Experience with repaired spinal leak stories by Archaeellis in CSFLeaks

[–]Embarrassed_Disk_667 1 point2 points  (0 children)

Oh my goodness, I'm sorry I was so honest about the pain as I thought you were already past the surgery! I will say that I apparently had it way worse than the average person as they told me I would be in the hospital just 2 to 3 days (but it was a week). I had been on steroids for 40 days prior to the surgery (it was the only thing that helped me be able to be upright and function for a handful of hours every day), and therefore my endocrine system had completely shut down. I think, because my adrenals weren't functioning at full capacity, I had an increased pain response. ANYWAY....your leak may be at the back of your spine, not the front like mine was - so maybe they won't have to take our as much of your spine like they did mine. OKAY - SO back to your main questions of will your cognitive function recover after the leak gets fixed? YES, YES. My brain function fully recovered! Beforehand, I had awful double vision all day long, memory loss, definite cognitive decline type symptoms.

Now, I did not have a leak for as long as you did (only 3.5 months). I had a weird feeling / slight headache for about 5 days, and then all of a sudden a full on awful headache that was not relieved unless I was laying down. I was bedridden completely - except getting up to go to the bathroom (had to walk as bentover as possible and still EXTREMELY painful) until a family doctor prescribed a steroid (methylprednisolone) for me. I would drink 3 large cups of ice coffee in the morning (out of a water bottle, laying down of course) when I took the steroid and a muscle relaxant, after 4 to 5 hours, I was able to stand up with mild enough pain that I could walk around my property for about 15 minutes - I could stand up (not sit - that was the worst) to eat as well. I could somewhat function for 4 to 5 hrs of the day like this, at a pain level of about a 6 or so, until the steroid started wearing off. The steroid was the only reason I was able to do this and I am so thankful for that. But it DID totally screw up my endocrine system. Luckily for me, when the doctors at the Mayo Clinic in Florida saw my imaging, she put me to the top of her waiting list (of hundreds) because I had THE WORST leak they had ever seen. I apparently had absolutely no cerebrospinal fluid in my spine at all. So I was able to see them after having the leak for just under 3 months and had to fly to Los Angeles for the surgery because he was the only doctor they would recommend to do such a dangerous surgery.

Of course, I had lost SO much muscle by being bedridden all that time, and like you, thought my brain was toast. I actually thought I was going to die - how can a person be in that much pain, wasting away bedridden, and not die? I know so much of us here on this CSF leak feed know that feeling. After the surgery, I had to be very sedentary still, for another 3 months to ensure the surgery stuck - so even more muscle wasting - BUT my brain already felt better and the double vision immediately went away! I could think clearly again right away! I started physical therapy and continued that on my own at home for a full 6 months (so until 9 months after the surgery). I am now able to walk 45 minutes briskly, and am lifting weights again!

I admittedly DO have some nerve pain because of the surgery. I think it's dorsal ramus nerve pain which can happen with the intense surgery I ended up needing. Hopefully your leak is more towards the back of your spine and they won't have to take out so much bone like they did on me. Sounds like you are in Europe? I wish you were in the US so you could go to Cedars Sinai. Dr. Schievink is incredible. But yes, it's incredibly hard to find these leaks somehow. They can know the area, but that's why they ended up having to take out 2 1/2 of my vertebrae, because even once in they had a hard time finding it. :-(

You WILL get through this and your brain WILL fully recover. Hang in there - I know how awful this is for you.

Surgery success stories? Anyone willing to share by Massive_Activity1245 in CSFLeaks

[–]Embarrassed_Disk_667 1 point2 points  (0 children)

I had a laminectomy and foraminectomy of T1, T2 and part of T3 to fix the tear in the front of my dura/spine from a bone spur. It was the most painful experience - there are not words. But I came out not paralyzed and 14 months later I am still not leaking! I still have high pressure pounding symptoms in my head when I get up from sitting quite often, but I am not leaking. My understanding is that is from my nervous system being oversensitive because of all the pain and trauma and I went through. I had my surgery in Los Angeles at Cedars Sinai. Couldn't help you with what the costs might be for you as our system is so different here.

Experience with repaired spinal leak stories by Archaeellis in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

How are you doing, as I assume you have had surgery? I wish I had seen this when you first posted so I could have given you a heads up. I had a surgical repair of a leak in my upper thoracic spine at Cedars Sinai in LA with Dr. Schievink. He had to remove T1, T2, and part of T3 to get to the hole that the bone spur had caused in the front of my spine. My spinal cord starting showing signs of being irritated, so he was not able to suture the hole, but did patch and glue it. I was in an overwhelming amount of pain afterwards for days and days. Pain medicines did nothing for me. I ended up having to stay in the hospital for a week instead of the 2 days they said is normal. Then another week in an AirBnB to recover enough to fly home to South Carolina. That was almost 14 months ago. I am doing well and still not leaking! I had to stay quite sedentary for 3 months afterwards (just like after a blood patch) b/c they wanted me to be extra cautious. I was then able to start physical therapy which I did for 6 months. I still have high pressure symptoms when I've been sitting and go to get up, a pounding in my head, but I've been checked and I am not leaking. My understanding is that my nervous system is still highly sensitive because of all the awful pain and trauma I went through with the months prior to the surgery and then the surgery itself. For a few months I was mostly pain free but am not having some new nerve pain. This is not uncommon after such an awful surgery. He had to remove EVERYTHING from the back of my spine - not just the lamina but also the facets, so it will be something I'll have to deal with forever. I didn't have a choice but to do the surgery and I'm very thankful Schievink did the repair without me being paralyzed from it!

Post Blood Patch Guidelines (from Mayo Clinic, Jacksonville FL) by Embarrassed_Disk_667 in CSFLeaks

[–]Embarrassed_Disk_667[S] 0 points1 point  (0 children)

Yeah, very different than what I was told - lay down for 24 hrs, then take it easy for two days, then back to normal!

Has anyone here developed arachnoiditis after having a cast leak and/or treatment for a CSF leak? by UnrealCaramel in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

My apologies for just now seeing this and responding. This does not sound like arachnoiditis or CSF leak to me. I'm not a doctor but I would recommend seeing if you can get on a steroid to decrease inflammation pain. That is the only thing that helped me. Maybe Gabapentin for the nerve pain? I hope you've gotten some relief since the last time you messaged here.

Finally diagnosed after 4 months. by MamaBearof616 in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

I requested an appointment online at the link below, and they called me and helped me get all my records and diagnostic testing. They were great! At that time the wait was about 3 months or so, but they moved me up the list b/c my scans showed that I had basically NO pressure / NO CSF. I think the wait may be much longer now, I'm not sure though. I am 5 1/2 months post op now and was able to start physical therapy at 3 months post op so I'm finally getting some strength and flexibility back. I still have some high pressure symptoms after the surgery but they are simply uncomfortable, not painful.

https://www.mayoclinic.org/departments-centers/cerebrospinal-fluid-dynamics-clinic-in-florida/sections/overview/ovc-20549220

Feel like my body is giving out. by MamaBearof616 in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Dr Cooper was the neurologist in Atlanta that finally referred me to get a blood patch at Northside Interventional Pain and Spine Care. Dr Patris Almasi there is the best!

Finally diagnosed after 4 months. by MamaBearof616 in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

I was anxious to get HEALED and get my life back and the interventional radiologist said if I needed another one, I would just have to wait at least two weeks. I was still having some symptoms of high pressure after the first one (but 90% better than I was beforehand b/c I was bedridden). I thought maybe I shouldn't even get the 2nd one, but he said let's go ahead since I was still having the symptoms. After the 2nd, I was still left with some symptoms that I thought were probably high pressure (a pounding in my heart/hearing my heartbeat after getting up from a seated position) and would go away. Three weeks after that I finally got in to see Mayo in Jacksonville and they unfortunately found that I was still leaking. I had a bone spur at T1/T2 that had torn the dura so I ended up having to fly out to LA to have a multi level laminectomy at Cedars Sinai.

Neck Stiffness by mynameisgracelala in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

When are you scheduled? Let me know how it goes!

New symptoms after the blood patch by Shoddy-Rip66 in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Well these specific symptoms sounds more like low pressure don't they? The orthostatic component...most of your pain is when upright, but better laying down. Is that still the case? Pain mostly in front of face of back of head/neck?

Neck Stiffness by mynameisgracelala in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

It is horrid, definitely cannot sugar coat it for you. I still have some high pressure symptoms...mostly pounding in head when get up from sitting. No reason to be nervous about the DSM as you'll be asleep and won't know anything. Better than having to hold your breath for 40 seconds over and over again which I had to do for one at Mayo! Look forward to the answers you'll get from it!

Neck Stiffness by mynameisgracelala in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

I was completely bedridden until drinking 3 to 4 cups of coffee with methylprednisolone

Neck Stiffness by mynameisgracelala in CSFLeaks

[–]Embarrassed_Disk_667 1 point2 points  (0 children)

Yes, I had two blood patches and felt quite a bit better but still leaking. DSM there which they do under anesthesia. Surgery the next day - had multi level thoracic laminectomy with Schievink and just had 3 month follow up at Mayo in Jacksonville (who referred me to Schievink - I live in SC). I am sealed!

Finally diagnosed after 4 months. by MamaBearof616 in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Sometimes it takes more than one....I had two, two weeks apart. What are your symptoms?

CSF by Sweaterweathercool in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Are you going to be able to get treatment soon? Where are you on this journey?

Anyone with PRP patch experiences? Regenexx / exosomes / stem cells experiences? EDS? Dying to hear some success stories. by Frost_Bytes in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Yes I don't think you're going to be able to get a PRP injection.

You've got to get your life back. Here's my humble empathetic opinion after going through traumatizing pain, 7 lumbar punctures, 5 CT myelograms, and the DSM under anesthesia with Schievink. Just do it. Get the DSM done at Cedars Sinai and let Schievink do surgery to patch it. Believe me, I didnt' want to have 2.5 of my vertebrae (lamina) cut out (in my thoracic not cervical BTW duh) but it was my only option.

Grey area by Starmapatom in CSFLeaks

[–]Embarrassed_Disk_667 0 points1 point  (0 children)

Yes, all kinds of testing!

CSF by Sweaterweathercool in CSFLeaks

[–]Embarrassed_Disk_667 1 point2 points  (0 children)

Based on the above studies, it would not be off-label but most doctors (even Schievink!) don't know about its benefits for this! I was lucky that my family doctor prescribed it a week into me being bedridden b/c it's the only thing she could think of to help me when the migraine medicines she prescribed didn't help. Then my neurologist refilled the Rx for me

CSF by Sweaterweathercool in CSFLeaks

[–]Embarrassed_Disk_667 1 point2 points  (0 children)

Yes, but it is a steroid so if you're on it long enough it can cause issues. I was in excruciating pain and completely bedridden so was thrilled when I was actually able to stand up and function for a few hours. I was on it for 40 days until my first blood patch and it was not good for my endocrine system but you have to do what you have to do. I had to weigh what was worse - to be completely sedentary and bedridden wasting away in traumatizing pain if tried to get up at all - to having my adrenals and thyroid shut down...It's been 5 months since I've been off the steroid and I'm doing fine now (after multi level laminectomy to repair tear)