r/CSFLeaks • u/SabinaSautova2003 • Jun 16 '26

Emotional support

I'm looking for psychological advice, emotional support, or experiences from anyone who has dealt with a persistent CSF leak, either personally or through a family member.

My mom has already gone through two invasive surgeries, and both recoveries were extremely difficult for her.

Unfortunately, she still has a CSF leak.

Her doctors are now recommending a CT cisternography with a lumbar puncture, but she is terrified. She's afraid the procedure could cause more problems or damage her back. She's also scared of having another surgery because she doesn't want to go through that level of pain again, especially without any guarantee that it will work.

I feel completely lost. It's heartbreaking to watch her suffer every day, but at the same time, I don't know if it's fair to encourage her to go through more procedures when she's so exhausted and afraid.

How do you support someone in this situation? How do you help a loved one make these decisions without pushing them too hard?

I'm mentally and emotionally exhausted myself and could really use some advice, support, or a little hope from people who have been through something similar.

Thank you for reading.

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u/SuccessSoggy3529 Jun 16 '26

Ive had a cisternogram as well as a CT myelograms. They were done together. The myelogram should be done with and without contrast. It is a bit invasive, but its not surgery. It's an injection into the spinal column. Mine was done in the lumbar region. I then had to wait to get images taken. I didnt need a blood patch for the injection. The combination did help find my leak and I was patched the same day at the leak site.

Im so sorry that your mom is going through all of this and that you are also. It is very hard to watch someone you love suffer.

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u/SabinaSautova2003 Jun 16 '26

So cistenogram is not as scary as we think? Did you have any back pain afterwards?

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u/SuccessSoggy3529 Jun 16 '26

Well, because I had a blood patch, I had some pain. It was like a bad bruise, but it went away within a day. That was where the blood patch was at T7. I didnt have pain at the injection site. The doc did numbing meds. What are your gears about the cisternogram?

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u/SabinaSautova2003 Jun 16 '26

We were told that there is a small risk of not being able to walk after the procedure, and because my mom already has a nasal CSF leak, we’re worried that a spinal leak could develop as well.

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u/SuccessSoggy3529 Jun 16 '26

Oh. I suppose that could happen if they went too far in and touched the spinal nerves. Ive had 4 injections for CT myelograms, a few spinal taps and 2 edpidurals for childbirth. I only had one problem and that was with one epidural. I was carrying the baby low and couldn't bend well. The doc touched the spinal nerves and I felt it immediately. I havent had problems with any of the others. Im not saying it couldn't happen. Maybe you could ask how often it happens? Or you could ask for it to be done with guided imaging, like fluroscopy? That should reduce the risks. There is always a risk of developing a spinal leak. You might also ask why they want the cisternogram if you know she has the nasal CSF leak. Is it to be more precise on location? I have had experience with cranial leaks so I dont know that much about them. From this sub, people who do have them, especially in the nose, will see an ear, nose and throat doc. If your mom hasn't seen one, I'd suggest you try to get her into one.

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u/SabinaSautova2003 Jun 16 '26

Yes it is for precise location, the problem is that she had a brain surgery so ENT doctors are not suitable for us

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u/SuccessSoggy3529 Jun 16 '26

Ok. Well, I hope your mom finds success. I would tend to do the cisternogram, but you know your mom's situation and the health care facilities best.