Update Kwalker

[kwalker0004]

I haven't been on in awhile, so I thought I would stop by and let everyone know how I was doing. I am doing good as a whole. I have been working hard a few projects and I will be starting school again this fall hopefully finishing at least one of my degrees.

Here recently I have been taking less and less meds to help with my stomach problems. The doctors think the meds are giving me a ulcer. So I decided to try to live life with no meds unless I have a headache that is to painful to deal with. It ***** that I am living basically med free but I am trying my best to over come the urge to do it.

I try to ride my horse but only on good days. So at least he gets exercised. He wants to jump and since I trust him I allow another to jump him for me. He is such a gentle animal. I am glad that I haven't given in and sold him yet. I just don't think I could do that to my horse. I am hoping one day I will be able to ride him like I use to, I am not giving up on hope for that.

On another note, my pcp thinks it time for surgery. He seems to agree with the neurosurgeon in Baltimore. He thinks my symptoms are getting a lot worse. He is afraid I will regret this decision. but I don't understand when there is no csf obstruction nor a shrinx in the spine. The only reason they have both given is that my brain is swelling and is pinching two of my main nerves between my brain and skull. The other reason that they are expressing their opinion on me is that my brain stem is getting more of a curve in it then it showed in my original mri. So I am stuck and considering surgery. Though I was schedule for the end of this summer I had to cancel due to family problems and now I think I regret it. I really was on board with it. But now I am second guessing myself all over again. So I am stuck and hopefully with in the next few days I will have a definitive answer to rather post pone it for another year or to go ahead and schedule it once again before the year ends.

I know I have been rambling on. I really missed this community especially when you guys are a huge support system. I hope to get back on here often. Like I once was. Well I just wanted to give you guys an update on me. I am heading to bed. Night Night.

[selmaS]

  Keeping you in my prayers that all works out well <3

[kwalker0004]

My step daughter will be having her gallbladder removed as she has gall stones. But since hers was schedule before mine I went ahead and canceled my surgery so I could be here for her. But that was before my doctor got the recent image results hence the urgency to have surgery.

I will try to get them to join the forum. My fiancé has been to all my appointments as he really isn't tech savvy as I am. So he knows what is going on but my sister has done her own research on this condition and knows only what is going on with me through facebook.

I might have to meet up with some. Maybe it will give me more of a support system or so I don't feel like I am going in this alone. I just hope for my sake that everyone can get along. I really hope so anyways.

I am glad to have Dr. H as my doctor. I am glad I didn't settle for a second rated doctor. Dr. H has been putting me and my fears first for a year. Even though he has many other patients. He takes the time to actually see and understand my fears on the surgery he also has been trying to help me with my anxiety. So I am glad about that he jokes that I am his most worried patient he has ever seen. But he understands that I never had a broken bone, a single stitch, or a simple procedure as minor as having a tooth pulled. So he understands the many questions I have asked him over the year. And I am glad he has never brushed off any of my concerns. He seemed surprised that my brothers have had many procedures done but I have had none. But it just seems scary that this is a new aspect of my life. We must experience hospital life at least once in our lives. Lol. well thanks Selma for understanding, I enoy this community. and I pray I will get the understanding from my family soon.

[selmaS]

  Dr H is a wonderful Dr... I have heard him talk on Chiari and he is amazing.

I can relate to not knowing if you will have the support you need....it took time b4 my husband understood and was going to my Dr appointments with me....but it was a long time....and he did all his own research....and just having him made it easier...my daughter was away at college and I had her support regardless but she was not home....

My parents and sisters just did not get it....so, I relied on this forum for support and to know I am not alone in this....

Have those that will care for you join this forum....we can help explain what to expect and what you may go thru.....

  What surgery will your step daughter be having....?

  BTW- we do have members living in MD maybe you can meet up? I know having someone close that has the same thing can be a great help.

[kwalker0004]

I am not concerned as much as I once was. I am pretty cofindent in my doctor. Dr. H from Baltimore. He has rolled out all related conditions. So I am glad about that. He has been working with me for a year now. He understands where I am coming from and he wasn't pushing me towards surgery until now. Which I understand the reasoning why he is doing it. It just ***** that it has to come at a time where there has been so much drama in my family lately.

No one really understands this issue. The pain and the suffering we face. I am afraid of having a no support system when I go in and when I come out. My family is all wrapped up in there own lives to really go to any of my appointments and learn what is going on. And what both surgeries are going to mean for me. They will never completely understand until they attend on of my appointments with me.

I understand each of my family member have other things going on and some wont come until surgery is going to happen. But those are the ones who will be taking care of me afterwards since my boyfriend will be back to work by then. But I think they should know at least a little bit before then. SO they know what to expect. it seems like they wont know everything to know after the surgery and after speaking to the doctor for like 30 minutes. I will be out of it I am sure, So I wont be able to do much. I just hope they will take it serious and understand everything about this.

I am not concerned really about the outcome of the surgery. I am sure I will be ok with that. I just wonder with my step daughter having surgery the same week who will be there for me. Will the man I love be there for me when he knows his daughter is going through surgery? I wouldn't want him to choose but I don't want to feel like I am secpnd to everyone else in his family, especially when I have put him above my own family. Which has been easy for me when I only reconnected with them in 2007. So it stinks, but I guess that is something I will have to deal with on my own. I will never make him choice between his own daughter and me but it is frustrating sometimes. And we cant have the surgeries at the same hospital but its all good. I will just have to put my trust in gods hands and pray that everything will go alright.

I have you guys in my corner and that's all I need. I really cant wait to until trigger and I can ride together. I think that is one of the main reasons I have chosen to do it once again. Maybe they will choose a later date so we can both be there for my step daughters surgery and her recovery. Then to go to my surgery. So he doesn't have to chose. But we will see when the official date is.

[selmaS]

  Hi...I know ans understand your reasons for not wanting this surgery no one wakes one day and says I want a major surgery.....it is scary and no guarantees on the outcome.

The problem is, avoiding surgery can create as many problems as having surgery can..that is with the wrong Dr....

A kink in the brain stem is not something you want and can be more of an issue then an obstruction to CSF flow....

I don't know who your Dr is/was...but make sure you have ALL related conditions ruled out and do look up kinked brain stem issues...blocked CSF can be a big reason to have surgery as we want to prevent a syrinx forming...but when you have the brain stem compromised it is even more important to address the issue.....not all that require surgery will have a CSF flow issue....but it is more common then what you are dealing with.

If you wait too long you might not get that chance to ride like you would like......you might not be able to ride at all.....so do get more info or another opinion....but do not ignore surgery because you just do not want it.....sometimes we do not have a choice....I am not trying to tell you what to do, but inform you on the consequences of not having it if in fact your situation is as you mentioned.....the brain stem  compressed can cause you to stop breathing....which is why a syrinx is so damaging....it compresses the spinal cord and brain stem too .

No worries about rambling on....you need to voice your concerns and fears to be able to address them in a way that is best for you...which is why I  state facts and try not to sugar coat my reply....

I pray all goes well which ever you decide....and know we are here for you. <3