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Old 08-12-2009, 07:48 AM
Robbysmom5 Robbysmom5 is offline
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Default Robbysmom5 - Updates

(This thread will contain details on Rob's story and be a place holder for any updates)
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Jeanne
Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
Robby's Leak Story
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Old 08-12-2009, 08:43 PM
Robbysmom5 Robbysmom5 is offline
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Default Rob's Very Long Leak Story

In late 2007, Rob started getting epidural steroid injections to help with lower back pain. On July 3, 2008 Rob got his 5th ESI - there was extreme pain mid-procedure and a thunderclap headache 15 minutes post procedure. The screaming headache lasted a few minutes then subsided to a pain level of 8. The head pain remained for days then exactly 4 days after his ESI, Rob came down with acute and severe meningitis. (The cause of the meningitis is still unknown, but may have been bacterial or a severe reaction to the ESI’s chemicals going subdural. We actually have 5 different theories from various doctors on this.) Rob had 2 LP’s to diagnose and monitor the meningitis. After being released from the hospital, we realized Rob had positional headaches. The first few weeks, he could not be upright for more than 5 minutes. He also had ear pressure/ringing, sensitivity to sounds and lights and various pains in his neck and limbs. Fortunately, Rob’s headache went away completely when he lied flat and looked at the ceiling.

Rob’s doctors never dealt with a CSF leak, or possible chemical meningitis – so we had to begin our journey finding help. This forum was a life-saver. At that point I was terrified of adhesive arachnoiditis and spent most of my time reading about CSF leaks, arachnoiditis, and meningitis.

Rob’s first EBP was Aug 21, 2008 & done in the ER of our hospital. (pre-arranged by a very nice anesthesiologist who provided conscious sedation). It was done blindly and I still remember cringing watching the doctor place the needle and enter the blood (45cc was used as we did not know if Rob was leaking from the location of the ESI tear or the LPs). Rob stayed flat for most of the first day. Initially, his headache was gone. He did walk to use bathroom and to go upstairs to his bedroom. Rob drank caffeine daily and took NSAIDs for pain. After about 30 hours, the headache returned

In September 2008 we had a very long day going to see a new doctor in the city. Rob ended up having autonomic dysfunction for several days after this. (Tachycardia upon standing, difficulty breathing, swallowing, etc.) After this experience we got a reclining wheelchair for Rob so he would no longer be forced to walk long, climb stairs, and sit in waiting rooms. (Thanks for the tip Tam!)
At this point (leaking ~2 months) many of our doctors did not believe Rob was leaking. His MRIs did not show a leak, and we did not want to have a myelogram, yet. The doctors attributed Rob’s symptoms to migraines, anxiety, POTS, etc. He was prescribed medications that we did not take. I still thought Rob could still be leaking and did not want to mask his symptoms and then possibly further aggravate the leak. Rob was still able to be headache-free when lying flat and I was able to care for him. (Thanks to this forum I knew it was possible for some people to have difficulty healing, and for some people to have autonomic issues with a leak.)

Rob’s pediatrician recommended 4 days of complete bedrest. Rob tried one day, then said he’d rather do the bedrest after another blood patch. I was still needle-phobic and concerned with the possibility of arachnoiditis and first wanted an MRI see if there was nerve clumping. We got a lumbar MRI done in Nov 2008 and there was no sign of arachnoiditis! (However, we were informed of a new spine issue that was missed for years by previous doctors.) We were all ready to have a second blood patch, but we did not have a doctor to help arrange it. (I did not want to do another blind patch in the ER) During this doctor-searching period, Rob had autonomic dysfunction a few more times - each occurred after extra activity and lasted several days.

We eventually started finding doctors that believed Rob was leaking. Rob had his second blood patch (20 cc) on Feb 6, 2009. For this patch Rob had conscious sedation and Vicoden for post-patch pain. Rob did not drink caffeine, nor take any NSAIDs. Rob did 3.5 days of near-complete bedrest, took stool softeners – and was as conservative as possible. Going into this EBP, I did not have much hope that this would fix his leak – and we were facing a complex surgery as our next step (a laminectomy to surgically repair his leak would further destabilize his lower back). I remember feeling so bad for Rob because I knew he was trying so hard to give this EBP every chance of working. Rob had increased dizziness for 3.5 weeks after the EBP. Even just moving his head from side to side the first few days made him dizzy. I thought this was a good sign - something must be going on. On March 3, 2009 – Rob’s headache was gone! It was shocking to be headache free after 8 months of leaking. Rob was totally headache free for 11 days then he started to have some pressure headaches. These pressure headaches would come in car rides, after some exertion, and also just randomly. These headaches at times were confusing, (we even thought he may be leaking at times) but they were not debilitating for Rob. In April, Rob was able to finally go to school for a few hours a day.

Since Rob has back issues his post-patch activity was very limited anyway, but he also followed the no bending, no lifting more than 5 pounds, and no twisting. Rob has not had any autonomic dysfunction after his successful blood patch.

Rob had a triple spinal fusion on June 29, 2009. During the surgery there was an accidental dura cut. The surgeon used extreme care in his repair (sutures, duragen, tisseel, graft sutured, more duragen & more tisseel) The surgeon said Rob’s dura was paper-thin and nearly see-through – probably due to a connective tissue disorder.

Rob is now 6.5 weeks post-op and doing very good. He only occasionally takes pain meds and is headache free nearly all of the time. He does PT and can walk longer than he could in years. He does sometimes still get a dizzy headache in car rides and sometimes during PT. The headaches do not last long. We are hoping these slight headaches will go away in time …. I do plan to update this thread.
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Jeanne
Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
Robby's Leak Story

Last edited by Robbysmom5; 08-13-2009 at 09:14 AM.
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Old 08-13-2009, 03:27 AM
healing@last healing@last is offline
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Wonderful news Jeanne - always nice to hear that someone else is recovering after this ordeal!
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Old 08-13-2009, 08:25 AM
LauraL840 LauraL840 is offline
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AWESOME! Thanks for sharing!
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Old 08-14-2009, 12:29 AM
forevan forevan is offline
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Yeah!!!!!
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Old 08-15-2009, 09:36 AM
CSFChallenged CSFChallenged is offline
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Yeah!!!! Take care and let your body heal!!!!!

CSFChallenged
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Old 08-15-2009, 11:06 PM
Concerned Gal Concerned Gal is offline
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Great news Jeanne!
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*Ulcerative Colitis-2002
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*Hashimoto Disease-2008
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Old 08-16-2009, 01:27 PM
mindi mindi is offline
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Whoo Hoo!!!

We're all so happy for you and Robby, Jeanne!

It's nice to see Robby's story in it's entirety from the beginning. I'm sure it will help others to have it all in one place like this (especially newbies who haven't been following his story). Thanks for sharing!
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Old 08-17-2009, 08:10 AM
Mommy2Boys Mommy2Boys is offline
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Default So great!

That is awesome to hear! Go Jeanne and Robby
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Old 11-23-2009, 11:29 PM
Tambat Tambat is offline
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I am curious if your son is still dealing with the strange pressure headaches that you make mention of? I myself suffered a dural tear during a spinal surgery that ultimately led to a staph infection and bacterial meningitis. I may want to mention that the repair during the first surgery ruptured. Months later after being treated with antibiotics via a PICC line, I underwent another lumbar puncture to check for residual infection and suffered another dural tear that was fixed surgically. I have since suffered from strange pressure headaches that are not debilitating, but are very concerning. I am being treated by a neurologist, but nobody seems to have any answers as to why these are occuring. I get them when I change positions or simply for no reason at all. Sometimes I also get a slight "whoosing" sound in my ears. I have done countless hours of research on the internet, and your post is the first thing that I have found that comes close to matching what I have experienced after my CFS leaks and dural tears.
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