pain at site of leak?

[wobbles]

Hey everyone!

I am having a really tough go of it lately and need some advise. I cope best when I understand (or at least have a clue) what is happening in my body!
You may remember that I had a EBP done a couple of weeks ago to help seal the leak caused by the LP for the CT myelogram (whew...try saying that fast 3X). That EBP "blew" the next day and sent me to the ER. I went back down flat and by day 12 it seemed to heal up. I slowly added a little activity...sitting up for an hour or so....grocery shopping...nothing fancy.......then last Wednesday I went to PT and they had me try the recumbant bike for 8 minutes. That seems to have been more than my body could handle and within an hour...HA and nausea returned with a vengeance! Darn it....back down flat. No relief (yet). In fact last night things started actually getting worse...and this is where I need help....

Last night I started experiencing terrible radiating nerve pain in the area where the EBP was done. The pain is similar to the pain that I experienced after the March EBP (the one that irritated the nerves). What I don't understand is why now? It has been a long time since the EBP...the blood is long gone.....can the leak itself cause pain at or near the leak site? What if anything can I do to relieve this gosh awful pain.:mad: Tried heat, tried ice, tried more morphine...nothing has really helped....the pain is all across the sacral area and down my butt and leg...like sciatica, I guess? I will go to my chiropractor tomorrow and see if something is out of place...but I cannot help but wonder if there is a connection to the lp leak site......any thoughts???

Thanks for any thoughts or help you may offer....:D

stay strong-
wobbles

[Concerned Gal]

Meryl,

I don't have anything that specifically answers your question but wanted to put my two bobs worth in, so you know I'm listening.

When i had my thoracic blood patch, for nine days after my lower back (like back of pelvis) just ached. I couldn't move without excruicating agony. I found this interesting because I had a thoracic patch (no where near where I was aching from). You are right that I could attribute the pain to the recent patch but you are slightly longer from the patch than I was. I can't remember if it continued after this point for much longer.

As for pain at the leak site. Sometimes I think I do. They are narrowed my leak down to thoracic section (not too narrow I know) and I often get aching pain in this area (more so to the right) just before my ears go on me. I have to think that it is linked in some way. However I did get a patch in the area and I can't remember whether I had this before as I was in too much pain everywhere.


I'm interested that you are still going to the chiropractor. Knowing what I know now but I always shudder that the thought (for myself) but often my little pains here and there make me consider for a second going again (i went twice after I started getting some symptoms and immediately before I was bedridden with the leak. I often think my leak started with a dodgy massage so I might hold off on the chiro for now.

Anyway, in my opinion, I'm sick of Drs saying after a patch to give it time. I have waited and waited and it never improved. i say if you are still complaining after 2 weeks consider it a failed patch and start treatment again.

Take care!!!

[LauraL840]

Concerned tossed in her two bobs, so I'm gonna toss in my two boobs (lol) and say that chiro is most likely TOO 'invasive' or forceful for a leaker to undergo.

If you both followed my comments on the more 'alternative' thread I mentioned my friend Alex and acupressure massage. He'd have done this for DH (but DH will have none of it, thought of a man massaging him gives him willies ...::sigh:: MEN). ANYWAY, Alex will go NO WHERE near DH's leak site! I had him work with me by teaching me the important pressure point locations, how to massage, methods, blah blah blah. So I could try them on DH. At best it helps him relax, nothing more.

Back to the chiro-boobs. Wobbles, I know you trust your chiro and I know there are good ones out there, but spinal manipulation has caused many problems by chiro's who just didn't know what they were dealing with. Just be careful!!

[Michelle ANNE]

I too have pain at my leak site. However, my leak is in my neck and many of us have severe neck pain. The reason I sometimes think the leak causes pain in my neck is that the pain is mostly on the right side now and my leak seems to be more on the right.
Michelle

[LauraL840]

I forgot about that! DH also had neck pain, he would say it was like tension, but not tension. I remember him always stretching (chin to chest) and rubbing his neck. His leak was L4-5, and his pain in his neck went away when they sealed the leak. So for him, it wasn't indicative of his leak 'site', but a separate symptom of the leak.

[sadlisa]

Laura,

I feel the same way about the neck pain. I try to explain this to the doctors but they don't even believe the neck pain is a symptom of a csf leak. At this time I am still feeling pain at the lp site(done May 12th) I fear I may have complicated my situation. I am still waiting to hear if the board will approve an outside opinion. I will soon write Dr. S. to see what he thinks. My doctors do not support this differential diagnosis and have stated that I dwell to much on it and it is keeping me from positive pursuits. What they don't realize and I was sure to point out was- this is my reality, I spend too much time horizontal from dizzy-lightheadedness and headaches. If I don't have a leak, something else is happening. Thanks for your continued help. Thia

[jacqsmom]

Hi wobbles...I won't put my two boobs in like Laura...cause as I get older...they really aren't that attractive...lol.

I too am having pain when I lie down and it was only after the second lumbar ebp which only worked for 36 hours. I've had cronic neck and upper back pain for 11 years which led me to seek out pain management which then led to the cervical steriod epidural that caused the leak. When I told my docs about the ha no longer going away when I lie down, they suggested that it must be a migraine...not a leak. I've had migraines for 13 years since my army accident when I fell from 6 feet and landed on my upper back. Migraines have NEVER felt like this...and they usually go away after a day or two. And they certainly aren't worse in the a.m. after sleep.

Since I'm relatively new to this, I don't have any advice to give, but thought I'd share similar symptoms.

[LauraL840]

they suggested that it must be a migraine...not a leak.

Sometimes I hate doctors ... statements like that really make it easy! :mad:

Add to it, our original 'treating' facility had to be convinced that it WASN'T a migraine ... they admitted him for a WEEK for a DHE-45 infusion and his admission form states 'status migrainous'.

::grumble:: Doctors can be a real pain in the *outhouse

[wobbles]

Hey everyone!
Thanks so much for the support, bobs and ...well, I guess even the 2 boobs worth! I haven't felt well enough to be online...so am just now getting the good LOL! Thank you...I needed that.

The lower back is better...my chiro worked very gently (he NEVER uses force for ANY of my adjustments) on the spinus erector muscle (the big one that goes all the way down the spine) It was really tight and the area around the patch site is still swollen although not with the hard know that I had for the first week. I have had a call into the NS for 2 wks now (he was on vacation last week) but as you know from previous posts....I have never received a callback. He says that he doesn't ever get messages...so we'll see what happens over the next couple of days.

It is clear to me that the patch did indeed fail and that I am worse off than before we did the myleogram...leaking from both the cranial site (that won't image...arrrgh..) and the LP site. I may opt for another higher volume patch at the LP site to see if we can get me back to where I was before the testing...at least I could be up for an hour or so then........sounds like heaven compared to the few minutes I get now....If only the doc doing the patch would have listened to me and put in more than 10cc......the only patch that ever lasted was the one done last year with 25cc........I just don't have enough CSF pressure to "push" against the patch site and help seal the leak! But hey...what do I know....after all I didn't go to medical school....don't worry...I don't buy into that cr#&^ for a minute! I just have to be more vocal.

Still waiting to hear if my NS talked to Wouter...if not then I will contact him myself...I have to do something to get a life with more quality than I have now!

Thanks for the support...I need to go back down...

wobbles