Iginfl, believe me i wish it could be accomplished.check all the settings from when you registered. Blocked. I tried. So, i re read and do you think its weird on your mri that it says theres a track to your spinal canal, then it says its not connected? Does that mean you had a leak & they could see the track where the csf went to the area & now its repairedand its no longer connected. If thats the case it sounds to me like the mushy spot should go down. Be absorbed. But if its not i think you do still have a leak,imho. Agree or ps no? Hope you will let me know. It will be ok. What does old dr say?
P.s. i saw your post about the soldier & games. Keep posting then you will get rewards to accomplish what you talked about earlier. Wanted to tell you i have to suck into really intricate movies,explained in detail on my mri thread. Hope all ok since i havent heard in awhile. Thanks, gmak
Last edited by gmak; 11-16-2012 at 08:53 PM.
Reason: ps
Dear iginfl, "This MORNING I really, really looked into your MRI report. Imho the mentioned sequela, a consequence of the CSF leak,caused by the CSF leak, and left over by the CSF leak and needs to be checked to see if it is an abcsess, by looking at how your doing currently, which is no fever but its suggesting that you be checked for an abcess by culturing fluid out of left over consequence, the superficial pocket & it seems like the radiologist with the word sequela is suggesting it is left over, left behind after surgery to repair the leak. Of course, i would get a neurosurgeon to look & see if continuing to leak. Yes, communication possible when you get/or fix your capability to exchange info with me but not on the threads or board. Ok?Keep posting because your absence from the board is worrisome @ this point considering the urgency of your condition. I hope and pray that all is stable for now! I know how it feels to go thru this & it freaks me out too, but i really do think that report means left over, imo. So sorry, but it will be ok, it HAS to! Right, friend? gmak
Last edited by gmak; 11-17-2012 at 09:10 AM.
Reason: reword
Sorry it took so long for me to get back to you. So you're saying that this could be just leftover fluid from the surgery and nothing more??? I hope that's what you're saying. I'm not good at some of the "shorthand" you put in like "Imho", what does that stand for??? My neuro that did the surgery should get the MRI films I sent him by Monday or Tuesday. I don't see the neuro here until Dec. 5. I should at least know something by early next week. Still hanging in & praying this isn't a leak!!! God I hope you're right!!! Thanks for being such a dear friend! God Bless You!!!!
Hi Iginfl, Im so glad to see you! And that you are ok & not in hospital! I kept hoping & praying that you did the church, out to eat, nap thing yesterday. Then, I would think "no way" she has a bulge in her back! Imho, is in my honest opinion. Im not a dr, only friend here. I just read the mri report over and over and i thought that the radiologist was saying it appeared leftover, then gave warning to the DR, not to you, that he thought that you needed to be checked for an abcess. Like we talked about, cbc, lab analysis on fluid, culture & what the dr orders to check for infection. He will get report late so i think that you should call the office & leave message or possibly talk to dr to tell exactly how you are now & want to know yesterday what he wants you to do. If it were me i would "hold his feet to the fire" persay! B/ c waiting until dec 5 is crazy. Imho. I know that you are sick, hurting, csf leak is scary & you are sooooo sick of drs & surgeries. And, you shouldnt have to figure this out by your self!! Btw,i had to lay flat after repair surgery for 4 weeks until patch healed on, b/c of pressure in canal goes up when you raise your head higher than your low back & could make a leak again. Did you have to do that? We just pray & have faith that this would be over for you now. Take care & know im checking for
your posts often. Wish i could help more. Thank you,gmak
Last edited by moderator2; 11-18-2012 at 08:32 PM.
Reason: typos
Like I said, the Dr. that did the surgery is on the east coast of FL. in Melbourne. I'm staying on the west coast now. I went to him because he did my fusion and repaired the first leak (after the pump went in) He should have the films in a day or two. Yes, I was in the hospital 4 days, laying flat & couldn't raise my bed more than 30%. That was the worse and the beds were so uncomfortable. I'm not all that worried about an abscess. No symptoms. My pain Dr. doesn't see this as an emergency situation,either. Go to physical therapy once this week (holiday) and have another ultrasound therapy done. How are you feeling??? When are you going to get any word on your confusing MRI???
Take Care!!!!
Last edited by moderator2; 11-18-2012 at 08:30 PM.
Like I said, the Dr. that did the surgery is on the east coast of FL. in Melbourne. I'm staying on the west coast now. I went to him because he did my fusion and repaired the first leak (after the pump went in) He should have the films in a day or two. Yes, I was in the hospital 4 days, laying flat & couldn't raise my bed more than 30%. That was the worse and the beds were so uncomfortable. I'm not all that worried about an abscess. No symptoms. My pain Dr. doesn't see this as an emergency situation,either. Go to physical therapy once this week (holiday) and have another ultrasound therapy done. How are you feeling??? When are you going to get any word on your confusing MRI???
Take Care!!!!
Hi iginfl, Im so sorry i got confused about the drs! Duh! I wrote long post, lost it! Tried. Nope still. Didnt realize that those crazy posts from me were hinting, sorry. So, now that i have that straight glad pm dr agrees its not emergent. Still praying however, a bond of the
'Leak sisters" has been established so it can be over now for you like it was for me! Im so glad that you can be up & around now. I did the lay flat thing for 2 mths, three times! Anyway, i will keep trying & you try too. Ttys, gmak
Hi gmak!! I got a call today from my neurosurgeon that repaired the leak. He said, once again, that it could resolve itself. But it IS in fact a leak. He suggested getting a blood patch from my previous pain mgmt doc (which I no longer see) So, once again NO REAL ANSWER!!! He did say that he would NOT recommend surgical intervention at this time. Which I told him there was no way I'd go there again!!! I'm still going to get the neuro (that I have an appt to see) here, his opinion. So, I've put off physical therapy, as it won't help until the lump is gone. Still after all this & no answers. Well I guess that why they call them "Practicing Physicians". Who knows, I'm so sick of this I could scream. But I gotta remain positive. How are you doing? Any advancement on your predicament??? Take Care!!!
Hi gmak!! I got a call today from my neurosurgeon that repaired the leak. He said, once again, that it could resolve itself. But it IS in fact a leak. He suggested getting a blood patch from my previous pain mgmt doc (which I no longer see) So, once again NO REAL ANSWER!!! He did say that he would NOT recommend surgical intervention at this time. Which I told him there was no way I'd go there again!!! I'm still going to get the neuro (that I have an appt to see) here, his opinion. So, I've put off physical therapy, as it won't help until the lump is gone. Still after all this & no answers. Well I guess that why they call them "Practicing Physicians". Who knows, I'm so sick of this I could scream. But I gotta remain positive. How are you doing? Any advancement on your predicament??? Take Care!!!
Hi iginfl, Im going to see the 2nd NS i saw in june again. His office called me friday. Just going to see if aa too bad he cant fix other things like tethered cord, & @ least get an opinion about the many other "mysteries" on that MRI that i have no word from a dr about. Will let you know. About you, i cant believe 5 opinions & you still are waiting. Another common thread for us. From my MRI, i saw 5 drs total & still have no definitive word either! But, i dont have a bulge! That is my big hold up on any surgery, epi injs, scs or pump. Too scared of a leak. It was sooo close to" we cant fix it" it wasnt funny & scared me to death. I want a definitive word for you as well. NOT a surgery, just a definite word, its ok now. Thank you, gmak
I think I may have confused you, I haven't had 5 opinions. I'm only one month and a day post-op from my CSF surgery. I've been to PM who ordered the MRI & blood tests, he's not equipped to handle a leak. He referred me to a local neuro. (Dec. 5) is soonest they could see me. My neurosurgeon called me today (he received the films I sent to him) and that was his conclusion: it is a small leak that could heal on it's own but he mentioned a blood patch a couple times. (after my first surgery, I was suspicious of a leak and asked him "if this is a leak, could you do a blood patch? His response then was "No, those things don't work." Ergo…utter freaking confusion!!!! He's contradicting himself!!! It's unfortunate where I live, you just don't have "Ivy League" docs around here!!! That's for sure!!! Don't you just want to punch them in the face sometimes??? Especially when you call them on their own mistakes!!!
I'm angry and rightly so. I am very glad to hear that you may have some answers and soon, thank God!!!! Go to pm, I figured out what went wrong!!! TTYS!
Last edited by Administrator; 11-19-2012 at 07:38 PM.
Dearlginfl, yes, i get your frustration to the maximum power! When i found out about aa & that the NS i loved,& never told me i had aa, betrayed me, i felt like you do now. One thing that saved me recently was his voice saying "You can never have surgery again" though, when the pm/ anes types coersively trying to do epi injs, have scs or pump to fill their cash box b/c they wanted big bucks to stick their necks out & give me a 150mg less morphine a day than i was on previously & for this inadequate amount they wanted "moolah" & didnt care if their actions made me paralyzed or have more pain.. So, i go running & get old dr from harvard back! So, did my frustration leave, no.
Am i still royally messed up, yes! Im just so grateful to be away from those leeches! Man o man i hear you. When i leaked if my NS wouldnt have been precise in decisions, i would have flipped out! Wow, this makes me mad! Point is, even after all the leaks between us do you know the answer? DID the surgeon cause the leaks or is it something our bodies did?? I really do not know the answer to that question & i want to know. Dont you? Ok enough. Thank you for updating me & i think this may be my biggest rant on hb! Forgive me everyone. Thank you, gmak
Last edited by Administrator; 11-19-2012 at 07:39 PM.
You nailed it!!!! That has been the big question in my mind!!! Did the neurosurgeon cause the leak? Or did he get in too big of a hurry and not even look for leaks especially when he removed the pump!!! (which ended up being a puncture according to his surgical notes)
He fixed my first leak when my pm doc didn't succeed at blood patches (upon insertion of the pump) He's the reason why I went all the way across the state, rent a extended stay hotel for me & my mom for a week. He knew I was a leaker, we discussed that & I felt he was the man to do the job, wouldn't you? He's gone from A+ to a D doc in my opinion. Especiallly after our phone conversation yesterday, when he contradicted himself about the blood patches!!! Have you ever had them??? If so, did they ever work?? And it IS ok to rant, at least we get it out of our system! Hope u have a great day!!!
Hi lginfl, I really want someone that knows about it to answer that question. About leaks, my NS looked for 45 minutes after 3rd surgery to make sure no leaks before he closed. I laid horizontal for 2 weeks out of 6 wks that we were going for. I leaked. Incision burst open & csf pouring out. Had houseful for wedding shower, i said they could use my house for it. I walked from bed to couch & bam, csf. 4th surgery. And, yes, i would have trusted him, who else would fix it anyway. When NS put in pumpd, scs etc & this happens, then pm/ anes want to put in scs, it is too scary for me! Blood patches. Ive never had one. When reading about aa i see them mentioned occasionally. I know my SNL had one after epidural in labor, it worked, she was fine. I hope that you recover from this soon & that new NS will be
great. Keep updating. Maybe someone will answer our eternal question. Thank you, gmak
Dear iginfl, "This MORNING I really, really looked into your MRI report. Imho the mentioned sequela, a consequence of the CSF leak,caused by the CSF leak, and left over by the CSF leak and needs to be checked to see if it is an abcsess, by looking at how your doing currently, which is no fever but its suggesting that you be checked for an abcess by culturing fluid out of left over consequence, the superficial pocket & it seems like the radiologist with the word sequela is suggesting it is left over, left behind after surgery to repair the leak. Of course, i would get a neurosurgeon to look & see if continuing to leak. Yes, communication possible when you get/or fix your capability to exchange info with me but not on the threads or board. Ok?Keep posting because your absence from the board is worrisome @ this point considering the urgency of your condition. I hope and pray that all is stable for now! I know how it feels to go thru this & it freaks me out too, but i really do think that report means left over, imo. So sorry, but it will be ok, it HAS to! Right, friend? 
gmak
