12 Tips for 12 Years Sick

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Friday, May 3, 2013

Until someone has it they will never understand what it is like to have burning, stabbing, dull, pinching, pulsating, gnawing severe pain every minute of every day…me my health problems are BORING. All we can do … is back away from toxic people. They just don’t have coping skills to deal with chronic illness. If it can happen to YOU it can happen to THEM and that’s scary. I think illness in anyone forces people to look at their own mortality. So it’s not you it’s them. But that article I posted “12 Tips for 12 Years Sick” mentioned something about learning to be the kind of friend that does not always talk about their health problems.

I then realized that it is crucial never to use the word headaches while discussing our condition. Practically everybody has experienced one and related to us on those terms. Thus they do not sympathized, nor understand what we feel. Even my gp had no sympathy for almost a year, until he saw it was affecting my senses and balance.

To people like that I stress that it is a neurological condition, that feels more like the aftermath of being hit with a baseball bat whenever I get up.

I lost my friends over this also. They just didn’t understand and the drs not giving me a diagnosis for years didn’t help matters. i hope youre day gets better.

I think we all experience it. nobody knows how to deal with someone when the going gets tough. they tend to suck back into their own lil world where nothing is wrong. they see us like this for so long and think there’s no way it can go that long without being fixed.

I’ve also written about this before, but there’s no denying it: friendships and chronic health problems often don’t mix. Some of my friends have disappeared; others have stayed around, but our relationship has been changed by my illness.

As for friends who haven’t stuck around, our friendship may have faded away for any number of reasons. I’ve decided it’s about them not me. Illness may raise their own fears about health and mortality. They may not have the patience to stick with a friend who’s become so unreliable (I often have to cancel at the last moment – my friends who’ve stuck around are fine with that).

Just as being always negative is bad, so is always being positive.

Friday, May 3, 2013 at 10:34pm EDT

[They know] my problem, but like most everyone else, they don’t realize or believe how debilitating CSF problems are.

Seems most everyone that I tell may not say it directly, but they think that I am crazy for going so far for medical care. Then when that care doesn’t fix me, their belief that I am crazy is confirmed.

Bob has an aversion to caffeine, so all we have in the house is a little bit of caffeinated tea, which didn’t help last week when I drank one cup of it. [Near the end she was taking 200mg tablets of caffeine.] Some people simply have a stretchy dura.

I would think that if my CSF was quickly absorbed, HP would not have occurred nearly 24 hours after she injected 30cc of blood and glue. I discovered through my own research that CT myelograms are not good at finding high-flow leaks. The myelogram portion of the test is first.

By the time the CT portion is done, the contrast has equalized in the dura and wherever it’s leaking. I wonder if that is my problem. Digital subtraction myelograms like Cedars has, are much better at locating high-flow leaks, but they too miss some. Thank you for your supportive and kind words. They mean a lot to me. I feel so much like giving up. No one locally understands.

Saturday, May 4, 2013 at 1:00pm EDT

I am home from Duke, and so disappointed.

I saw Dr. Gray 5 times this month. The times she checked my pressure it was at record lows for me. She added artificial CSF and did blood and glue patches. I had instant relief of my pain and other symptoms for about 2 days after each procedure. I am now back to where I started. I had a different reaction to the procedure she did on Tuesday. She injected a total of 30cc volume combination of blood and glue patches in 9 locations. The first 24 hours after, I felt great. Second 24 hours had very HP. Kept almost nothing down for 24 hours. I took one 250 Diamox every 3-4 hours with a sip of water.

I had to sit up to sleep. The third 24 hours, almost no HP, and took only 1 Diamox in the morning. Yesterday, and today, horrible LP is back with all the associated horrendous symptoms. … She did, however, mention something in when I was in recovery about dural reduction surgery. I didn’t feel well enough to question that.

I know my body doesn’t have a problem making CSF because in December, she put a hole in my dura to relieve HP symptoms. I got no headache after that procedure.

Saturday, May 4, 2013 at 4:41pm EDT

Unless I have a crappy dura, which I may, I’ll have a good idea where the leak is after all 5 reports are available for April and I correlate them. It takes about a month until the reports are on Healthview. They are updating Healthview, I don’t know if that will make it take longer. Any site she repatched last Tuesday that she patched earlier this month can be eliminated as a possible leak location. There’s no way that I blew out patches and went back to LP within a day or two after the first 4 procedures with no HP. My OP’s were around 10 this month. They’ve never been this low before. If these 4 procedures patched some small leaks, my OP would have went up SOME, even if it was still low. That didn’t happen. The procedure Tuesday was the only one that put me into HP. For the first 24 hours after the procedure, I felt good so HP can’t be blamed on the volume of space 30cc took. HP occurred 24 hours later and got so bad that I kept almost nothing down, even with Zofran. I took one 250 Diamox every 3 hours with a sip of water. I took 2, 250 Diamox at bed. My patches blew in my sleep. I had to sleep sitting up.

Saturday, May 4, 2013 at 7:27pm EDT

I haven’t taken Diamox since then, and my pressure is very low. Dr. Gray has checked my pressure enough that I know my head has the imploding feeling only happens when my pressure is 10 or less.

I don’t that I took enough Diamox on Wednesday and the patches blew from HP, or HP blew a hole somewhere else.

Monday, May 6, 2013 at 7:11am EDT

The unimaginable pain level with no way to stop the pain is what will do me in.

A local doctor prescribes morphine and oxycodone. My last refill of both was 6 months ago, so it’s not like I take it often. The medication doesn’t work.

Asking for a particular pain medication like fioricet is seen as drug seeking behavior… Each time Dr. Gray added Elliot B, I had instant pain relief for 24 hours.

Monday, May 6, 2013 at 12:49pm EDT

I heard from Dr. Gray. She wants me to wait for a while, but I am getting worse. We spent 4 of the last 5 weeks in Durham. The first 4 procedures she did, I either never left low pressure, or left low pressure for about 24 hours IF she added artificial CSF... The 5th procedure was different. She randomly patched locations. I felt good for 24 hours, had horrible high pressure the next 24 hours despite taking pressure reducing medication every 3 hours. I had to sleep sitting up because the pressure was so bad. I know that I blew a patch during the night. I went back to low pressure, and remain there. I think that I blew a high-flow leak within 10 days after she had me stop the pressure reducing medication in February. CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars in LA is capable. I think that I reacted different to the 5th procedure because she accidentally patched the high-flow leak.

Monday, May 6, 2013 at 2:20pm EDT

No one has discussed a shunt with me. I KNOW that I have issues with HP and Diamox not controlling it because she put a hole in my dura last December because 3000mg of Diamox and 100 HCTZ could not control my pressure. I think that I blew a high-flow leak within 10 days after she had me stop Diamox in February.

CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars is. I think that I reacted different to the 5th procedure because she accidently patched the high-flow leak but the pressure blew it open.

The hospice workers [for Karen’s mother] wear masks and gowns when they come for the MRSA. Her oxygen levels go way to low when she does any walking. That will never improve because of the pulmonary fibrosis. She’s so weak that she can hardly get up, and has nearly fallen several times. When the time comes, I don’t know how to deal with this when my upright time is so limited!!!!!!!!

Monday, May 6, 2013 at 8:15pm EDT

Things have gotten worse. My 81 year old Dad has a lump that they think is a hernia and needs surgery. I give up.

Monday, May 6, 2013 at 8:43pm EDT

It’s mostly my head and neck that hurts, but in between my shoulder blades has been intensely itchy for the past several weeks. I believe this is where the leak is. That’s where she concentrated her patches the last time that gave me HP.

Monday, May 6, 2013 at 8:51pm EDT

I don’t know how I will last. My pressure is so low that I am afraid of having permanent damage the longer this goes on.

Monday, May 6, 2013 at 9:59pm EDT

So thoughtful of you to ask! [About being Christian.] I don’t go to church, but I do believe in a higher being. All religions throughout history can’t be correct, but I believe a higher being exists.

Tuesday, May 7, 2013 at 2:49am EDT

Last fall, she patched several areas. HP got so bad she had to put a hole in my dura in December. 3000mg of Diamox daily could not control the pressure. The first 4 times that I saw her this month, I had instant headache relief for about a day after she added Elliot B, then went back to LP. The 5th time she patched me, she did not do a lumbar puncture so no Elliot B. HP got so bad 24 hours after the procedure that one 250mg Diamox every three hours, and two 250mg Diamox at bedtime could not control it. I had to sleep sitting up. I blew my patches during the night. And remain back in LP.

Tuesday, May 7, 2013 at 2:50am EDT

I did not need Diamox the first 4 procedures either. I simply went back to LP. I believe that she patched the wrong areas these times.

[They did not show up on any tests, so it was an educated guess at best where to patch.]

Tuesday, May 7, 2013 at 2:59am EDT

She thinks she knows where the leaks are. She did a new CT myelogram, but said it looked very similar to the one from last fall. She used glue. The fifth time she patched me, she randomly patched areas. I believe she accidentally found a high-flow CSF leak that time. CT myelograms are not good at localizing high-flow leaks. Digital subtraction myelograms are better.

Tuesday, May 7, 2013 at 5:17pm EDT

A high flow leak is a fast leak. During a CT myelogram, the CT is done after the myelogram. That delay allows the contrast to equalize in your dura and wherever it is leaking to. After the contrast equalizes, they can’t localize where the leak comes from.

Tuesday, May 7, 2013 at 8:53pm EDT

I’ll call tomorrow to schedule a date. I plan to keep the date off the forums, but will let you know privately.

[Karen was always worried about our house being empty. I can assure you it is well watched!]

Tuesday, May 7, 2013 at 9:03pm EDT

I am scared, and that’s an understatement!!!!

Tuesday, May 7, 2013 at 9:07pm EDT

Take that first scary step. This is our lives!! I have so many fears about this trip!!!!

Tuesday, May 7, 2013 at 9:41pm EDT

I get the head in a vise thing with LP. Ringing and tingling were worse with HP, but Diamox has those side effects, too.

Wednesday, May 8, 2013 at 10:26pm EDT

I understand how someone in severe Chronic Pain feels so bad that they consider suicide. I do not condone those people.

[I do not understand, perhaps she meant ‘condemn’ rather than ‘condone’?? She supported people’s right to die.]

Thursday, May 9, 2013 at 5:50pm EDT

I see Dr. Schievink on the 28th, the day after Memorial Day. I talked with Mom. She fell twice last night. Once she didn’t go the whole way down. The other time she did. Dad had to pick her up. I told her that Dad picking her up will make his hernia worse. He got his hernia from lifting her, but that is another story. She needs in-home assistance, or to go into a home. Neither of which she liked…

Thursday, May 9, 2013 at 5:55pm EDT

I personally believe suicide not a cowardly act but a very brave thing to do. None of us know for sure what happens when we die.

[This has me bawling my eyes out. As the grieving husband, I cannot possibly agree with this. She also told me verbally at some point that it is the brave, not the cowardly that commit suicide. Sadly, I did not recognize it as a warning sign. Make sure that you do!

Someone suggested to me to check out the book, Suicide: What Really Happens in the Afterlife? by John Klimo and Pamela Heath. I have not yet read it. Perhaps, if Karen had known of this book and read it, she would still be here?]

Thursday, May 9, 2013 at 6:38pm EDT

Sometimes I wonder if I should go. Dr. S didn’t see anything on my Duke myelogram, but my very low OP and my changing symptoms tell me something is wrong.

Thursday, May 9, 2013 at 7:28pm EDT

Dr. Gray had me stop Diamox in late February. Within 10 day of that, I believe that I blew another leak. The first 4 times in April she patched me, I went back to LP after the Elliot B leaked out. The 5th time she patched me she did not do a lumbar puncture so no Elliot B to pump up my pressure. She randomly patched locations and my pressure went very high for a day then I blew out…

Thursday, May 9, 2013 at 7:35pm EDT

I wish I listened to my body too. [About how much Diamox to take.] Dr. S said my Duke myelogram did not show a leak. That concerns me…

Thursday, May 9, 2013 at 10:00pm EDT

Bob brings his work with him. I still worry about the time he is not physically present. We spent 4 of the last 5 weeks at Duke. My husband got more work done than he would have at work, but his employer likes him physically present, too. I worry that since Dr. S did not find anything on the Duke myelogram that he won’t find anything.

Thursday, May 9, 2013 at 10:51pm EDT

I am scared about the whole process. I sent him an email with a summary of what happened concentrating on last month at Duke. Dr. Gray did blood and glue patches. I believe she patched the wrong areas the first 4 times. The 5th time she randomly patched areas, and HP went out of control 24 hours later. HP was so bad that I had to sleep sitting up. I think that I blew the patch in my sleep. She doesn’t think this could happen. I KNOW it happened. It’s possible that another area of my dura blew out instead, but I think the freshly patched area would be the weakest link. I have a history of HP going out of control while taking 3000mg of Diamox. That happened to me in December and Dr. Gray had to put a hole in my dura. The bottom line is that my pressure was 14.5 when I began seeing Dr. Gray. Now it is 10 and my symptoms are worse. She helped me a lot for several months last fall. I blew holes within 10 days after she had me stop Diamox in February.

Thursday, May 9, 2013 at 11:35pm EDT

I keep a positive attitude toward Dr. Gray. She helped a lot of people. I believe that she can help me again in the future.

Friday, May 10, 2013 at 12:09am EDT

If you have psuedo-chiari caused by a CSF leak. Fix the leak. Your brain will float in CSF again and psuedo-chiari goes away on its own.

Friday, May 10, 2013 at 12:11am EDT

Babies are so sweet and a joy to be around.

Friday, May 10, 2013 at 12:20am EDT

They are such a joy. Watching them explore everything for the first time is utterly amazing.

Friday, May 10, 2013 at 12:43am EDT

[Being asked, “Do you have children?”] Unfortunately, no. I have leaked for 24 years. I am 43. That kind of pain prevented much of a life.

Friday, May 10, 2013 at 2:40pm EDT

All my Duke records for April were on my Healthview account last night. Dr. Gray mentioned the last time that I saw her something about dural reduction surgery. That’s not in my records. If I need that, then my dura stretched so much since February when my pressure was over 16 that I can no longer fill my dura above a 10. I don’t believe it has, but I’ll mention it to Dr. S.

Saturday, May 11, 2013 at 3:12pm EDT

Other than my period starting, I feel the same. Head imploding, blurry vision, nausea, dizziness, and horrendous pain. I feel better lying down than upright. This is definitely LP pain. My LP is very low because the headache is not going away lying down. I’ve had LP for 24 years. My LP began going lower in February, and that’s when the LP headaches while lying down started. Until recently, I had no headache lying down, unless it was HP. HP and LP headaches lying down are different. Mom is falling, diarrhea, and that kind of thing. … I don’t know what I will do if I have to cancel or reschedule seeing Dr. S. Nothing stops the pain. I haven’t found anything that works on my nausea other than several hours of lying down. Breakfast is the only meal that I can eat. My body is the most out of shape physically, than I have been in few years.

Saturday, May 11, 2013 at 3:37pm EDT

We’ll be flying. There will be no sight seeing because I am unable to.

Head imploding, blurry vision, nausea, dizziness, I feel my brain hitting the inside of my skull, and horrendous pain.

My spinal fluid pressure has been going lower in instead of up with an increase in symptoms.

The doctor there is in neurosurgeon, I’ll be admitted to the hospital for tests, and treatment will depend on that. My Mom is in hospice.

Saturday, May 11, 2013 at 3:52pm EDT

People suggest things to me like, “Have you tried Advil?” or “My cousin’s, Mother’s brother’s Father took this herb and it took away the headache that they had for 2 years.”

Saturday, May 11, 2013 at 4:09pm EDT

I read in Dale Carnegie’s, “How to Win Friends and Influence People” that people spend 90 percent of their time thinking of themselves. People don’t think how their actions will affect others. I must admit, that I consider how my actions affect others more than I used to, because of this illness. Some people think that my illness can’t be as bad as it is. They think that I use my illness as an excuse to get out of doing something. I forgive you for being in a bitter state. We all have those days, or in my case years.

Saturday, May 11, 2013 at 4:18pm EDT

You’re not weird for feeling ashamed. People DO look at us differently and judge us, if they know we are sick. I don’t tell people either for that reason.

Saturday, May 11, 2013 at 4:31pm EDT

I was the youngest. My parent’s always focused on the negative like that. How much does our upbringing affect our illnesses?

Saturday, May 11, 2013 at 4:36pm EDT

How we were treated in our very early years [up to age seven] has a major impact on who we are today. I think our parents did the best that they knew how to, as we do today.

Saturday, May 11, 2013 at 4:47pm EDT

If [doctors] had support staff with communication skills as good as … and an organized system for prescription refills, … could see more patients. Let the support staff handle the parts of the job that do not directly generate income for [the hospital].

Monday, May 13, 2013 at 9:50am EDT

I don’t think that she over patched, but I have no way of knowing. My leak sites used to be in my low back. I don’t know where they are now.

Monday, May 13, 2013 at 9:53am EDT

The whole thing has me so unnerved. That and my Mom being in hospice. My head is imploding, vision issues, dizziness, nausea, horrible headache, and weird things that I know I am forgetting.

Monday, May 13, 2013 at 2:10pm EDT

I am frustrated, too. I am sicker than ever!! When I saw on the forum that Duke is getting new equipment, I thought to myself is this only an equipment upgrade or is something wrong with the old equipment? Something wrong might explain why my new myelogram is no different than my old???? Something is wrong, my pressure going down and symptoms increasing doesn’t happen for no reason at all.

[It was an upgrade.]

Monday, May 13, 2013 at 2:25pm EDT

I don’t know how I will make it… Every time the phone rings it is scary with all my parent issues. If my pressure wasn’t going down, I would think some of my symptoms were emotional. The pain is horrendous and my nerves are shot.

Monday, May 13, 2013 at 2:33pm EDT

I am sure it is LP. My head is imploding, eyes are being sucked in, and many other symptoms. My appointment is the 28th.

Tuesday, May 14, 2013 at 5:31pm EDT

Things are crazy around here with my Mom having hospice care at home. Her MRSA. She keeps falling among other things. Dad and his hernia, which I believe it got from lifting her.

My intracranial pressure is not staying up, and that makes it so had to be in the upright position. I don’t know what I will do if I have to change my appointment because of Mom or Dad.

[Wasted worry. Mom and Dad lived longer than Karen. Sept./15/2013.]

Tuesday, May 14, 2013 at 8:08pm EDT

I feel my brain sinking into my shoulders. I was fairly stable over the years, until recently.

My head is imploding. My vision is blurry and/or double if I am up too much. I am dizzy. The pain is horrendous. I am sure that I am missing symptoms.

Every time the phone rings it’s usually bad news with my parents. Mom is in hospice and Dad has a hernia. My Mom has advanced pulmonary fibrosis, or scaring of the lungs and MRSA in her lungs. She is on oxygen 24/7. She’s had strokes and heart attacks in the past. She has inoperable heart blockages. I’m afraid that if Dad has surgery, he will get MRSA in his incision. I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don’t know what I will do if I have to change or cancel my appointment with Dr. Schievink.

My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure.

Tuesday, May 14, 2013 at 10:26pm EDT

… I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don’t know what I will do if I have to change or cancel my appointment with Dr. Schievink. My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure. [Wasted worry. ]

Wednesday, May 15, 2013 at 8:05pm EDT

I feel your anxiety. I am SO scared between this and my parent issues. I think that I am going insane!

Wednesday, May 15, 2013 at 8:10pm EDT

Thank you for your encouraging words. Everyday I think about giving up. This is a daily struggle.

Wednesday, May 15, 2013 at 8:12pm EDT

Struggling with this for 24 years, I don’t think that I will ever get my life back. Not much is known about this illness for short term leakers, let alone long term leakers.

Wednesday, May 15, 2013 at 8:13pm EDT

It’s a weird condition that very little is known about. We are the research. I try to remain positive, but it is so hard. I am better than I used to be.

Wednesday, May 15, 2013 at 8:17pm EDT

I meant better with being positive. I am not better physically. I am worse.

Wednesday, May 15, 2013 at 8:19pm EDT

My symptoms are horrendous head pain, head imploding, nausea, vision issues, dizziness are all present daily. Caffeine, and the binder help, but do not totally relieve the symptoms.

My eyes are light sensitive. Every time I move my head, I am slightly dizzy, my eyes go funny, and my brain feel like it is hitting the inside of my skull. After lying down all night, I can eat a full meal at breakfast. Not so with lunch or dinner. Zofran and Promethazine do not help.

Your brain might be compensating by making extra CSF, rather than leaking less. I am an emotional train wreck, too. I need to get off here now. I will be back on tomorrow.

Wednesday, May 15, 2013 at 11:23pm EDT

Dr. Gray adds Elliot B prior to her myeologram, so that should help to find leaks. I am not thrilled with the idea of surgery, but I haven’t had long term success with patches. … I have no idea how many cysts that I have. For me, I cry because I feel so helpless. I do what I can for myself. Others simply don’t get it. I look fine, therefore, I do not get help around the house, even if I need it. My parents have a new horror story almost every day. I worry so much that their health issues will interfere with my trip to L.A. I firmly believe that LP negatively affects our physical, as well as mental health. I get upset with myself for crying, which only makes me more upset. LP makes me feel lethargic, dizzy, nauseated, and gives me trouble with my vision. Breakfast is the only full meal that I can eat. I can eat a few snacks throughout the day. Much more than that makes me want to throw up. Medication for nausea doesn’t help. Dr. Gray sent me an email today asking me how it was going. I told her how I felt and that I was going to see Dr. Schievink.

Thursday, May 16, 2013 at 6:41pm EDT

I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don’t have friends that can help. They are long gone. The couple local friends that I have, have their own Chronic Pain/health issues that prevent them from helping.

Thursday, May 16, 2013 at 7:36pm EDT

I am drinking as much as I can.

[On a hot day it seemed like she would drink a gallon or two of water.]

Dr. Gray thinks that I need dural reduction surgery. I am not sure that I agree with that. She had to put a hole in my dura in December because my pressure, or in my case volume was too high. The 5th time she patched me last month, I felt good for 24 hours, developed HP the next 24 hours which Diamox every three hours did not control. I had to sleep sitting up. I went back to LP during that night. Dr. Schievink doesn’t see anything on the Duke myelogram that I had last month. I know he does other tests, but not seeing anything on Dr. Gray’s myelogram concerns me. I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don’t have friends that can help. They are long gone. The couple local friends that I have, have their own Chronic Pain/health issues that prevent them from helping.

Thursday, May 16, 2013 at 7:39pm EDT

Not focusing on myself so much with my health issues helps me.

I may not be able to do things physically, but I like to stay up to date on what happens in others lives.

Thursday, May 16, 2013 at 9:17pm EDT

Sorry that I have not gotten back with you.

Things are crazy here getting ready to go to Cedars from Pennsylvania and with my parents health issues. I can’t remember if I told you but my Mom is in hospice.

I imagine it is traumatic for older folks when they need in-house help or a nursing home. The independent part of their lives is gone forever. The ‘care’ received in most nursing homes isn’t great. The staff may be well-intentioned but the staff to resident ratios are way too high to give good care.

This stresses out the workers, and that stress makes them treat patients badly. I am not saying all workers are like that, but I think most are.

Thank you for thinking and praying about me every day. I appreciate it.

Thursday, May 16, 2013 at 9:30pm EDT

I googled lumbar catheter placement. It’s a lumbar drain. I hope that I don’t get a leak from that. I don’t know if he will do surgery or patches. I posted a message on the Dr. Schievink forum talking about my appointments at Cedars. To say that I am scared is an understatement! These procedures are all weighing the risks or complications verses benefits.

Thursday, May 16, 2013 at 10:47pm EDT

Since I decided to see Dr. Schievink, I have been mostly quiet on that forum.

I am more active on the forum for Dr. Schievink’s patients.

Sometimes words in text come across differently than the same thing said in person. In person, you can read body language and voice inflections.

That said, the three subjects, money, religion and politics usually cause friction in a conversation. I am going to bed in a few minutes. Tomorrow, I will get the local testing that Dr. Schievink wants.

Thursday, May 16, 2013 at 10:50pm EDT

I get it. Healthy people think things are easy to fix. Things don’t work like that…

[How do we get the healthy people to understand?]

Friday, May 17, 2013 at 7:09pm EDT

I feel like I am about to explode from the stress of my parents, and my own health…How much can a person take? I heard from … Dr. Schievink’s scheduler. My appointment to see him on Tuesday, the full spine myelogram later that day, and the infusion the next day, in addition to dural reduction surgery on the 31st are all scheduled. I had my pre-op tests today. My PCP has no openings until next Thursday. I need him to fill out the paperwork for my appointment the following Tuesday. That weekend is Memorial Day. I am frightened that the paperwork won’t be done on time. If it’s not, than Dr. S won’t do anything and all the money spent going to him is wasted.

[Paperwork did make it in time, didn’t like it at all that it was last minute.]

Friday, May 17, 2013 at 7:16pm EDT

I will stress it with him at my appointment. Dr. Gray suggested dural reduction surgery to me. I assume told him? Frankly on http://www.cfsleak.org had dural reduction and it helped her.

Saturday, May 18, 2013 at 10:58am EDT

I am not sure if I wanted dural reduction surgery. I am not sure that, that’s what I need. I hope his tests show something that can be fixed without that kind of surgery.

Saturday, May 18, 2013 at 11:00am EDT

I need to talk with him about how I reacted differently the fifth time Dr. Gray patched me last month, but I quickly blew out from HP. I believe that is a clue to where I am leaking.

Tuesday, May 21, 2013 at 4:03pm EDT

[Anyone know anything about this, like a link to the video?]

I didn’t watch it, but I heard that the show Royal Pains on USA network ended last season with the main character having a spinal fluid leak. This is exciting, considering that leaks are under recognized in the medical community, let alone rarely appear in entertainment. He had a blood patch and immediately felt better, but went to a wedding that night. Anyway, I don’t know if they’ll carry it over to next season, June 12th, but it ended with him having neurological complications from the spinal fluid leak. Great for awareness of this condition!

Wednesday, May 22, 2013 at 6:05pm EDT

I am very scared, but I am more scared of doing nothing I worry that he won’t find the leak since he did not see anything on my Duke myelograms. I don’t know how long I will be in the hospital.

Thursday, May 23, 2013 at 2:32pm EDT

When we get back home, my husband will not be here 5 days a week for 12 hours because he will go back to work. One or two nights a week, he spends all night with his Mom. He takes is work with him when we go on trips, but when he is home, they want him physically present.

Thursday, May 23, 2013 at 2:33pm EDT

My hubby won’t be around much to help when we get back home. They want him present at work.

Thursday, May 23, 2013 at 2:56pm EDT

I don’t watch TV so I have no idea what is on. Sometimes I believe that I am not making this up. Other times, I am not so sure. No one physically around me understands if I say anything about how I feel. I put on a happy face. They have no idea how hard my activities of daily living can be. I have neck pain and stiffness with HP and LP. It’s worse with LP. What can I search for on YouTube to see the funny and touching videos?

Thursday, May 23, 2013 at 10:15pm EDT

If I had surgery in L.A., I’d probably be home about a week later. Do you know of any organizations that could help me after I get back home. I won’t need 24 hour care, just help with things like shopping, cleaning, etc.

Arrive in L. A.

Monday, May 27, 2013 at 2:04pm EDT

I am at the hotel in L.A. Being upright past my limit on travel day (yesterday) and drinking less than usual so I did not have to go to the bathroom as often flying across the country gave me killer head pain last night, along with worse than usual blurry vision, pressure in ears, dizziness and nausea. When I got to the hotel, I lied down and kept drinking as much as I could keep down. I was afraid that I would go to the ER here for the nausea but managed not to. I drank a total of 48 ounces of water over a period of 5 hours before I had to urinate. The plane ride was okay, other than the first class seats did not recline very much which meant I had to stay upright. I couldn’t have done coach.

We flew Airtran from Pittsburgh to Atlanta, Atlanta to L.A.

[It was the least cost flight. In all her pain she always remained frugal.]

Going home, especially if I have surgery, I’ll get a non-stop flight. Since I don’t know when I will go home, we bought a one way ticket here. We’ll by another one way ticket to go back home.

The Super Shuttle driver that brought us to the hotel from the airport gave us the most terrifying ride that we ever had. Fast stops, slamming brakes on, changing lanes without checking the blind spot, and backing onto the road without looking. another passenger said that he could leave them off right there. The driver took that literally and slammed his brakes on in the middle of the 4 lane highway causing the cars behind us to skid. Our driver took up both lanes going in our direction when he stopped. The passenger that wanted off told him to pull into the driveway to let him off. If I have surgery, I can’t ride with someone that drives like this back to the hotel or airport. I’d rip the incision open. This is L.A., and people may drive different than at home, but come on.

[We were told later, this was NOT normal for a shuttle driver.]

I see Dr. Schievink tomorrow. After the appointment, I have a full spine MRI with myelography. Wednesday, I’ll be admitted to the hospital for infusion therapy. Surgery is scheduled for Friday, if he does it. I talked with Mom today. She’s running a fever again, her oxygen level is low. She is very confused. I told her 25 times or so that she will be in bed tomorrow before I am done with the tests. L.A. is three hours behind home. She couldn’t understand what I meant. She’ll probably call tomorrow and not understand why I am still having tests.. She has advanced pulmonary fibrosis and MRSA. I internalize a lot of my stress, anxiety, feelings about this illness, etc., because others don’t understand. …

The doctor at the pain clinic required me to [see a psychologist at the pain clinic]. I leaked for almost 24 years and counting. The therapist thought that I practice sick behavior for attention. Talking with her about things that I want to do, but physically can’t, just left me more frustrated. She didn’t believe that I physically couldn’t. She fired me when I told her that I was going to Duke. She tried everything that she could to get me to change my mind about Duke. When I refused to, she fired me. How come? Was she afraid that she would be proved wrong? Any good therapist would keep an open mind to learning about difficult cases. Dr. Gray proved that it is intracranial hypotension. At home I spend most of my time alone struggling to do what I need to do. I drag others physically around me down with my problems. They want to do their own thing, and not deal with someone always sick. I will talk with a trained professional again, ONLY if they know about CSF leaks or are open to learning about CSF leaks and the effects they have. I have no idea how to know this before seeing someone, which is why I haven’t. … Sorry for writing a book. Karen

[Do these psychologists exist? Ironically, you are now reading her book.]

Monday, May 27, 2013 at 6:36pm EDT

I am saddened that you are nauseous and pain medication is not working well. hope that you feel better soon. I read that originally you planned to go home today?

How did you get from the airport to the hotel? How will you get back to the airport? I ask because we had a bad experience with Super Shuttle.

[After this, we took a Taxi everyplace. I later found it was actually cheaper to take a limousine than a taxi.]

Monday, May 27, 2013 at 9:13pm EDT

Will your air plane seat going home be a lie flat seat? I will need a straight through flight from LA to Pittsburgh. The only airlines that offer that is United and US Air.

I’m terrified that I’ll get a seat that doesn’t recline very much. I bought one way first class tickets on AirTran coming here. It’s a discount airline so I can’t complain much, but I expected the seats to recline more.

Tuesday, May 28, 2013 at 1:02pm EDT

Being up past my limit always makes me sick. I’ll take care of myself as good as I can. I see the doctor today. Unless he changes his mind, I’ll be admitted to the hospital tomorrow. He’ll infuse artificial spinal fluid to get an idea where my pressure should be.

Tuesday, May 28, 2013 at 10:36pm EDT

I saw the doctor, and had a full spine MRI with myelography today. The plan is to admit me in the morning. Infuse artificial CSF to find where my pressure should be. Before possible surgery on Friday he wants another myelogram to see if he can locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules surgery for out of town patients because it’s easier to take surgery out of the schedule if I do not need it than to add it. I have to be at the hospital tomorrow morning at 10am for more blood tests. The infusion is scheduled to start at 1pm. If he does surgery Friday, I’ll be in the hospital for approximately 4 days afterwards, and stay at the hotel for about 3 days after that.

Tuesday, May 28, 2013 at 10:52pm EDT

The taxi drivers today were much better. I saw Dr. Schievink, and had a full spine MRI with myelography. The plan is to admit me in the morning. Do infusion therapy. Before possible surgery on Friday he was going to do another myelogram to see if he could locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules all that for out of town patients because it’s easier to take it out of the schedule if it turns out that I do not need surgery than add it. I was supposed to get my blood typed today but there was not time. My appointment with Dr. Schievink was 12:45. I got out of his office at 2:50. I went to the lab for the blood test but two patients were ahead of me. I didn’t have time to wait. I had to be at the imaging center at 3:30. I didn’t get out of the imaging center until almost 6pm. The lab closed at 5:30. We’ll go early in the morning for that test. I hope that doesn’t screw up the lumbar catheter placement that’s scheduled for tomorrow. I have to be at the hospital tomorrow morning at 10am for more blood tests. Lumbar catheter placement is scheduled at 1pm. If he does surgery Friday, I’ll be in the hospital for approximately 4 days afterwords, and stay at the hotel for about 3 days after that.

Tuesday, May 28, 2013 at 11:09pm EDT

The MRI was almost 2 hours. About 2/3rds of the way through the test the tech injected contrast into my arm. I’d rather he find leaks on the tests than do dural reduction surgery. Infusion therapy is where I am an inpatient and he infuses artificial CSF over a period of a couple days to find where my pressure should be. I am very scared. His nurse did not know what Elliot B was. … The running around hasn’t been too bad. We are at the Elan. Renting a car and paying to park would be so much more expensive than a taxi. A taxi including the tip is 7-8 dollars one way to the hospital. The hospital is only a few blocks away. Bob walks when I am not with him.

[The good thing is I lost some weight. I thought about buying a bicycle until I saw a hit-and-run take out a fellow on a bicycle right across the street from me.]

Tuesday, May 28, 2013 at 11:26pm EDT

Someone said Cedars had free WiFi. When I am under the effect of drugs, I won’t be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will.

[I set up an encrypted tunnel so that we could use these ‘free’/’open’ WiFi’s without worrying about having our identity or something stolen. Always something to be aware of.]

Tuesday, May 28, 2013 at 11:28pm EDT

I don’t have all my teeth. I had my wisdom teeth and 5 others removed when I was in high school before I got braces. I don’t know for sure how long I will be here. [I really don’t know why she said that at this point, there was no context for it at all. Medication?]

Wednesday, May 29, 2013 at 2:03am EDT

When I am under the effect of drugs, I won’t be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will.

Wednesday, May 29, 2013 at 7:45pm EDT

I don’t know if they are doing surgery for sure. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I’m afraid that my pressure won’t be high enough to show leaks, if the resident doesn’t hook it up until very late tonight.

Wednesday, May 29, 2013 at 7:51pm EDT

I read that when pressure is very low from the leaks, the leaks won’t show up. When you increase pressure, the leaks show.

Wednesday, May 29, 2013 at 7:52pm EDT

They put in the lumbar drain. I am waiting for the resident to hook up the infusion pump. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I’m afraid that my pressure won’t be high enough to show leaks, if the resident doesn’t hook it up until very late tonight.

Wednesday, May 29, 2013 at 8:52pm EDT

I am still waiting for the resident to start the infusion. My headache is unchanged because I am in still in LP. I’ll be able to sleep with the drain. I hope the drain does not create another leak site.

Wednesday, May 29, 2013 at 9:12pm EDT

One of the other doctors told me that they would increase the amount of fluid every 12 hours. If my headache changes from a LP headache to a HP headache to let them know. They would reduce the amount of fluid. I afraid of the drain site causing a leak. They used a 14 gauge needle because the catheter has to fit through the needle.

Wednesday, May 29, 2013 at 10:02pm EDT

I have pain but not any more than I am used to. I am allowed to have the good drugs if I want them but I don’t like the way they make me feel. If I use medical language that you do not understand, please correct me. The infusion is a diagnostic procedure. They just started the infusion. Even if he figures something out. Surgery is not clear cut. It depends on the quality of my dura, what type of cyst is leaking, where the leak is located, and how many leaks there are. Can’t assume just one leak. It’s not a quick easy fix because of rebound high pressure. Rebound high pressure has it’s own very painful 24/7 symptoms with the risk of blowing holes in you dura. I blew holes over the winter after the doctor at Duke patched me.

Wednesday, May 29, 2013 at 10:10pm EDT

I am in room 8110, one of the suites. I didn’t request it. I hope that my insurance… pays for it. The doctor just started the infusion at 2.5 cc per hour. At midnight, they will change it to 5cc per hour. I am supposed to get a myelogram tomorrow. I have not heard about the MRI with myelography from yesterday.

Wednesday, May 29, 2013 at 10:16pm EDT

I don’t know when they will let me know for sure about surgery. I could use good news…

Thursday, May 30, 2013 at 1:44pm EDT

Thursday, May 30, 2013 at 1:46pm EDT

I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.

Thursday, May 30, 2013 at 1:53pm EDT

My headache eased until about midnight, then got worse. They upped the infusion from 2.5ml to 5ml around midnight. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they put it up to 7.5. They backed it down to 5ml. I get hormonal headaches at that time of the month that overlay my postural headache. I think that I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.

Thursday, May 30, 2013 at 2:03pm EDT

Please let me know if you don’t understand what I am saying. They hooked up the CSF infusion last night and that eased my headache until midnight. They upped the infusion rate at midnight, too. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they upped the rate a second time. They lowered the rate. To complicate matters I get hormonal headaches at that time of the month that overlay my daily headache. I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my mid back, but wants to rule out that the spot is not a shadow. I hate my hormones!!!!!!!!

Thursday, May 30, 2013 at 2:26pm EDT

Sending me flowers is much appreciated! They brighten my room!

[Have you brightened anyone’s day with a random act of kindness recently?]

Karen in LA with flowers

Friday, May 31, 2013 at 1:13am EDT

Now the MRI and myelogram will be in the morning. Probably followed by surgery. My hubby will do updates but I don’t know how often.

Friday, May 31, 2013 at 2:36pm EDT

I had a full spine myelogram a couple days ago. The original plan today was to have a CT myelogram and another thoraric MRI. When I got back to my room, before I lied down, I decided to use the restroom before lying down. Bob went to find one, too. At this point, Dr. Schievink came in the room. The only thig we know is that surgery is canceled for today. He wants to do a special kind of myelogram Monday, and surgery Tuesday. What other kind of myelogram does Cedar’s have, other than Digital Subtraction? They took out the lumbar drain. I’m afraid that may cause another leak since Cedars doesn’t routinely do blood or glue patches on those. The next problem is all the hotels around the hospital are booked after the end of our reservation at Elan on the 12th.

I am being discharged.

Friday, May 31, 2013 at 6:07pm EDT

I may post later on the group about this. I am being discharged. I will come back Monday for a DSM, with possible surgery scheduled for Wednesday. He thinks he sees an abnormality in front of T2.

Friday, May 31, 2013 at 7:08pm EDT

Monday, I am doing the DSM as outpatient. Depending on the results of the DSM, I will be admitted on Wednesday. I feel the same, LP. I felt better with the infusion. After they injected 20cc of dye for the myelogram, I had very HP for about an hour, then LP.

Friday, May 31, 2013 at 7:21pm EDT

I am scared.

Friday, May 31, 2013 at 11:13pm EDT

The nurse gave us a prescription for Keppra when I was discharged. The change of plans surprised me today. I was scheduled for dura reduction surgery. … Waiting and having the right surgery is better than having an unnecessary surgery.

Saturday, June 1, 2013 at 12:11am EDT

I feel the same. The infusion helped while they were doing it. 2.5ml felt like it was not enough and 5ml was too much. When they injected 20cc of dye for the CT myelogram, I got VERY hp. I was back to LP within 2 hours of that! After they did the myelogram, they took me to a holding area for about an hour before they did the CT part.

[We waited far too long in this holding area! Not sure the doctors understand what is going on in this area of the hospital!]

I feel that most of the dye leaked out in that time.

[Making the test useless!]

I arrive at 11am on Monday. The DSM is 1pm. If I have surgery it will be Wednesday. I won’t lie, I am VERY scared.

Saturday, June 1, 2013 at 1:35am EDT

… From looking at my paper, it doesn’t look like it is a DSM. Maybe waiting an hour between the myelogram and CT portion of the test has something to do with what he ordered. When they injected 20cc of dye, HP got really bad, but went back to LP in about 2 hours.

Sunday, June 2, 2013 at 10:41am EDT

You could bring Bob something. I eat nearly nothing. I throw it up. The nausea is so bad. It was like this at home, too. The nausea medications don’t work for me. I am lying flat most all the time.

Sunday, June 2, 2013 at 10:46am EDT

He likes healthy food. While on the CSF infusion, I had a good appetite.

Sunday, June 2, 2013 at 12:11pm EDT

Thanks for your call yesterday.

[Give someone a call. Brighten their day!]

Monday, June 3, 2013 at 10:31pm EDT

Digital subtraction myleogram didn’t show any leaks today. They injected at L2 L3 no leaks were shown. Dr. Schievink was in surgery. The resident didn’t call until after Dr. Schievink’s office hours to tell us to make an appointment in the office. So discouraged.

Monday, June 3, 2013 at 10:37pm EDT

Someone, I assume the radiologist said that it takes two digital subtraction myelograms to image the entire spine. They injected at L2 L3 and said it would reach T2. Do they inject around the same general area when they do the low back, too.

Tuesday, June 4, 2013 at 1:09am EDT

He said my Duke myleograms were normal and other than that spot my MRI was normal. Maybe I’m just crazy and making this up.

Tuesday, June 4, 2013 at 12:37pm EDT

The digital subtraction myelogram yesterday did not show a leak.

[Karen was devastated by this. This is one of the main reasons she went to LA. We need better imaging technology. I’ll address that elsewhere.]

That test shows only fast leaks. I have not talked with the doctor. I received an email from him talking about proceeding with the original plan, dural reduction surgery. That involves cutting off the back of several vertebra and making the dura smaller. The tests are suggestive of my dura being stretchy. A stretchy dura is a poor quality dura prone to develop leaks.

Tuesday, June 4, 2013 at 1:31pm EDT

[Dr.] replied to my email. He said no more tests. We could proceed with dural reduction surgery tomorrow. He said we’d talk this morning. I have not talked with him.

Tuesday, June 4, 2013 at 1:39pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He can’t find objective signs of a leak, although my symptoms suggest it. She said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I’ll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 1:45pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He can’t find objective signs of a leak [How could you, due to that long wait in holding!], although my symptoms suggest it. She said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I’ll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 1:52pm EDT

I am terrified. I think he is removing the lamina of L3, L4, and L5. I am holding up as well as I can. Easier said than done.

Tuesday, June 4, 2013 at 2:04pm EDT

I’m not sure if he did a new brain MRI when he did the full spine MRI. I had a brain MRI over a year ago and it was normal.

Tuesday, June 4, 2013 at 2:09pm EDT

Dr. Schievink did exploratory surgery to find you leaks. Did any object signs, such as fluid pockets show up on any test? I am supposed to be at the hospital at 6:15 for an 8:15 dural reduction surgery. He can’t find objective signs of a leak, although my symptoms suggest it. He said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I’ll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 2:12pm EDT

He’ll do dural reduction surgery. My hubby is stressed, as I am. I wish that I had something for anxiety, but I do not.

Tuesday, June 4, 2013 at 2:13pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. No guarantee this will work. I am terrified.

Tuesday, June 4, 2013 at 2:21pm EDT

Elan does not have a kitchen.

[I used the microwave in the lobby to heat Amy’s TV Dinners.]

… We have a refrigerator. A microwave is in the lobby for our use.

Everywhere is booked up next week for the convention, except the cheap place with bad reviews that I mentioned on the Dr. S group. We’ll have to stay there next week.

[It was not as bad as the reviews. I understand they have raised their rates.]

Tuesday, June 4, 2013 at 2:34pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He is going to remove some bone off the back of the vertebra in my low back and reduce the size of my dura to prop up my pressure. No guarantees this help.

Tuesday, June 4, 2013 at 6:48pm EDT

I am here physically, but mentally I am gone. My hubby is here. [Medication and exhaustion.]

Tuesday, June 4, 2013 at 7:08pm EDT

The lumbar spine has the most hydrostatic pressure when you are standing. That’s why he goes there. That location can stretch from the hydrostatic pressure causing LP. He doesn’t know where I am leaking. The tests are all normal. He said in his research that leak sites cannot be found in some people with LP. Maybe I am just crazy and lazy.

Tuesday, June 4, 2013 at 9:39pm EDT

I told my hubby to email updates. I don’t know how often he will. There’s no guarantee the surgery will help.

Tuesday, June 4, 2013 at 9:48pm EDT

I’ll be home long before I am healed. The most difficult part and lonely part of recovery will be after I am home.

Wednesday, June 5, 2013 at 8:34pm EDT

Karen’s husband, Bob here. Karen had her surgery today. Seems to have went well, on too much pain meds to tell for sure for a day or two. They said that she could probably leave the hospital on Saturday if no complications appear. Will have to stay in hotel for a few days before flying. They removed part of her dura in the area of L2/3/4, [She told me later I had that wrong, always take written notes! It was the plan, no one told me the plan changed during the surgery.] and parts of those vertebra to access those areas. The idea is that by making her dura smaller, it will match the amount of fluid that her brain produces. This will get the brain floating like it should.

Friday, June 7, 2013 at 12:00am EDT

Bob, here. She has been sleeping most of the day. She did take a short walk and is setting up in a chair to eat now. Undecided about the headache pain yet. He only found funky dura. I asked Dr S. how her Dura looked. He said it was ‘abnormal’. When I asked what ‘abnormal’ meant, he explained that it doesn’t look normal in people like Karen that had leaks for a long time. They send the Dura away for tests. However they don’t know what to test for so the tests don’t find anything. It is my conjecture that what they are seeing is damage caused by the fluoroquinolone antibiotics.

Karen has suspected connective tissue issues. Not sure how relaxing at hotel will be. We need to change hotels on Tuesday, to the … up the street. Don’t fall in to the trap that we are ruled by our genes. Look up Epigenetics. Bruce Lipton is a good place to start.

Saturday, June 8, 2013 at 7:12pm EDT

Bob, here. She is back in hotel now. Still sleeping.

Saturday, June 8, 2013 at 7:35pm EDT

The E3 Game Design convention is what has all the places booked.

Saturday, June 8, 2013 at 11:21pm EDT

Saturday, June 8, 2013 at 11:33pm EDT

I don’t know what’s next. I see him next week. The lumbar puncture with an 18 gauge needle and 14 gauge drain were at L2/L3. He didn’t do surgery at that level. I am not sure of his reasoning, he doesn’t seem inclined to patch those for 3-4 weeks post surgery. I’ll be home by then.

Saturday, June 8, 2013 at 11:54pm EDT

I understand a DSM needs a larger needle. I don’t know why Cedars uses a bevel 18 gauge and not a pencil point 18 gauge. I asked. I’ve seen the studies were blood patches are not as effective if they are done immediately after a procedure. I have no way of knowing if patching is needed for sure. I still have a low pressure headache, although it’s not as bad as before surgery. Those holes seem like the most likely places that would be leaking now.

Pandemic logo

http://www.pandemicofdenial.com movie

Sunday, June 9, 2013 at 11:03am EDT

It’s me. I am back at the hotel. My head is better, although still not as good as I hoped.

[Karen wrote this note to take to Dr. Schievink so she would remember what she wanted to talk about. Note the part about taking Diamox stretching her pain limit; that becomes significant later.]

Doctor S. Notes

Sunday, June 9, 2013 at 4:07pm EDT

He did a dural reduction only at L4, L5. He didn’t do the other levels. Headache is still better lying down, so I am still in LP just not as low as before. The surgery pain, although bad, doesn’t concern me as much as the headache. I don’t know what’s next. I see him next week. The lumbar puncture with an 18 gauge needle and 14 gauge drain were at L2/L3. He didn’t do surgery at that level. I am not sure of his reasoning, he doesn’t seem inclined to patch those for 3-4 weeks post surgery. I’ll be home by then. Since he didn’t find any leaks, I am guessing that I may be leaking here. Others have asked him for recommendations for doctors after they got back home. He’s told them to find one, and he will work with them. I have no idea where to look because my doctors at home don’t believe in leaks.

Sunday, June 9, 2013 at 5:54pm EDT

I am a little disappointed. I cannot get the 14 gauge hole from the lumbar drain and 18 gauge hole from the DSM patched for 3-4 weeks. I expected at least some HP headache. Because he did not find any leaks, I believe these holes are leaking which is why I have no HP. My LP headache is better, but still there. That part is good. If it doesn’t get better in time, then what? I’ve got no one at home to follow up with. I thought they would patch the holes for the lumbar drain and DSM. That was a 14 gauge hole. The hole for the DSM was 18 gauge. Both were bevel tip, and not pencil point needles. I understand the need for the larger holes but they won’t patch them for 3-4 weeks. I won’t be here then. I don’t think Dr. Schievink understands how difficult it is to find someone to follow up with. I get the feeling he thinks any anetheologist can patch those holes. Technically, that may be true but I want the blood patch under CT guidance so I don’t get another hole. [UPMC did use CT guidance.] The doctors at home think I am nuts. Dr. Gray referred me here, so I have nowhere to go for after care if those holes need patched. I am screwed.

Sunday, June 9, 2013 at 6:13pm EDT

I am 10 hours away from Duke. I don’t want to go into very HP either, but this is not HP. … I struggle with giving up because of not being able to get a patch, and not having post op care for that issue after I get home. The pain from the surgery is manageable.

Sunday, June 9, 2013 at 6:36pm EDT

Well, I can’t keep putting my Bob through all this crap dealing with these leaks.

[My current condition of crying all the time is an improvement??? I LOVE YOU!]

I have to stop somewhere. I would feel so much better if I a backup plan for a possible patch in 3-4 weeks. I don’t have a plan and I can’t adjust to that.

Sunday, June 9, 2013 at 6:43pm EDT

I asked last week. He wants to give your body time to heal after surgery without throwing you into HP.

Sunday, June 9, 2013 at 7:29pm EDT

I am happy that my LP headache is not as bad, but it’s still LP that comes on as soon as I am upright. The tests showed no leaks, which is why I believe my remaining symptoms come from the punctures. I’ve had HP headaches with Dr. Gray. That is not what I have now. Getting post op care at home is not easy because my local doctors do not believe in leaks. I’m not sure Dr. Schievink understands my local doctors resistance. If I did not need a patch in 3-4 weeks great, BUT I’d feel so much better if I had a backup plan where I could get a patch in 3-4 weeks. I don’t have one. Flying 3000 miles back to Cedars for a patch is not practical. The pain from the surgery is manageable.

Sunday, June 9, 2013 at 11:48pm EDT

It’s me. I am back at the hotel. My head is changing. I can’t even dress myself right now. Recovering from the surgical pain will be the easy part.

Recovering from the spinal fluid issues will take about a year, and longer than that if I have more surgery.

Monday, June 10, 2013 at 5:30pm EDT

The research into chronic spinal fluid leaks is in its infancy. Not many doctors believe that someone can live with pain that severe for so long. He allows flying so soon after surgery, so that is not a problem. What [doctors don’t] understand is how backwards medical care is in PA, even in Pittsburgh. Duke and Cedars have so much more.

Tuesday, June 11, 2013 at 9:02pm EDT

My reports from Cedars all say no significant cysts found. Dr. Schievink doesn’t want to be very aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don’t feel better in 3-4 weeks, he would consider the patches. I told him that I had no idea what doctor to see closer to home. He didn’t directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow.

Tuesday, June 11, 2013 at 9:06pm EDT

My head doesn’t feel better yet. It will take time to know how successful the surgery will be. Dr. Schievink doesn’t want to be very aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don’t feel better in 3-4 weeks, he would consider the patches. I told him that I had no idea what doctor to see closer to home. He didn’t directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow.

Tuesday, June 11, 2013 at 9:12pm EDT

My head doesn’t feel better yet. It will take time to know how successful the surgery will be. Dr. Schievink doesn’t want to be too aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don’t feel better in 3-4 weeks, he would consider fibrin and or blood patches. I told him that I had no idea what doctor to see closer to home. He didn’t directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow. I can’t even dress and undress myself. I’ll find a way to manage at home.

Tuesday, June 11, 2013 at 9:33pm EDT

Orthostatic headaches are not always from CSF leaks. My headache went away with the infusion and when Dr. Gray added Elliot B, so CSF pressure is involved even if it is not a leak.

Wednesday, June 12, 2013 at 1:02am EDT

Dural reduction surgery should take care of increased compliance of the lower CSF space.

Wednesday, June 12, 2013 at 10:20pm EDT

I just sent this message to Dr. Schievink… We flew home today. We had first class tickets, a non-stop flight and wheelchair assistance. My headache, eye and ear symptoms are now as bad as they were when we flew out to CA. My surgical pain is manageable. The headache is not. What should I do?

Wednesday, June 12, 2013 at 10:24pm EDT

I strongly believe that I am leaking where the lumbar drain and 18 gauge needle for the DSM were used but he won’t treat those for 3-4 weeks.

Wednesday, June 12, 2013 at 11:52pm EDT

Zzzzzzzzzzzz ZZZzzzzzzzzzzz. That’s the sound of Fukitol helping us sleep. Fukitol is the best drug known to man!!!! We came home today.

[We had no choice. There was a game convention in town, all hotels were booked a year in advance. We had no place to stay. We thought that we should stay. Relatives in the area were out of town.]

My headache, eye and ear symptoms are now as bad as they were when we flew out to CA. My surgical pain is also a problem. I strongly believe that I have new leaks where they punctured my dura for testing. They used large needles that statistically cause additional leaks.

[As usual Karen had studied every detail. She believed a needle this big would cause a leak that would not heal for her. She asked everyone why they used such a large needle, and something about the type. Beveled Point? I do not recall if that is good or bad? Sadly, no one really took her seriously. She asked many people, they simple did not know how to respond to a patient with this level of education to question a procedure. Different hospitals do it differently. Ask why holes from procedures are not repaired. There may be good reason, there may not, at any rate have the discussion.]

LAX TSA

Wednesday, June 12, 2013 at 11:36pm EDT

He didn’t find a leak in surgery. He did dural reduction surgery.

At LAX on the way home today, I had wheelchair assistance.

Always ask for wheelchair assistance! At any airport, the pushers know the shortcuts around the airport!

They [The TSA] wanted to pat me down INCLUDING my incision for security. They weren’t happy just viewing it. My incision is too tender for anyone to pat. I didn’t want an infection from their dirty hands touching it either. They weren’t backing down, and I wasn’t either. They had three security officers with me!

[There were far more than three. I was dealing with the luggage at the X-Ray machine watching this unfold from a distance and could not help.]

Finally, I asked if they would allow me to go through the walk through scanner and NOT pat my incision. They allowed that. Apparently, they did not think that I could walk at all so did not offer me the option of walking through the scanner.

[They kept asking her to reach above her head to hold the bar. She could not do that due to the incision. They finally allowed her to go without stretching to reach the bar. We also had problems from TSA with Joie picking us up at LAX. We could see Joie 200 feet from us. The TSA kept yelling at Joie to leave, and would not let her drive to where we were. Karen was in no shape to walk, she was still in wheelchair. I finally ran down to Joie’s car and started throwing luggage at her car trunk. This confused the TSA and they went away.]

Part of Hubby’s day job is designing battery chargers, this could be us:

TSA Responds to XKCD Bag Check

TSA joke

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