Question for those who have had more than one surgery

[ZilZil]

When did you realize something wasn't right?  Was it gradual or did it become an emergency? What were your symptoms?  Did you go back to your original NS?

I've searched through some of the threads, but I can't seem to hit on the right keywords for any useful information.  I apologize if there are multiples about this topic.  If you know of other threads, please let me know which search terms to use to find them.
Thanks!
Liz

[selmaS]

  Not sure I haven't met a Chiarian that wasn't a focused-goal-oriented-move-now-in-that-direction type of person...lol...so I think we r all in the same boat.

Plus, I think it is meant to help  us learn patience which we all need post op so we heal properly : )

[ZilZil]

Thanks.  I know I'm a focused-goal-oriented-move-now-in-that-direction type of person, so it's that much more maddening when I just have to wait.  Bah!

[selmaS]

  Sorry u did not get more info and a plan of action...seems we all hurry up and wait....sigh....I know how frustrating it is and wish there was an easy answer to how to get the Drs to listen and move faster then a snails pace....

hang in there.

[ZilZil]

I met with my NL again this morning and had a comprehensive nerve panel (more painful than I expected) and he checked my eyes again.  He said that there was no indication of increased brain pressure in the eye, however my symptoms are exactly in line with a CSF back-up/increased pressure.  He ordered an MRI, as the nerve test didn't indicate any nerve damage.

I've got the MRI next week and an appointment with an Ophthalmologist early April.  I'm frustrated and annoyed, but I'm not sure with what/whom.  It just seems to me that my docs should be more alarmed than they seem to be.  But they're not the ones watching words walk off the page/monitor.

[TinyRN]

Zil-
    I was reading that sometimes after the decompression surgeries that we can form scar tissue that can sometimes in return raise our intracranial pressure that can be a result of vision problems related to IIH (idiopathic intracranial hypertension) apparently there is a known link between Chiaris and this diagnosis. I would suggest seeing your neurosurgeon and also possibly seeing an eye doctor as well to rule out an other eye conditions. Because the numbness you are experiencing may not be related to a leak or a syrinx it could just be the rise of the Incracranial pressure compressing your brain and your nervous system. Def let your doctor know.

[oops1990]

Hi, I don't know all of your circumstances, but I've had 3 surgeries and will be having a 4th soon because of CM and a syrinx. After my 1st surgery was done I had a follow up MRI just to see how things were progressing. There was evidence that my syrinx had shrunk but that it had grown back after it shrunk, so I had a 2nd surgery. After the 2nd surgery I did have more of an emergency situation. I began to have explosive headaches every time I stood up or moved, so I lived on the couch for about 3 weeks on narcotics, then I started to feel better. About a week after I was feeling better I began to have excruciating lower back pain, to the point of not being able to get out of bed, and pain in my right thigh and leg weakness that caused difficulty walking and a couple of falls. It turns out that after my 2nd surgery the syrinx had ended up growing to the entire length of my spinal cord and was affecting my legs. So I had a 3rd surgery to place a shunt in my thoracic spinal cord. The syrinx had caused permanent damage by then, though, and I now have bilateral foot drop and have to wear AFOs so I don't trip over my feet. Now, after yet another follow up MRI, we found out that the syrinx is growing towards my brain stem, so I will be having a 4th surgery ASAP to try and correct it.

I also have diminished reflexes in my legs, but all of the doctors I've seen seem to think it's normal because of the syrinx having grown so far down my spinal cord. And I don't have any problems with my vision, but my eyes do twitch pretty often. I don't know if any of this helps, but since I've had 3 surgeries so far I thought I'd share some of my experiences.

[ZilZil]

Thanks again for your thoughtful response.

No, I'm not the one with Chondritis.  It sounds horrible!  My main symptoms are tingling, pain and loss of sensation in my arms (sometimes I feel like I can barely lift them), visual disturbances (by far the most alarming for me), and a constant mild headache (mild compared to before surgery).

The vision stuff is pretty trippy; everything is shimmering or pulsing, with little black spots "popping" in my periphery (not floaters, I recognize those...)  kind of like the moments before you pass out, but it doesn't progress that far.  Fluorescent lighting makes it worse, although I do notice it in sunlight.  Earlier today, my husband was walking toward me and it was like he was in a stop-motion film.  At least I'm not seeing things walk of the page or up walls like I did before the surgery...yet.  I got so much worse so quickly prior to my surgery, I'm very motivated to head this off before/in case it gets worse.

And it *is* nice to be validated.  And it's hard to talk to other people who may care, but don't understand.  I end up feeling like I'm whining all the time.

Thanks again and I'll be in touch.
Liz

[zygy2]

So happy to hear that you were not dismissed!  It is really wonderful when you find someone to listen and they find something to validate your feelings about what is going on!  I just made the decision this weekend to go and see my NL about a few things!  I am thrilled that I am better than before but at the same time I have things that I feel have not been completely figured out so I need to continue.  I feel like even if we just find out that "this is the new you", we still need to hear that and know we have run out of treatment options.  I noticed on another post (I think it was you) that you mentioned Chondritis, I have had it diagnosed as slipping rib syndrome (closely related I think).  It feels HORRIBLE.  Mine can get so bad that I can't move and it hurts to breathe and it really can get so bad that you are just wishing for the emergency room!  I did not have this until after repeated surgeries so this is a new bonus I have. They tell me this is because of the EDS. I am so sorry to hear that you are having vision problems.  I do not have that issue, vision problems must be very spooky.  Where do you get tingling?  I have half my head that is weird :)  I also have weird feeling in my outer two fingers (ulnar nerve stuff I think).  I will be really interested in hearing about diminished reflexes, how does that show on a daily basis.  I have always been clumsy so I just laugh but I do sometimes wonder why.  I tip over quite a bit, more recently and I don't know why (freaking me out a bit).  I did have some damage to my cerebellum so I am assuming it has to do with that but I don't really know.  I think my POTS is not being treated to the best of someones ability :) For me this is a bit more complicated because I have a teenage daughter and she already has been diagnosed with EDS and POTS (I started to figure things out as I was being diagnosed).  I feel like even if I am sick of fighting for myself some days, I can't give up fighting for answers for her.  I like coming back to post on this board because it is nice to help people that are also confused. Everyone on here will tell you to find a specialist but every Dr. out there seems to be calling himself or herself a specialist and that leaves all of us up a creek without a paddle!  Finding answers is a really difficult and frustrating process!! Keep me posted about what you are finding out, I find it all really interesting and appreciate all that I can learn!  Good luck with things and if you have any questions, just ask :)  -Zygy

[ZilZil]

Thanks for reaching out, zygy.  I can't believe what you've been through.

I met my PCP last week who told me he didn't want to do anything until I saw my Neuro, who I saw today.  He's concerned and wants me to go back to an Ophthalmologist to rule out anything eye/retinal related and then have some nerve tests, but he suspects scar tissue to be the issue.  I'm having some visual disturbances and tingling,  In addition to other things.  Curiously, he said I had "incredibly diminished reflexes,' which was new.  This from the rubber hammer test.  
It's more or less what I expected.  I was worried that my symptoms were going to  be dismissed (which is a holdover from my relationship from my previous neuro).  I've got  few appointments coming up which should clarify things.  

I'll update as I learn anything useful to share.

[zygy2]

Zygy here :)  I have had multiple pseudomeningoceles and multiple surgeries and lots of wacky complications so if you have weird things going on, feel free to ask me questions!  I have tons of postings in here because I was so stressed trying to figure out why I didn't feel good!  I just knew something was not right!  I hope you find answers, good luck with the PCP.  I would think that  your NS would be a better contact for possible complications.  It can be very frustrating trying to find the right person to listen!  -Zygy  :)

[ZilZil]

Thank you!  Searching pseudomeningocele netted a ton of info.

I have an appointment with my PCP Wednesday to determine what needs to happen next.  I love my Neurologist, but there is a Chiari specialist in my area.  

This site has been an enlightening discovery for me.  Thank you all for sharing.  I've read dozens of posts that could have been written by me at any moment in the last few years.  It's both comforting and frustrating.  

[selmaS]

  Hi...many have had a CSF leak with a pseudomeningocele that formed.....zygy2 and soccero both had this issue and multiple surgeries....