1 year + occipital nerve block & spinal tap . . . .

hello all-

im am pleased to celebrate life today at my one year anniversary for my decompression surgery. what a rough road it has been, and continues to be however - i have to say that i am so blessed to be standing, breathing, talking and laughing. it is so emotional today just knowing that one year ago - at this very moment - i was in the fight of my life.

i am scheduled for an occipital nerve block to be performed on the 23rd of march by Dr Erdeck at Johns Hopkins. The same day, i am told, i am scheduled for a spinal tap. ( the are so incredibly accomodating! I sincerely love dealing with the PROFESSIONALS at hopkins. they have been above and beyond acceptional) the doctors are scheduling these so it saves us numerous trip to MD since we live in NJ.

has anyone had an ONB and what did you think? what does the procedure entail? whats my down time after its done? how can i expect to feel while its being done, and afterwards?

same with the spinal. . . i know many of you have had them performed and i am curious to see what you all believe is a safe down time for this and what physical things happened during or afterwards.  

do you think have the ONB and the spinal on the same day is okay? im sure they wouldnt perform any procedure that wasnt safe but im kinda thinking ** why inject stuff into my head, just to drain it back out again** please tell me if im way off - im clueless when it comes to this new phase of life.


thanks to all of my friends here that have supported and encouraged me throughout the past year. i am so thankful for each  of you....

<3 Jilian

[Spaceystac]

Hi congratulations on your 1year! I have not had any of the things done you mentioned above, but I wanted to ask you why are they doing the spinal tap? I have heard it can be dangerous, but If they still do them then it must be ok.

Also, I think with the ONB, they will block the nerve at a point where it is out side of your dura, I believe, so it wont be flowing out with the spinal tap.  I am not 100% on this but I think they only go into the epidural space when they do those blocks, kinda like epidural for woman in labor type thing only in the nerve by your occipital area not your lower spine. Good luck with all of this stuff, hopefully someone who has experienced this stuff will post for you their experience. Dont forget to update us when you feel better after your procedures.

[burdzmom]

hey--thanks for chatting.... i appreciate your concern and the info you gave about the ONB was helpful.

i am having a spinal done for two reasons. #1 - i apparently was treated for menengitis post operative - however, they never performed a spinal to come to the conclusion that i actually had the menengitis.....i guess they just diagnosed me and then treated me with the heavy meds based on my symptoms.im still exploring that end of things. i have requested all of my bloodwork, surgical notes, medical reports from the entire time i was inpatient. (feb.2 - feb 17 = 368 pages= $168)  and #2 - i also have a (still) unspecified autoimmune disease that was hiding out until the trauma. the struggle my body faced with everything and being so severely close to death brought out the flare - apparently this is what has caused such a difficult recovery for me and it is believed this possibly has done damaged to my CNS. Still - UNSPECIFIED - which is why they are finally doing the spinal. I am told it is an encyclopedia of disease and infection within the spinal fluid. since my bloodwork has been all over the place - the spinal is pretty much the last resort - in the diagnosing and eventual treatment of my autoimmune disease. i have to wonder why i was treated without a definate confirmation of menengitis. i wonder if i didnt have it, but was treated for it, that is caused damage to my CNS, brain, immune system . . . i hope thats not the case.
I will keep you posted on what happens next month.

thanks so much!

[*Stormy*]

Congratulations on your one year anniversary!! If you are like me (mine was Dec 09) you will look back and see even though it was quite a struggle, there is hope in the air!!

I haven't personally had any experience with ONB but I was interested in it awhile ago and searched it on MH and there were a number of helpful posts that came up so you may want to check into it. I would be very interested to hear if it helps you or  not. Also, what are they expecting to accomplish by doing an ONB? Does it help with the headaches and neck pain?

That's frustrating that you have an unspecified AI disease....it makes it much harder to recover if you have something else going on. I hope that they figure it out for you...just make sure that whoever is doing the tap is aware of the Chiari and is experienced in doing it on people like you. It seems that almost all of us have some kind of AI disease...I have been dx'd with Hashimotos and there has been a question of maybe something else but nothing specific either.

Anyway, please let us know what you find out!
Carolyn

[selmaS]

  Happy Zipperversary!!! wow...it goes fast huh?

I am coming up on my 2 yr...it flies past.....

Sorry, but I can not add nething about the ONB or the LB post op as I have not had them....but do take things slow and lie flat afterward to ensure no leaks......

Please let us know how these procedure go for u : )

  "selma"

[BrandyF]

Hi, I have had several of the occipital nerve blocks,  They do help with the migranes (migraines). It is an injection into the Occipital nerve in the bak of ur head at the base of ur skull...a little awkward, but not actually painful or anything.! I will keep U in my Prayers, Hope they help   God Bless, Brandy