help...more testing, more headaches, no answers

I had a cervical/brain myelogram.  It was suppose to help resolve the issue of what the mass at the base of my skull is. In 09 & 2010 MRI's said there was csf on the outside of the dura.  After a CINE MRI it was stated "abnormal mass-like structure in the suboccipital craniotomy defect could represent a hematoma.   Also bothersome to me decreased csf flow i the posterior fossa and posterior portion of the foramen magnum with sparse to absent flow on CSF cine loops.  Also the right vertebral artery is hypoplatic. I am wondering if anyone would like to translate.  For reminder:  I was decompressed in Feb of 2003, goretex dural graft...2 months later leak #1, 1 month later #2 leak, 2 months later #3 leak and bovine patch placed over goretex, then begins life with a programmable shunt but the first placement cause a bleed & stroke, placement #2 became infected 5 months later. I have lived with #3 since, but doctors are sure if it is working because the reservior can't be pumped.  Please any thoughts, questions, and or help would be GREATLY appreciated,  Linda in Oregon

[selmaS]

Hi Linda..so good to hear from u again.....sorry to hear u r still having issues.

A hematoma is or can be an injury or inflammation....it can look like a hematoma and be scar tissue and with the infections and rejections u had it could be from that.

Do u still have a CSF flow issue?....and I am not sure if I follow all ur numbered sequences, but did u have 2 diff shunts placed and only one is working?Or was the shunt relocated 3 x's?

Hypoplatic means abnormally small and in talking with a chiarian that is not abnormal to find.


With all this going on.....how do u feel?......do u continue to have symptoms?


"selma"

[*Stormy*]

Hi Linda,

I feel for you...having one thing after another, I really hope that you get some respite from all this!

A hematoma usually refers to a collection of blood....As Selma said, hypoplastic refers to being under developed..

To me it sounds like they are saying that they think you have a clot of blood in the area where they moved a piece of your skull...I am guessing that this could be the cause of the decreased flow of your CSF.

I took medical terminology last year so I have a big old book of it if you need any more translations!!

Carolyn

[Lindad1966]

The flow study was just done that showed the restricted flow.  I want to know if it is dangerous to have my amount of restricted flow and that is a question I have on my list for my doctor on Thursday.  

As for the shunt issue, it is 3 different ones and #3 may or may not be working.

How do I feel?  All I want to do is sleep and my head hurts a lot.  I have had 2 episodes within the last 4 months where I was laughing while standing and I felt very faint.  Laughing ALWAYS gives me a headache.  So I basically feel like crap.

[selmaS]

Yeah laughing affects those of us with chiari pretty much the same...sharp HA and feeling faint....

I guess it all depends on how much CSF u have building up....or if ur body is absorbing it...did u have a LP?

"selma"

[Lindad1966]

it is a vp shunt.  btw, i also have a lot of pain in my abdomen where the end of the shunt is.  What questions do you think I should ask the doctor on Thursday? Linda

[selmaS]

Linda, I wish I knew more about the shunts to advise u, but I am sure u will ask about the abdominal pain and if it could be from the shunt.

But do ask about the amount of CSF and if the shunt is doing it's job....ne symptom u may have ask about...don't hold back and think mayb it is something else, let the dr tell u what it is from.So if it bothers u...ask about it : )

"selma"

[Lindad1966]

I seen my doctor on Thursday.  He said that he would not do anything for my chiari or my lower back.  He was concerned about making things worse.  He did not feel that the pain in my stomach could in any way be the shunt.  So I am at a loss as to what to do.  

[selmaS]

I am sorry this dr did not suggest what can b done other than nothing?.....I can't remember if u were checked for tetherd cord .

How is ur disgestion?...do u have issues with IBS or acid reflux? If so, that could be ur stomach pain.

I am not sure if ur dr is a chiari specialist or a dr that does take care of some chiari patients....u may want to try and get another opinion if u r still having issues and the other dr is of no help.

"selma"

[pdxmomof3boys]

Hey Linda, I'm in Oregon too. Do you mind if I ask who your docor is and what hospital you are using? I saw Dr. Gore at Providence St. Vincents and he is very good. I think I may have asked you this already...but my memory was REALLY bad before and is just starting to improve :) I highly recommend the NS in his group (Brain Institute of Portland) and can get you info if you need. I hope everything works out for you! I think the most important question to ask is how this can be fixed without causing more damage -- because it seems as though anytime they tried to "fix" something they made something else worse for you. Please let me know if you want his information -- I wouldn't give up if I were you! there must be a way to fix the problem and a confident enough doctor out there willng to help you. Like Selma said about back and neck surgeries before: doctors are really hesitant to open you up after you've already had surgery. Mostly the liability! Keep looking for a surgeon that will help you -- one who has a solid reputation!

Rosemarie in Portland, OR :)