Meds, meds, and more meds

[kulili]

Hi, I'm a 25 year-old female college student.  I've had migraines since I was 13.  I was (finally) diagnosed with intracranial hypertension at 21, Chiari Malformation at 22, and Ehlers-Danlos Syndrome at 23.  I've seen neurologists in New Jersey (my home state), Philadelphia, New York, and Maryland.
I had a craniotomy/decompression, duraplasty, and laminectomy of C1 three months after my Chiari diagnosis at a well known hospital.  It has been three years and I consider the surgery an utter failure.  I am no different than I was before (with the added benefit of a psuedomeningocele!).  My last cine flow (post surgery) shows I still have a blockage.
I have tried more medications than I can count and they either do nothing or the side effects are so terrible that I can't stay on them long enough to find out it they'll work.  I seem to be stuck in a cycle right now where I go see the neurologist, get a new med to try, have it fail, and have to deal with the migraines for another 6 months to a year until my next visit.  Is this how things normally go once surgery has failed?
Any feedback would be greatly appreciated - and please, if a med has worked for you, let me know!  I go back to see my neurologist in a couple of weeks (only the third time, she just took over my case because my old neurologist was so busy I could barely ever see him) and I want to be prepared.
-Kulili-

[selmaS]

Well my NS was quite clear as to how it could affect me and y he would not use a patch not  made from my own skin.....he wanted to reduce the rejection  possibilities...not al with EDS will have an issue, it is just a safe guard...

Psuedomenigocele sometimes can pose an issue...so to give u a blanket statement that it can't is not true.....we have had many members where they had one that caused them, plenty of trouble.

Do keep an eye on it and if u have ne changes call ur Dr asap.

"selma"

[kulili]

I was told I have the hypermobility type of EDS - tests for the more dangerous types were negative and I don't have the marked skin hyperextensibility of the classical type.

My last round of scans did show a leak at the patch site (listed as a psuedomeningocele in the doctor's report), but I was told it wasn't an issue and it wouldn't cause any problems.  It was discovered after I was diagnosed with EDS.  That's why I find what you've said about foreign matter rejection so interesting.  No one has ever mentioned it before.

[selmaS]

Well, if u r having issues it could be a leak or rejection of the patch.....there r several possibilities u should be checked for....I am not sure how they check for this, but know it must be like an infection.

DO u know what type of EDS u have ?

"selma"

[kulili]

@Pam - I thought it was, but I'm no expert either.  I looked it up online after I read your post and got conflicting answers, so I guess I have another question for my neuro, huh?

@selma - No, actually, I was diagnosed with EDS after the surgery.  And I haven't been checked for rejection.  Didn't know I could be.

-Kulili-

[selmaS]

Did ur drs know u had EDS?...those with EDS tend to reject foreign matter and y my own skin was harvested....did they ever check u for rejection of the patch?



"selma"

[pamk5]

I looked up Topamax and it looks like it is an antiseizure medicine used for migraine prevention.  I dont think it is a beta blocker but then again I am not a doctor.  Ask the doc about atenolol, propanolol, or metoprolol all those are beta blockers I know.  Beta blockers block the adrenaline response and are typically used for high blood pressure (which is weird cause I have low blood pressure) and migraine prevention.  

[kulili]

@selma - It must be bovine.  I was offered a choice between animal (I have no idea why but I thought it was sheep, is that even used?) or synthetic.  I said I wanted whatever works best.  The neuorsurgeon told me there was no difference between the two but they offer the choice because some people object to the use of animal.  Since I had no objection, they used animal.

@Pam - I'm laughing at myself right now because in my research of beta blockers I realized I've BEEN on one for years!  I've been on topamax since I was 13 and I never even realized, very silly of me.  I may not be in the best shape now, but without it I know I'd be miserable, so I guess it's doing it's job, huh? ^_^

-Kulili-

[pamk5]

I understand your frustration with doctors.  I have been told everything from "good news is once you have surgery you are cured" to "nothing there to cut out so no need to see you back".  Maybe now is the time to go ahead and search one out and get in to see them.  I was reading the rest of your posts and if you have brain slump seems pretty important you get someone who specializes to try to fix that for you.  

As far as Beta Blockers go I am taking Atenolol was prescribed for POTS and NMH but it seems to be helping some with the headaches.  That is a good thing when the meds help with things they werent prescribed for instead of causing more problems.  

Pam

[selmaS]

Hi...well if u have brain slump, then they took too much bone away....that is the only way that happens.

And y u feel as bad as u do...I do not understand the conservative comment tho....in most of the things I have read conservative surgery for chiari usually means they do not open the dura...

DO u know what type of patch they used for u?....some use bovine, some cadaver, some synthetic, and some harvest skin form the patient...I had my own skin harvested....

"selma"

[kulili]

I've been researching chiari specialists since my last post ^_^

Yes, they did a duraplasty during my surgery.  The neurosurgeon told me and my mom later that she was surprised at how tight my dura was - they weren't expecting it to be so filled, I suppose they weren't expecting my pressure to be so high.  I think they were referring to the amount of bone removed when they said it was conservative, although since the surgery my brain has slumped further down, so conservative may very well have been a good thing.

-Kulili-

[selmaS]

If u r able to get to a chiari specialist or at least send ur MRI's it may be very helpful to know what is going on....

And conservative...they didn't do a duraplasty then?....most decompressions without dura plasty seem to need to be redone as they do not relieve the issues.

I am so sorry u r having these problems and I hope u r able to get answers soon : )

"selma"

[kulili]

I really appreciate your answer.  You are right, no doctor has said my surgery was a failure, although they did say it was perhaps too conservative.
Everything else you mentioned is dead on as well.  Neither I nor my neurologist (past or present) have been able to determine whether my IH causes/worsens the Chiari or vise versa.  Or if the scar tissue is causing problems (the EDS made my scar very strange indeed ^_^).

Thank you for your help (and for your welcome!)
-Kulili-

[selmaS]

Hi...were u ever told that ur surgery failed?...that u had cerebral ptosis?

to say ur surgery was a failure on how u feel is incorrect..even tho to u the pain feels like the surgery was a failure...surgery is not a cure and u have a lot going on...IIH and Chiari.... surgery is to restore flow...so the fact u had another obstruction means something else may be going on....was the other obstruction from scar tissue?
And with excessive CSF it is hard to keep the tonsils from re-herniating....as the fluid will just push them back down and cause another blockage. I would imagine u r on Diamox or something similar....and I wonder if a shunt surgery was ever an option.
it seems so many with IIH and chiari tend to have EDS along with the other 2.....and the fact u had a psuedomeningocele makes me wonder if it is the IIH giving u the issues.....too much fluid and no where to go with it.Plus, EDS can cause many issues for us as well...and the problem is which is from which?

It is difficult to know which pain or symptoms is from which condition...so which do u treat?

I had chiari surgery and restored CSF flow..6 months later, I found I again have a CSF blockage, not as big a blockage as b4, but this is from a bulging disk....so, I will have some of the same old symptoms, but it is from a diff condition.

Find out what is causing the blockage.....

I pray u found a good dr that is able to help u get answers and relief.

We r happy to have u join us, but not happy for the reasons u had to seek us out.

"selma"

[kulili]

Hi Pam!
Unfortunately, no, the neurosurgeon was not a specialist.  Neither is my neurologist.  Honestly, I haven't had the best luck with doctors.  This is the third time I will see my current doctor (she practices from the same hospital where I was diagnosed and where I had my surgery).  I've already decided that if I continue to feel frustrated after this next visit I'm going to search out a chiari specialist.
Thank you for letting me know about beta blockers.  I actually don't think I've ever tried them.  I'll bring it up at my visit.  Anything that helps at this point would be wonderful ^_^
-Kulili-

[pamk5]

Hello and welcome!  Was the doc that did your surgery a Chiari specialist?  I am sorry that you are still having issues.  It may be wise to gather your records and scans and try to see a true CM specialist to see if there is anything else that can be done.  I havent had surgery yet.  I am presently waiting for a date.  However, I have found that beta blockers seem to help with the frequency and intensity of my headaches.  Doesnt take them completely away but I dont seem to have them as often.

I hope this helps. Again, welcome and I hope you find as much good information and support here as I have.  

Pam