15 days post decompression surgery

[lgarcia7712]

Hi, I am still recoverying from surgery (dec 12) and also survived the Shunt addition on Thursday. My NS said that I had hydrocephalous (which never showed up in any of the 3 MRIs that I had done), she said that I had a "membrane" or band wrapped around my brain that she had never seen before. She said it was literally suffocating my brain. This also never showed up in my MRI reports. I don't see the NS until the 12th, I was just wondering if anyone ever heard of such a membrane or lining that could have been wrapped around the tonsils of the brain. She said she had read about it, but I was her first patient where she saw it. She ended up removing it which is why my surgery lasted 10 hours long. She said that the band probably caused 95% of my symptoms. Overall, my symptoms are better, but still too early to say I feel better. The Shunt that I have now hurts me more than anything. It's a foreign item in my head and is just uncomfortable.

[selmaS]

  Just know the over emotional issue is also a healing issue and a chiari issue...as the nerve heal they can get over stimulated and we over react....

Keep in mind it is not that u can not handle it, it is ur body reacting to major surgery!!

[jiggle93]

reading all this reminded me of my mothers experience with her shunt. She had brain cancer with hydrocephalous also. They put the shunt in to drain the fluid that the tumor caused. Hers was on the brain stem, thus inoperable. But I clearly remember her constantly fidgeting with the side of her head, like it was annoying her or uncomfortable. She also would fidget with the abdominal area where the end of the shut lead to the stomach. I'm sure her issue was like what your Dr. is telling you. There is alot going on in these areas of your body, but do watch it as they told us that the shunt can become clogged,(but this was almost 12 years ago-maybe they are better quality now?)  I am curious if they put you on some type of anti acid? My mom was put on pepcid, the Dr. explained that the fluid being drained can really upset your stomach. But check first to make sure it will not counteract any other meds they have you on. REST!!!!!
Jiggle93

[lgarcia7712]

Sorry for the delayed response. I saw my NS within the next couple of days. I was told all my symptoms were part of recovery from a craniotomy. I was going to have to get used to what I hear. She wants me to move around more because she doesn't want scar tissue to get really bad where I can't move my neck. She gas ordered physical therapy which I think starts this week. She also has said that the Shunt is set at 1.5 which will only drain if the pressure in my head reachs a certain number otherwise its just there doing nothing. She doesn't believe the Shunt is malfunctioning. The additional symptom I'm experiencing now is abdominal pain from the Shunt. They say its scar tissue forming in that area. It's pretty painful. Since my soot last week, I'm a lil better. Really emotional, I think this whole experience has taken a toll on me. I was in tears talking to my Dr so I asked for some anti depressants to help me through this time. I really hope it helps.

[selmaS]

  Good...post  what u find out...I pray all is well : )

[lgarcia7712]

I will. My NS us going to see me tomorrow.

[selmaS]

  Hi...it is  very possible that ur shunt is mal functioning.....and I would suggest u call ur NS....

The ER will only band aid the situation ...give meds and refer u to ur own Dr..... so do call them and let us know what u find out.

    "selma"

[lgarcia7712]

I'm now 3 weeks decompression post  op, and 11 days post vp Shunt placement. I'm having pressure headaches daily now. This is the 5th day. I went to the ER last night because the headache, nausea, dizziness, and propeller sound in my ears was too much. My neck is still stiff. My NS told them to give me pain meds and send me home last night. Could the Shunt be malfunctioning?

[lgarcia7712]

I will definitately keep you both posted. I am anxious to have as much information so that our fellow Chiarians have ad much information for them to read through as we each walk through our experiences with CM.

[selmaS]

  Hi...u r the first I ever heard of this band....wow...u r rare!!

hmmmm not sure what to make of it all, but I am sending prayers that the pain subsides soon and u feel better.

Please keep us posted on ur progress and in the meantime REST!!

[linnielou232]

I really is nice hearing from you.  You have gone through the worse part and it sound's like once your NS got in there you had a lot more going onl.  When I had my first surgery they stated I had a lot of leision's they had to remove which probably caused a lot of my pain.  I'm just happy to hear the surgery is over for you and now you will be in the healing process.  Just rest, rest, rest, and please don bend or lift anything if possible.  This was one of my mistakes of not listening to the doctor or your body.  If you get tired rest,  each day will get better.  I have never heard of this band aorund the brain neither.  That's pretty interesting.  As far as the shunt will you have to have that for long or will it be removed?  I know every one respones differently when having surgery and as you say you have a foreign object in there right not that your brain is probably registrating.  "Your not suppose to be here".  After having surgery I have found the best thing for you right now it listen to your body.  We get to know ourselves pretty well after going through this, but your body will let you know if you need to slow down.  It hasn't been that long since your surgery, and I know with me people adviced me and my NS still does is that it take's a long time for some of us to recovery from this, so take one day at a time.  I'm surprised to hear they didn't see any of this wrapped around your brain.  Having surgery has to have helped with the relief of some pain..  Just remember your still healing.  Be patient.  Even though I know how difficult this can be.  Life will get better for you as long as you keep taking it easy.  Give your body time to heal.  We are here for you.  Wish you the best in recovery.  Keep us posted on how you are feeling.  The worst is over for you.