Post Chiari Surgery.

[kammi256]

Hi All!  I've never posted here before. But I read through all the time and you all are so much help and supportive. I am 3 months post-op and having concerns. First I am doing pretty good except for head flushing with dizziness at times. And this awful cold flashing thing at times drives me crazy. I have been going for pt 2 times a week was ok. This week though after doing some physical things to strengthen legs and shoulders I felt like I was so week and would just fall over. I have had this feeling a fees times since surgery but usually pt was good. I'm so frustrated. Can before period cycle make things worse(I'm 49).  So probably some menopause thrown in here too. One minute I feel like I'm moving forward then I feel like I fell backwards??  Thanks for listening!!!  

[kammi256]

Thanks Selma!  You've helped me much!!  :)

[selmaS]

  Something else to consider....TMJD can be a symptom of Ehlers-Danlos.

Also netime u have surgery it is a trauma to the entire body, and could be y a weaker area flared up.

I hope ur friend joins us here....it is helpful to talk to others in the same situation. : )

[kammi256]

Thanks Selma. I will definitely pass along that info to my friend. He is very nervous so any advice because of his EDS will be appreciated.

It's so bizarre that t 3 months Post-op I have more pain in my neck and face than 2 weeks ago. So frustrating. But I see what your saying about some symptoms coming back during healing.

I also should mention that I had jaw reconstruction also was wired shut fit 6 weeks and all. So my face pain is probably due to that surgery also. I'm hoping my friend fairs better as far as tmj pain.

You know it took 5 years for a doctor to realize I had chiari and all the pain I was having was not just because of tmj and that jaw surgery.  I most have told them over and over there s something else wrong with me   I'm not just having panic attacks. Etc.

:)

[selmaS]

  The EDSers also can have issues with pain meds and stitches not holding so, ur friend should make her surgeon aware and make sure he takes precautions to help avoid issues.


Slowing down is a good idea...it just may be too much too soon.

[kammi256]

Hi Selma,  it's so nice to hear that you have made improvements,,  I hope that continues for you!  
Yes the Dr did say we are all different and will recover at our own pace. I guess the up and own of it confuses me. But I'm trying to remember a good day will follow. The next exercises do help me also.  I'm gonna tell the PT tech that we should slow down a bit. Like you said I don't want another surgery.
Yeah we are checking for POTS. Hopefully it's just part of the recovery process though.  
I have a friend who has EDS and they are having jaw reconstruction surgery this summer. I will remind them that it will be a slow recovery and healing,  

:).

[selmaS]

  I am going on 4 yrs post op and I can see how I have had improvements from  the 2 yr to 3 yr post op, so it continues far beyond the expected time most Drs put on it...tho I am slower to heal, it still gives u an idea that there is no set time and that u will continue to improve.....

What u do now can also affect it....I did my neck exercises those were given to me by my NS and a PT while still in the hospital...and I can tell it helped me with the way the muscle healed....my ROM is better then I ever had, and my neck feels stronger if u know what I mean....

I always had ow BP.....and if urs changes when u change position ur Dr should do a tilt table test and see if u have POTS.

I am sure u will learn patience....just tell urself that if u push and do not wait u may have to go thru another surgery, not wanting that, u will find it easier to wait : )

[kammi256]

Hi Selma. Thanks for your input. The pt techs do know about chiari but I don't think it's understood how slow the healing process can be. Even I am struggling with that. I guess over doing it could be especially on tough weather days also.
My blood pressure is also still fluctuating, mostly real low. And some days I can't drink enough fluids. So you are right I do need to slow up.

I just had my follow up cine mri but won't have the results til the 30th. That will help when I know for sure how things look. The NS said it would be a long recovery 6 months to a year.  He's already called me his impatient patient. Yeah that's me.

[selmaS]

Hi and welcome to the Chiari forum.

It is important that the PT tech knows about Chiari and does not have u doing things so soon post op that involve ur neck, certain things can cause issues.
Plus u r at the time frame when many symptoms may return PT or not...it is part of the healing process....

I am sure ur monthly cycle could play havoc with symptoms but it can be where u r in the healing process and nothing more...or u could be over doing it...u have to look at what u do daily and see .....

I was a few months b4 I turned 50 when I had surgery, and as I said I do have related issues like EDS that cause me to heal slower...

We all heal at diff rates, but with the 3 month point u r at I would not be too concerned unless u get worse while not doing much.