CSF Leak: My Blood Patch Experience - Post-Op

[@purplemaninsj2782]

I have had a spinal fluid leak for 8 months after spinal fusion surgery. They just found it. I am hopefully getting a blood patch soon. I hope you are recovered.

[@ChronicallyJenni]

It sucks that these things take so long I had a spontaneous leak and was leaking for 2.5years before the found out what was going on. Best of luck to you. I'm now all sealed x Love & Spoons xx

[@MrRedfreds]

I've had 2 failed blood patches and its 16 months later, still waiting to see what happens next, second one damaged my left leg and i now have severe pain and muscle wastage, nightmare for me, i tore my dura on a roller coaster, hope you're getting better 🙏

[@agirlisariot]

omg my pots makes me the same way, i much prefer to be cold than hot! i'm so sorry this experience isn't going as you hoped, sending you love and spoons 💕🥄

[@ChronicallyJenni]

It's awful isn't it, I'm already dreading the summer! Thank You x

[@blessing6096]

What is pots?

[@michellefixit]

​@@blessing6096, POTS: Postural Orthostatic Tachycardia Syndrome. 😊

[@najwaalami6858]

I just saw that you also have POTS .was that caused by your csf leak as well? Is that what caused you headaches? I am sorry asking so many questions ? It's a blessing when you find someone who understands you

[@ChronicallyJenni]

najwa alami I have EDS which causes my POTS & leak x it's okay you're always welcome to answer whatever questions you like and I'll do my best to answer xxx

[@ahilleastsavalos5573]

How long were u on your back after surgery?

[@MRAIDANGWALSH]

Jenni Pettican where was your blood patches done in London area? How did they find it was it with the CT Myelogram or Mri? Hope you feel better soon ...blesses hugs get well...

[@ChronicallyJenni]

Yes diagnosed under NHNN and patches done at the Wellington. MRI and Intercranial Pressure Monitoring. Thank you :) x

[@MRAIDANGWALSH]

thanks :)'s

[@prashantchaudhary3744]

hey jenni how are you feelimg right now and did your leak gets healed properly and how old are you as i have symptoms and want to know if i could have csf leak

[@ChronicallyJenni]

Hey I had my leak from when I was 19 and had my patches when I was 21. That was back in 2017 and thankfully I've been healed ever since. If you want to chat more about it definitely drop me a message or email (contact info is all in the description) and I'll do my best to help. It's such a horrible thing to be going through.

[@najwaalami6858]

You mean not many got fixed after one Blood patch? Mine was caused by an epidural last year. I've been told since it's not a spontaneaous one... it could get fixed quicker. But now is day 4 after my blood patch, and having a lot of upper back pain(between shoulders) and intense headache. Do you think that's normal ?

[@ChronicallyJenni]

najwa alami Yes sorry meant haven't heard of many who've been better after one but I know more about spontaneous leaks x it could be that you are experiencing rebound high pressure, if you're worried definitely contact your neurologist x

[@diana-nd5pq]

Hi Jenni! Did you have rebound headaches? And if so how long? Thanks :)

[@ChronicallyJenni]

Hey Diana, Yes I think a lot of the headaches in this video were more rebound headaches after about a month I noticed real improvements and my no longer have a daily headache. Lots of love x

[@diana-nd5pq]

Thanks so much for replying! So glad you no longer have daily headaches! I haad a blood patch on February 9, went into high pressure for about a week. Back in low pressure, have another blood patch with Dr. Carroll again soon. Not giving up! You inspire me💙💜

[@ChronicallyJenni]

How are you feeling? My Doc managed to bruise my spine in the first one so I was super uncomfortable for quite a while. Hope you don't end up having to have too many before you get some relief! I think 3 is definitely the magic number. So much love to you, you're doing incredibly! Thank you so much that's so lovely for you to say x

[@diana-nd5pq]

Chronically Jenni I have been having really bad spine pain too. Wakes me up at night! I'm having my next blood patch on March 23rd! It will be my second patch!

[@ChronicallyJenni]

Bless you. Good Luck with the next one hoping it will be the last one for you x

[@donialindo5244]

Hi I'm also Vlogging about my CSF leak. Are you healed and sealed now? I'm waiting for my 6th BP now :( but getting referred to Queens Square London x

[@ChronicallyJenni]

They think I'm healed and sealed now after my 3rd but still have daily headaches due to other medical conditions but nowhere near as badly. Where are you being treated at the moment? I was under Queens Square but had the patches done at the wellington. Hope your sixth is your last! x

[@donialindo5244]

I am currently being treated between southampton/portsmouth but they have now said there is nothing more they can do for me apart from blood patches (which keep failing) so getting referred to Queens Sq now to see if they can permanently fix me x

[@ChronicallyJenni]

Hopefully Queens Square will be able to help but it's a bit of a journey for you. Hope you finally get some relief xxx

[@blessing6096]

Why are you given so many blood patches? Are they relieving your migraines? I just developed these bad pressure migraines after a lumbar puncture and having a blood patch in the morning currently in the icu waiting for the procedure in the morning but trying to research

[@najwaalami6858]

Hi Do you still have headaches? I just had my first blood patch 3 days ago and am stuck with the upper back pain And Braun fog

[@ChronicallyJenni]

najwa alami Hi I do still have headaches but it's my other conditions causing them my leak is fixed. My first and second patches didn't work so was still suffering badly after each x try and stay flat and take it easy to help it but I'm afraid I have heard of many people who've been fixed with one patch xxx spoons and love x

[@hanieletsantos3687]

Hi Did you had a 2nd blood patch? Did it resolve your brain fog immediately?

[@mollaanichur9459]

How much cost this treatment?

[@ChronicallyJenni]

I'm not sure I'm afraid x

[@zs2001]

@@LouBlueable I believe it’s cocodamol - paracetamol + codeine

[@mollaanichur9459]

It is painful?

[@ChronicallyJenni]

It was painful during but mainly as sedation didn't work as it should've done. The first one was very painful after as they bruised my spine during the procedure but the others were okay after a couple of days.

[@carlabartschi5052]

@@ChronicallyJenni What do you mean by bruised your spine? How did they do that? How are you now?

[@najwaalami6858]

Please Waiting for your asnwer