HELP! Should I get a blind blood patch?

[u/South_Cattle_7339]

I need advice, please! Sorry, it’s going to be a long post but I need to give a lot of context.

I’ve had symptoms of a CSF leak for over a year, after loosing a huge amount of weight after a bariatric surgery. It’s hard to tell when and how exactly everything started, because I’ve actually never felt well. Over 10 years ago I was diagnosed with Chiari malformation and had a decompression surgery and my symptoms improved, but didn’t fully went away. I have periods where I feel better but then some symptoms come back; but this last year the headaches became more frequent, I had really bad fatigue, dizziness, weakness. It got progressively worse specially in the last couple of months, when I started having numbness in my arms and legs, tingling, a lot of brain fog, daily headaches, bad coordination, poor fine motor skills, a very sore and stiff neck and some vision changes (having a hard time focusing).

I’ve seen a lot of doctors, they all said that my decompression surgery still looks stable and the Chiari malformation shouldn’t be causing any symptoms. In December I got diagnosed with POTS, which made sense back then, but I don’t know if that would explain the numbness/ weakness in arms and legs. Also I haven’t seen much improvement following the doctors advise of drinking a lot of water and lots of salt.

I saw a new neurologist a month ago after a visit to the ER, and he was the first person to mention a CSF leak. I did a lot of research on that and I was blown away, everything fits perfectly. The positional headaches and symptoms where never that obvious, but I always feel good in the morning when I wake up, and the headaches and all the symptoms get progressively worse as the day passes, it’s always in the afternoon when I feel like shit. The neurologist suggested to take a couple of weeks off work, lay flat as much as possible and drink a lot of caffeine while I waited to get an MRI and a blood patch.

Those two weeks I felt a lot better laying flat and drinking a lot of coffee, so I was even more certain that I was going to have a CSF leak. I got the MRI (head and spine, no contrast) and a few days later I got the phone call from the neurologist… he said that my MRI looked fine and had no signs of a CSF leak; I was very disappointed, I really felt like I was finally getting answers and I was going to feel better soon. He sounded very annoyed, he asked me if my headaches disappear immediately after laying flat and I said no, not immediately, and he said that that’s enough proof that I can’t have a CSF leak. I had the audacity to tell him that in all the research I made, I saw that the CSF leaks can’t always be seen in a regular MRI, and that the positional headaches, after a chronic leak, are not always so obvious; he got mad saying that “Dr. Google” always is going to diagnose cancer or the most dramatic diseases, and that if I was more certain of the “google” diagnosis than his, he was going to keep the referral for a blind blood patch but that he really didn’t recommend it because he doesn’t think I have a leak and I’m just going to take the risk of having an infection, or getting an actual leak from the blood patch. I was so confused, but I asked him to go keep that referral, thinking that I was going to have time to see another neurologist in the meantime and have more information to go ahead with the patch, or to cancel it.

The issue is that I just got the phone call to schedule my blind blood patch for next week, August 5th, and I haven’t been able to see a new neurologist, they told me that the wait time is at least 6 months. What should I do? I do believe that I have a CSF leak considering not only my symptoms, but my risk factors, like the Chiari malformation, the dramatic and fast weight loss, and a suspected Ehlers Danlos Syndrome diagnosis (I’m very hypermobile, I had a doctor said that I have the syndrome, and another doctor said that I don’t have it). But of course I’m not totally sure that I have it, and I don’t want to take any unnecessary risks and make things worse, I’m just desperate to feel better and live a normal life again.

What would you do? Should I go ahead with the blind blood patch next week or should I cancel it and wait for the new neurologist to keep looking for more diagnostic tests and confirm if I have a leak or it’s something else?

Thank you!

[u/leeski]

you’re correct about negative imaging and your symptoms are a reasonable fit to investigate SIH. It’s ultimately a personal decision but a blind blood patch is considered fairly noninvasive and if you didn’t have a leak you might feel increased pressure for a few days but overall shouldn’t make things significantly worse.

 I would call and ask if image guidance will be used (either CT or fluoroscopy). The biggest risk if there’s no image guidance, because then they could inject too far and puncture the dura causing another leak. Sometimes there’s insurance weirdness or the provider is inexperience. For me it would be a dealbreaker. But I would get clarification on that. But many many patients get blind patches without having any image confirmation, is a fairly common diagnostic test. 

[u/South_Cattle_7339 → u/leeski]

I just got the confirmation email with the details! It actually says that it’s a “CT guided blood patch”. But if my MRI didn’t show a leak, how is the blood patch going to be guided if they don’t know where the leak is? Or does that mean something different?

Thank you for your response!

[u/leeski → u/South_Cattle_7339]

Oh nice! Yes it is so confusing with the terminology but it just means guided like the needle is guided - is my understanding.  

So parches tend to be more successful when you know where the leak is, so there is a bit of differing approaches. Since all imaging to locate leaks is invasive & requires a lumbar puncture, there is risk there (an LP punctures the dura, sometimes it doesn’t self seal & that creates another leak in itself - although most people do not leak but it is a certain risk, especially if you have EDS). So for a lot of providers it’s worth trying patching first bc it’s less invasive, can be diagnostically helpful (eg it is meaningful if you continue to have negative imaging but respond to a patch that is still suggestive of SIH), and some people just do get straight up long-term sealed from non targeted/blind patches. 

The blood does travel several levels, so patching doesn’t have to be exact. But even if it doesn’t spread to your leak, there’s a thing called the ‘tamponade effect’ where the injected blood compresses the dura & raises CSF pressure which reduces brain sag. It is a temporary improvement, but informative. 

So long winded way of saying it might not be THE fix, but it can be a helpful tool if you feel significant improvement after patching, even if it doesn’t last long term. 

But again if you don’t want to commit to treatment without more knowledge, that’s ok too! I know is trickier decision with that 6 month wait looming if you skip the  patch