306307 tn?1317053518

Been a while since I posted, surgery made me worse.

It i has been a month or more since I posted on here, mainly because it hurts my head and neck something awful to sit at a computer, so I am going to have to try and hurry with this cause it already is hurting me enough..As some of yall know from my previous post I had surgery January 4, 2011 and I feel worse now then I did before surgery! I had a surgeon that didnt like me, I believe it was cause I told him I hurt more after the surgery and that I felt worse rather then better. He let me know, he did nothing wrong! (You would have to read my prior post) I filed for my disability back in October I think, and was denied. I have since got a lawyer and pray to God I get it! Has anyone else had any luck getting disability with Chiari? I have other issues as well..Fibro, anxiety, post traumatic stress disorder, tmj, sinus tachycardia, and etc..The chiari and symptoms from chiari being the worst..

I have done nothing but hurt  and feel bad since surgery. I have an appointment with a neurologist at UAB in B'ham, Alabama on March 6th, since my surgeon decided he no longer wanted to be my doctor anymore! I live about 4 hours away (Mobile, Alabama)..This while ordeal has been awful to me..I felt bad before surgery but thought I'd feel some better, but no! I see a pain specialist now, I actually go back to him on Monday..He has me on oxycodone 10mg and oxycontin 40mg time released and phenergan. (and I hate pills, but I have to take these)
Physical therapy has been coming but they have used up what visits insurance would pay for and occupational therapy only has 2 more visits, which is ok, they havent helped me much because I hurt and cant do alot. Some of my family and friends seem to think I dont really hurt like I do, I wish they could feel what I feel for a few minutes. Don't get me wrong, I have semi good days, but not a day with out pain! My balance was not good before surgery but now it is worse. I walk holding on to something or someone. My neck feels like it is on fire sometimes. The pressure in the back of my head is also worse, especially when I stand. I still have the sharp pains behind my eyes and the constant ringing in my ears.  My neck and shoulders hurt tremendously. And of course, the chronic headaces/migraines. I told all my surgeon this after the surgery and he did not want to listen to me, and here I was crying and hurting. I am NOT looking for sympathy, just sharing my experience. I have other symptoms but I can't sit here to long. Anyone have any ideas I should tell this other doctor when I go? I am afraid of what my surgeon has told him since he was the one who had to refer me to him..All I want is to feel better and live a somewhat normal life! And YES, I know I could have it worse, people tell me this, and I know it is true, but it doesn't lessen my problems and pain. I am blessed and still thankful for everyday. I hope I am making sense as I am trying to hurrry and type this. Any help is appreciated. Has anyone of yall got disability? And any questions I should ask this doctor on March 6th? Please anyone that knows respond, I kinda feel desperate for answers. I tired of feeling rotten all the time. I want to be able to enjoy life.  Thank y'all in advance.
3 Responses
Avatar universal
I haven't had surgery yet so I can't answer what to do with the doctors other than make sure they listen. I won disability based on my hand. Although it's not based on Chiari the best suggestion is to get the lawyer and emphasize the fact that you actually had the decompression surgery (I'm guessing that's what you had). If you don't have surgery they don't believe your disabled. Crazy huh. I've been repeatedly told there are worse people out there, but all I can say to those that tell me that is that it's worse now because they have more understanding people (ok I didn't say that but I did say that they have more programs more help).
620923 tn?1452915648

  Hi...I have been wondering about u as r a few members, not sure how this post slipped passed me...sorry.

As for ur NS releasing u, many do at this point, if they feel u do not need further surgery they will no longer be ur Dr...we view them as our chiari dr, but this is only up to a point,, and that is post surgery when the incision is healed...and the MRI is ok...they r out of our lives. So we all need a well informed PCP and NL to help us post op as the Chiari care is non existent.

I do not recall if u have a full spine MRI to rule out a syrinx in the thoracic and lumbar spine....but if u did and were clear, then u may need to see if scar tissue is forming.

  I would also like to know what other symptoms u r dealing with as it may shed light as to what may be the issue.

  As for SSID I have yet to apply as I was denied 2x's for LTD and wanted to get a few other dx's confirmed and treated to help my case.

    Some do develop IH post op and that could be part of what u r dealing with, but again, not sure as I do not know all ur issues post op.

This is not something the Dr sis wrong, just something that happens and there is no reason or rhyme to it to know who may develop it.

  Did u have a post op MRI?

1306714 tn?1327257080
I feel so bad for you for not feeling better, but I can say through my experience I felt the same way as you are right now after surgery.  It help's getting reasurrance from other's on here because it did help me to get back up and try to get stronger.  We didn't get Chairi in a day and it will take longer to heal from surgery.  I'm really upset about your NS.  I was blessed and still am with a NS who listen's.  I have went to him after surgery for it will be 2 yrs in June so he keeps a pretty good eye on me.  I hope the other Dr. will work better for you.  As for disablity I did finally apply in June and 2011 and I also was denied people said this is excepted because there ae so many people who are trying for it.  I did go to a lawyer and he appealed my case and I received a letter stating it can take up to 20 mths to get a hearing in front of a judge.  I also have fibro, had 4 surgeries, 3 with brain and other simple conditions.  He states my case looks good so we will see.  Just don''t stop fighting.  As I tell people I worked for 33 yrs and I'm not ashamed to try to receive it.  Ecspecially with Chairi and have finally admitted to my self I can no longer work.  Just keep being persistant with both sisuations because you deserve the best for yourself.  Just don't give up.  Keep up the fight.  I pray today is a better day for you.  I know what a struggle it is to have bad day's, but after having my surgery 17 mths ago I can tell you it does get better.  Just keep resting.  
Have a blessed day
Linda :)
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