Relief ~ fellow chiarian ~ NL

[Rahe28]

Hi there everyone. I hope this message finds you all feeling your best. I went to my NL appt today with Dr Walsh's partner and I went in expecting the worse and hoping for the best. well, I came out way  ahead of what I could have imagined. I waited for nearly 2 hours which is unusual for this office, but due to the flooding, appointments had to be moved and the neurology clinic was moved into the NS clinic where Dr walsh is. Well, how convenient for me. I signed in and sat down next to a woman who just seemed to be such a pleasent person. I quickly found myself chatting with the woman only to discover that her daughter was sitting across from us and that she was there to see Dr Walsh, whom she seemed fond of, so I asked what for in a manner that would allow her the option not to answer only to find out that her daughter sitting 3 feet from me is a fellow chiarian !!!!! In a matter of seconds Margy was in my arms hugging me. Neither of us had ever met a fellow chiarian in person. It was quite enlightening and so wonderful to meet someone who KNEW!!! Her and her mother are both lovely people. I couldn't imagine having my first surgfery when I was 5 and another at 10. She was there today for her 1 year check up from her 2nd surgery. She is doing well and speaks highly of Dr Walsh as well. Anyway, onto the appt. Dr. Shamsania was well worth the wait . He understands chiari in DEEP detail and presented me info that I have never read nor heard and wehn realizng the depth of my surgery and details of...he welcomed my educated brain :) He explained that I am simply healing and the pain I am feeling is nerve damage that he believes will cease with time, but insisted that he be my primary Dr along side Dr walsh for the next year. He quickly found a way to take me off of the meds that I don;t need anymore and replace them with more suitable long term meds inccluding pain meds. He made sure that he checked every reflex.....btw I actually have reflexes now !!!! He also said that my musculoskeltal system is much stronger than it was and is even more than he expected for only being 7 weeks post op today. He said he will actively work with me to manage whatever symptoms I may run across, and find the best way to treat me as I heal. He also said that I am doing  extremely well in his book because most people that lose feeling in their legs don't get it back after surgery so he is very intrigued twith me...lol.I would much rather intrigue the Dr and be his "study case" than be ignored . I also spoke with Dr walsh and his nurse only to find that they really never recieved my messages. THere were none in my file that they pulled and I was apologized to because when I did speak with them they thought that I had taken all of the meds and was wanting more instead of understanding that the whole prescription was not filled in the first place and that I just need a hard copy of the prescription that was already written. Anyway, never the less, I call today success. I really like my new NL Dr Shamsania....he really understood chiari and how much it hurts, both physically and mentally. He looked at me and said          you suffer from anxiety due to the pain scale don't you? I looked at him and said how do you know that and he said because I can see how much pain your in and your hands are shaking....he is doing a nerve study on me in a few weeks with another sleep study and  ordered new MRI's right away. Thanks to all of you who kept me sane while I was in so much pain. I feel so much better now that I have the right meds and a good team of DR's. Today was definitely a blessing. :)

[auntij2746]

Wow this is such wonderful news! I have been away from forums for a few days and catching up now.  I have tears in my eyes reading about your doctors app't.  This morning I found myself praying for all of my new chiari friends and you came to mind. I am so happy for you today!!  It is so great to see a post like yours - thanks so much for sharing :-)  I am trying to make the surgery decision and it has been so very difficult. Your note gives me hope.hugs.  June

[irislita]

wow finally I was so concerned...and so great u have a nl like this...I never met any close to this :-)) good luck and hope ur new pain management works.hugs

[DechenDolkar]

I am so happy to hear this! I have been thinking about you and hoping you would get the help you needed. This new doctor sounds wonderful. How comforting to know you have someone who will be there for you that really understands and cares. I also think it is so wonderful that you met that little girl! Wishing that everyday brings you more relief!

[Mazie1209]

SOOOOOOOOOOOO Happy for you!!!!! The nerve pain is something I am TERRIFIED of post op, as I dont feel the typical "pain" most chiarians do (infact I feel pretty well most days) and most think its becaue my syrinx has caused so much damage that I dont feel..
Thanks for the update. Was wondering how you were!
Mazie :)

[selmaS]

  It was just the lift u needed and we all prayed u would receive <3

[Rahe28]

It was truly  amazing to meet another chiarian. I have never felt  such a connection with a complete stranger as I did today. Without words being spoken we both "just knew". It was exhilerating to meet someone face to face that has been there. She was so young and all I could see was a positive litttle girl with strong core !

[selmaS]

  WOW this is GREAT!!!!  OMG u r sooooo lucky to have a Dr so interested in all of that and u....

[Rahe28]

THank you both so much. It has been a long time since I had  such a good day! I am intrigued with this "study case" thing as well. It seems like from what he said he currently has 25 patients with chiari in his care, and I am # 26, and by far the most interesting as he said. He said he has never met someone with chiari that had their cerebellum wrap around the brainstem. He was very intrigued with all of my symptoms pre-op  and asked me to compile a detailed list of triggers, reliefs, etc. So  that he could understand me better, so he can see where I was and help me get where I am need to be :)

[selmaS]

  Yeah Sheila !!!

I am soooo Happy for u...u met a chiarian, and got a new NL that understands and have a new pain treatment plan in place......

  So will u be the NL's study case?....sounds interesting.

  Thanks for the update filled with happy news : )

[linnielou232]

I'm so so happy for you and how well your appt went.  It does make a difference when someone listens and understands.  It sounds like they know there stuff and to meet someone else with Chairi is amazing I'm happy to hear this girl was able to meet you and talk with such a positive person.  You are a blessing and I'm sure your heading in the right direction.  Just wanted to say I appreciate you getting back on track with med's and everything went to well.  Blessings to you.
Linda :)