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07-03-2011, 03:20 PM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

Dr. Schievink at Cedars - - Blood Patch Procedure
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For those who have had blood patch procedures at Cedars Sinai, I have a few questions:

1. Do they give you pain medication or valium for the procedure?

2. How long do they keep you on bed rest immediately after the blood patch procedure?
Hours? Days?
Are you on bed rest in the hospital or at your hotel or home?

3. How strict is the bed rest? Are you permitted to sit or stand up for any amount of time to go to the bathroom or to eat meals?

4. Does the length of time on bed rest after the procedure vary based on whether the headache symptoms have improved?

5. Do they test you to determine if the patch has taken?

I am not having my blood patch procedure at Cedars (it will be my second) but am interested to know how they handle because it appears from the posts that they are the gold standard.

Thank you for your responses to any or all of these questions and any related information.

LeakingnHissinginPotomac

#2
07-03-2011, 04:41 PM
LauraL840
Distinguished Community Member Join Date: Apr 2007
Location: NC, USA
Posts: 2,132


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Cedars has changed a lot of protocols over the last 2+ years and I am not sure what they are currently doing. Although my understanding (via other Schievink patients) is that Dr. Louy is no longer doing blood patches, but that they are being done in the neuroradiology department using CT-guidance.

As far as aftercare .... my husband was only down for 2 hours after procedure before being released to my care .... WE kept him on strict bed rest where we were staying. There is NO TEST to determine if the patch has taken, only resolution of headache (as confirmation) can confirm that they've placed blood in correct location, and sustaining resolution (weeks later) may confirm adequate healing.

Given your location (Potomac), you might consider Duke before Cedars....
__________________
Laura

Better is one day in your courts than a thousand elsewhere...

#3
07-03-2011, 06:32 PM
TXCINDA
Community Member Join Date: Jun 2009
Posts: 85


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I had a high volume blood patch with Dr. S last October. They sedated me for the insertion of the needles (due to my anxiety) and then woke me up so that I could let them know what I was feeling during the actual blood patch. I know that I was on an inclined gurney (head lower than feet) for several hours afterwards. I want to say it was 5 hours, but I am not positive on that. I returned to the hotel and layed flat for the rest of that day and into the next. But at the point when I knew it didn't work for me, I didn't continue to lay flat, but I did continue to take it easy. We knew it would be a long-shot for mine to seal with a blood patch, but I wanted to give it a try. They did give me a script for pain meds, but I did not get it filled.

#4
07-04-2011, 09:47 AM
LeakingnHissinginPotomac
New Community Member Join Date: Jul 2011
Posts: 23

Dr. Schievink at Cedars – Blood Patch Procedure
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Thank you LauraL840 and TXCINDA for your helpful responses.

I did not take a sedative for my first blood patch (I did for the CT Myelo), but wish I had. I was not placed in an incline position after the blood patch procedure but have read about it. See excerpt of article below by Dr.Schievink. I don’t know if this is still his thinking and procedure. I lay horizontal for about 1.5 hours after the blood patch procedure and then was transported home (medical van) and then was on bed rest for about 2 days. But I knew when I sat up a couple of times, that it hadn't worked.

Excerpt from Dr. Schievink’s Article entitled SPONTANEOUS SPINAL CEREBROSPINAL FLUID LEAKS AND INTRACRANIAL HYPOTENSION in May 17, 2006 issue of JAMA:

". . . I prefer to place the blood patch at 2 separate sites, first at the thoracolumbar junction and then in the lower lumbar area, after which the patient is placed in the Trendelenburg position, either supine, prone, and/or lateral for 30 to 60 minutes, depending on the location of the CSF leak. This allows blood to travel over many spinal segments toward the site of the leak.

If epidural blood patches fail to provide relief, a directed epidural blood patch or percutaneous placement of fibrin sealant is recommended. These therapies require that the exact site of the CSF leak be known, and placement of fibrin sealant probably provides the best chance of alleviating symptoms. In my experience, about one third of patients for whom epidural blood patching has not been effective experience relief with the percutaneous placement of fibrin sealant, thereby avoiding surgery."

LeakingnHissinginPotomac

July 4, 2011

#5
07-04-2011, 11:55 PM
LauraL840
Distinguished Community Member Join Date: Apr 2007
Location: NC, USA
Posts: 2,132


________________________________________
Quote:
Originally Posted by LeakingnHissinginPotomac

Excerpt from Dr. Schievink’s Article entitled SPONTANEOUS SPINAL CEREBROSPINAL FLUID LEAKS AND INTRACRANIAL HYPOTENSION in May 17, 2006 issue of JAMA:

". . . I prefer to place the blood patch at 2 separate sites, first at the thoracolumbar junction and then in the lower lumbar area, after which the patient is placed in the Trendelenburg position, either supine, prone, and/or lateral for 30 to 60 minutes, depending on the location of the CSF leak. This allows blood to travel over many spinal segments toward the site of the leak.

If epidural blood patches fail to provide relief, a directed epidural blood patch or percutaneous placement of fibrin sealant is recommended. These therapies require that the exact site of the CSF leak be known, and placement of fibrin sealant probably provides the best chance of alleviating symptoms. In my experience, about one third of patients for whom epidural blood patching has not been effective experience relief with the percutaneous placement of fibrin sealant, thereby avoiding surgery."

LeakingnHissinginPotomac

July 4, 2011

That was the protocol he followed with my husband. We still ended up in surgery after the fibrin failed, but all in all, we tried avoiding surgery!
__________________
Laura

Better is one day in your courts than a thousand elsewhere...

#6
07-08-2011, 02:46 PM
FrontalLeaker
New Community Member Join Date: Jul 2011
Location: Maryland
Posts: 8


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Quote:
Originally Posted by TXCINDA
We knew it would be a long-shot for mine to seal with a blood patch, but I wanted to give it a try. They did give me a script for pain meds, but I did not get it filled.

TXCINDA - May I ask why you say you knew it would be a long-shot for the blood patch to seal the leak? I was told the same thing, due to the leak being in the front of my spine. Where are you now with the leak?

FrontalLeaker

#7
07-09-2011, 10:04 AM
TXCINDA
Community Member Join Date: Jun 2009
Posts: 85


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Dr. S said the BP was a long shot because of the location (anterior thoracic). My leak is back and I am going back to see Dr. S in Aug. I am going to have a shunt put into the cyst in the front of my spinal cord, that pushes the leaked CSF around to the back of my spinal sac. This is a pretty new procedure, even for Dr. S. It won't repair the leak-as likely nothing permanently will, but it will hopefully greatly or completely relieve my symptoms. I wouldn't trust this surgery to anyone but Dr. S and for the first time, in a very long time, I have some hope that I may feel better soon.

#8
07-13-2011, 03:45 PM
FrontalLeaker
New Community Member Join Date: Jul 2011
Location: Maryland
Posts: 8


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Thanks TXCINDA - I am looking at scheduling surgery with Dr. S to repair the leak - with fibrin glue. Is there a reason you did not undergo this surgery first? I think I will probably have surgery in September.

#9
07-13-2011, 04:47 PM
TXCINDA
Community Member Join Date: Jun 2009
Posts: 85


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I have had that surgery already-5 times-and unfortunately it just doesn't hold for me. I trust Dr. S completely and know that you are in good hands. I'm anxious to see if this surgery will be the magic bullet for me. Just got the surgery date and it will happen on my birthday. I have to believe that this is a good omen!

#10
07-13-2011, 05:38 PM
FrontalLeaker
New Community Member Join Date: Jul 2011
Location: Maryland
Posts: 8


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TXCINDA - thanks for your quick replies. I too have a leak in the front of the spinal colum. Can I ask you to give me any details that might prepare me for the surgery. I don't know much about it. How invasive, etc? Dr. S said I would be in the hospital for a full week afterward, seems like it's pretty invasive - especially to have 5 times. Now I'm wondering if I should move forward with the surgery if it has such a low success rate. Perhaps I should inquire about the shunt.

Good luck with your surgery. I hope it turns out to be the best birthday ever and you get relief finally. The anxiety of all the treatments is dreadful. I'm miserable just after 3 failed BPs. I can't imagine what it's been like for you. I'll keep you in my thoughts.

07-15-2011, 07:21 AM
TXCINDA
Community Member Join Date: Jun 2009
Posts: 85

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Oh please don't base the success rate on my experiences. All of these leaks are so unique and the way our bodies respond will vary greatly. I would definitely have preferred to have a permanent repair but it doesn't seem to be in the cards for me. You and Dr. Schievink can come up with the best treatment plan for your particular situation, but feel free to ask about the shunt (tell him I sent you-Just kidding!!).

As for preparing for the surgery, I have always stayed in the hospital for 5-7 days after the surgery. I have had to lay flat after the surgery, for 2 days. Be sure to ask Dr. S to clarify if you can turn from side-to-side. The nurses are not always clear on this and if you wait until you are in your room after the surgery to ask, they will have to wait until they get an order to turn you. This becomes a big deal because it is amazing how hard it is to lay flat on your back. You won't be able to turn yourself, but will have to assist somewhat. I usually turn from one side, to the other then to my back about every 2 hours. My hips start to hurt and then I have to shift. I had a foley catheter because they will not let you up-at all. Then generally on the third day, I will start the 'sitting up' process. It generally takes me all day, with just raising the head of the bed slightly every hour. This last surgery, I had a PCA for pain medicine, which worked out really well for me. Try to have someone stay with you for the first 2 nights at least. The nurses and techs are great, but it helps if you have someone who can get someone/something for you right when you need it. Don't wait for the pain to get to great before asking for pain medicine. If you have a PCA, you can push the button when you need it. If you don't, I would definitely recommend asking for your pain medicine as it is scheduled. You can ask the nurses to wake you up when the next dose is due.

For the leg pumpers, ask the nurse or tech to wrap a pillow case around each leg, and then put the pumper over that. This will keep your legs much cooler and more comfortable. I tend to get very warm with these surgeries so my room temp is usually set as low as it will go and I bring a small fan. It is very difficult to eat/drink because you will be flat. You will need someone to help you eat at least for the first few days. I find that I do better laying on my side to eat (however, my appetite is very low after surgery and I usually only want shebert.) If you are already nauseous from the leak (as I am-all the time) be sure to let you anesthesiologist know that you would like Zofran in your IV. As soon as I wake up from surgery it is usually the first thing I ask for. I was adamant about avoiding the possibility of throwing up and so far I never have. I have also had Zofran scheduled for every 4-6 hours, as a post-op regimen.

I have had problems with my abdomen filling with gas after the surgery. (I know, TMI!). But this caused me a lot of discomfort and my entire core area would feel very tight. I have had to ask that Simethicone be prescribed for my post-op regimen as well. One time I didn't have it for post-op and I had to wait about 4 hours before I could get it. I was pretty uncomfortable. Be sure to ask about the possibility of needing Diamox, for high pressure symptoms after the surgery. Don't wait to ask for it, if you start feeling those symptoms.

I'm sure I have some other tips but I don't want to throw out more than you are needing. Feel free to ask anything you want. I think sharing our experiences is so helpful and if I can make this at all easier for you-I'm happy to.

Take care,
Cinda