Just an Update

I know I havent been on but I have been seeing doctors like crazy. Well i have seen many NS an they all say that they dont know if surgery will help me well ok thats fine but im miserable!!! I made an appt to see Dr Bejjine in Pittsburgh I have been see another NS at UPMC in Pittsburgh but I just want one more opinion my husband said no one is going to help me so why bother an Im starting to feel the same way but I've read alot of good things about him. I have been sent to the UPMC headache clinic for my chiari headaches and I'm on 100 mg of zonigrine and so far its not helping. Maybe I just want a fix and Im expecting to much. Maybe I should just give up cause I truley feel like giving up and just suffering.

Alicia

[*Stormy*]

Hello Alicia..

I was told by my NS too that they didn't know if surgery would help me but would just stop the progression. At the point I was, I didn't even care, I just had to do something rather then watch myself continue to go downhill. Sounds like you are in that same position. So my question to you is, if you are willing to have the surgery, will one of these NS do it for you? If so, then I would go for it, if your quality of life is being affected, well then you have to take the chance that surgery will help. If you can't find a NS that will do anything at this point, then I would keep looking until you find one that will....like Ray said, keep fighting.

In my experience, I got a lot more than they expected. At very best, they thought I would see some relief from the headaches...but I got that plus a lot of improvement in my legs (which they didn't think would happen). There are definitely a lot of symptoms still here and I am dealing with chronic pain issues...but I still consider it close to a miracle!!

Don't give up...I felt like it many times...and I never would have made it to where I am now.

Carolyn

[rod44]

Hi Alice,, I can identify with your frustration but I also know you cant give up.If you are in pain it is not to much to expect to get some relief, unfortunately Doctors cant feel our pain, if they did I think they would be more willing to help.
Keep fighting your corner :)


Ray

[Alicia696]

Hi Ray, thanks for the kind words, that really helps. I just feel so alone in  this (an i no we all do). But you put a smile on my face that needed to be there!!!

Alicia

[rod44]

Glad to help. I know that even my family dont understand most of the time, that is why it is good to have here to vent.

Ray

[denverluv]

Don't give up!  No one will fight for you except you. It seems like alot of us have had to go to alot of different doctors or keep going back to our doctor before they finally do something. There is no point in suffering if you can get help! :) Do you have Chiari? The people on here that really know this stuff would tell you to make sure you see a Chiari specialist. If you haven't been diagnosed with Chiari you can send your MRI to a Chiari specialist who can look at your films for a fee and tell you. There are others on here who know more on this and I know they will be answering you. But please, don't give up!

[*Stormy*]

Hello Alicia..

I was told by my NS too that they didn't know if surgery would help me but would just stop the progression. At the point I was, I didn't even care, I just had to do something rather then watch myself continue to go downhill. Sounds like you are in that same position. So my question to you is, if you are willing to have the surgery, will one of these NS do it for you? If so, then I would go for it, if your quality of life is being affected, well then you have to take the chance that surgery will help. If you can't find a NS that will do anything at this point, then I would keep looking until you find one that will....like Ray said, keep fighting.

In my experience, I got a lot more than they expected. At very best, they thought I would see some relief from the headaches...but I got that plus a lot of improvement in my legs (which they didn't think would happen). There are definitely a lot of symptoms still here and I am dealing with chronic pain issues...but I still consider it close to a miracle!!

Don't give up...I felt like it many times...and I never would have made it to where I am now.

Carolyn

[shanmomof3]

Hi Alicia, Do Not give up!!! Although i know exactly how you feel! I had dr after dr tell me it wasn't chiari or that surgery would not help me, that is until i saw dr. Heffez. He could not tell me what would be better and what wouldn't but he felt that i would have some improvement and actually i have more than either of us hoped for! :~) My surgery was almost 2 weeks ago and i knew there was major improvement the first time they got me up to walk in the hospital! Just dont give up! And if you are not comfortable with a dr get another opinion even if its the 4th or 5th, but the most important thing is to make sure your dr is a chiari specialist! Good luck and Blessings ~ Shannon

[Alicia696]

Thank you all of you, yes I do have chiari but its 5 mm and I dont know if they feel like it isnt big enough the NS said that the headache clinic is my last hope before he'd do surgery. Im gald they dont rush into things but ive done all the headache meds and so far they dont help. So we'll see Im just so very tired of being sick headaches dizziness weakness balance issues concentration problems and the list goes on. And it doesnt help that my husband isnt supportive. Im glad that u all care!!!!

Thanks again sooooo very much!!!!
Alicia

[selmaS]

Hi...u said u went to  Dr Bejjani? or made an appointment and u haven't seen him yet?

I am sure u know there is no cure, no real fix...even tho we want it.
However, there is a way to see if the progression can be slowed down and possibly help how we feel.

Size of the herniation is not the determining factor as to who had surgery...it is CSF blockage and overcrowding and symptoms.....

Did u have a CINE MRI?...full spinal MRI's?

I am sure ur DH is supportive of u, but it can be hard to know how far to push when the drs u have seen do not understand ....so do give ur DH some room for error as he is only going by what he is hearing from the drs u have seen. Have him come on here.....I am sure he will learn much more.

Good luck
"selma"

[denverluv]

LOL- I told you the "experts" would answer you- :) aren't they great?!

[*Stormy*]

You will be one b4 you know it...LOL...that's what happened to me (not that I REALLY think I am an expert..lol)

[Alicia696]

Yes they are great!!! ;) Thanks everyone!!!

Alicia