Dura Patch Rejection

[InvestigatingMom]

My son had his 2nd brain decompression surgery in September.  We are 2 months today out from the surgery
And he has been in the hospital for 32 nights since the surgery.  They originally said he contracted bacterial menigitis
And the cultures never grew back anything.  He was on vanco for 2 weeks and got red man syndrome.  Then they tried different pain meds, muscle relaxers, nausea meds.  Basically, told him he was fine and a hypochondriac and not to come back to the hospital.  After this we stayed away from the NS team to try to get it resolved.  He is down 42 lbs.  has not been able to stop with the vomiting and nausea no matter what they have done with IV meds, hydration, pain meds, etc.   He sometimes seems to respond best to Benadryl of all things.   The infectious disease Dr keeps bring up the Durapatch as the culprit but NS said they use the same one on all their surgeries so that can't be the issue.
Am I crazy to think there could be someone out their that could get a reaction to it?   I am looking for anyone who has issues with rejecting the patch just so I can look for some similar signs.  

[selmaS]

  Sending u and ur DS <3 ((hugs)) and prayers

[InvestigatingMom]

We got the news that was some what expected today after his 6th spinal tap.  They believe the patch is the culprit.  He has been off all antibiotics for a week and they did a LP today and the numbers in the CSF are actually elevated from where they were a week ago.  So, they said more than likely it is the patch.  They are going to do surgery tomorrow afternoon to remove and replace with a patch harvested from his own tissue.  I want to thank all of you for your encouragement and sharing your stories. This has helped us come to a resolution and my son feels better when I tell him about you guys that have struggled and made your way through.  I will keep you all posted on the outcome. Thanks again.

[zygy2]

I hope you find some true help soon!  I went through a similar process and had to switch neurosurgeons and hospitals so that I could get someone to listen that something was wrong!  I did not know I had EDS or POTS when I had my first surgery.  I knew things did not always go well for me so I asked to use my own tissue but they argued the synthetic patch.  I knew better and if only they had listened.  I had a pseudomengocele so once I found a new neurosurgeon that would listen I scheduled a second surgery.  My surgery to close the leak caused more problems because we had not figured out the patch was the problem yet and then that led to a third surgery.  I had been so sick, I was so nauseous, they told me aseptic meningitis, I had unexplained fevers, I was on tons of meds, I was so sick all the time and had no idea what was wrong.  When he did my third surgery they found that although the patch would not close and seal the leak, it did stick to my brain!  Once the leak was closed it caused a change in the spinal fluid movement and drilled a hole in my cerebellum.  It was a horrible experience.   I even tried a shunt to drain fluid.  I had spinal taps and I had the drain in my back for a while, it was always something else and I agree with you son, it was torture.  The nausea alone was torture.  I had 11 surgeries in three years, four of them were head and then a bunch of shunt related surgeries.  My final surgery they made sure they cleaned out every single piece of synthetic patch and used my own tissue.  Finally I did not leak and have a pseudomeningocele.   I still had things to deal with because so many surgeries put my body in a bit of a crazy mode.  It took me about six months to figure out what was happening and now I am on meds for the POTS, and it helps with adrenaline dumping which they think is a problem for me and related to the POTS.  (hyperadrenic pots)  It really rots to find out about EDS and other things because your surgeries are going wrong but the faster you find answers the better things will go.  I hope you can find a dr. that will listen.  My head needed that patch GONE!  I tried diamox, I don't remember why exactly but I know I did not stay on it very long.  I have a lot of reactions to meds and have a hard time taking anything.  This made the surgical process so difficult.  Keep fighting until someone listens, it is very frustrating and it appears that not all Dr's that claim to know about Chiari really do!  Good luck and I hope he feels better soon!  -zygy

[InvestigatingMom]

Thanks for taking time to respond.  I appreciate it. I am sorry you are going through this too.  We are still in the hospital.  47 days now.  He will go home for a day or two and then we are back in the hospital.   They are giving him Zofran and Phenergan for nausea.  It has brought the vomiting under to control to the point where he only throws up ever couple days now.  They have done 3 spinal taps since 11/23 and the pressure has been 30,29 and 31.  The numbers in the CSF don't look to be clearing up.  They had him on vanco this time around(was on for 2 weeks in Oct) for 16 days with cefepime.  They are going to do another LP on Monday and then possibly a lumbar drain to drain some of that excess fluid.  He has the pseudomenigcole(might be spelling wrong) and they said the drain may help clear it up.  Do you know of anyone that has tried Diamox to help reduce the excess fluid.  The NS said the Aseptic Menigitis may be from the patch the other day but they can't do surgery right now to fix it.  I have gone through and read so many articles to see what can be done and I feel helpless because sometimes they listen and sometimes they don't and he is just laying in the hospital bed with no PT or anything.  Very frustrating.  

I hope you get to feeling better soon.  I will say some prayers for you.  

[Marybuzz27]

Mom
I am going through the exact same thing as your son. I've spent a month in the hospital with them telling me I had chemical meningitis. Then I was put on vanco and every other antibiotic under the sun. I wasn't able to keep anything down. None of the nausea medications worked. Benadryl is the only thing that gave me any relief. Even though I'm still in a ton of pain and my blood pressure keeps getting really high then low so I constantly feel like I'm going to pass out the nausea finally has subsided when they put me on Marinol. It has done wonders for my stomach. But I'm still breaking out in hives and was told by a GI doctor that specializes in eds to ask my bus about my patch. My ns said my patch looked fine during my second surgery. I however am not convinced and am in the process if finding someone for a second opinion. Good luck to you and your son.

[selmaS]

  Hi....I have heard of these rejections and many times it will cause a CSF leak, which explains the nausea and vomiting.....

U may need to seek advice from a Diff Dr....out of ur area....

A reason one may reject the patch is they have an underlying condition that was not detected b4 surgery....Ehlers-Danlos syndrome can cause those with it to be prone to rejection of foreign matter, so a patch over the dura made from nething but our own tissue may cause these issues.

The Drs ur DS is dealing with may not be true Chiari specialists since they seem to think it is a one patch for all (like one size fits all) when they need to look at each of us individually to see which is best for us.

I would get copies of ALL testing and send to a true Chiari specialist for a consult and review.

[desertstorm2009]

Mom....
I agree with Frankie, the Neuro Dep. is trying to pass the buck. I would demand a meeting to include the Chiefs of Neurology and medicine. I would tell them that the last time you checked, we were still practicing evidence base medicine in this country, and so far the evidence in your sons case has clearly been ignored. Tell them they have 24 hours to do their job. You know it's bad when the family Docs are trying to get your son elsewhere..... I'm not so sure that wouldn't be best! Here is some more info to consider;
1. Chemical meningitis is a possible risk of this surgery. It can be due to the synthetic patch. Your son does have these symptoms.
2. A pocket of fluid is not "normal" after this surgery. It can indicate the presence of a complication called  Pseudomeningocele. Tell the Dr's they may want to review Chiari 101.
3. As the mother, you have the right to see your sons labs, MRI reports, and any other results they have. Do not take their word, tell them you want to see these things now. In the lab work, look for any abnormalities that may indicate inflammation.... This is referred to as a shift in the differentials and can be seen under the CBC results. Carefully look everything over and read the summary on all reports. For anything abnormal demand a plausible explanation.
4. On a side note, check your sons Vancomycin levels as this can need adjusted! Yes, you have to watch the pharmacy as well! Good luck to you. Remember, you are strong. The title to your post said it all in my opinion. Lastly, you are not alone :-) Lisa

[InvestigatingMom]

Thanks for the replies.  He is back in the hospital again.  Was admited on Saturday because of the nausea, vomiting and he started to run a temp of 102 plus.  He hit 104 in the ER.  The WBC is high in his CSF and low glucose level.  His WBC in his blood was 15 but that was resolved almost with the next blood draw.  They put him back on Vanco and Cefeprine(not sure is spelled correctly).  So far nothing has grown in any cultures again.  It is eerily similar to the beginning of Oct even the test results that never pointed to anything bacterial or even viral.  They just said in rounds that it appears to be related to the surgery.  We have Drs in and out however the NS team are the only ones that state that a fluid pocket in the brain that has grown since October could not be related or be the reason for pain or nausea/vomiting and this is normal.  It is not normal to lose weight, and can barely walk or even sit up without shaking.  This is a shake that looks like he is very cold but he is not.   All the other Drs(Family Med, Infect Disease and even a General Surgery team are all pointing at the fluid and questioning the patch).   My son just turned 18 and all he keeps saying is they are torturing him.  I am watching him go through all of it and have been by his side the whole time which has been very frustrating when you ask questions and the NS team basically says NO, not an issue without thinking about their answer.   The only good news now is the Family Med team is on board with us and are in control and they are bringing in as many as they can to rule things out.   They are telling us basically go through the motions for a day or so while we prove the issue.  His Primary Dr is trying to get him into the Mayo Clinic but I don't know how he would be able to make an 8hr ride when he can barely make it now for a 35 min ride to te hospital.  

[frankie_rush]

Yes I would contact him.  It does sound like what desertstorm2009 is saying.  The other NS sound like he doesn't want to be held responsible.  It can't be that I am better than that.

[desertstorm2009]

The fact that the Drs treated your son for "Bacterial" Meningitis in light of negative cultures is amazing..... More like "Chemical" meningitis which yes, can be caused by the patch! I had a discussion with Dr Oro about this. He has had to remove patches from patients for this very reason! Please consider contacting him! As for the Dr who stated your son is a hypochondriac; This isn't likely as evidenced by his 46# weight loss Doc! Another medical moron that should be reported :-) Lisa