Just had to drop by and say hello :) I am finally feeling like life is "normal" I am celebrating that I feel like me again and it has been a very long haul. When you come to this board you are looking for answers to questions about Chiari and when you have surgery you expect to have just the one and then it will all be over! I ended up with four head surgeries, and five shunt related surgeries! My head is now NOT leaking and the shunt has been removed! I have now been diagnosed with EDS hypermobility and hyperadrenic POTS. It has been a really long 3+ years but after feeling so well in the past six weeks, I am thinking that just maybe I am good to go now! I am on some meds for things but they seem to have found the right dose with few side effects but really help me. I am so happy to finally be able to come to this site and say I am feeling great! Just improving my strength now and hopefully it will be a long long time before I need to do anything like this again! Life is good!
Thanks so much!!! I have been afraid to say things were great, seemed like every time I thought I was good that the next thing went wrong! Today I thought it had been long enough and that I can celebrate now! :) My goal will be to say "I am happy I made the choice to have surgery".... perhaps I can say it soon but I just went through so much that I don't quite feel ready for that yet :) LOL I do have many fewer headaches and they are nothing compared to what I had before so my guess is that I will be happy to have gone through all of this but it was still really hard! Hugs to both of you, all the support has been so greatly appreciated!!!
Thanks, I guess I should state my "new normal". :) I guess you are right, when you have things like this you are really not sure what normal even means. The good thing is that I really don't believe anyone is normal so you just have to find your own normal. After such difficult three years, I am very happy to be given the days that I have now! I understand fully that it is freaky pre-surgery to hear stories like mine but at least it can prepare you for the possibilities! I knew I had things going on but didn't know EDS or POTS and had I known this first I may have avoided the past three years! I had complications because they did not harvest my own tissue for the patch and my head did NOT like the synthetic bovine crap at all... I asked for using my tissue but they did not listen but now that I have the diagnosis I would have known not to allow anything else! Maybe I would have still had complications but maybe not! I never expected three years of complications and issues but I have answers now and hopefully people can learn from my story and find out BEFORE surgery what they might need :) -zygy
I have basically been begging docs to rule out EDS but because I'm not visibly hyper flexible, they won't. Still waiting for consult with specialist. Maybe he will be will to do such a difficult test **major sarcasm**.
Viva001- EDS and POTS made things much harder for me and YES YES YES, they should be doing testing or at least listen to someone's fears. The EDS 3 diagnosis is not a genetic test yet so it is a strange one to get! I just wanted to be treated with "caution" because I knew things went wrong for me. Just using my own tissue would have been wonderful but because I had no diagnosis they just wouldn't listen to my complaint that things always went wrong with me! Now they believe me but it is too late!
Lifesvr7- My EDS hypermobility really came from having my daughter looked at by pediatric genetics, once she got the diagnosis plus they knew my history they gave me the diagnosis. IT was NOT that I am still that flexible. I have loose joints and they do comment on that but nothing compared to when I was a teenager, I remember doing all the wacky things she does but now I am older (41) and don't move the same :) With just the fear of EDS and possible complications they should want to proceed with caution! I highly suggest that you find a specialist for Chiari that has heard of EDS and POTS and any other related conditions that you think might apply to you! For me I just hate knowing I asked for my own tissue for the patch and I gave in when I felt pressured by the NS to just use the bovine that was "SAFE" It was NOT for me, three years of crap and one of my head surgeries was EMERGENCY after arriving by ambulance and losing abilities quickly... my spinal fluid was drilling a hole in my cerebellum... it was not fun! I will never give in again with a Dr. just because I think they are smart... they don't know me! -zygy
I agree. I feel like the regular docs expect me to be a contortionist. As a child, I could put my legs behind my head and do all kinds of other things but my body is so broken and painful now it's just not going to happen lol. I literally feel my joints shifting and things that they shouldn't be doing and won't get surgery until someone trained does the proper testing.
I did the Beighten scale on myself and didn't get the 5/9. It seems a lot of it looks at your arms and fingers and those are not that flexible. This may sound weird, but I feel like my internal joints are the ones that have issues. My hips, sacroiliac joints, shoulders, etc. I feel them partially dislocating like the tendons or ligaments aren't doing their job. Going to be hard to get EDS Dx without high enough Beighton scale. Ill still ask the professionals to look into it, but unless they can test the joints they can't see, not sure EDS is the issue. There has to be something. I just have to figure out what lol
I am glad you feel great. That is always something good to hear. I know it took a long road but the results is worth it. I know I don't regret the surgery. My syptoms (symptoms) I was passing off as age and just dealing with them. So this has been going on for several years. It does make you feel ike normal or like you said your normal. Congrats again.
I am so happy for you. Keep enjoying life, but I think we will always be protective of ourselves. I know I do because I had 4 surgeries also and it's a long haul. It felt so good to go out side even if I had to set on the ground, but I did some raking in my garden. Felt like Heaven to me. Blessing to you.
:) I agree, just being outside and doing some weeding has been magical! I am hoping that with time I am less nervous about "weird" things and headaches. Everything strange usually meant I had another big problem so sometimes I feel jumpy but I feel like every day this gets better and I feel more and more relaxed. I don't ever care for anyone to go into my head again :) LOL I think being protective of ourselves will continue, things like no roller coasters is FINE FINE FINE with me if that means I stay feeling good :) Hope you keeping feeling better and stronger too! All this warmer weather and sunshine should help :)
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