What can I do to make my recovery from decompression surgery as smooth as possible?

[AmberV1021]

Hi fellow Chiarians, I'm Amber. My headaches started when I was 7 years old. They have been a part of my weekly, sometimes daily, routine since 3rd grade: go to school/work(now), get an afternoon headache, come home, and hope it wears off with time, ibuprofen, sleep, water, what have you. The other issues were soon to follow. I don't need to go on with the list of symptoms with you all, as I'm sure you're more than familiar with them. I grew up thinking migraines and headaches were interchangeable terms, but that was until I experienced my first migraine freshman year of high school. I now know that people who have never had a full-blown migraine will never understand how debilitating they are. Long story short, the first trip to the neurologist (Oct 2011) showed low-lying cerebellar tonsils 4-5mm on the MRI and an observation of mild scoliosis. A conservative approach of medicine and "cutting caffeine" was suggested, and things were better for a while. Trading caffeine in for water did help with regular dehydration problems, but Topomax was only a temporary band-aid. Now, 4 & ½ years after the first neurologist and 15 years after the symptoms surfaced, a neurosurgeon has been contacted and new MRI has taken place. I now show protrusion 12mm below the Foramen magnum, a syrinx in the cervical region, and possible formation of a second syrinx in the upper thoracic zone. Long story short, "THE surgery" has been scheduled for just under one month from now. I am so relieved to be given the hope of decreasing my symptoms after years of being written off as a hypochondriac or one who complains too quickly...all the while insisting that I've been experiencing widespread pain in so many ways and only being able to come up with "I don't KNOW why" as my best response. Needless to say, I am also terrified. I have researched outcomes- good and bad. My goal isn't to scare myself to the point of backing out of surgery, but to fully prepare myself as best I can.

So, here's the real reason I'm here: What should I expect???

I don't want to have any rude awakenings or ugly surprises I wish I'd knew to expect. While everyone is different and all the planning in the world won't perfectly predict how my procedure and recovery will go, I still want to hear from people who've done this firsthand.

Anyway, If anyone who's gone through the process has any tips, advice, warnings, what have you... Please send them my way. Anything from prepping for surgery the weeks beforehand, things to do the morning of, what waking up from surgery is like, pain management, the hospital stay, going home, getting back to work...anything!! Comments here or personal inbox messages are welcome. Thank you all for taking the time to read another's story and I wish you all the best with your own battle!

[selmaS]

  I was also DX'd with IBS....not sure what the exact name of it is....as it does not follow  the description of IBS.....not for me anyway.

Do keep us posted on a surgery date and if you want a Prayer thread posted, list your date in the list your surgery date 2016.....

Good luck <3

[AmberV1021]

Wow, I am sorry to hear everything you've suffered with. I am glad to hear you've made some life changing improvements such as your ROM, though! I do have those problems. I was told I just had your run-of-the-mill IBS, until I learned it could be related to my neurological issues. I am fortunate to say I have found a very excellent neurosurgeon with whom I feel extremely comfortable with. He is so very thorough and every extra test or imaging he orders "just to be sure" makes me feel even more confident about moving forward with the procedure.  Thank you so much for your help and your hope!

[selmaS]

  Yes Amber, a thoracic and lumbar spine MRI should be done as well as a CINE MRI to check for an obstruction to CSF flow.

Each condition has different methods to diagnose....for EDS they can do a physical exam to see how you rate on the Beighton scale....and a few things can be done via question for EDS.....if you bruise easily ,slow to heal, have soft skin, stretchy skin, blue sclara,.....most people do not have all the symptoms, but will have quite a few in addition to being hypermobile(beighton scale) and there are different types of EDS and some need to have a biopsy to rule out the vascular type.

My ROM was really bad b4 surgery and now is better then I ever had ...and I was in a MVA as well....but never had good ROM.

Validation of a diagnosis is great isn't it.....but unfortunately the frustration continues.....
Do you have bowel or bladder issues, or low back pain and or leg issues?

In  a Drs office it is best to take someone with you and a list of questions as we all get that "deer in headlights" reaction to what the Dr is saying.....

I was diagnosed with tethered cord,bulging disks, stenosis.EDS, CCI, retroflexed odontoid,...I did not require a shunt, I did have my dura opened and bcuz I do have EDS my NS harvested tissue from my scalp to use as my dura patch.

[selmaS]

  Hi AmberV1021 and welcome to the Chiari forum.

I had surgery, and have no regrets. My surgery was done in May of  '09 and I have continued to see benefits over all this time......each year I feel better and stronger.

I was 48 when I had my surgery and I also have related conditions that have caused slow healing......and other issues but knowing about all of them B4 surgery is one way to have a smooth one for sure. And having a true Chiari specialist is another,

Do you know if you have any other related conditions other then Syringomyelia?

What to expect can differ person to person depending on what other conditions you may have.

The best advice I can give you is to not expect to get back to "normal" life too soon...allow your body to heal and take it slow no matter how good you do feel post op...rushing things can cause set backs.

Know it is possible to continue to have symptoms post op and surgery is to restore CSF flow and slow progressions of Syringomyelia.

Take it One day at a time and you will do well.

Also post your surgery date in the list your surgery date 2016 thread for a prayer thread to be posted for you.

Wishing you all the best <3

Oh and it is "normal" to be scared....I was.

[AmberV1021]

SelmaA, thanks so much for your reply. I actually think I have seen you advising others to explore all additional related conditions on other threads on here as well. From what I have researched, I highly suspect EDS in addition to Chiari and Syringomyelia, though I have no diagnosis. A doctor has referred to my ability to involuntarily move my left hip i and out of socket as a "hip clunk" with no further concern. In the past 5 years or so both hips have begun to pop somewhat regularly as well as my toes and ankles. I've been diagnosed with "bilateral chronic shoulder instability" too, with no answer as to why I would have this, besides a suspected labral tear. My right shoulder will pop occasionally and my left shoulder will pop/crack so loud it sounds like a bullwhip. People have turned their heads from three rows ahead of me in a lecture hall before from hearing it snap. It does this a handful of times a day. I have wondered about I have wondered about osteoarthritis, but these are just the mechanical issues. There are "sensation" issues too. My feet are slightly numb/tingly as we speak because I've been sitting at my desk for too long. I will have the "foot fell asleep" feeling all up my legs and into my groin even. Also I will get random unpredicted "jabs" in my lower back. They mostly occur when I am sitting but will occasionally happen while walking if on a bad day. My shoulders get sudden jolts of what feel like electric shocks. It will happen in both shoulders. Not nearly as often as the shoulder pops, though. The jolts will make me drop what I'm doing and almost let out a yelp when they occur, but though they are extremely painful, they last for 10 seconds at the most and then I am fine. I mostly think these are due to the syringomyelia in the cord, though I obviously don't have the medical training to say this with certainty. Tethered spinal cord also concerns me a lot, considering many of these conditions seem to all have overlapping symptoms. Of the symptoms I just listed, I have categorized most of them as my unknown/misc. sysmptoms. There are certain symptoms I have that I feel confident are caused (partially or in part) by the chiari. These include the headaches, migraines, diziness, lightheadedness, vision problems, feeling like i "have a headache in my neck", etc. I can see the shooting arm pains being related to the syringomyelia and possibly some of the lower body numbness? I'm just not sure if this is the case or if a tethered cord could be causing some of these issues or possibly EDS (especially relating to the crazy joints). How are these conditions confirmed? MRI? Poking and prodding around? I had a recent MRI of my head and neck about 4 months ago (the MRI that showed the syrinx(es) and current 12mm herniated tonsils), but it was only of my cervical spine. Should I consider a full thoracic and lumbar MRI as well? I'm assuming these are all concerns to bring to my neurosurgeon, though I am starting to question whether I will actually stick with him or find a different one for the procedure. I'm seeing another neuro surgeon tomorrow and I guess I could express to him every single symptom and my curiosity about any other potential diagnoses. I also known that my car wreck three years ago is affecting my pain. That makes it difficult to distinguish between whiplash issues and chiari/syringo./whatever else issues. My neck has been tight since then and I've heard that post-surgery ROM stretches are vital, so I wonder if I am at a disadvantage since my ROM is already poor prior to surgery because of the wreck. When I first started learning about Chiari a few years ago, it seemed like the best day of my life because I felt as though I finally knew WHY I've had so much pain and so many seemingly random health issues my entire life. It was nice to match a condition to my stmptoms, but  my most recent research has shown me even within the Chiari umbrella there are many factors and additional diagnoses that can result in different symptoms. And then there's the simple fact that Chiari doesn't affect each body in one single way either. I know you all can relate to the overwhelming amount of symptoms and wanting to know exactly where they're coming from and why, and that's why I know I've come to the right place. My fear now is that my need for decompression/duraplasty because of Chiari/Syringomyelia could only be a portion of my issues and that
1) the others get untreated
2) My surgery is done in a way not suited/prepared for other diagnoses and unexpected complications arise either during or after surgery.

It is easy to get all of these thoughts out online because I can type away and continually add things as I think of them...When in the doctor's office with somewhat limited time and apprehension of sounding like a hypochondriac, it's difficult to get everything out there. Even worse, there's always the potential reaction of not being taken seriously. SelmaS, you poor thing, at this point you've ended up as the receiver of my 5-page novel purely because you were nice enough to respond to me. I don't mean to direct all of my concerns onto you nor do I expect you to consider all of this your responsibility lol. I guess a more attainable thing to ask of you would be, did you have any other diagnoses going into your surgery? Did you have the dura opened? Shunts? EDS or other spinal cord issues?

I am happy to hear that you have no regrets from your surgery and that you are constantly getting better!! It is so good to hear someone's success story. I 100% congratulate you and hope you continue to improve every day! :)

[AmberV1021]

Thank you so much for your quick and supportive reply! I am glad you mentioned the potential for stiffness and the importance of strengthening exercises after surgery. This worries me because I have had a great deal of stiffness since a car wreck about three years ago. I will definitely make this a point I bring up with my surgeon while I'm hashing out all of my questions for him prior to the procedure. I did have a good feeling reaching out to support communities would provide me with more great topics to discuss with my surgeon, and you've already proven that to be true! My surgery is on 3/22/16...just over 3 weeks from now!! I appreciate your support and willingness to wear purple to support a fellow Chiari person. Thank you so much for welcoming me to the group!

[kwalker0004]

Hi, though I have yet to have the surgery not due to not being able to, but out of the fear of this being my first surgery ever in 28 almost 29 years. I understand your symptoms and your worries. I have been battling headaches/ migraines since I have been 15. and just got diagnosed in my twenties.
But as you said everyone handles surgery/healing differently. Do as little as you can once you have had your surgery seems to be the key in healing. Don't think that surgery is a cure. It isn't. The whole purpose of it is to alleviate the CSF blockage and help getting it flowing again. There is no cure for it. Its a life long disease we have. Another thing is give yourself time to heal. Everyone handles this differently. Make sure you do your daily exercises to help your neck muscles from getting stiff. I can only imagine if they get stiff they will cause you problems. Don't expect yourself to be completely healed in a certain amount of time. As many of the people here will let you know their healing took a lot more time instead of the time there doctor gave them.
Best of luck on your journey. Please keep us informed and allow us to know when your surgery is. We are a support community and though we may not be there with you, we will show we support you with wearing purple on that day.