I am sorry that I have been away.
Second surgery corrected CSF leak, but it has returned.
I am suffering with pressure pains, and general discomfort.
My GN pain is gone still. Only a couple of minor reminder twinges.
Not sure what the plan is now. I already had Duraplasty and a lumbar drain for 5 days. Now the leak is back.
Heres hoping everyone good days
Sending positive thoughts smash!!
Take care of you. Hope this gets resolved ASAP!
(( hugs )) Mimi
Oh my gosh --- I'm sorry you are still in the throws of this leak----- Leak Be Gone!!! Hope it is soon along with all the crap that goes with it dear!
Thanks for posting. It’s heartening to hear the GN pain is gone. Hope they get that leak sorted, it’s been going on too long.
Oh bless your heart! So sorry Smash! Hope it gets better SOON! XXOO
Damm, that lumbar drain was a drag too. I hope they figure something out quick
Thanks all for your support.
I dont know what the plan is. Ive run out of leave from work already. Ive had to take some time without pay.
Im back at work, and it is tough. Im affraid Ill have to take more time off.
At least there is no GN!!!!
Here is hoping you all have a pain free day.
Still have second CSF leak. Low pressure headaches started a month to the day afte leak was noticed.
I had an ultrasound because they thought I had lymphnode issues, turns out its just more sacs of CSF.
Lowe pressure headaches suck. I Need to sit up straight in my job.
By the time I get back from work I am exhausted and head throbs. Laying down helps, but standing up and pressure headache comes back.
Ive got an apointment with NS this week, so who k ows what to do.
Im out of sick leave / vacation time.
Ive also reduced my salary spread over 12 months to take 10 weeks off.
Im having to take unpaid days off now, so I try my best to get in.
GN pain is gone. Not gonna lie, Id do this all over again, without question if the pain is gone. GN was controling me. Meds made me a zombie.
Im off all my pre MVD meds, fuck that was tough. More withdrawal then I was told about.
Keep it real all.
Just got back from NS - Prescribed Acetazolamide (diamox) to try to reduce the CSF pressure. He is not sure of what the next step will be.
I've been given Dilauded to help with the pain. It is such a depressing thing, to be better and sick at the same time.
My GN pain is still gone, but these low pressure headaches are at a level 6/10.
If only I could bring in a bed to work. Oh wouldnt my co-workers love me.... I'd even stay in my PJ's with slippers and everything.
Has anyone taken Diamox for CSF issues? How many Dura repairs did it take to "fix" your leak?
It’s just marvellous that your GN pain is gone but crap about the continued headache and CFS leak. I have not heard of this med, just wanted to let you know my fingers are crossed.
And seriously, is there a way you could do some of your work lying down?
If I brought a bed and wore my pj's, I wouldn't get shit done! LOL! I am so thankful for the people I work for. They are good as gold to me and I can tell you that I would be paid if I am off for anything. And they know that as soon as I could sit up in bed, I would probably be calling them and telling them to bring me some work that I can do from home, LOL! Praying that you get relief soon and you can get on with your life!
Low pressure headaches got worse. Wife brought me into the ER.
They removed 5ML of CSF from the area with a needle. Im on a triple dose of the diamox now and am on strict bed rest.
It looks as though I am in for another duraplasty - this time they will enlarge the opening to give them more to adhere to.
My Dura layer is really thin at the affected area.
Oh Smash, I’m so sorry to hear this…I will hope and pray that relief from all of this is near…you deserve a break at long last. Bed rest sucks but so necessary… Take good care of you…don’t worry about work or anything else, at this point it’s ALL about you…the rest will all work out eventually…continued positive thoughts!
(((( hugs ))))) Mimi
Since my work is mostly remote anyhow, my work is allowing me to do some from home.
I have at least 2 weeks, until my follow up with the NS of remote work.
This relieves so much stress it's not funny. It's tough to go without pay.
Hi Smash - glad I popped in today to see your update. Fingers crossed you can get some relief and recovery.
praying for you man. for mine, after they took out the mesh plate deal i healed up. took a couple weeks then one day the place where the hole is just shrank. i can still feel it bulge out if i create pressure though, so i try not to do that. also the csf has some protein, might help you to get some amino acid pills and start taking them, not just regular vitamins, as your body is making the csf non stop now and at a higher rate then normal, and that could affect the healing . here is a link to read more then you ever want to know about it...good luck
Hi smash. So sorry. The lumbar drain SUCKS. Hated it. Diamox does lower the pressure. I have high CSF issues on my own normal self and have to take it. 1,000 mg a day. Makes you pee like crazy, so that won’t be fun for your low pressure headache having to get up so often to use the bathroom. I have to look it up but my surgeon used 2 layers of sealants when sealing me up to avoid a CSF leak in my head. I know one was a thick layer of DuraSeal but I don’t remember the name of the other one. I’ll try to find it for you. It worked because I got a leak in my spine instead. LoL I hope you feel better soon. Take care and take it easy.
Smash and others,
I just found my OR report with what they did. Besides closing the dura with nylon sutures, the surgeon put a small muscle graft because he noticed some dura fraying. Then he "placed some Tisseel and then a piece of DuraGen and then Gelfoam on top of that." He then put the metal plate they say cutely call the "manhole" and sutured me up.
Tisseel is a fibrin glue (or sealant) used to create a fibrin clot. It is made up of fibrinogen (lyophilised pooled human concentrate) and throbin (bovine, which is reconstituted with calcium chloride) that are applied to the tissue sites to glue them together. Thrombin is an enzyme and converts fibrinogen into fibrin monomers between 10 and 60 seconds giving rise to a three dimensional gel.
DuraGen (if I'm understanding what I read correctly) is a collagen graft used for sutureless repair of the dura. So what my doc did would be like adding two layers of duct tape on a leaky pipe vs one, if that makes sense.
Gelfoam comes either in a powder or sponge. I'm assuming he used powder, but maybe I'm wrong. It's an absorbable gelatin powder that can absorb and hold many times its weight in blood or fluid. I'm guessing he used it to help absorb left over blood or CSF to make sure everything was dry before closing me up. Not really sure.
I was very concerned about a brain CSF leak so I was very specific with my questions about what he used to seal me up post op when I had my consult. I recommend all to ask their surgeons. Doesn't mean a CSF leak won't happen, but you want to make sure your doctor is putting as many layers of duct tape on that leaky pipe. At least I did.
Hope this helps those who have had surgery and those thinking about it.
I am new to the group, but have been reading your discussions for awhile now. I can't tell you how much hope and peace you have given me to just know that I am not alone, that my pain is real. To make a long story short, I had a 6 month episode of this in 2008 that was misdiagnosed and eventually resolved despite the treatments thrown at it. In 2011, it returned with a vengence and hasn't let up. I have been passed around to every doctor willing to see me, taken every med they threw at me, had nerve blocks and had a pulsed radio frequency ablation of the stellate ganglion without relief Your stories have helped me finally reach a diagnosis, and hopefully a solution. I have been in contact with the Doctors in Pittsburgh and will be considering my options soon. I am curious as to how you are doing now, do you still feel it was worth the complications, and do you have any suggestions to help prevent them?
Hello! I totally sympathize with you. During my mvd the surgery took much longer than expectee and a hole ended up being in my dura. Another surgery and a lumbar drain and three weeks later it finally stopped. Sorry you are going through it. The lumbar drain is horrible. My surgeon said sometimes the skull is rough from the surgery and needs to be buffed out like a car…actual words.