Sudden Decline 7 months post op

[kar3514]

I had surgery for Chiari Malformation in May 2011. Surgeon in Toronto did posterior fossa decompresion, duroplasty, with a cervical laminectomy. My tonsils were elongated 15mm below where they were supposed to be, which surgeon said was very significant. Surgery went very well, my recovery went even better without any complications. I am a teacher and returned to work fulltime in September, 4 months after surgery. Continued to feel better each week, by mid December was at about 95%. Then on Dec 23, I started to come down with what I thought was an average cold. Very stuffy nose and my eyes were constantly watery, so bad that it looked like I was crying most of the day. Went to family dr on  Jan 5 and he put me on 10 day dose of Biaxin. Stuffy nose cleared up but was left with dizziness, very watery eyes, very sore at back of my head and neck and lots of head pressure and head pain that hasn't gotten any better today. Returned to family dr who put me on another 10 day dose of Biaxin. Got into NL and he ordered blood work, worried the infection in nasal cavities spread. That came back normal. Ordered MRI with dye, got the results today that that is normal as well. Now I'm really frustrated. I have had to drop down to working mornings only because by noon the pressure is awful. I went from feeling 95% better 7 months after surgery sooooo happy with how I was feeling compared to how I was pre-op to now feeling absolutel terrible. I now feel worse than I did before surgery and go to bed at night worried I'm not going to wake up. Wondering what my next step should be? Is there other testing that should be done? I keep thinking it has to be something connected to the sinus infection because that's the only changing factor. Hoping someone out there can help me. Thank you for any words of advice.

[linnielou232]

It's hard to get back up when we have a fall back.  I also had many of these myself due to having 4 surgeries in 4 months.  It's hard on our bodies and we don't realize what surgery does to some of us.  Just remember your not alone, and not to give into Chairi.  Make yourself do 1 thing a day.  Even if it is just washing up a bit.  Do something to help YOU feel a little better.  Coming to this forum helped me so much through these troubled times, because sometimes we feel so alone, but your not.  Tomorrow will be a better day.  I say to myself every day.  "You have to get strong."  It helps me to get through another day.  I also don't get down on myself when I have a bad one neither.  We all will have them.  Your body is healing, and your mind want's to do other thing's.  Just slow down and let them catch up with each other.  Have a good strong day.
Linda :)

[selmaS]

  Hi...so sorry to hear u r still having post op issues....things should be getting better by now...what did ur Dr say is going on?



    "selma"

[karalee85]

Ya know, i had my surgery 2/11 and between 7 n 8 months i went from getting better to going very down hill, and not climbing back up yet...

[kar3514]

Thanks so much for all this advice. I see my NL next Friday so will definately ask about the lumbar puncture. That may be the next step.

[selmaS]

  To All - regarding LPS

  For those with Chiari it is never safe to just get a LP BUT as long as the tech knows u have Chiari and knows to draw the LP slowly u r ok...so even those post op this can be an issue if the tech is not informed that 1- u have chiari 2-knows to draw slowly for those that have it.

  LPS r necessary to dx ICP and it is possible to develop this condition post op...sometimes even b4 surgery....

  But as long as everyone one involved knows what chiari is and that u have it then it should be ok to proceed.

  This is how my NS explained this to me....

[zygy2]

I was told the Lumbar Puncture was safe as long as I had already had my decompression and as a lot of you know, they have been in my head three times :)  I really do trust my NS and he was even the one to do my lumbar puncture and it was WAY better than my first one, you could really tell he knew what he was doing.  Not only did he want a pressure read because he knew with my pseudomeningocele that it might not show what is really going on, but he wanted to see how I felt for a week as pressures changed.  I really questioned everyone both times they wanted me to have this done because I too heard don't do it with Chiari but I now believe that is PRIOR to surgery so that you don't cause the tonsils to herniate further.  Once they are out of the way it should not pull them down.  I had fluid removed too and it only made me feel better, it did not do anything to make things worse.  

Jen-  I have had two years of surgeries and complications and my current issues besides the fact that we knew I still had a pseudo was that I was still very tired, Lots of weird back/shoulder/neck pain that was not being helped by months of dedicated PT and I had been diagnosed with POTS so we were looking at if anything could be contributing to the high heart rate that I have when standing.  I also get a new headache that seems to be around my eye so perhaps pressure?  My NS just wanted to rule this out since we know I got pseudos after both surgeries, even with different patch materials.  He figures it has to be pressure to get leaks every time.  I felt really good after the first day of the lumbar puncture.  Low pressure headache day one but then I felt awesome and my back pain completely went away.. very odd after so many months of PT.  I am 7+ months post op from surgery number three.  If I do a lumbar shunt he may close the pseudo if it does not go away on its own.  It has been a long process!

[linnielou232]

I'm so sorry to hear about your set back.  I would think your sinus infection didn't help with your sisuation with Chairi, but as Selma mentioned going back to work full time might of been to much.  I also worked in a school in the kitchen, and sadly I couldn't go back because of the physical aspect of it.  I can't inmagine being a teacher and having flare up's.  I know how hard being a teacher is.  I am happy to hear you cut back.  Hopefully this will help.  Also happy to hear everything showed up good on your MRI.  Hope the best for you.  Just take 1 day at a time and listen to your body it is trying to tell you something.  

[Jenn444]

I was told by a Chiari specialist that it is perfectly safe to have a lumbar puncture after you have decompressed as long as the doctor doing the test is aware that you have Chiari.  No MRIs will show CFS pressure levels. If you are having pressure issues the puncture is the only true way to gauge and measure pressure levels. As zygy2 said, if you get relief it is an indicator that you may need a shunt.

Zygy2, if you don't mind me asking, what symptoms were you having that caused you to suspect pressure issues? Have you been decompressed?

Jen

[kar3514]

I was told if you had Chiari and even more so if you'd had surgery for it, a lumbar puncture was out of the question. Is there any other way to test for proper CSF levels? Wouldn't the MRI with dye show that?

[nsalem656]

I've heard lumbar punctures can be worse for those with Chiari.Although it can help too. It just depends.

[zygy2]

I am dealing with pressure issues right, they test by doing a lumbar puncture (spinal tap) but it can still not necessarily show.  They will see how you react to the spinal when they drain some fluid and then see how the next week progresses and what changes you see (better or worse).  I felt much better after they drained 30 units of CSF and that may mean a lumbar shunt for me.  Spinal tap is not really fun but it was not terrible and that is how they have to check pressure.  -zygy

[kar3514]

This is what I thought too...definately feels like CSF pressure...how do they test for that? I just had the MRI with dye so I thought it would show up in that but the report says nothing about pressure. I wondered about viral infection as well or lingering effects from sinus infection. Very frustrating! Thanks for your comments they are really helpful!

[kar3514]

Thanks for your response. I just had an MRI with contrast dye done last week. Got the results today which says..."Post Operative Changes. No evidence of an intra-cranial abcess or evidence of infection". Not sure what the post operative changes means?? I am going to try to get back in with NL asap and see what he thinks. I think I may go back to my ENT dr too...he was the one that originally ordered the MRI 2 years ago to get the ball rolling for my surgery. Since this set back started with sinus infection maybe its the best route to take. Thanks again for your response!

[Jenn444]

I wonder if you might be having issues with altered CFS pressure, either too high or too low. This can be an issue with Chiari both before and after decompression. I wonder if the pressure issues related to the sinus infection triggered or magnified issues with CFS pressure? It is just a thought but you might want to ask your NL. I am so sorry you are having a setback. I am a little over a year from surgery and have had an overall good result too but when things flare up is it very frightening. Sinus infections by themselves are really frustrating to completely kick sometimes. Maybe it is viral in nature (not responding to the antibiotics therefore) and just lingering and hopefully when it clears you will be back to your good self....

Please keeps posted...and feel better!

Jen

[selmaS]

  Hi and welcome to the Chiari forum.

There r several things that can be going on, u r not even 1 yr post op....the sinus infection may be circumstantial at best...and to explain what I mean is, yes the sinus infection can be the starting point for things, but u r still healing and u r back to work...it may be too much and this may be a way for ur body to regroup.

  It can also be scar tissue developed...there r post op issues that can occur....have u been for a post op MRI?...do u plan to have one in May?

  Too many times we feel great directly after surgery, and jump into doing a bit too much and then have a set back....it may be ur body telling u to slow it down a bit.....

  I would want a MRI to see if u r healing ok.....

   Cutting back ur schedule is great, I am concerned that u feel worse then b4 surgery, that is not a good thing...if ur NS does not feel the need to see u, go to another one for an eval.

    "selma"