Chiari Malformation Community
Recovery
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Recovery

Hi everyone and happy new year! I was decompressed (with duroplastly, but not laminectomy) on 12/21/12. The surgery was much more extensive than they thought as the herniation was greater than what my MRI showed and my cerebral tonsils were not pulsating at all which I guess is very rare and potentially dangerous. I only had to stay 2 days in the hospital though!

Anyways, so far I have had no complications (minus the vomiting from the anesthesia, which I knew would happen and the stomach issues from the pain meds) and I have started to wean down the pain meds already! I was just wanting to give everyone an update and ask how people's recoveries have gone in the past. I am 19 so I am guessing this has helped me recover quicker.

I have my follow up appointment on Monday and i am going to talk to my NS about testing for tethered cord and ehlers-danlos syndrome. Does anybody have any advice as to what I should bring up about either my recovery or testing for these two conditions? Also how long did you wait before getting a hair cut post surgery?

Thank you for your responses :)
Hoping everyone has a fantastic New Years,
Sara
Tags: Recovery
9 Comments Post a Comment
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620923_tn?1393294254

  Hi thanks for the update....did ur Dr say y no laminectomy?...and what type of patch? Finding out about EDS post op is not really the best way to do so, but better to know.....

I waited almost a full yr b4 I got my hair cut....it all depends on how long it is and if u have a style...I wanted longer hair for my DD's wedding so I left it grow back until it was even....

Many of us do have a journal of our experience from surgery on our profile page...feel free to read mine....
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4489852_tn?1375757551
Thank you again for all of your help!

He just said that the laminectomy was not necessary. I will ask more questions at my two week follow up. Everything was so blurred in the hospital that I do not really recall exactly what he said. Is it uncommon fo drs not do this part of the procedure? He used my peristenium tissue for the patch, which had to be larger than expected from what I gather.

Why should EDS be diagnosed pre surgery? Sorry for so many questions but there is just so much information that I am feeling overwhelmed right now!
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620923_tn?1393294254

  Those with EDS have a higher risk of rejection of a foreign material so if  a patch made from a cadaver, bovine , ,or synthetic it may cause rejection and infection with leaks....so best to know b4 hand to help avoid those issues...and many with EDS tend to have excess CSF build up post op too...so, as I said good to know going in what might be a side effect and how best to avoid it.

So ur Dr will/has harvested tissue from u...I had this done it was my pericardium.,....scalp....I have EDS and did not have a leak or ne of those issues.

Sounds like ur tonsils were wide as well as a tad long....and just getting them out of the way may have given enuff room for the CSF to flow again...some of us need more room and this is y a laminectomy is done.,
It is not uncommon to feel over whelmed....try and relax....
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4489852_tn?1375757551
Yes he used my scalp tissue as well, maybe I just used the wrong word for it... I have done so much research since the surgery that I wish I would have done before it! At least I do not have to worry about the rejection! Thanks for the information :)
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620923_tn?1393294254

  No worries...good luck on ur NS visit : )
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4489852_tn?1375757551
Thanks again for the information and support.

I was so overwhelmed with everything that I forgot to ask about the laminectomy, I will have to remember at my 8 week appointment on March 4.

Everything with my incision looks great, it is healing well and my stitches should start to dissolve/ fall out very shortly! He is a little concerned because I have had headaches, dizziness, and no appetite for a few days now, but he thinks it is just a virus and because of the major trauma to that area i am feeling it more in my head than the rest of my body. He checked for fluid and everything looks normal so he is not worried about a CSF leakage.

He is going to do an MRI of my cervical spine to check everything post decompression as well as do a lumbar MRI to check for tethered cord. There is no reason why he would need to do a thoracic MRI is there?

The part that is overwhelming to me is that he did a blood pressure/ heart rate test while I was laying down, sitting, and standing. He found that my blood pressure drops drastically (almost 15 points) and my heart rate goes up even more (almost 30 points) when I go from a lying position to a standing position. The resident called this "very significant'. I did not get to talk to my NS about this as he was very busy and only the resident came back in, but the resident said I do not need further testing and to just stay hydrated. I do not agree with this and think that I need to find a dysautonomia specialist and get tested for POTS and other dysautonomic disorders? Does this make sense or do you guys think that I should just wait and see how I recover from the PFD?
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620923_tn?1393294254

  Getting tested for POTS will most likely be the next step from the SX u mentioned....I would also wonder about EDS too....I always remind people to have this ruled out.

Even for those of us with congenital Chiari we get the same type of response from Drs that r not aware how these issues affect us and that more testing is needed.

I am at a loss is this the Dr that Did the surgery?
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4489852_tn?1375757551
Sorry for the confusion. Yes this is the NS that did the surgery, but since he is at Loyola University Hospital in Chicago, which is a big teaching hospital, he has a ton of resident doctors! His resident was the one who blew off the test results, I think I will find a specialist and do the POTS testing. I think the results just confirm what I have been trying to tell doctors for almost 4 years. It is a bit frustrating working with so many different doctors/ resident doctors, but over all I have been very please with this NS. I just wish he could have spent more time with me today!

I was so overwhelmed with the tests he did today I forgot about EDS, but I will address that in the next visit in the beginning of March.
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620923_tn?1393294254

  I know we can get rushed in some visits and sometimes they throw us off with info we do not expect.....

Good idea to go to a diff Dr for POTS testing....it may help u get these Drs to listen once u have some results.

U can also find a Dr that may know more about EDS and go there as well.....
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