does this look like my dura patch is leaking?

[The_beat_goes_on]

I had my second decompression surgery November 18th ... and since my balance has been much worse.  And my headaches have gotten a little worse ... with added neck pain, and pupil dilation /blurry vision.  My head pounds with my heart beat when I am up and moving.  I've been throwing up, but not particularly nauseous.  I've mostly been in bed with ice on my head.  I see a regular neurologist in the morning and my neurosurgeon in the afternoon.  

My patch is a bovine patch, my first one was harvested from my scalp.  I'm posting some more pictures from the MRI I had Thursday.  Does it look like a leak?

[selmaS]

  That is fantastic...what a wonderful time you will have with the fire cracker..lol...and San Antonio is a great place to go too...I was down there a few yrs back...hmmm maybe 10 yrs...more then a few...lol...it was beautiful.

Me too love carbs and candy and I have a fear of diabetes as well since it was prevalent in my dads side of the family....

I was on Gabapentin and was not a fan as it affected my IBS issues so I was not on it long....my mom was on it a short time too as it cauased some side effects in her that were not worth taking it....

Have you tried TOPAMAX? It is not an easy med to take, but of all the meds I had been on it helped me and I am no longer on it....it somehow changes the headaches and I am now able to take an ibuprofen when I have a headache and they help me now.

Topamax has a acclamation period of  2 weeks...till your body adjusts you feel like a zombie...and it may not feel like it while on it but for me it was a big help......

[The_beat_goes_on]

My regular ophthalmologist (of about a decade) didn't feel comfortable treating me after my first brain surgery. Or else I would have gone to see him. I WILL make an appointment with my GP. I am so grateful to the physicians group of the woodlands. I sign medical releases wherever I go and they get EVERYTHING. They're my healthcare hub.

My brother married a woman with three kids. And they're the greatest kids. Two boys (8 and 10 now) and a girl who just started high school this year. My sister has a two year old helian that is a little firecracker. We are on call to go to San antonio to watch her because she wants a c section. She's having a boy. Shopping for baby clothes never gets old!  But it is a big deal to my family and I don't want any of my issues to take any attention away from my sister right now.

My vision is stable. If it gets worse. I will change my tune. I always joke about being able to handle anything! Except going blind and diabetes. Love my carbs and candy!

Have you ever tried gabapentin? I may start a thread about it later. It has a risk of suicide. I get to some low places. I would never go there. But that side effect always .... I don't know. Really!  The neurologost really thinks it might help with my occipital throbbing headaches. But I don't want to take a pill that might make me even more crazy.

[selmaS]

  Hi....oh I know how you feel and it can get a bit much going to Drs all the time...and needing a break ....I can relate.

I also agree with the over stimulated nervous system due to changes made with surgery.....I know so many of us go thru it...typically around 3 months post op...since this is your 2nd decompression it is possible for you to have symptoms surface sooner...

And I am with you with the vision issues....if mine had continued to worsen I deff would have been all over it.....but the only issues I still have and have had for yrs b4 my DX is depth perception and  night vision.....I was told it was age as to my eyes taking so long to focus...lol....oh well...and that was an eye Dr....I have not tried a neuro optho yet...may still sometime in the future.

Congrats on becoming an Aunt...is this a first?,,,,,

Keep a journal of your symptoms to see how they change....

[The_beat_goes_on]

Hi Selma,

YES, my syrinx has almost totally collapsed.  They didn't expect it to change for MONTHS.  My body has always healed in record time, so it shouldn't surprise me. My neurosurgeon's PA is convinced that my tremor and balance issues stem from an overloaded nervous system and that it will only get better with time.  My syrinx was about as wide as my spinal cord, and down to next to nothing in a few weeks ... so neurons might be firing that haven't in a long time.  Okay, I'll buy that.

The neurologist looked at my newest MRI -- the axial views, which I can't read at ALL, and said my balance issues are from the fluid collection.  Like I said, I've seen her before.  Her name is Dr Vanderlick ... she wanted me to try gabapentin back in 2012, and guess what she gave me samples of today! gralise.  the new, giant, time released gabapentin.  They're bigger than my dog's heart guard chews.  Dr Kim told me to wait a couple weeks before starting any.  He removed the rest of my tonsils and that area looks really good now.  He thinks I might be OVERDRAINING now that he "fixed" me ... and mentioned maybe removing my LP shunt.  But for now, steroids for inflammation, pain meds, valium for muscle tremors, and see him next year.  Today was his last clinic day of the year.  I am not even a month out of surgery, so the wait and see approach is okay with me.  He always tells me that I look better.  It's gut wrenching and never fails to throw me off guard.  I don't feel better.

I haven't even asked my neurosurgeon about EDS.  I will talk to my GP about it.  He will know what steps I need to take to get that diagnosis.  Dr Kim has never mentioned it.

My headaches are definitely worse though, and get worse as the day goes on.  So does my vision.  There are only 5 neuro-ophthalmologists in Houston, one dismissed me because he wasn't in my neurosurgeons hospital network, one has no openings till next year, and the other three aren't in network.  The dilated pupil thing .... that reacts sluggishly or not at all ... everything I've read said it's an emergency.  But an ER wouldn't do anything I haven't already had done and nobody has said it's an emergency.  I don't know what else to do right now.  I'm at the point where I want to try and put this on the back burner and not ruin my family's Christmas.  And my sister is going to have a baby any day now.  I know it's ludicrous to let my vision issue go, and if it got worse or became permanent I'll regret it.  But I'm done with doctors.  I even canceled my yearly pacemaker check that was tomorrow.  I've had it checked before and after every surgery this year, and before and after every MRI, so I know it's fine.  But enough is enough.  For now.  My tiny white flag is waving somewhere.  

[selmaS]

  And was EDS a DX for you?

  I saw you also had a syrinx that looks smaller in the new MRI's.....

And wondering what all was done....did he cauterize the tonsils this time?

Good luck and let us know what you find out.

[The_beat_goes_on]

Hi Selma,

He used my own tissue last time. So I just assumed he would do the same this time around. I didn't even think to ask what kind of patch he would use. The surgery happened because my herniaton was worse than it ever was ... I was hoarse and choking. I thought the surgery would be weeks out. But it was the day after my appointment.

His nurse set up the appointment with the neurologost to do a full workup. I didn't even know about it until today. I've seen her bedore  and she will go over my MRIs with me ... Before my NS appointment tomorrow afternoon. So I'm kind of glad. Maybe she will see something that explains my symptoms.

[selmaS]

  Hi, yes this can be a leak especially with the symptoms you are having.....may I ask why they did not harvest tissue from you for this surgery? Was it a leak that resulted in this surgery....I apologize I do not remember...

Please let us know what you find out....good luck .