New update possible CSF leak being bounced between doctors

Surgery was April 29th i felt great after surgery better than i had in years then one day i thought it would be smart to run for my phone as i fell upwards and missed the call (not even an important one) i began to backslide daily. i scheduled an appt to see the ns who did my surgery he ordered xray images and during our appt said he believed it was bone spurs referred me to PT and back to my pain clinic doctor. seen the pain clinic doctor last tuesday who did an ESI for bone spurs and tigger point shots in the muscles on each side of my incision saying they were tight. again i was feeling great for months had full range of motion etc.. on Wed i woke up to an awful headache nothing would get rid of sore and miserable was an understatement and this procedure felt different than anyone before it IT WAS SO PAINFUL...okay so onto Thursday pain still there and leaking out of my incision watery stuff..strange so i call the pain clinic they say call the surgeon they say go the ER they shoot me up with pain meds, gie me a neck CT (thought it was a head) said i had torn ligaments and gave me a cervical collar to wear for 2-3 weeks...ugh friday night more leaking, more pain i am eating my pain meds like crazy nothing is touching this headache unless i lay flat down no collar on my couch, i of course research and come up with CSF leak, i wait it out over the weekend resting in bed and drinking lots of fluid no change today i couldnt take it anymore i called the doctors again one says to call the other and the NS nurse finally says go back to the ER. so i do they ran a full CT Scan and all sorts of tests and told me i probably have a CSF leak that needs a blood patch but i have to call the pain clinic doctor who did the procedure to fix it or order the fix...i left the hospital Balling...are you flipping serious??? so tomorrow or today i should say i have to make more phone calls. i just want someone to make this damn pain stop GRRR hopefully more answers tomorrow i am frustrated and still trying to deal with the fact that what i have is not curable it will be the rest of my life in MRI's, CT Scans, pain meds, pain doctors, surgeons and PAIN for the rest of my life..sitting here typing this is killing me and this is my job daily i have to work on the computer thankfully i work from home but i got nothing done today trying to give me that few days of rest and liquids did nothing the dillatin at the hospital worked for 20 minutes and the pain was back as soon as i sat up. why are they playing the doctor blame game i dont care how it happened good god fix it!! sorry for the vent i am going to bed hoping for a better day tomorrow

What a terrible thing that no one will step up and help you! I'm sorry for what you are going through. I would tell the nurse at your NS office that you keep going to the ER and they just give you pain meds and aren't helping and that you need to see the doctor! Make sure they know you are leaking fluid!!!

Please keep us posted on how you are doing!

This is a very bad situation and actually happens often that a person needs a blood patch and it takes much longer than it should. Though usually it's resulting from a leak from a Lumbar Puncture. You have to have this done to relieve your pain. Did they tell you to drink caffeinated beverages? That will help the pain better than pain meds. Please let us know how you are doing. If you have to go to the ER refuse to leave, tell them you have a CSF leak and it has to be fixed or you are calling the local media about the NS & facility for not helping you from the ER. This sounds extreme and absurd but I know the pain you are feeling. It's horrible & only they can fix it. Trust me they don't want the media called. Also call the Facility Patient Liaison & ER Supervisor & Hospital Administrator and ER Nursing Supervisor. Call everyone if you have to. Someone will step up and make sure you are treated correctly. Tell them also you are going to call your insurer's provider rep and report them all for negligence. I worked in appeals for an insurer. At times you have to do what you have to do. Beeba reminded me of this when I was in the ER one night. They will help you. Sometimes you just have to hold them to the fire and be strong. You are your own Medical Advocate & I know you can do this to get rid of the pain. Do not take no for an answer or allow them to pass the buck anymore. I am so very sorry.

Please update us. I am really worried about you.

Tracy Z.

Did you try 2 Advils?

They gave me three different pain meds and nothing helped finally I was traveling and begged the hotel to sell me some Advil believe it or not it calmed it down. I have to take Advil every day between 6 to 8 hours to help with the pain and pressure.

I hope and pray you feel better soon.

If CSF is leaking out of your skin, bacteria can get in. Should bacteria get in, the likely infection is meningitis, which can cause dramatic scarring at the surgical site, destroying any benefit you may have received from surgery. Neither you nor your surgeon want that.

I agree with the above comments. You have been more than tolerant enough. TracyZ's tactics will get results.

Go now. You will get more attention during the day. Weekends and nights are always skeleton shifts. If you are dying, you will get treatment. If not, you will get triage. You have gotten triage so far. You need to stay until you get treatment.

As an aside, I've never heard of a blood patch working for a CSF leak in a surgical site. Yes, they are used after LP when the volume injected is a few milliliters. The opening of the surgical site would be a much larger volume.

Typical treatment for a leak after Chiari decompression could include diamox(to reduce CSF production), oversewing the incision(to keep the CSF from leaking externally, although it would still leak into the paraspinal musculature), or wound re-exploration for closure of CSF leak(often with a lumbar drain to serve as a secondary site for CSF egress).

my surgery was 6 months ago, what would make fluid leak from the incision after an epidural steroid injection and 2 trigger point shots in the muscles on each side of the incision now? i feel horrible, it isnt so much a migraine its more like the back of my head is in a vice filled with pressure and i am nauseous. They checked my blood for infection they said it came back fine, i had wheezing in my lungs they gave me a breathing treatment and an IV to hydrate me, i have several swollen lymph nodes around my neck but no fever. I asked for an MRI they said no they gave me a CT Scan. Is it even safe to have a blood patch procedure if i have a viral infection?

I have stayed up all night researching this because they did call me back at the end of the day yesterday and scheduled me for a blood patch. I feel like they are not trying to help they are going by the ER doctor but not examining me seriously themselves. Is it odd that they are going to do this without having an MRI done? I am scared to death to go to this appointment if it is a leak it could help but if it isnt and its something else could it hurt?

i am so confused and frustrated

The Epidural steroid injection was for bone spurs i keep saying cervical but i think it was below my shoulder on the left side of my spine that the Epidural injection was done

I apologize. I misunderstood the timing. The urgency in terms of leak and infection may not be as high but certainly your pain remains an issue. The leaking you describe is very atypical and would still warrant better treatment. Going through the ER is the most likely means of rapid evaluation(meaning, don't leave until you have had treatment, which will probably require admission).

I went in for a blood patch and he didnt do it he set me up for an MRI with and w/o contrast for Monday drugged me up and sent me home. Knocked me out for 17 hours straight i dont think i have ever felt that way from meds since my surgery.

i was doing better until i resumed normal daily routine he isnt ruling it out but he has other suspicions and before he speculates he wanted an MRI this was the pain clinic doctor who did the cervical epidural injection my NS was not in and will not be back until the 31st

UGH!!!!! again left in tears i am so seriously tired of this crap

the NS nurse woudlnt call me back, my insurance is asking if i have filed a malpractice suit and i have not i did switch pain clinics though. after the staph infection and the bouncing back and forth of blame between my NS and my pain doctor i had enough and switched. i see them on the 26th the staph is now gone but the pain is back with a vengeance in my spine and shoulder, very lightheaded when i stand up and just an overall yuck feeling. My primary care doctor is sending me to get an MRI and an infectious disease doctor to ensure nothing is internal. even with the staph gone for now she wants me to keep the appts so we can get to the bottom of it and if they reoccur i will already have an appt.

Thanks for all the kind words and advice!