home - or stabilize it at a lower more comfortable point for a long term improvement?
The body should heal the hole back up and she will be the same as before, with high pressure. They are talking about surgical options for the long term, such as a stent or a shunt.
Doug
Mar 6, 2011 at 9:05 PM, Kelli Summers <kelli@summersclan.org> wrote:
Hey Doug,
Let us know if we can help with Daniel this week. I can drive him to and from school if needed and he can spend the night here if needed. I didn't realize Lesli was still in the hospital until this evening (Sunday).
Kelli & Steve
March 6
hi kelli.
doug and daniel are speninding the nigh at kathryns, where they've been since yesterday. daniel is suppoosed to have statewide testing tomorrw and we were just going to have him miss it because we couldnt think what else to do i. thanks for the offer. i might nieed help with it when i get back home as it seems to be taking a long time for me to be able to stand for longer than to go the bathroom.
lesli
March 6
Mrs. Schmorr,
Daniel Summerstay's mom is in the hospital, and though she was supposed to get out today, she won't be leaving until tomorrow morning at the earliest. So I won't be able to get him to class. Are you doing testing? Hopefully he'll be able to make that up.
I know he's been getting behind in his handwriting skills, and that has been impacting his spelling and math assignments. I'll be trying to work with him to do a better job on that.
Douglas
March 7
they are going to do a procedure like an epidural to put a blood patch in to hopefully close up the internal leak in my spinal column. so , i will leave tomorrow.
lesli
I was hoping you'd get a spigot with a nice dial pressure gauge so you could do dynamic adjustments.
I'm partial to brass.
Either that or you need to get a digital readout on your head. You could hide it with hair.
I'm actually considering a cyborgectomy. I think if I get crazy with my surgeon this summer he might remove all of my titanium and only put back a very little bit.
We'll see.
No matter what I don't think he'll give me a dial gauge.
He's nice but growing up in rural Kenya I don't think he has an inborn appreciation for the aesthetic benfits of brass dial gauges.
pity
steve
March 7
daniel really wanted to see the robot and wasn't able to his fisrt visit. i can't type well by the way because i have to ly flat on my back to slow the splianl fluid leakeaage and reduce my headaches. anyway, luckily he was able to see one or two his second fvisit. iwdoug even recorded him with it some.
lesli
March 7
Lesli's headache was too severe yesterday when we were about to leave, so we're still here. The headaches are because they removed most of her cerebrospinal fluid for this test.
Doug
March 7
We've been in here for 6 days, now. The test was a serious one: putting a tube in her back and measuring the flow of pressure for three days. Then they drain the pressure and see how it affects the patient.
March 7
Lesli asked me to explain further. We came in here on Wed. for what was supposed to be a 3 day test. They measured her spinal fluid pressure and found that it was spiking very high during the night. Then they drained out the fluid to see what would happen. When they were done with that, they removed the tube. But when they did, the fluid fountained out. The doctor said "Huh, never seen that before" and superglued her back closed when it had slowed to a trickle. But it continued to leak inside her body. So now they're going to put in what's called a blood patch, using her own blood to stop the leak.
doug
march 7
ive ben waiting all dayf or them to come get me to do the blood patch. i finally asked the nurse and he called radiologiy and they said they have me scheduled for dtomorrowm but don't know what time. i'lm very frustrated. i still can't reallyg et up. doug is missing a lot of important things at school and work. i'm apparently bleeding splinal fluid into my back. i thought id had all different flavors of headache but this is s new one. and not a good one.'
on the plus side, my edema has all cleared up twith this drainage, andmy head feels moreclear, just super painful. and i did not get meningitis.
i'm so furustrated with the waiting and waiting and no healing and now more waiting. the doctor oderderedk the patch for today.
lesli
(the nurse, Christy, and me. she kept being surprised when she would come back in for her next shift and i would still be at the hospital. or back at the hospital again.)
march 8
Hi Lesli,
I wanted to let you know Daniel got off to school smoothly this morning. He woke up on his own at 7am. I packed him a snack. I was going to just let him buy lunch, but I was making a sandwich for Merrick's lunch and Daniel wanted one, too, so he took that and is going to buy milk and maybe something else to go with it. He also ate all of his breakfast which I thought was good. I'm planning to pick him up after school. Doug wrote a note.
Kelli
march 8
Lesli's feeling really miserable and her head hurts like anything, so she would appreciate it if she knew you were thinking of her in your prayers.
Douglas
March 8
We're at Sinai hospital in Baltimore. Lesli is done with the patch now, and seems to be better than she was already.
march 8
We've been in here for 6 days, now. The test was a serious one: putting a tube in her back and measuring the flow of pressure for three days. Then they drain the pressure and see how it affects the patient.
March 8
That was the worst procedure i've ever had to go thru. Ever. Made much worse because i had to lie completely still on my stomach, and i can't turn my head, and my head, face and neck hurt like crazy. They served as a counter irritant however so that i could withstand all the nerve pain of them bloating above my spinal cord with my own blood. They got 34 cc's of blood in. More than for most people. They kept telling me to tell them to stop when i could nt take it any more, and i never told them to stop so they did it until they couldnt' get any more in.n I really really wanted it to work.
I stood up for the first time and I was able to do it and i feel better than i have in 3 days. So i really think it worked. I wish they'd done it yesterday. The agony was getting worse and worse with every consecutive ahour.
But i'm so glad it seems to have worked. I hope it didn't cause any worse permanent brain damage or problems.
Thanks so much to sandi who i asked to drive all the way up to give me a massage. I was getting a lot of spasmed muscles, partly from not being able to move mucha and partly from leaking spinal fluid. That helped so much sandi. thanks you so so much.
Lesli
march 8
they are releasing me tonight
march 8
i just got home and i feel really unwwell and terrrible headache. i'm worried it broke open. keepin prayers.
lesli
March 9
Hi,
I don't think i need any help right now. I just got back from the hospital last night. when the y took the shunt out i had internal leak out of my spinal cord into my back. yesterday i had a bloood patch of my own blood put in to stop it. I"ve ebeen pretty sick. I'm so glad to be out of the hostpital.
March 9
I'm feeling somewhat better. If it opened up a little, i'm hopoing it scabbed over again. I think i need to stay mostly lying down for a while though.
lesli
March 9
thanks everyone for the well wishes.
this was supposed to be a routine test that they made me get before they would give me surgery for the high pressure. the test confirmed high pressure, but went horribly wrong with the leakage and then the internal leakeage. i'm not certain the internal spinal cord leak is completely fixed, but i hope so. I'm still not feeling well
lesli
March 10
Thanks Sherrie. I'm sorry i didn't call you back. I got home from the hospital (after 7 days!) late tuesday night. I had what was supposed to be a 3 to 5 day test of spinal fluid pressure, but it went wrong when they took the tube out of my back. It fountained spinal fluid out, which they had never seen before. When they finally got the outside hole closed with super glue, it kept leaking out of the hole in my spinal cord into my back. That caused incredibly bad headaches and ill health. After three days of that, they did a blood patch of injecting my own blood right above my spinal cord to try to stop the hole up. It seems to have helped.
march 10
My burning pain is getting worse now that my spinal fluid pressure is
building back up. It went down with the shunt. I don't know why. My
edema went away with the shunt and low pressure. My face is a
different shape now and looks more normal. I hadn't even realized i
was retaining water in my face. I thought i was just fatter looking.
Same with my feet, ankles, hands and feet. They look skinnier and more
normal now. I thought they were just fatter, but it was just water
retention. I've been retaining a lot of water over the past six
months.
So i think the water retention is caused by the high pressure in my
head. I thought so before, but now i'm pretty sure.
I think part of why i don't write in my journal much any more is
because my hands hurt and it's more painful to write by hand than to
type, but i've never connected with or liked writing a journal on the
computer. Maybe i should try it again. Also the swelling from edema inmy hands makes them more stiff, as well as painful.
Lesli
I thought the only reason i don't write in my journal is because of my
swollen head so i don't feel well or clear headed, and that's part of
it, but not all of it.
march 10
By the way, they don't open up your brain to put a stent in. They start from a major artery in your thigh and bring it up through your heart to place it in your brain. So they don't even open your brain at all. The major risk is for blood to clot on it in the first 6 months and cause a stroke. Blood tends to clot on anything foreign in the veins. They are designed that way, because they think it s a hole. But apparently my body is not very good at doing that anyway, at least in the spinal cord . . .
So you take two types of blood thinner for the first six months. (which would be hard with the barretts esophagus) After six months there is little to no risk because your body has coated the stent with it's own material. I wonder if they could use something like the skin gun for burn patients to take stem cells from my vein and coat the stent before they put it in to reduce that risk.
Lesli
march 10
No. A stent would strike at the cause--it would be a plastic tube placed in the most narrow of the two narrow veins in my brain to open it wider. But it is a new and experimental surgery and dangerous. They are reluctant to do it.
A shunt would drain some of the excess fluid in my brain.
Lesli
On Thu, Mar 10, 2011 at 1:31 AM, Rebecca Stay
what is the difference between a shunt and a stint? Don't both drain fluid to somewhere else?
R
On Wed, Mar 9, 2011 at 6:46 PM, Douglas/Lesli
Well, i was considering a shunt before a little but i don't think so now. I would still like to get a stent, if i can get them to do it.
lesli
March 11
doug took this the day after i got home from the hospital. i thought it was funny.
lesli
march 11
i'm doing a little better every day. i have a bad headache still, but
i think it's just transition from low to high pressure.
lesli
The doctor predicted that the headaches would still be bad going from low back up to high pressure.
lesli
i don't know. but high pressure causes headaches too. i often have headaches, and sometimes really bad ones, but at least i know their limits. i'm just glad the hole seems to be stopped up.
lesli
On Fri, Mar 11, 2011 at 10:30 AM, Sandra Summers
That's too bad. How long could it take for the pressure to build back up?
Sandi
march 11
I couldn't tell if i was having low pressure or high pressure headaches. I was up a little more today and i started having the really sharp headaches that are definitely low pressure headaches. i hope the hole is completely closed. If it's not, it's much smaller, but i hope it's completely closed.
lesli
March 12
The blood patch seems to have failed yesterday. I'm really sick again with even some new extra symptoms. i can't reach my doctor. i realized i needed to after five yesterday.
lesli
March 15
i went to the emergency room as per drs instructions to try to get another blood patch. they weren't able to do it at frederick memorial hospital but we didn't find out for four hours. at least they gave me strong pain killer-- but only about 3 days worth (15 pills)
the anesthesiologist didn't want to do the blood patch because he doesn't use flouroscopy to follow where the needle is and they don't do that at frederick memorial hospital and he said i really need it because of the previous laminectomy on the site. He doesn't want to poke another hole in my spinal column. He also doesn't think if the first patch didn't hold that another patch would hold for more than a couple of days. (I had that same concern--but it's the only thing dr. williams who did the catheter said to do.) He thinks the hole is too big. The patch failing after a couple of days is indicative of a bigger hole, he says. He was smart and i think he's right. But i'm not getting much help from the doctor who did the catheter. Anyway, the anesthesiologist thinks I'll need to get surgery to go in there and sew up my spinal cord.
I just can't get the help i need and all this means more time and time and time and calls and calls to try to get something to happen.
but i have stronger painkiller for a couple of days.
Lesli
Mar 15, 2011 at 10:40 AM,
Doug and Lesli--
I could drive down with the kids and help cook, clean, play with Daniel and drive him where he needs to be, etc if that would be helpful. However, I would have the kids with me and I don't know if they'd be more of a disruption than a help, but there's nothing here that I have to stay for, so we could come any time you needed us. You're in our prayers.
Love, Heather
march 15
Heather,
That's really kind of you to offer. The truth is, we've long since adapted our lifestyle to not needing to prepare food, so that sort of thing isn't really a problem. But I think having the kids around would be hard for Lesli to take. Daniel's been spending a lot of time at other people's houses lately for that reason.
Once all this is over, though, we'd be happy to have you come anytime.
Doug
march 15
genevieve, thanks for the call. I'm not really pu to visitors right now. I 'm in survival mode. especially not children. the most helpful thing would be if daniel could be gone until i'm better, but still taken to school . unfortunatly, he has sa cold and is sad and tired of being away form home. steve and keelli are getting sick again and are having orthopedic probelsm with maddie and isabel.
doug is trying to go to work tomorrow. if you and yours are completely well and you could not bring johnny, it migh tbe helpful if you could come and get me lunch tomorrow or the next day. but just quiet talking and not much of it, aand its fin e if not. lisa will come up and check on me. Lesli
On Tue, Mar 15, 2011 at 9:45 PM,
Are we allowed to send you funny things that might potentially make you laugh? Or would that be a Bad Idea? -Steve Stay
that would be a very bad idea :)
really
lesli
march 16
hi,
i'm super ill and in a lot of pain. the pain killers get less effective every time.
dr. williams, who did the original test, wants me to "wait" 2 more days to see if i recover on my own. (i'm getting worse every day, not better) and then get another blood patch. I'm not sure.
anyway, it's totally fine and appreciated if people call, and doug might answer the phone, but for the most part i can't talk on the phone because i can't reach and twist to answer it and it is too painful to my head to talk on the phone. so don't be offended.
i'm supposed to completely lie down. i don't have a laptop. but on bathroom breaks i check my email and love getting emails.
lesli
March 16
I'm heading back to the hospital--Mt. Sinai in baltimore.
kelli is taking me. doug has a midterm tomorrow he's not prepard for. he keeps saying he'll have to drop all his classes because of this.
they will probably do another blood patch, which will probably make me even worse.
lkesli
March 16
I don't want anyone to get the wrong idea. I've completely stopped going to work and school for the last two weeks to take care of Lesli. I informed her this morning that the review for the midterm was today, that I would be missing it, and that would mean I would need to incomplete the class because I am completely unprepared for the test. She insisted that I go in for the review and try to take the test anyway, otherwise I would have been at home today, too.
But I spoke with the professor today, and he agreed to let me put off the test indefinitely.
Doug
March 16
Does anyone have an IPAD i could borrow for the hospital stay? i don't think anyone does now that sean is gone, but i thought i'd ask. i hate it at the hospital and i can't borrow dougs laptop because he has to use it for his midterms and his work, also it's too big to use when i have to lie flat on my back all the time, and it occured to me that and IPAd would work for lying flat on my baack and really help make the hospital stay more doable.
i wokuld be really careful with it, and pafy for it if i damaged it.
andyway, let me know.
room 3005 mt. sinai
lesli
March 16
I'm dictating to Doug. In fact, never mind; take off the 'in fact.' He says he'll put in some lower case i's so it seems like its from me. Thanks a lot to Kelli for taking me to the hospital and helping out all day and watching Daniel.
I got another blood patch; it doesn't seem to have worked. I'll be in the hospital a couple of days. They're going to give me Diamox to reduce my CSF production because even though its counter-intuitive some people their body just tries to have a high pressure even when its draining and the high pressure keeps the hole from closing, but they still get the low pressure symptoms.
[This is like when you want to fix a leak in the plumbing that keeps water from reaching the faucet, you turn off the water at the main line before you fix it even though your goal is to eventually have MORE water come out of the faucet. While you're fixing it, you want the water off. --Doug]
I think this theory makes sense about some people's bodies wanting to have high pressure. But Dr. Williams says they don't know why some people's bodies want to have high pressure, but I think I know with my body it's because the fluid pressure has to be high to push through the venous sinus stenosis.
Dr. Williams will keep me in the hospital at least until Saturday, and I hope he will help me find a real solution if this doesn't work. I don't think it will.
Doug was very sweet and bought me a netbook. It's a little hard to use lying flat on my back, but we can use it for 14 days before we would have to return it if it doesn't work out.
Lesli
March 17
every time i get a minute, that's the time when they begin it--- Cinderelli, Cinderelli, Cinderalla!
So, I have had a super super painful night, because he's [Dr. Williams] got me on diamox, which further drains my spinal fluid, or reduces it rather. so even with the pain meds, i've been in a lot of pain. every time i slightly turn my head on the bed, it's super painful. so i haven't gotten much sleep. Alomst none. plus nurses keep ocoming in and doing stuff. so at 5 am the pain was finally controlled enough to fall asleep, and I slept i kid you not 5 minutes before a nurse came in to do my blood presure etc and draw blood painfully from my hand (most of my veins have already been blown) so i keep thinking of that cinderella song. maybe it ts all the medication i'm on.
lesli
march 17
Dr. Williams has ordered a round of MRIs to try to detect where the leak is, where the blood from the patch went, and whether there are surgical options to fix it. I'm going to go home to pick up some stuff soon and maybe get a little sleep.
march 18
(I'm dictating this to Doug.) He's a big pooeyhead. Just kidding. You don't have to put that in if you don't want.
I'm not sure but it appears as if the second blood patch mixed with the Diamox which is to reduce the pressure seems to be working.
My CSF pressure symptoms seem to be coming back, accompanied by really bad headaches of the opposite type. Switching from being too low for too long to high pressure is making my body really, really ill. If that's what is happening.
I keep thinking I'm as sick and as much misery as its possible to be and then something gets worse. Like yesterday, I thought I was sick as possible and then on top of the huge amount of pain I started throwing up everything. I think it was from all the pain, and the medications, and the pressure changing, not like I got the flu or anything.
On the plus side it looks like the hole is closing. If all goes well I should go home tomorrow to recover at home. By all goes well I mean I won't have to come back again, too. I'll still be really ill when I go home and need a lot of help, but hopefully the recovery will be going in the right direction instead of the wrong direction, like last time.
They found from MRIs that the reason I'm having back pain is that the blood leaked through the hole and into my spinal cord and coated all the nerves at the base of my spine, which is incredibly painful.
[The doctor has done research on a very similar situation in the brain. They found that the dynamics of the blood dissolving were almost identical to those of ice melting, so that at first you can see little change, but towards the end you can almost watch the last bit of the ice cube melt away.-- Doug] It should take two or three weeks to resolve.
march 18
it was blood from the first blood patch (when they put 34 ccs of blood in and he kept telling me the more i could tolerate going in the better it would be) that leaked into the hole in my spinal cord and then coated all the nerves at the base of the spinal cord, causing excruciating and ongoing pain. it's still painful. i think it may be slightly starting to improve. i still have to be on oxycodone for it though, and the headaches.
i'm pretty tired, but don't feel as ill as yesterday.
lesli
some pictures with daniel from my last day at the hospital
March 19
Hi,
I am being released this afternoon.I'm stilll really ill and in a lot of pain, so I will need daniel away from home for a t least a couople of days. Itt didn't work having him home last time I came home. Also, i need to stay lying flat on kmy back most of the time in the hopes that the blood patch won't fail this time (i wasn't up a whole lot last time either--but i'm also on diamox to reduce pressure this time).
So i'll still need a lot of help. i guess doug is getting kin d o fburned out. unfortunately, i can't take most peole comeing to sit with me or help me. certainly not random strangers. i need people i'm comfortable with and that are restful and wont talk a lot or do a lkot. oand that aren't stressful people. the list of those poeple who have open schedules drops to about zero.
i'm not up to any visits from children, and not many visits from anyone else, but short restful vistis would be okay (little talking and little doing). but it's fine if people don't visit ibecause i'm really too sick and tired to enjoy it. massages are good.
lesli
Hi,
Carolyn,
thanks a lot for cleaning. it was so lovely to get home from the hospital to a clean house. thanks a lot. it was so helpful. i'm not feeling well so i just need to rest.
lesli
march 19
Carolyn and Myrna,
I just realized that Myrna also helped clean. Thank you both so much. It was so lovely to have a the house clean to come home to from the hospital.
lesli
March 19
Well, I'm starting to recover from the drive home, which is always super hard. And so now I'm glad to be home. thanks everyone for help. thanks elisa for dinner and pickign up daniel, sandi for taking care of me and giving doug a break, and steve and kelli for watching daniel again. and kethryna nd john for watching daniel yesterday and this morning.
I'm supposed to be on bedrest with bathroom privileges for at least a week. (thank heavens 'with bathroom privileges'). After that, still bedrest, but slowly and gently increasing the amount i do and am up.
I'm allowed to have my head supported up about 30% part of the time. We are just trying to not have the blood patch fail again.
Lesli
march 21
I've been sleeping a lot today. i've been mostly controllling my pain. when i don't it's really bad, but not as bad a s a couple of days ago. my head is still full of pressure and getting more used to that, so the headaches are less intense. the nerve pain from the blood in my spinal cord is still pretty bad. we were unable to locate a pharmacy wit h ocycodone yesterday or today, aso hopefully we can to morrow because i will run out mid day.
lesli
march 21
doug wrote-
lesli said "I hate dark chocolate. the only thing i hate worse than dark chocolate is having no chocolate."
march 21
I have had a very hard time seeing since the pressure in my head has gone up. I always have trouble seeing and hearing a little, but all the troubles have been times 4. I can see a little better finally, but at first i couldn'd tg even read and wehne i got home i could barely see the floweres on the walk in the house. i was trying to look at them but could barely see them. i have even more trouble hearing than usual, and more much more ringing in my ears and nooises in my ears and louder sounding rushing of blood whooshing sound behind each ear where the venous sinous stenosis is on each side.
everything got exaggerated i think because i had low pressure for so long. i still haver trouble seeing, but it's finallly getting a litttle better. i don't think i could watch a movie still. sounds still hurt mega, but they always hurt with high pressure. they hurt with low pressure too, but different. it hurts every time doug walks around our room, because it moves the floor. it hurts every time someone accidentally hits into the bed while walking. It didn't hurt so much while kelli walked around the room, because she walks so gently.
lesli
march 24
to mark--you know hiow i'm doing. crap. a very slightly better since i got home from the hospital, but not much. still on bedrest.
but at least the patcch hasn't come out yet.
lesli
March 26
On thursday, the terrible nerve pain in my lower spine started
decreasing. It continued decreasing yesterday and today it is almost
better. Wow. It's so great. After weeks of agonizing pain that made it
extremely difficult to even walk or get out of bed, it went away fast,
just as the doctor predicted. Like ice melting. the last little bit is
key. As I try to lower my pain medication, my headaches are
increasing, but they are handleable. thanks for everyones help and
prayers.
the nerves in the lower back are very fragile and should be treated
like gold. steve, treat yourself like a disabled person and my advice
is don't do any more projects that involve mmoving or lifting heavy
things or increasing pain in your lower back, even temporarily. Oh,
and don't let anyone pour blood into your lower spinal cord.
lesli
steve stay wrote:
"don't let anyone pout blood into your lower spinal cord"
Words to live by.
and of course the prequel to that is, don't let anyone poke holes in your spinal cord. No matter what reasonable reasons they may give.
lesli
-Sean
Not even to become a cyborg?
-Steve Stay
March 28
I'm still feeling super ill and hoping I can get back to the poor health I had before this procedure. (like the guy who told the rabbi his house was too small)
I'm completely off oxycodone but in a lot of pain from other things, but it's handleable pain. But it's still hard for me to get up. I'm really ill and tired and have no strength.
And while i was on bedrest Tabitha got out and is missing. We are very worried about her.
Lesli
March 28
lesli
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