Post Decompression - ???Pseudo Tumor Cerebri???

[laratterman]

I went to my first post-op appointment with Dr. Di on the 12th.  He was discouraged that I came in with the walker.  (I was too!  LOL!)  Part of the reason for it is the increased and continuous dizziness.  Another reason for it is the weakness in my left leg, that quite frankly, I don't believe has anything to do with my Chiari, but with ??Dercum's Disease?? which has still not been 100% diagnosed, but suspected (a great number of angiolipomas all over my body, which cause pressure on nerves, which also respond negatively to stressors such as illness, surgery, tramas...)

With regard to the outcome of surgery, I have most of the same symptoms still and some, such as my head pain and pressure, which is still present, but in a different way.  More pressure now than pain.  That being said, he suggested that I may have PTC.

Right now, we are in the "testing" stage to determine if PTC is what's causing my continued problems.  So he has had me on a Medrol Dose Pack for the term of it (6 days).  Once I'm finished with this, I will take a week off and then he was going to have me take Diamox for ten days.  Well, as it turns out, I can't take the Diamox because I am allergic to sulfa and it contains two different sulfa molecules.  SO... I will be taking Lasix instead.  (It still has a sulfa molecule, but the pharmacist has encouraged me that it isn't the same type as the one's I have had reaction to.)

WOW!  I can't imagine having to use the MDP on a regular basis.  I am SO miserable!  And the last thing I want is to gain weight from it! (My niece was on steroids for a very long time and she looks like someone hooked her up to an air hose and forgot to unplug her!)  The pressure in my head is incredible. I am emotionally strung out.  And last, but not least, with the increased pressure is more pain.

The doctor didn't explain what he expected each of these meds to do.  I suppose his reason was so that I wouldn't have any pre-conceived expectations and he could listen to what I told him and figure out what he needed to extract from that.  So far, my experience with the MDP is a HUGE increase in pressure... and the back of my head and neck are swelling... and that area of my head burns inside.  I'm hoping then that the Lasix will reduce the pressure.

I'm not sure what to do if this is a pseudo tumor.  As much as I don't want to be on these meds long term, I also am not fancying another surgery.  I have seen where too many people have repeated problems with the shunts too, requiring many additional surgeries.  It seems there is no really good and pat answer. Again, I don't want more surgeries... especially when there is no guarantee from them that there would be any lasting benefits.  

For those of you who have dealt with this...  In your opinion, would it just be better to use medicine therapy?  I do drink lots of water all the time.  I have had urinary and kidney issues all my life, so I'm sort of used to it.  I am one of those people who always has something to drink in front of them.  I guess I would have to weigh the side-effects of drugs against surgery.  I can't risk any further damage to my kidneys, for instance, as I have almost lost one of my kidneys on two different occasions.  I am not on dialysis, but my aunt had the same thing, and was on dialysis by age 55... and died at age 62.  She also had other problems I do not have, and likewise, I have other problems she did not have.

I am not ruling out whether or not the decompression surgery was a success for me.  It has only been 7 weeks.  I have dealt with these symptoms for over 12 years... and some for my whole life.  I didn't expect a miracle but hoped for SOME relief.  But what I went in expecting was only to have the progression of my symptoms slowed or halted.  I'm not willing to throw in the towel yet!  ;)  (Although there are certainly days!)

Thank you all, in advance, for your pearls of wisdom with this.  I love and appreciate you all so much!

((HUGS)) and blessings!!!

[selmaS]

Hi Lori...u stopped the steroids right? geeze...not fun at all, but it does feel great to have a dr care about how u r doing...and I am glad u finally have one.

Sorry u r missing Steves Bday, does he understand?....I know u were having an issue with family and understanding what u go thru....I am praying for u  on both issues.....

I think waiting this out, barring u do not begin to feel worse and see if the steroids caused the swelling and added pressure and if so, it should feel better than getting a shunt!!

Keep me posted\and I will keep u in my prayers : )

"selma"

[*Stormy*]

HI Lori

I wish I could add some advice but I haven't been in that situation to be able too. I did have a really hard time with pressure in my head for a good 4-6 weeks after surgery, but it went away on it's own for the most part.

I am really, really sorry that you are dealing with this...I wish things weren't so rough for  you. You are such a positive presence and a strong person so I have faith that you will get through this and they will figure it out and you will be able to live your life.

Thinking of you..
Carolyn

[laratterman]

Well... that's sort of what I thought, but Dr. Di seemed to want to pursure it.  In fact, I told him that I wasn't ready to concede, that I still had swelling (even though slight) around the area of my incision, so I felt sure that there was probably some inside too!  He was just very concerned about my dizziness and the problem with my leg (that I don't believe has anything to do with all this... unless, of course, they do find a pressure issue, and then it well could).  Imagine that though... a Dr. who is concerned about me?!  I don't quite know what to make of it!  LOL!  (And during my first appt. we even talked about the fact that it would take at least 3-6 months to heal... and perhaps upwards to 1 year.)

I am DEFINITELY not ready to move forward with an LP or a shunt, if the finding show cause to believe PTC.  I want to give the healing more time.  Also, especially since I have been on this Medrol Dose Pack and they adverse way it has affected not only my head and neck mostly, but honestly, my entire body... and especially these tumors.  This has pretty much proved to me that the guess on Dercum's is pretty much spot on.  You aren't supposed to take steroids with the Dercum's, as it inflames the tumors.  And.... YUP!  I can vouch for that!  Seriously, this is rough!  (Tomorrow is Steve's Bday and I won't be joining family for dinner... I just can't do it.)  I feel, not only the intense pressure inside my head, but also like someone is pushing down on my head, smashing my neck.  Occasionally, when I turn my head certain ways, I get a quick catch and then this flash of hot pain.  And my eyes just throb and my vision is in and out of focus.

Again, the MDP has definitely increased the pressure, among other things.  Tomorrow is my last day.  Hopefully my body will get back to the normal increased pressure soon.  Then, a week from Saturday, I begin the Lasix.  I hope that won't cause more problems. I will be on it for 10 days.  These two meds were used totally for diagnostic purposes and will tell him, by my symptoms, I suppose, whether or not this is PTC.

Is there no end to this merry-go-round once it starts?!  I am wondering now if there is any connection to whatever genetic factors are screwed up that might have caused both the CM and the Dercum's...???  "Would you like fries with that?!"  LOL!

You know... no matter how bad you feel... sometimes you just have to laugh!

((HUGS)) and blessings, S!

[selmaS]

HI Laura.....

I have not had PTC as a result of my PFD, but I know it is a possible side effect that has no reason or rhyme to who  will or will not get it.

Since they do not understand how or y the body over produces the CSF I am not sure there is a medicine that can be given to curb it.

It could be that u need to give this some more time 7 weeks is not a lot of time and mayb with ur other health Issues  mayb u r slower to heal and mayb u still have swelling??

I know there r a lot of mayb's there...but medicine is not an exact science....

I pray my mayb's r on target and u feel better soon : )

"selma"