Severe, daily HA after craniotomy/vp shunt d/t arachnoid cyst (facial swelling)

My husband is 42 years old.  He was diagnosed with an arachnoid cyst in the left medial fossa of his brain last January (2012).  It  was an incidental finding after he was sick.  Unfortunately, he began having horrible headaches and had extremely swollen lymph nodes while he was sick.  They did the CT to rule out lymphoma.  The cyst was approximately the size of a small lemon  and caused displacement of his brain about half way back in his head.  His face was swollen and flaccid like he had a stroke that affected the left side.  The neurosurgeon originally did not feel it was related to the cyst, but after a few months of trialing medications that did not help at all, they opted to attempt to remove the cyst.  The neurosurgeon was able to remove all but a small, "nickel-sized" piece of the cyst that was attached to brain tissue.  Within 60 days after the surgery, my husband said he felt like it was back.  The neurosurgeon did not think so, but agreed to do another CT scan to be sure.  Not only was it back, but it was larger than before.  So, in August (2012) my husband underwent a 2nd surgery to place a VP shunt and drain the cyst.  He has not had one day without a severe headache since all of this began.  He now has facial swelling again that is worsening every day.  He has had a repeat ct and shunt testing, both of which were negative.  He is so frustrated and in so much pain.  Does anyone have anything they can suggest?  I can only think that there is a leak around the skull flap since the shunt checked out alright.  Please let us know if anything has worked for any of you, or if you have heard of anything similar.  He feels very alone.

[aheart]

   This is something that you should be asking someone like the Cleveland Clinic or Mayo Clinic. Theywould be able to point you at least in the right direction for help. I feel for your husband being so young with all this grief at such a young age. It must be very frustrating and frightening for both of you. Good luck to you both. God Bless.

[avgkevin]

Thank you.  We are working on trying to find another opinion.  We are being told his case is very abnormal, so we were hoping to find someone who might have experienced something similar and to see what they have tried.  We genuinely appreciate your prayers.

[omhome]

So glad to hear from you!  You know---you might try to find people with similar experience for your husband to relate to and share with and learn from etc. by contacting your local hospice---and their information person. And local drs. who may have patients with similar conditions. Hard stuff  huh?  It can help if you can keep up a positive chant in your inner dialog (husband especially) to counter-act the negative thoughts----"i am strong" ------ repeat with breath---or any affirmation you like or resonate with.. When the dark thought comes---bring the light. Yes  Yes   Yes   works wonders for me.  om om om    omhome