discharged from Cedars today

[spots]

Hi guys,

Just wanted to give you an update on my latest visit. This was visit #3 in 1 month. The good news is my leak is sealed for the moment. The bad news is after my fibrin glue patch on Monday I woke up Tuesday morning with the most unbelievable, excruciating headache I could ever imagine. It felt like my head was going to blow right off, it hurt to touch my eyes, it hurt behind my ears, and my neck was unbelievably stiff and sore, I couln't look anywhere but straight ahead. I developed nausea and vomiting and each time I vomited it made everything 10x worse. Lucky me, I had high pressure along with aseptic menengitis. Dr S was all over it, but the nurses/pharmacy took forever to get the steroids, lasix, and solumedrol to me. Like literally 5 hours! I saw Dr S at 7:30 but didn't get ordered meds until after 12:30. It was a really rough day. But, the great news is despite the vomiting and theatrics, I am still in high pressure, the menengitis has calmed way down, and I feel quite human. I just can't lay flat, so my high pressure is mild. I think the two together were what were killing me. In the midst of all this he ordered another brain MRI, T spine MRI and Brain CT. Initially they thought they saw some brain swelling but decided it was contrast from the intrathecal gado. And that very well may have been causing some irritation. I guess it looked like the glue was still in place.

Still can't say enough good things about Dr S. and Penny. I also had a great interventional radiologist who did the LP for CT myelo, and gread neuroradiologist who did fibrin glue patch. They did deep sedation for the patch, don't remember a thing. The nurses were all really nice as well, just seemed short staffed and a bit overwhelmed. I do think pharmacy is a big problem when new meds are ordered, most everything has to go through them.

So Dr S. said this patch could last anywhere from a few weeks to forever, time will tell. If it fails we go to surgery since we now know for sure where the problem lies. I would highly encourage anyone to go to Dr S. I truly believe this is a very complicated thing to treat and I personally would not trust anyone else with these matters. He is on top of you every step of the way. It is a rough ride but he ispires a great deal of confidence.

Thanks for everyones support, thoughts and prayers. And good luck to everyone else seeking good health. I'll be in touch.

Lisa

[Robbysmom5]

Hi Lisa. I was waiting to hear how you made out. Sorry you had a rough time and got the chemical menigitis from the glue patch, but sounds like so far so good!! Hope the high pressure works it way out soon!

[wobbles]

Lisa:
So glad to hear from you! Wow...you really went through it. So sorry that it took so much pain and suffering to accomplish the seal of your leak. But like you said, at least you now know where the leak is.....hopefully this patch will last and last and last. Remember to take it easy for a while....even when you start feeling 100%.

keep us posted on your progress...

wobbles

[curranmom]

Hey Spots - So sorry to hear about the high pressure oh can I relate oh to well, I bet Dr Schievink was all over it seeing I have given him first hand experience already, LOL. I am still in the worst pain ever with it have you gotten any better yet? I see he gave you the Lasix what about the Diamox, and what is solumedrol? I completely agree with you about the problem on the pharmacy issue and I think that need'a to be addressed, my husband had to constantly ask over and over for my diamox and the first visit out is when I missed the diamox for 24 hours as well too. I think maybe that is something we all are going to maybe have to mention to Penny or Dr S personally cause it is unacceptable now that more than one of us have experienced this. Well I am glad your home and here's to the glue holding up *juice especially with that high pressure take it easy.

Kim

[spots]

Kim,

I actually mis-spoke on the meds, they gave me lasix, diamox as you know for high pressure, and the solumedrol which is the steroid for treating the asecptic menengitis. The menegitis is about 70% gone, just some significant high pressure still. I'm up in the middle of the night now because I slipped off my pillow ramp and woke up with a screaming head. It'll be a while before I get back to sleep. Any good sleeping tricks yuo've come up with? Another thing Dr S ordered in the misdst of that crisis was an MRV. I never really found out why, the nurse just said t look for blockage.I was in such agony I didn't think to ask Penny or Dr S about it.I feel like at this point I have chosen to trust them entirely and especially in times like those, where my thinking is quite limited, I am just going to do whatever they suggest. I am convinced they have our best interest at heart. To me that is a priceless feeling.

Kim I hope and pray for you that you will get the relief you so much deserve and soon! You have been through hell and it's time for the tables to turn and for you to get you life back as you knew it before. Keep up the the strong effort and don't ever, ever think it can't be done, because it can and it will. I know it's corney, but keep your chin up, there is a way out of this and you and Dr S will find it, i'm confiedent.

Take care,

Lisa

[dreb]

Lisa,

Wow! You sure have been through a lot. So sorry to hear about the meningitis & the high pressure HA. But I am thrilled to hear that the LEAK IS SEALED!! That is awesome news! As everyone else has said, take it easy! I hope that you continue to feel better with each passing day, and soon be able to put this all behind you. I agree with you as far as Dr. Schievink goes. He is the only one for me, and I put complete trust in him. Whatever he says to do, I do it. He is a not only a great surgeon, but also a great person. I feel as you do, we are in the best hands possible, and he really cares about making all of us better.

Feel good, rest up, and know that everyone is thinking about you and praying for you.

Deb

[BOBinFLA]

My heart really goes out to you. What an ordeal! I realize this will not come as any sort of reassurance, but you're not the only one who has had this kind of "issue" at C-S. Yes, Dr. Schievink and his staff are great, but C-S needs to get their priorities straight or something. I'm only posting this reply as a cautionary tale for others. I have no axe to grind.

I don't know if it's the nursing shortage or what. I had a similar problem during my stay in March of last year. Dr. S was giving me a high volume spinal saline infusion to see if he could force my leak to show. They gradually upped the amount I was getting over the next few days as I was able to tolerate more (as in pain). I was taking as much as I could stand, trying to be a good patient, hoping to get Dr. S what he was looking for. As the saying goes, "no pain, no..."

I don't know how I did it, but I finally managed to fall asleep the last night as the drip was running. This was probably the result of my pain meds kicking in. I woke up about 1 am with the most excruciating pain in my lower back. I was even temporarily paralyzed from the waist down. I kept hitting the call button and no one would come. I finally called 911! Boy, if you think the nurses were unhappy with me before... Thank goodness my friend, Rob, who was staying at the Hotel Sofitel nearby, came to help me. The nurses wanted me to make a decision whether to keep the drip going or not. I was not in the best frame of mind for making any sort of medical decision. I finally had them shut it off and slowly feeling returned to my legs.

Thankfully, later that morning Dr. S said everything was okay and they repeated the diagnostic procedure later that day. They still couldn't find the leak. They were about to discharge me when Dr. Louey came back in the room and said here's my final, last resort, best offer. He said if I could run (or walk as fast as could) and lift the heaviest things I could find (like hospital beds) around the hospital for the next 30 minutes they'd take the pictures again.

In the middle of that I had a nice visit from someone from C-S Risk Management. Something about a 911 call at 1:30 that morning. Imagine that. Guess they were concerned about a lawsuit. Sounded like she'd been down a road similar to this before. If I'd been a real nasty person I suppose I could have gotten a nice settlement check. I didn't feel like getting anyone in trouble. So I just said everything was fine now and I far as I was concerned that's all that really mattered. I probably signed my life away. Anyway, thankfully, Rob was there to help me. Still nothing showed on the last set of pics. I was discharged later that day and flew back home the next. And the rest is history. True story! I could not make this up. I'm just not that good of a story teller.

But, enough about me. You need to take it real easy getting back home and recovering over the next several months. I hope you've got all the support you need at home. Unfortunately, there's only so much we can do from out here on-line. Please keep us posted about your progress. When I hear about the ordeals and amazing resiliency of others like you it helps me to keep going.

Our thoughts and prayers are with you.

- Bob

[LauraL840]

Great news Lisa! Uhhhh well, about the leak being sealed! Sorry to hear you're battling the pressure too! Hope everything is under control now! Did you have the MRV yet? Dr. S ordered one for Kim too, will be interesting to see where he's taking that with both of you? Keep us posted as you can!

[curranmom]

Hi Lisa - Yes Dr S ordered the MRV for me as well, I had it done here in Milwaukee Wednesday and I next day aired it to him so he should have gotten it yesterday (Thursday) afternoon.I haven't heard anything from him yet. It looks at the flow of the blood vessels in our head to make sure there is no blockage going on from the high pressure take a look at my thread "out look still not good" Concerned Gal explains it very well actually. Have you heard anything from him yet, when did you have it done? How much Diamox are you on and Lisex a day? As far as sleeping hmmmm no I don't have any tricks cause I don't sleep at all I as a matter of fact I haven't since I have been home since Saturday. I sleep maybe an hour here and there and then the pain wakes me up, I don't eat either. I also have a fever of about 103 but I do have a cold from the kiddo's. Well at least you will know for sure if your leak blows cause your high pressure will change for sure. Take care.

[wobbles]

Lisa:
Thanks for the update! Also the warning about nursing shortages and the probs that can cause. My niece is going to stay in the room with me (its the only way I can afford to come for the 5-6 days) so hopefully she can make sure that I get whatever I need from them! As for the pharmacy being slow...that seems to be a universal problem at hospitals...I have encountered it several times the past few years. Hopefully, CS will get their act together and address this deficiency before any more patients are injured!

Bob: Unbelievable...but no doubt true...911 indeed!...love it...bet that got them jumping...the fact that it was necessary is sobering to say the least....and I can just visualize the risk mgmt person......he...he......boy are they lucky you're a nice guy...... Again, I will have my niece in the room with me...so hopefully she will be able to run interference for me.

Lisa, Kim and all- I plan to use your experiences with the high pressure in a proactive manner...asking Dr S to already have the orders for diamox in place BEFORE I go to my room....I don't want to be waiting for the pharmacy to get off their butts IF the high pressure starts.....Hopefully, my body will make an easy transition from low pressure to high pressure once my leaks are repaired..name it and claim it......

take care everyone and don't overdo!

wobbles

ps...Kim...I am quite concerned by how high your fever is....too high for just a cold...what did Dr S say about it?

[curranmom]

Wobbles - i just emailed Penny about the fever. Also about the pharmacy meds make sure your niece KEEPS asking cause Chuck had to be all over their butts I mean he was asking ever 2 minutes and I mean he was getting upset about it. I would definitely bring that up to Dr S before hand. Also the time when I knew I blew the fibrin patch and the nurse wouldn't call Dr S or at least even the on call doctor for a few more hours to see how I felt later, that's when Chuck picked up the cell phone and called Dr Schievink's office himself and paged the doctor on his own. I think there is a line of communication that is mixed up unfortunately so when you have your hands on Dr Schievink or Penny take full advantage and make sure you tell them everything you need them to know and make sure they make the nurses aware of everything that you are comfortable with!

[wobbles]

kim:
great advise...thanks.....I already asked Dr S about the diamox last visit..and he said that was not applicable in my case (that was when we were just patching....) but it is certainly an issue now that we are proceeding to surgery. Another ? for you....did Chuck stay with you in that big room? Did you ask for that room specifically or did you just get lucky? I can only afford to bring my niece if she can stay with me in Cedars...my budget cannot do more than a couple of nights hotel...she is happy to use a recliner or even mat on the floor...she is a gem that way......Any advise on how to make sure that she can be with me in-house? She will NOT be eating their food...like I would pay $26 for that stuff...what a joke...I really laughed when I read that on their website.....$26! right!!!!! Laura told me about all of the food court options so she will be eating on the cheap over there or the old peanut butter cracker/cup of noodles diet!

any advise will be appreciated...right now I would be happy to just find out when so that I can make reservations. CHerry called this morning to give me the schedulers name and number...of course I got their voice mail and they have yet to call back! Frustrating...the longer we wait the more the airline tickets cost! Oh, well...this will pass and will all work out in the appropriate timing....I just have to trust that!

[BOBinFLA]

For what it's worth here's my therapy for sleep. About 8:30-9:00pm is bed time for me for the past year or so. Not staying up too late kind of forces me to get as much sleep for recovery as possible. Besides, sleeping or being unconscious is as close as it gets to being pain free for me.

At bedtime I'm on prescription meds as follows: 7.5 mg-15 mg oxycodone depending on my pain level; .25 Miravam (generic xanax) and 2mg Lunesta. I've tried every other sleep aid and this is what works best for me. One of my best tricks is the 3 frozen gel packs stuffed in nice clean sports socks. Two go on my head (forehead and top) and one on my upper spine. I always sleep on my back. Then I get a good brain freeze going. The therapeutic value of cold on inflamed tissue is a scientific fact.

Also, this is my time to meditate. I let my worries drift away and just tell myself I am healing. There are no obstacles only opportunities for growth, learning, and having faith. I replace every negative thought with a positive one. I just knock 'em down one by one just like they were bowling pins. When there aren't any more pins standing I know I've bowled a perfect game. I am healing and that's all there is to it. I send my conscious positive thoughts into the Universal Subconscious Mind (the mind of God if you like). I believe that my faith in God shall be rewarded in good time. If I worry about the time (how long it's taking) then I don't really have faith, do I?

I fall asleep shortly after that. Then almost like clockwork I'm awake at about 2:30am. Time for my next 6 hour dose of oxycodone. The amount varies with my pain level. I go to the kitchen freezer, trade in my used gel packs for three fresh frozen ones and then I'm back to sleep until my wife gets up for work 5-6am.

Hang in there.

- Bob

[mindi]

Lisa,

Thanks for the update! I was wondering how it went for you this time...
I'm so sorry to hear all that you went through! Hopefully the high-pressure will die down soon and your leak will REMAIN SEALED!

Bob - I can't believe the nurses weren't attending to you and that you had to call 911! Good for you! I'm sure that got their attention! ;)

[sadlisa]

Spots,

Sorry you had to experience the meningitis thing. I can relate as I was slamming my head on the headboard of my bed when I had bacterial meningitis. I guess I was just trying to split my head open to relieve the pressure and pain.

I hope all is fixed for good this time and you heal well.

Thia

[curranmom]

Wobbles - Yes of course your niece can stay with you in the room, Chuck stayed with me. You can ask them for a cot for your niece, I was lucky enough to get the big room every time (3) I was admitted I got a big one I lucked out I don't know how to be honest. Hopefully you will too, but the smaller ones are nice to and you can still get a cot in those and I think there is a couch in there to. Your niece can always go downstairs to the cafeteria for food or their are tons of food places in walking distances right around Cedars, their food is crap anyways so make sure she grabs you a a treat once in a while too ;) Any other question let me know, love to help!

[Concerned Gal]

Lisa - Have been reading this thread religiously and hoping to hear happy news for you. Hang in there, we are thinking of you.

Can't claim credit Kim on the info - it was CSF Challenged. It was really clearly described too :D

[curranmom]

Spots - Wondering how how your doing? How is the high pressure?

[spots]

Hi guys,

I don't know what to say, you are all so great. I got home late last night and am feeling somewhat OK, terribly wiped out. Kim, I am on 500 mg diamox 2x a day, they stopped the lasix when I left the hospital. I am still on the steroid pack for the menengitis. I'm on Zofran for nausea, zantac for heartburn from the steroids, and percocet and soma for pain. They did the brain MRV, brain MRI and brain CT late Tuesday night, I can't remember if I told you all about that. They wanted a thoracic MRI also, but I had huge, uncontrollable shivers that made that imposible. The MRI tech said he thought they wouldn't need it because of what he saw on the brain MRI. I got back to my room and Dr S. had already spoken to my mom about possibly needing to move me to ICU because of swelling and possible blood in my brain. He looked at the scans himself and decided the swelling was mild and the questionable blood was actually gadolinium from the intrathecal injection I'd had the day before. So they left me on the 8th floor and waited it out. I never heard what the MRV showed, it must have been normal.

Things turned around for me in a big way on Thursday so they let me go that evening. I am still not able to lay flat, but I get a weird headache rush when I go from reclining to standing. So I think I must still have both the high pressure and menengitis going on. They are both somwhat tolerable knowing that with any luck at all the leak will stay sealed. Not that luck is my strong suit these days, but I'm due right?

Bob, that is a terrifying yet in hindsite quite comical story you told about having to call 911. It's inexcusable to put people through that sort of thing. I am a nurse at a Children's hospital, have been for 14 years, and I have never been a floor nurse, only ICU and OR, but I can't imagine being that out of touch with what is going on around me. That is what we are there for!

Wobbles, things will go well for you just have faith in yourself and Dr S. Your neice will be with you the whole time and you will find comfort in that. I think they must give all of us leakers the big rooms, cause I had one too. I don't think my neighbors liked me much though, for a day and a half I couldn't do anything but moan, say owww, and ****!
Good luck to you, I will be thinking about you.

Thanks again for all your support you guys have given me strength I wouldn't have found without you.

Take care,
Lisa

[wobbles]

Lisa:
Glad you are home safe and on the road to sound.....sorry that the Reiki couldn't forestall the complications that you got from the glue job! It was really nice to connect with you before the procedure...if only I would have checked back in with you.....oh, well, hindsight is always so much clearer! You have really great energy and a strong body with really strong natural connection to the healing frequencies...tap into those frequencies to aid in your recovery - they are there for you (and everyone else for that matter...).

Thanks for the info about the room...good to know that even the little rooms have room for a cot! My niece said that she doesn't care what she sleeps on as long as she can be with me! Is there a special parking lot that overnight parking has to be in? I am planning on getting the parking pass and it is only good for a couple of the lots......did you have a rental car with you or did you cab it? I can check the Cedars website again to find out where to park for overnight....but if you know...well...the way my brain is working lately...I can use all the help I can get!!!!!!!!

kim: thanks for the room info.....maybe I will get lucky likeyou and Lisa and get a big room too! Don't know wht my insurance will cover...whatever Medicare allows...that's it!
Oh well, I don't really care as long as it meets our needs.

take care everyone......continue to heal and grow stronger...your bodies have been thru a lot and need lots of TLC....

wobbles