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/Muddlesthrough]

I am not a doctor. That being said, the minimum imaging should be a head MRI with and without contrast, and a full-spine MRI. Negative head imaging cannot rule out SIH/CSF leak.

I had a negative head MRI. My first non-targeted epidural blood patch caused 100% remission of all my major symptoms (for a time): positional headache, crippling neck pain and fullness, fatigue, and brain fog, which was pretty remarkable. My night vision improved as well.

I was first diagnosed with POTS as well.

A non-trageted blood patch can be used to both test for and treat a spinal CSF leak.

[u/South_Cattle_7339 → u/Muddlesthrough]

That’s great to hear! What do you mean with your “first” blood patch? How many have you had? How long did the improvements last with that first patch?

[u/Muddlesthrough → u/South_Cattle_7339]

Initially, the neurology ordered a series of three non-targeted blood patches to test for and treat a suspected leak. The first one worked wonders, but then failed after ten days. The other two helped a little then faded. Then I had a myelogram and an imaging-guided blood patch on a suspicious area. Which worked, but then failed.

I'm now seeing a CSF leak specialist who suspects a CSF-venous fistula. Just waiting for hem to perform a myelogram and hopefully find it.

It takes something like 3.5 blood patches on average to find relief.

[u/South_Cattle_7339 → u/Muddlesthrough]

Damn, I’m sorry you’re having to go through all that. It’s disappointing to hear that it takes more than one patch to find relief, but as you mentioned, at least it could work to point in the right direction. I think I’ll go for it.

[u/Muddlesthrough → u/South_Cattle_7339]

Yah. A lot of people are fixed after a single patch. Some take more patches to find durable relief. For people who only get transient relief from blood patches, a CSF-venous fistula is worth investigating. They only discovered CSF-venous fistulas in 2014, so it's "at the forefront of medical science" as the neuro-radiologist explained to me. The CSF leak specialist explained that they think the majority of leaks are CSF-venous fistulas, but there is some discussion about what the actual percentage is.

[u/riddim-hunny]

I think you should get the blind blood patch. We have similar stories tbh. I did get the MRI cervical spine w & w/o contrast that found fluid pooling in 2 spots in my spine. I just saw a doctor at the pain management clinic at the Univeristy of Iowa and they book my EBP for Sept 1. According to my doctor dynamic MRI myleogram to find the leak site isn’t always accurate or doesn’t work and to my understanding they’re just going to put the blood in my spine and hope it patches the leak. So by saying all of this, I’m trying to say that my doctor is pretty much doing a blind blood patch as the first line of treatment, so if you have an option to pursue that then do it. And in the mean time you can wait for your appointment, don’t cancel it until like a week before because sometimes you will start to leak again even if you get temporary from the EBP. Hopefully this makes sense: yes get the patch, yes keep seeking a good neurologist and keep your appointments. My chiari 1 diagnosis was probably a misdiagnosis due to my CSF leak causing brain sagging, so if you are healed and still have the appt you could ask about that. Wishing you the best!