help!

[soccero]

I dnt no what to do anymore. I had decompression surgery in aug. 17, 2009 I had a 16 mm herniation with a 15 mm syrinx. After surgery I had an MRI about a month out to see if everything went ok because I had been feeling so horrible. The mri came out fine. My syrinx had shrunken significantly.   Nothing ever got better for me after surgery.  I still have a constant headache and I never no weather it wil be not so bad that I can function or weather I will be stuck in bed all day. I have tingling in my hands and feet I have numbness in my hands I have fullness in my ears all the time and most of the time bad pains in my ears also. I have a spot in the back of my head where if it is pushed on sends shooting pain to my ears up my head and down my neck. I have constant back and neck pain. I have swelling I'm my hands and neck. I have a very noticable limp. I am 16 and can barley function I miss a tone ofschool and am only going half day.  I spend most of my weekends in my bed much less with friends. My life was significantly better before surgery. I have swiched ns and am now with dr Campbell at Alfred I dupont children hospital in Delaware        

[selmaS]

Hi Molly....I can only imagine how it feels to be ur age and dealing with this....I do remember having my HA's then...and being sent to a shrink....I know the frustration as it is the same as when u r older...but u r right , someone ur age should be able to go to school and socialize.

Unfortunately, the surgery is not a cure...it can only stop progression...and we can/may have long term effects if damage to the nerves too place.

I still feel sending ur MRI's out to a few chiari specialists to see if u can find something out as to how to control the symptoms u r having to get some  life back to normal as possible.

I too have some issues going on and I understand it is not what I had hoped for either.....but , I was not promised much more than this either....

I am sure there is a way you help u out there, it just has to be found.

Sending prayers ur way
"selma"

[*Stormy*]

Hi Molly

I had my surgery in Dec. 2009 and I can relate with some of what you are saying. I am still getting constant headaches as well, hands, feet and leg tingling (across the shoulders too), and the ears!! Pain and fullness in them everyday...I also have chronic neck, back, joint and muscular pain. Having said that, I do still feel that I have improved as at least I can walk without severe restriction and pain even though I do still have a limp. I keep hoping that some of this stuff will still resolve over time and that is still an option for you as many, many others have told me it took up to two years for them to fully reap the benefits of surgery.
Some of the things I don`t feel are going to get better..that is why I have gone back to my DR for blood work to look for other things...I`m still waiting on that one. What type of blood work have you had done..have they looked for inflammatory auto immune conditions? From the pain you describe it definitely sounds like you have inflammation issues.

Have you had any MRI's recently? The one a month after may have been ok but things can change b/w then and now. That is why my NS said there was no point in having one till 6 months unless I was experiencing serious issues b/c it can take that long to show if things are going to become blocked again.

It is so hard to say why we experience what we do...I know it makes you very uneasy when no one really knows what is causing your pain. I'm am so sorry that you are only 16 and having to deal with so much. If anything comes up in my own experience that might be able to help you...I will certainly share. Hopefully, having a new DR..he will keep probing and get to the bottom of it. Try and keep your chin up, I know it's hard but try and have faith that they will figure it out.

Carolyn

[chadry]

HI Molly,
I was hoping you would get some answers seeing Dr.Campbell. I am sorry you are still feeling so bad. Is there anything at all they can do to help you feel better? Are they thinking you may need another surgery or anything along those lines? We were just there on the 9th for my daughter to see him. We were going to tell him we are ready to do the surgery when they decided to try some medication first to see if some of the symptoms improve. She may be getting some kind of migraines also. It is an antihistamine type medication and so far we are keeping our fingers crossed because her headaches have decreased.
I really hope you get some answers as to what is going on and you know we are all here to listen to you. Everyone gets days when they feel especially low. You have been through a lot. I know this rainy weather can not be helping much either. I am keeping you in my thoughts and prayers.
Take care.
Christina

[soccero]

Srry I could not fit anymore in that box. Dr Campbell has run countless tests ranging from. Blood work to spinal taps to mris.  Nothing comes up. So what am I sopose to do? I can't live like this anymore I get sick all the time since my immune system is low from fighting constant pain. Srry for being so down I am just at my witts end with no end in sight.
Molly