278?1253665060
The Chronic Pain Couch User Group
Severe, daily HA after craniotomy/vp shunt d/t arachnoid cyst (facial s...
About This Group:

This is a great site for anyone suffering from Chronic Pain or has a Family member or Friend who suffers. A place where you can tell your story, find others with similar conditions or pain, help someone in need, read up on the latest Chronic Pain treatments or simply sit for a while. Chronic Pain as we all know can be debilitating and relentless. It is not prejudice in any way, shape, or form. It can strike without warning and stay for life. The Chronic Pain Couch is a place designed for your comfort, and please note.. You don't have to suffer from chronic Pain to be a part of this community, we offer a variety of other topics as well. I truly hope that you will come and join us. And remember, there is never a need to worry whether or not your post has been read, a member or myself (Molly) are generally available to read and respond to all posts that come our way...... We are always here for you. Together We CAN Make A Difference in each others lives and how we manage day to day in coping with our relentless pain. Warmest regards, Mollyrae, founder of The Chronic Pain Couch.

Founded by Mollyrae on September 22, 2009
780 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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.
3 Comments
Blank
606340_tn?1371501412
   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.
Blank
Avatar_f_tn
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.
Blank
Avatar_m_tn
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
Blank
Recent Activity
973741_tn?1342346373
Blank
specialmom commented on Scared now...Not sure...
4 hrs ago
480448_tn?1403547723
Blank
nursegirl6572 commented on terry
8 hrs ago
6669309_tn?1413941692
Blank
breezytoo commented on breezytoo's status
18 hrs ago
MedHelp Health Answers