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PRAYER THREAD~~~swatkind
Hi all please wear your purple tomorrow July 9th to show awareness for Chiari and support as our friend heads in for surgery.
Sending Good Vibes ~~~~~~ and prayers to her and all in charge of her care <3
and sending healing MoJo for a smooth recovery.
Sending Good Vibes ~~~~~~ and prayers to her and all in charge of her care <3
and sending healing MoJo for a smooth recovery.
COMMUNITY LEADER
Keep in mind those with EDS tend to heal slower, and this may take longer to heal .....
Umm did you try the target test to see if it is CSF?
If you are dealing with a bloody fluid, you could try to look for the halo sign/target/bullseye (or ring sign). Dab some of the blood on a tissue. If there is CSF mixed with the blood, it will move by capillary action further away from the center than the blood leaving it in the center creating the target sign....
This is one test you can do yourself.
Sending prayers this all resolves in time <3
Well, the post-op news wasn't as positive as hoping, but not really terrible either (I'm grasping at straws!)
I was hoping to get my stitches out Thursday (3 weeks post-op). The surgeon's PA usually takes care of first post-op appointments , but he looked at the incision and called in the surgeon. Surgeon said things didn't look too bad, so he took one stitch out and as soon as he did there was quite a bit of blood and an area of the incision that looked open. So, given that the incision still didn't look healed and the majority of it is under glue anyway, the decision was made to wait 2 more weeks to take the stitches out. I was put on antibiotics to prevent any kind of infection, he stitched up the area that looked open, and we collectively crossed out fingers.
After wound care I went ahead and asked the question....what will happen if the incision still keeps leaking. The good news is that at this point I might be looking at just a soft tissue problem and needing a skin graft over the area. Sure, more surgery, but at least it's not brain surgery. He'd have to test the leaking fluid and do a few studies to make sure it's not CSF, but at this point he's convinced it's not. The only hesitation I have is that there are signs that make it appear to be CSF (leaks happen predictably when I exercise, strain, etc, the fluid looks likes CSF), but all the imaging and his open observations during surgery would suggest it is not CSF.
So, still in limbo, still with my Frankenstein stitches, but not as critical as before.
I was hoping to get my stitches out Thursday (3 weeks post-op). The surgeon's PA usually takes care of first post-op appointments , but he looked at the incision and called in the surgeon. Surgeon said things didn't look too bad, so he took one stitch out and as soon as he did there was quite a bit of blood and an area of the incision that looked open. So, given that the incision still didn't look healed and the majority of it is under glue anyway, the decision was made to wait 2 more weeks to take the stitches out. I was put on antibiotics to prevent any kind of infection, he stitched up the area that looked open, and we collectively crossed out fingers.
After wound care I went ahead and asked the question....what will happen if the incision still keeps leaking. The good news is that at this point I might be looking at just a soft tissue problem and needing a skin graft over the area. Sure, more surgery, but at least it's not brain surgery. He'd have to test the leaking fluid and do a few studies to make sure it's not CSF, but at this point he's convinced it's not. The only hesitation I have is that there are signs that make it appear to be CSF (leaks happen predictably when I exercise, strain, etc, the fluid looks likes CSF), but all the imaging and his open observations during surgery would suggest it is not CSF.
So, still in limbo, still with my Frankenstein stitches, but not as critical as before.
I am thinking about you and wanted to check in. Next week , I will pray for a good evaluation.
COMMUNITY LEADER
Goodness 2 weeks and still leaking....something is amiss for sure...pray it resolves on it's own soon.
Yet again, what a roller coaster.
After 2 weeks, I was finally released yesterday. Feeling not too bad, but very nervous my incision will leak again as soon as the stitches are removed. I go next week for evaluation, so fingers crossed!
After 2 weeks, I was finally released yesterday. Feeling not too bad, but very nervous my incision will leak again as soon as the stitches are removed. I go next week for evaluation, so fingers crossed!
I am sending more prayers of support for you again and until you send an update. Stay safely in God's hands and know everyone here is thinking of you.
Wow you have been thru the ringer and i pray you get home soon. My surgery was 2 days before yours and still recovering but nothing like you. Sounds like this was not your first surgery was it? Hopefully ns will have this under control soon so you can focus on just resting. Sending gentle hugs and many prayers to you.
I am sending you some good vibes.
I think, if I understand the posting date, that it was earlier today that you started to keep some food down. I hope you are able to continue to get nutrition - and that the food you do get is better than average hospital fare. Are you still walking in the halls? It sounds like that is the most exciting thing any recovering patients do. I hope this post finds you recovering and getting ready to go home.
I think, if I understand the posting date, that it was earlier today that you started to keep some food down. I hope you are able to continue to get nutrition - and that the food you do get is better than average hospital fare. Are you still walking in the halls? It sounds like that is the most exciting thing any recovering patients do. I hope this post finds you recovering and getting ready to go home.
COMMUNITY LEADER
Glad to have an update...so sorry things have been going so slowly for you....I pray you are on the road to recovery and all will be behind you soon.
Sorry to have fallen off. Things have been very slow recovering.
I had surgery on July 9th where he went in, removed some more bone from C1, and did some minor touch ups to the patch. The pain wasn't too bad following surgery, and he said he felt the patch was in good shape and expected I would be home by the weekend.
A few days later I was getting CSF pooling around the C1 area, so he went in to once again check the patch and this time installed a lumbar drain. This time he said he would drain 10 ccs CSF from the drain every hour, for a day or two, hoping that it would give the patch some time to heal.
The few days after the surgery were a blur. My head felt pretty good all things considering, but my back was very painful. The surgeon took the drain out after two days suspecting that much of my pain was from lack of CSF.
After the drain had been out for a day and I was still miserable. I had severe headaches, blurry vision, back pain, nausea (I haven't kept anything down in over a week..), and the site from the drain was leaking. He ordered a blood patch which was, without a doubt, the most painful experience of my life. ..
Since the blood patch, my headaches are now far more tolerable, but still are very positional. My back is pretty painful too. He did a CT which was mostly clear (my ventricles were small, but probably just because of the CSF loss).
For now, I'm still in the hospital. The doctor has coined me his "conundrum" patient. I get a lot of bad symptoms when I was getting CSF drained, but my headaches were nonexistent when he was draining. I'm starting to eat a little today, walked a few feet in the hall. So, I might be getting released soon unless something else comes up.
Once again, thanks to all for checking in.
I had surgery on July 9th where he went in, removed some more bone from C1, and did some minor touch ups to the patch. The pain wasn't too bad following surgery, and he said he felt the patch was in good shape and expected I would be home by the weekend.
A few days later I was getting CSF pooling around the C1 area, so he went in to once again check the patch and this time installed a lumbar drain. This time he said he would drain 10 ccs CSF from the drain every hour, for a day or two, hoping that it would give the patch some time to heal.
The few days after the surgery were a blur. My head felt pretty good all things considering, but my back was very painful. The surgeon took the drain out after two days suspecting that much of my pain was from lack of CSF.
After the drain had been out for a day and I was still miserable. I had severe headaches, blurry vision, back pain, nausea (I haven't kept anything down in over a week..), and the site from the drain was leaking. He ordered a blood patch which was, without a doubt, the most painful experience of my life. ..
Since the blood patch, my headaches are now far more tolerable, but still are very positional. My back is pretty painful too. He did a CT which was mostly clear (my ventricles were small, but probably just because of the CSF loss).
For now, I'm still in the hospital. The doctor has coined me his "conundrum" patient. I get a lot of bad symptoms when I was getting CSF drained, but my headaches were nonexistent when he was draining. I'm starting to eat a little today, walked a few feet in the hall. So, I might be getting released soon unless something else comes up.
Once again, thanks to all for checking in.
I was just catching up and wanted to ask you if you had the second surgery, when did you have it, and where/how are you today (July 18)?
COMMUNITY LEADER
Thanks for the update....
If you need another surgery ask if they can harvest tissue from you...that may help and stop the need for more surgeries....sending you prayers that this heals on it's own <3
Thanks to all for the well wishes. A few days before surgery I started having symptoms similar to those I had before my first decompression. During surgery the durapatch was completely replaced with another cadaver patch and he did some work on C1. The exact details of the surgery are still a little fuzzy to me; he comes in very early in the mornings when no one else is here and I'm still kind of loopy from meds.
Anyway, he had originally though I could leave the hospital today or tomorrow. But, I've developed a pseudomeningocele, so he's planning to keep me longer. If it doesn't resolve by Monday, he's doing another surgery.
Anyway, he had originally though I could leave the hospital today or tomorrow. But, I've developed a pseudomeningocele, so he's planning to keep me longer. If it doesn't resolve by Monday, he's doing another surgery.
Today you are in many prayers and hearts as we are all standing around you in support. We pray you are well and in God's hand.
You will be in my heart and prayers. May everything go as planned and have smooth recovery.
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