3 weeks post op but not for the Chiari but my symptoms are maybe

[xmelax35]

(This is going to be a little long) Hi everyone. It has been awhile since I last posted. A lot has happened. I am not going to go into it as no one really cares. Trust me, I know this for a fact just from facebook. Which just tells me that due to what happened, that if I would have died, they would not care in the least bit (maybe a few family members might) but tells me how many of those people really are my friends...almost zip.

Anyway, I will just tell you what I had surgery for and then tell you what I am experiencing now. I had a cervical disc fusion of C5-C7. He went in through the front.  I am still experiencing pain - I guess that is normal and one of the assistants tried to remind me that I am only 3 weeks out.  Well, the last 3 days I have been getting a HORRIBLE head pain on the right side. Just like I told the surgeons office: it is the right side of my nose area to behind my ear to the back of my head all right sided and then from a tiny part of my neck and the skull to the top of my head. Just the whole right side. It has been bad for the 3 days but increasingly bad each day. Today it woke me up. It was horrendous.  After I got off the phone with the doctors assistant (both assistants are so sweet), I got sick (literally it was awful and continuous for about 3 minutes it seemed). My incision looks okay to me - maybe a purple or black color. It does not seem to be leaking. I took my pain medication accordingly plus I took a treximet today along with it (I checked with the pharmacy first) and the pain lessened, but is still there.

Well, the doctor called me back and said to go to the ER when I could get a ride in the next day or 2, that way they can run all the tests needed, because it is not something that patients have reported as a symptom after surgery and not something that it usually causes - the head pain - the one sided face and back of head. I am going to go when my mother in law can take me or my husband either this evening or morning. I am watching ER wait times. I cannot sit in a chair at the ER in the waiting room for too long. So I want to go when not busy. However if it gets much worse, I can always take an ambulance to get in sooner.

Okay, here is what I am wondering. Now, of course seeing as though I have had 2 brains surgeries for the Chiari, I know that it is not curable. Everyone who has had it knows this. I am not an expert though and I will always have questions (plus my memory ***** bad). Some of you know that I had my cerebeller tonsils cut out - even though I specifically told that neuro I was afraid of it and didn't want it done. He did it anyway, because that is what he normally does with the surgery. So...even though I was told I should have no more problems (we all know that is not true with us - we will always have something going on with it - no cure of course). With the cerebellar tonsils out...what can happen still? What could be going on that I would have this excruciating pain in my head? If it is chiari related...how would the chiari be effecting this? Or rather a general question: if a person has them cut out, what problems can they further experience? Can't they still have the same exact issues as before? If they are cut out, they can't have a csf flow problem anymore, right? No more cerebellar tonsils so does that mean no more problems in that area? I am so confused, as I am still having issues...plus new issues I developed after the chiari surgery a few years ago.

Don't get me wrong, the cervical fusion I had 3 weeks ago is the first and only surgery (besides my hsyterectomy) that has actually helped with any symptoms. My left shoulder pain is gone so far!! It is so much better on that area. So I have hope that other issues can be taken care of (for instance my back) down the line. I am not in a hurry for that because of what happened to me in surgery though, right now.

Sorry this is so long. I had a lot to say. Sorry for all the questions in there. I just have so many. Thanks ahead of time.

[wonderchiari]

Hi
reg family  it happens everywhere I have heard so much the same stories from my friends too ... i have seen that even my family..... especially my mother seems to think and she always says that *you (meaning me) are very lazy* *you  are not interested in doing household things properly ..you are a  not fit  to be a woman  *.

I remember that she used to scold me a lot when I was young.,and lower ed my self esteem a lot.

I myself did not know the reason as to why I was branded like that...But honestly I never took that to heart ..Now when I think I just laugh .

it seems that she thought and even now thinks she is super good in e everything she does and both my brothers are also very good in all departments be it official or household .

But somehow she thinks I am not good in the household affairs and matching with them ...she keeps saying so.,after so many years of my marriage .

I really wish I could make her understand that I dont have the energy levels like that of my brothers and that could be because I have a condition called chiari .,where as her two sons might not have it .

But I never tell this because I love her a lot...somehow I cant disrepect her and say that she is not right in telling such things.I feel if she thinks so so be it..... But that wont affect my mind in any way.

That was just a sample as to how my own mother thinks like that .

However I always forgive people very easily , and just forget all things immediately and dont like to recollect it unless on occasions like the one..that  i am writing here .

I have cut down a lot of unnecessary talking with anyone .I dont expect my brothers to understand my problems neither do I ask them of their problems ....If they tell any of their problems I just hear  and say some *positive comforting  things* and leave it

.I dont tell them anything about my chiari condition because I know very well that they wont understand .,and they would just dismiss it as *piece of my imagination*.

my husband and DS  are supportive as best as they can .But even with them I dont expect any understanding or sympathy .

I always think as to why should they made to suffer mentally for something that is not theirs.Let them lead their own lives peacefully.

Inshort I have come to accept that I have  this condition for life time ... I have to bear it with patience myself.Even the closest of relatives cant help anything when it comes to understanding it.I need to be more adjustive mentally in not expecting too much from anyone because of my condition  .They have their own lives too and they cant always think of me.  

I have a few best  friends who are for life and with whom I can share the best and the worst without fear of being judged .

@selmaS reg funeral I have always seen that relatives shower praises after a person is gone where as in real life they would have never treated the person with respect .Most of them  put a false hypocrite face at the funeral .But once a person is gone he/she does not  care as to  who attends or who does not ?.In our country Even if someone forbids to a particular persons attending the funeral anyways  they would come atleast to avoid crticism and to  show to the world that they are related ..

[selmaS]

  I really wish you did not feel like that....I always use to think that way too about a handful of people at my funeral,....but what does that tell you about people......not much....they want to oogle you one last time and say how wonderful you look laying there?...seems a bit odd to me when I really think about it...what matters are those you deeply care about...I know family  can hurt us, but remember some people distance themselves when they are scared or uninformed....it is not always that they do not care, but that they do not know what to say or how to act....so it is easier to avoid a situation then feel awkward....

I have a sister who has a degree and it is not my family but her that tends to look down on me, and when I had just had surgery she was like  " we all can't sit home and do nothing" Like I never worked and like you I worked several jobs at one point and have worked since I was 11 ...and who do you think lent her money for part of her college degree...yup...still get crapped on...but that is her, and has nothing to do with who I am, or how smart I am...she is losing out being this way as your family is losing out on being with you.

Gather with your friends and have a wonderful Christmas event at your home...you will enjoy that more...and as the song goes "let it go" as all it will do is pull you down...let it go.

[xmelax35]

Selma, that is what the assistant said about maybe a nerve being pinched by the way the fusion was done. She also mentioned inflammation. I am going to go this weekend. As I move about or walk I can really feel the awful pain on the right side of my head. It is not gone. The meds (treximet and pain med) are helping a little but it is still there and just worse at times. Sitting or laying I still feel it. Thanks so much for the kind words.

Yes, I know about the people not caring. What hurt was not just my friends who I thought were pretty good friends (you really find out who your friends are) but my family. My family is who I was mainly upset about. Some I only have communication on facebook and others don't ever answer their phones. I have come to find out they don't care at all about me in the least because of other things. I am not good enough for them. I am the black sheep of the family. I've never been good enough. However, through my surgeries I've had they really show they don't care at all. 2 of them did but the rest did not.  Some of them, unless it is them, they don't care. I mean, if something happens to them they want to know others care, but yet they don't show they care about those people when something happens to them.  I have a couple of very good friends who live a state away that I used to live with and they sent me a private message showing they cared.  I can honestly say I think if I did die tomorrow or whenever my time is up, I would probably only have a small handful of people at the funeral. A lot of the so called friends I have are not really my friends and don't know why they even bothered to friend request me (I hardly friend requested any of them) as I was content with the 30 friends I had in the beginning of fb. I just don't know why they did friend me on there, because apparently some forget that we were once real friends and hung out together. Now they act like we were not and did not share any memories. It's like some of them are too good for me now. They all have fabulous lives and here I am nothing I guess. I saw someone posting how they work hard and others feel they are entitled to stuff. Well, I have never felt that I was entitled to anything. Long story but I think she was directing it toward me that time. What she apparently doesn't know is that until I got real sick I worked my rear off for years. Most of my adult working life I kept 2 jobs (until I was pregnant for my child). For a few years 2 of the jobs I had were almost both full time. I would work from 8 am until 10 or 11 pm depending on the day and 6 to 7 days a week depending on the week (I would work all weekends and the 2nd job which I would work weekends along with the week nights, I would a lot of times work doubles. So I had good paychecks and had to because I had an apartment and stuff to pay for. I worked hard and long hours. Yet, some of the people must think I never worked a day in my life. Trust me it is not just because of what I have seen these people post, but private messages they had with me as well...led me to believe it must have been about me.

Then I have my family who like I said I am not good enough for.  My sister who I love and it is not her fault, they love her more, but she has a degree and she has worked as a nurse for so many years. She has a good job. Right before the Christmas before last, she obtained another degree (she is working on her masters I think now). Well at xmas the family had a xmas party with just close family. My husband, my son and I went and not a word was said to us. I talked and they ignored me and him. They were eating when we came in and we were not told go get you some food or anything. I just took it upon myself to go ahead and load up. Well when she came in they were all like, "Oh there she is" "we are so happy to see you", "we are so proud of you", what can we get you" and they literally waited on her and got her food. Then they talked and talked to her. It was like we were not even in the room. I don't even know if they knew when we left. I decided to never go to another one again. I didn't go last Christmas.

[wonderchiari]

Hi

as far your feeling that no one cares., it is true... unless it affects someone personally ....no one really feels for others intensely  including close relatives ......might be except for rare compassionate souls like the forum  here.

.But you must be aware that we also need to know that at the end of the day everyone is an individual and no one is for anyone ...no matter how close they are..So dont feel much on such things.

I only wish to add add  that as you must be aware the present fast moving  world is already stressed for everyone .,further  they might have their own problems might not be health always...... but some other problems so much.... so that no one is really impacted by the amount of suffering others undergo. ....The world today is mostly very selfish.

The feeling of compassion and empathy towards others who suffer is not to be seen much.....anywhere.

anyways there are always exceptions and people who really care.,even if they are very few.

so please try to talk to  such people or try to develop contacts with such people  and be happy.  reg the rest selmaS has answered .  

best of luck.

[selmaS]

  Hi...I hope you know we do care here...and so sorry for all you have been thru.....I wish we had known and I would have posted a prayer thread for you more recent surgery....it does not have to be decompression surgery to get a thread....once you are a member here, we care about  you.....

I do not think your issues are bcuz of the tonsils being removed...if you have related conditions that were underlying and unknown it can appear that your surgery failed .....this is not always the case...since you had a fusion I suspect you have EDS and have CCI...this condition can cause many of the same symptoms as Chiari so it is difficult to know what may be the reason for how you are feeling....

You could develop scar tissue that could create a CSF obstruction....
The pain could be a nerve being pinched by the way the fusion was done...not saying it is, just that it is possible....

Did your Dr mention if you had a kinked brain stem or other impingments?

EDS alone can cause all sorts of pains....since you are only 3 weeks out of  surgery you still have inflammation and healing to get thru....it all takes time....rest up and keep in touch with your Drs....

Once you have been to the ER let us know what you find out.