Question about cervical EBP and pain relief

[jacqsmom]

I just posted on the rollcall sticky about my situation.

I just spoke with my doc about the results of the MRI. It came back "normal", and I was told to rest, take pain meds and wait for the tear to heal on it's own. Or I could come in for a cervical EBP. I'm not so sure that I'm all that excited about having them stick another needle in my neck. Especially with the size of the needle needed to deliver 20 cc of blood.

Has anyone had experience with a cervical EBP?

Other than resting in prone position, pain meds, fluids, and no coughing, sneezing, pushing, etc. any advice on pain relief?

Being prone all day is really not much of an option for me because I have a special needs child who doesn't really understand what mom is going through.

[curranmom]

Hi jacqsmom - I cant really offer much advise on a cervical blood patch but I am sure there is someone here that can way in on that for you. I do know that blood patches at that level are a bit more involved. Can I ask why the cervical area anyways? Did the doctor maybe mention anything about injecting at the thoracic level and tipping your head down since the blood would flow that way. The only reason I ask is because my doctor once wanted the radiologist to inject dye for a CT in my cervical area and he was very against injecting anything at the level, but like I said I don't know enough so I will leave that to someone who knows more to give you advice :)

But I can offer some advice on your other guestion... I know the thought of a blood patch isn't pleasant but unfortunately you'll come to notice that nothing is for us leaker's is but if they will do the patch at a safe level I would seriously think about it. I say this because you do have a child and if you can get relief sooner than later I tell you it will be worth it. I am sure having a child with special needs he/she will need you completely I have three kids that demand me ALL the time so I cant even imagine. I have been fortunate enough to have a lot of help with my kids though. Otherwise yes lots of bed rest, fluids, no straining or lifting for sure you could be lucky enough that this will close and heal on its own like it should in most cases.

Best of luck - Kim

[Concerned Gal]

I know of someone who had a cervical blood patch. She got it done by a leading neuro. They made her wear a neck brace for a week while bedridden. It didn't work ,but the leak was found later at T2 and surgically repaired.

I'm not sure I would do a cervical patch, I think I would prefer a surgical approach at that level. I know the pain I got in my head from a thoracic one (thought it was going to pop, and my eyes felt like they were bulging in my head). Can't imagine a cervical one... :eek:

[CSFChallenged]

Hi,
Sorry you had to find us and that you are in so much pain. Unfortunately a cervical blood patch is very risky and dangerous like Laura and others have already verbalized. The main problem is that you can not control the migration of the blood and it could go too high and cause big problems even death. Most hospitals and docs will not do it. In your situation, I would ask your doc to contact Dr. Wouter Schievink at Cedars Sinai Hospital in CA and ask for guidance. (He is the current world expert as many here will attest).

I understand that you have not been able to be down flat a lot and have a disabled child but if you want to have any chance of healing at all with or without the patch you will have to absolutely be down with no lifting, twisting, or physical exertion of any kind. You will have to get help!
These leaks are serious. Research has shown traumatic leaks to have the best chance of healing with early intervention.
However, you should see the expert (Schievink) and get this fixed correctly the first time and save yourself potentially years of treatment by docs who have very little experience with this area. I'm sorry but there is almost no way a lumbar patch could have fixed a cervical tear. That was a long shot in my opinion. Did they actually visualize the tear or just suspect it after your steroid shot?

Pain control for most of us has at one time or another in the course of our leak involved narcotics. Many of us have been reluctant to go that route, but found that nothing else touched the pain. The pain from the traction on the meninges, cranial nerves and downward weight of the brain from loss of CSF is reported to be one of the worst pains ever to be experienced. Since you are already hooked up with a pain clinic, they should be able to treat you.
I have been leaking for 6 years and on the duragesic patch for 4 years. It is a Godsend for me but very difficult to come off of. You may need a different approach since you are likely to get your leak fixed fast and only need short term pain control.

You can also call Schievink yourself...Cherry is his assistant and
is very pleasant to work with. Go to the best!

CSFChallenged.

[wobbles]

Hi:
I know that you don't want to hear it...but.....unless you do TOTAL bedrest...and I do mean TOTAL bedrest...you are going to have a tough time healing the leak site. The pressure changes when we get up and down and up and down and up and down yet again with children,house, whatever...keep the injured area from healing.

Any "fixes" that you attempt...be it EBP, Fibrin patch..laminectomy...will REQUIRE complete bedrest after the procedure. So you are better off trying the COMPLETE BEDREST FIRST....there is a good chance that your injury will heal with just that. I realize that your special child makes this more difficult but you need to find a way to make it happen. Can you get assistance from friends, family, church members, neighbors? Maybe set up a schedule that allows you to have constant help without too big a burden on any one person? I know that it sounds undoable at this point but beleive me, as a long term leaker...you DO NOT want this leak to become chronic!! The longer it lasts the more difficult it becomes to heal. Think of "time down" as an investment in the future of not only yourself...but your family as well.

One thing that I have found during my struggle...people will help if you let them know what they can do! Ask for help....stay down for a couple of weeks and see what happens. You may be able to avoid more invasive repairs (which are going to REQUIRE you to "be down" anyway).

stay strong....

wobbles

[LauraL840]

Any "fixes" that you attempt...be it EBP, Fibrin patch..laminectomy...will REQUIRE complete bedrest after the procedure. So you are better off trying the COMPLETE BEDREST FIRST....there is a good chance that your injury will heal with just that.

100% correct, don't think I've seen it said better!

[wobbles]

Laura:
thanks for the kudos....now if only I could arrange my life in such a way that I could follow my own advise! Yipes, living alone has its disadvantages...if only I could train my dogs to cook and wait on me...oh, yeah, and take themselves outside to piddle.........the old dog just won't adapt to using the paper.......

stay strong-

wobbles