A couple of ?'s for LauraL840

[forevan]

If you have the time. My situation sounds somewhat similar to that of your husbands. I just posted my info on the new leaker thread but to sum it up, I have been dealing with a chronic spinal fluid leak since March of 07 after an anesthesiologist attempt to do a combo of epidural plus spinal anesthesia for childbirth. She attempted multiple punctures through my dura while trying to get the spinal portion and had to abort after not being able to get it. I began with symptoms within about 48hrs of that. The rest is somewhat of a long story but I was misdiagnosed and thus had a delay in appropriate treatment for about 6 months. I was lucky to have heard about Dr. Schievink at Cedars (by chance heard about a spontaneous leaker here in my town through my physical therapist and contacted him0. I have undergone 3 high volume blood patches out there and most recently (Nov. 08) a fibrin glue patch. I did have sucess with all these treatments but it wasn't permanent. Had the best results with the glue probably. Next step is surgery per Dr. Sch. My injured area sounds like it appears to look like your husbands as well (they don't see a clear "leak" on my myelograms---which drives me absolutely mad although I know leaks don't always show up---but rather Dr. Sch describes it as a bubbling out or kind of a little blurb where the margins should be straight and clean). He said that in those situations, he usually sees those areas seep or weep fluid when he goes in to do surgery. He says he will do what it sounds like they did with your husband and cover this area with some muscle tissue. I was glad to read that it seemed like they were able to repair the original leak site in this manner but sad you are dealing with a new leak. I leaked as well from my myelogram I had done in Nov. prior to the fibrin glue procedure and had really acute spinal headache symptoms (extremely postural) but luckily it seemed to have healed up on it's own in about 1 wk like they "should" (due to having young kids at home we opted not staying longer to have them do another blood patch but wait it out a bit). Because that leak was so acute and postural in nature I think my current symptoms seem like they are from my chronic leak although I guess it could be from that leak but that it has gotten smaller or something.

So I have some questions (and I am posing some to Penny too but am having a hard time with getting call backs lately so thought I might bounce them off you too). How long was your husband in the hospital following the surgical repair? How long did you stay in LA total before flying home? Where did they take the muscle tissue from (the back area where they are cutting through?)? In how much pain was he in and for how long? Do they give you any medications for the surgical pain? Was he pain free right after surgery (head wise) or did it take awhile? Do they always do the myelogram right before surgery or did they repeat it with him since they hadn't seen a leak or a suspicious area before (I obviously see the risk of yet ANOTHER leak from the myelogram as huge). When they saw the bubbling area of your husbands that weeped, was that while they were surgically exploring or was that on pre-surgical myelogram? Was that in the same area his LP that is the root of all this was in? Any other advise or suggestions you have would be great. We already know the "drill" in terms of staying near Cedars, getting to the hospital etc. but it's more stuff related to the actual surgery. I know you are busy so don't worry if you don't have the time.

Thanks again and wishing us a healthy new year!
Holly

[LauraL840]

Wow, your leak does sound an awful lot like my husbands! I'll do my best to answer your questions! We're going back to LA in February for his second surgical repair (to repair pre-surgical myelogram leak). Do you have a scheduled date for going back?

How long was your husband in the hospital following the surgical repair?

5 days. Dr. S said 3, but DH had low-grade temp (highest was 101.3 ... for adults 101.5 is considered a 'fever' to be concerned about) which is common after surgery, but after all we'd been through I was concerned. So he let us stay.

FOR THIS TRIP:
He has surgery on a Monday and our plan is to fly home on Saturday. I asked Dr. S if we could stay in hospital for 5 days again to give him the extra 'tlc' and rest before making trip home. Also, there is a chance that this surgery may involve multiple levels. His pre-surgical myelo was at L3. His original leak from LP was L4-5. He had several LP's between original onset poke and pre-surgical myelo poke all between L2-3, L3-4, L4-5. So we may be looking at a L2-5 incision to seal the current leak and make sure ALL previous LP sites are patent. Also, given that it was high pressure than blew out the LP myelo site, I would imagine Dr. S will want to visualize the L4-5 repair he did to make sure it withstood the pressure increase.

How long did you stay in LA total before flying home?

We flew home two days after he was released from hospital.

Where did they take the muscle tissue from (the back area where they are cutting through?)?

They harvest from surgical site, nothing remote, just where they've already cut through to get to the leak.

In how much pain was he in and for how long?

That's tougher to answer because I honestly don't remember how LONG, but he was in pretty significant pain for the first few days (on PCA - patient controlled pain pump - dilaudid). And then a good amount for the next week or so (travel aggravated the post-surgical pain), but within a month was feeling much better.

Do they give you any medications for the surgical pain?

Absolutely! I can't imagine they'd let you home without writing a script, but just ask.

Was he pain free right after surgery (head wise) or did it take awhile?

He was HA free when he woke up! :D He stayed that way for 3.5 weeks when he started to convert to high pressure and the high pressure subsequently blew out the pre-surgical myelo site.

Do they always do the myelogram right before surgery or did they repeat it with him since they hadn't seen a leak or a suspicious area before (I obviously see the risk of yet ANOTHER leak from the myelogram as huge).

I'm not sure I can answer this for every case, but I'll tell you about ours :) .... Dr. S gave us convincing points about the pre-surgical myelo in May. We did NOT want to have an LP myelo, however he did not want to put DH through surgery to have him wake up with a leak somewhere else that they didn't try to image! He did not feel that DH was at risk to leak from his LP myelo site ... and he didn't (till high pressure came into play). There's always the possibility had DH never developed high pressure that the myelo site would never have been a problem!

So his 'standard' of care before surgery is to want the best possible picture of what's occurring in the spine before opening up his patients. You can't 'argue' with this, but in cases like yours and DH's and others whose history is ONLY due to LP, maybe he'd deviate?

He will be deviating for us this time. He agreed (several times) that DH will have NO further invasive imaging! :D Yeah for us! So, all that he's having before this surgery is a regular lumbar MRI w/ and w/o contrast. We're having that done here in NC. So we'll fly to LA on Sunday and go straight to surgery Monday morning (have to report at C-S at 6:30 am for 9 am surgery)!

Bottom line (FOR DH) ... no myelogram before surgery! No more LP's (unless he get meningitis again - God forbid)!

You have an excellent 'arguable' point for no invasive imaging before surgery. Bring it up with him. Email him and Penny at same time. He's out of town this week, but he gets his emails. He may not answer you right away or at all (I emailed beginning of last week with ?s and never heard back). My experience with him and email is that he's really busy and if he has an answer WHEN he reads it, he replies. Otherwise you likely won't get one. I know that's frustrating for some of us, but I try to remember that he's the ONLY doctor we have EVER had who has given us his email (and cell phone number) and who answers BOTH!

Questions for you:
Do you know where your LP was done for the myelo?
Do you have documentation about the level of the botched epidural?

Clearly you are aware that you've leaked from both sites, so a concern you need to address BEFORE surgery is making sure both sites are sealed and will withstand potential high pressure. I haven't read your 'roll-call' post, so I don't know how long this has been going on for you and there's really no way to say if you'll go to high pressure (as we did and many other chronic leakers' have done) or not.

One thing I would consider is this; if your original leak site is close to the LP myelo site, ask him if he thinks it wise to open up both locations, fix the leak from the original site and make sure the LP site looks good. If LP site looks good, see if he can fibrin/fat pack it anyway to give it extra support.

When they saw the bubbling area of your husbands that weeped, was that while they were surgically exploring or was that on pre-surgical myelogram?

His leak was NEVER imaged by CT or MR myelogram! We went into surgery with experiential data (his positive responses to both EBP and fibrin even though neither lasted) and a DOCUMENTED LP site. Dr. S saw the weeping during surgery and only when he had the anesthesiologist increase ICP by withholding breathes.

Was that in the same area his LP that is the root of all this was in?

It was. Dr. S described it as a 'blister' in appearance. Actually, he cracked me up and said "It looked just like a herpes blister" and I said "I've never had herpes, so I don't know what that looks like" :D! He rocked back on those heels of his and laughed.

Any other advise or suggestions you have would be great. We already know the "drill" in terms of staying near Cedars, getting to the hospital etc. but it's more stuff related to the actual surgery. I know you are busy so don't worry if you don't have the time.

Make sure you request PT to come in and help you 'learn' how to get in and out of bed, chair, shower, car, do 'stairs', etc. They'll get you a cane (you'll want it) to help with stability. If you have one, bring it.

Make SURE your husband can and will speak up for you! When you get to your room and get settled, have him get a copy of your ordered meds. Pain meds are often "PRN" - meaning YOU have to ask to receive and if you can get them every 'x' hours you'll have to ask! You can tell them that you are requesting that they give you PRN pain meds as scheduled.

You may have a host of other meds available to you that you weren't aware of (to help sleep, muscle spasms, nausea, etc). The 'list' will show you what's available. Your DH can always ask what each one is if he isn't familiar. And if something isn't on the list and you need/want it, ASK!

If you take daily medications, BRING THEM WITH YOU! Sometimes the orders don't get written in a timely manner and if you've got 'maintenance' meds you don't want to miss them. Technically you aren't supposed to take ANYTHING they don't give you, but by golly if I was on daily BCP, anti-depressants, etc. medications and they didn't get my meds to me, I'd take my own!

Have your DH take notes when Dr. S talks with you. Write down any questions you both have so that when he rounds you can remember what they were!

DO NOT let ANYONE deviate from what he's told you to do or not do! Cedars is a teaching hospital, so you will have residents round without him. Some of them actually read the patient charts before coming in, some hit the high points and see 'spinal surgery' and quit reading, and others come in 'blind'. The morning, uhhh early early morning, after surgery we had a 'crew' of residents come in and one of them immediately started cranking on DH's bed saying that he was supposed to be at a 30 deg angle and could get up and start walking around that afternoon! HELLO??? Dr. S had told us the day before that for 36 hours after surgery DH was supposed to be FLAT on his back and stay in bed! He could raise to 15 degree to eat, that's IT! When I mentioned this, she says 'all he had was back surgery' .... hmmm, you must have missed the part about him leaking spinal fluid for 18 months prior to his little back surgery. :rolleyes:

Many/most residents know little about CSF leaks/leak repair surgery and post-surgical protocol! SCHOOL THEM! Just because they come in with their pretty white coats doesn't mean they know more than you. ;) Bottom line, do what Dr. S says and tell them if they're telling you something 'wrong' or different.

That's all I can think of for now.


Thanks again and wishing us a healthy new year!
Holly

[forevan]

Laura-

Thank you so much for taking the time to answer my questions so thoroughly. It definately helps to hear the experiences of others esp. with the issue of the high pressure situations b/c they haven't really addressed that much with me. Penny actually called me back today and we are looking at surgery on Feb. 4th. Luckily Dr. Sch feels like the abnormality on my most recent myelogram is the site to target (same location as my botched epidural/spinal) and thus told Penny we don't have to do a pre-surgical myelogram or other imaging beforehand. After hearing your story I was definately leaning away from any more punctures as my biggest fear is going in and making things worse since so many of these procedures do run the risk of causing another leak and was hoping we got the + imaging study he wanted (or maybe I wanted as it seems that + imaging studies aren't a huge part of the diagnosis---helpful but seems pretty well accepted that you don't always have any + imaging with leaks). They are expecting it to be something similar to your dh's "blister" so planning on a muscle patch reinforced with blood and glue she said. I asked her about investigating the previous LP leak site in case my chronic one had healed by the glue and that was what I was leaking from now or possibly it being a combo of both and she said it should be in that same vicinity since LP's and spinal anesthesia is done around the same level so would be likely to visualize that area (won't be at exact same spot b/c they would have tried to avoid that with myelogram to not cause further harm but it should not be more than 1 level above or below). I didn't ask Penny about this but your point about just having them reinforce the myelogram puncture site is a good one. If I leaked from there once, it is possible that could reopen under some kind of high pressure state. Dr. Sch supposedly is very confident that surgery is the right next step (as opposed to waiting to do another glue patch---I agree as I believe that at this point, this weeping area has probably sort of scarred itself open and only closing it mechanically or with a permanent patch is how it will heal) and also very confident in the location so hopefully that equates into him being fairly confident that this will resolve my problem.

I also appreciate your comments about being your own advocate and the info about prn pain meds, laying flat (Penny told me 36hrs today?), PT, residents and stuff. I feel lucky that my dh is also a doctor (a general surgeon) and that I am a RN as well as a nurse practitioner (like Penny is but not practicing right now) so luckily we are familiar with certain meds, how residents work in a teaching hospital etc. but it is still such a confusing diagnosis that we find ourselves lost at times, not asking the right questions, or being as much as an advocate as we need. I admire how much research you have done on behalf of your spouse. Don't know if you have a medical background but even with one, this is a pretty complicated thing to understand (obviously why there aren't many MD's in the country who are aware of this issue or why so many of us go inappropriately diagnosed or treated for so long).

So when will you guys be in LA? I think I read on another thread that you rent a place? That is a great idea. We have stayed at the Sofitel on our previous visits and have found it to be extremely convienent and comfortable post-procedures but obviously a bit pricey even with patient discount. We haven't even started looking into where to stay this time. It's possible my husband may not stay with me the entire time this go around (but wants to be there for the surgery) as we have 2 very young kids at home so a long time for both parents to be away (esp. when this isn't the 1st, or 2nd,.....etc. trip out there). I figured it would be okay to not have another person there while I am in the hospital anyway but I hope I don't come to regret that. I think either my mom or dh will then fly out to help me get back home.

Thanks again for all your help and I will keep my fingers crossed that this time does the trick for the both of us!

Sincerely, Holly
P.S. I have another ? for you but will send you a PM about it.