Aa
surgery??? one week and scared
one week I will be having surgery (unless I change my mind) and really really scared. I know everyone is different but I know the risks are the same for everyone so my question is....is any of them life threatening? never been so scared in my life. what is the recovery time just to do normal things like doing light cleaning. please anyone that's had the surgery let me know your results. im more scared of being paralyzed or having a heart attack or stroke. I know I sound like a baby but its serious and its reality. please help
Hello! I have to apologize in advance for what might end up just being a be a long, boring, annoyingly repetitive, uninformative, pointless post. But, I write in HOPES of being some kind of help/if I can be of some ease for you. I apologize if it's scattered&of no help-I don't seem to be able to write cohesively these days. :/
I'm just barely over 3weeks post-op. Nothing would've ever made me NOT scared of this surgery. But, I was ready in the sense that finally, I'd had enough.My symptoms were not allowing me a life,I wasn't "living" life. So, in that sense I was ready.By not doing the surgery, things were only going to get worse&possibly cause irreversible damage.
I was beyond scared! Right up to the point that they zonked me out. I'd seen(read)some horror, the stories where people ended up worse than pre-decompression, etc. (probably all that you've seen&read). And yes,this is a risky surgery,no doubt. But one BIG key is your surgeon! Make sure you're not just comfortable with him, but that you completely trust him w/this specific surgery. I was blunt w/ my Neurosurgeon (I "interviewed" 3, which each were very familiar w/Chiari,but the one I decided upon, I questioned more). I told him I was going to ask questions that questioned his own expertise, even given his experience w/this surgery.
Point being, KNOW & TRUST your surgeon. I went back to him a handful of times w/ more questions before the surgery.By the time of surgery, I'd a kind of personal relationship w/him.He knew a lot about me,he knew my family..I needed feel like I wasn't just "another operation". And I felt far from that by the time I went into surgery. I felt certain under his care.
As for the surgery itself,I was scared about all those big "risks".I was also scared about what would seem like petty things like throwing up (like a serious fear I have in life generally!) as well as what happens in ICU,how bad will the pain be(as I've a low-pain threshold&high tolerance of pain meds.(I'd been on pain meds prior to surgery due to such neck pain-some days, I would be laid up for 8hrs. due to immobilizing neck pain),so pain control was a worry of mine (but I discussed this w/ NS before surgery &the anesthesiologist the day before surgery-my hospital did a kind of "walk through" the day before surgery-as though I was having a baby.I met the staff-a few of which were with me day of surgery),allllll kinds of worries. And I know there is NOTHING I can say that will make you feel ok or not scared.It's scary! You've a right to be scared. But please, if you need to have this surgery just remind yourself of that & go through w/it. There comes a point- where I was-that I knew it needed to be done.
My post-op, immediately after surgery, I don't remember much...except it was a shockingly strange pain but I felt like I was in some alternate reality-brief in&outs-as I think they kept kinda knocking me out. I do recall a blip of being quite non-compliant during a post-op CT they did immediately after surgery... :/ I don't remember anything after that in the "recovery", where I apparently was talking to my mom.Nope, don't recall a bit of that. Nothing until ICU. ICU does go by slowly.I was in&out of sleep non-stop. I'd wake up,thinking I'd slept for 5 hrs &they'd say it's been 1/2 an hour. I just remember every time I thought I'd get into a sleep,I'd wake to vitals, a light flashed in my eyes, more blood work.Always something&given lots of pain meds&nausea meds given. But time went so very slow-even though I was likely never fully/truly "awake".
Then in the step down Neuro.ward, it was much easier..less intense. But pain was certainly an issue. They figured out that certain pain meds, might've been causing migraines...so they changed that one particular med. and sure enough, the intense (couldn't open eyes, total hardcore migraine looking back on it)head pain diminished. Then I felt the expected pain...surgical head pain. (I never did throw up btw. I recall feeling nauseous in ICU, but between meds. to prevent&w/time, the nausea was not even an issue) It was hard to manage my pain and the only regret is that I left the hospital before the pain was managed for a full 24hrs. w/what would be the oral @home meds.
I did not experience any horror stories. I won't tell you it's a breeze. But, today, I'm SO glad I did it- eventhough I'm still in early stages of the full recovery, I'm SO entirely glad it's done! I think the risks that scare us, while real, are low. Such severe complications are likely very low considering that I think there are WAY more "Horror Stories" written online than the good stories. I truly believe that&I believe you will be fine!!!If you're@ a point where surgery is needed- I know you won't regret it.
I went through all the horrible possibilities(the worst outcomes)in my head before the surgery, yet here I am, not toooo bad. The only "complications"/ issues I'm having is that I did leave the hospital too soon-before my pain was at least below a 7/10. I wish I'd refused to leave until I was at @least a 5/10. I know that we can't get out of this pain free, but managed is good. Personally, my advice to you would seriously be to not leave the hospital until you're on the oral meds you'll be taking@ home for a full 24hrs. to see that your pain is effectively managed. Again,we can't be pain FREE, but managed is the key.
Before I left the hospital, I'd already developed a "Big Squishy",as I named it. It was a large fluid filled mound to the right of my incision. Quite a few Neurosurgeon's looked at it- did another CT & they said it was collected fluids, possibly a small CSF leak, but that it was actually nothing to worry about...they said to keep an eye on it, have me a list of things to watch for regarding this "Big Squishy" ( and other things to watch for)..For which it has now migrated down towards the base of my skull, (it had been towards the crown of head, which is where he said he lifted the area to obtain my own tissue for the Dura Patch...he said it could be a little CSF & fluids filling the space from which he took that tissue)& is no longer squishy-it's a hard lump. It hurts&feels heavy,but I'm not finding any of the"watch for"things, so I'm hoping my body will absorb it,as they said.
ANY concern you have, address it until you feel 100% certain you understand. Make sure you get some kind of LITTLE exercises that you can do to prevent neck stiffness&scar tissue as it will already be stiff. I'm a lil' wobbly yes. Make sure someone is around to help you so you don't have to do house stuff&can help you w/food,getting a bath/shower set-up, so many things you don't realize you need help with
I don't know if any of this was of ANY help.It may have not been what you were looking for....a loooong story. But, while yes, there can be complications, but I think the most common one is s CSF leaks/infections&yea, those suck, but even if that were to happen to me (as I know that can still happen 2mo.out from surgery, i also think it's very preventable if you go slow with your recovery¬ push yourself),I now feel like I could deal w/ it. I was stronger than I thought&made it through the surgery&I made it past a 3week post-op now. And while no, it's not some easy peasy deal, I think you'll realize your stronger than you thought!
I'll shut up now. Again, I don't know if this helps you at all! I apologize for such a full story w/details that were likely unnecessary&repetitive. And...that it's SO long.
I hope that if you're @ the point you need to do this surgery, you'll go through with it. Trust me-I don't know if I could've been more scared! But, I did it, I'm here¬hing SO damaging to me. And I'm SO glad I went through with it,already. Despite the recovery that is rough... Patience is the hardest part I think.
All the best, please keep us updated on your surgery!
(So sorry I wrote SO much)
I'm just barely over 3weeks post-op. Nothing would've ever made me NOT scared of this surgery. But, I was ready in the sense that finally, I'd had enough.My symptoms were not allowing me a life,I wasn't "living" life. So, in that sense I was ready.By not doing the surgery, things were only going to get worse&possibly cause irreversible damage.
I was beyond scared! Right up to the point that they zonked me out. I'd seen(read)some horror, the stories where people ended up worse than pre-decompression, etc. (probably all that you've seen&read). And yes,this is a risky surgery,no doubt. But one BIG key is your surgeon! Make sure you're not just comfortable with him, but that you completely trust him w/this specific surgery. I was blunt w/ my Neurosurgeon (I "interviewed" 3, which each were very familiar w/Chiari,but the one I decided upon, I questioned more). I told him I was going to ask questions that questioned his own expertise, even given his experience w/this surgery.
Point being, KNOW & TRUST your surgeon. I went back to him a handful of times w/ more questions before the surgery.By the time of surgery, I'd a kind of personal relationship w/him.He knew a lot about me,he knew my family..I needed feel like I wasn't just "another operation". And I felt far from that by the time I went into surgery. I felt certain under his care.
As for the surgery itself,I was scared about all those big "risks".I was also scared about what would seem like petty things like throwing up (like a serious fear I have in life generally!) as well as what happens in ICU,how bad will the pain be(as I've a low-pain threshold&high tolerance of pain meds.(I'd been on pain meds prior to surgery due to such neck pain-some days, I would be laid up for 8hrs. due to immobilizing neck pain),so pain control was a worry of mine (but I discussed this w/ NS before surgery &the anesthesiologist the day before surgery-my hospital did a kind of "walk through" the day before surgery-as though I was having a baby.I met the staff-a few of which were with me day of surgery),allllll kinds of worries. And I know there is NOTHING I can say that will make you feel ok or not scared.It's scary! You've a right to be scared. But please, if you need to have this surgery just remind yourself of that & go through w/it. There comes a point- where I was-that I knew it needed to be done.
My post-op, immediately after surgery, I don't remember much...except it was a shockingly strange pain but I felt like I was in some alternate reality-brief in&outs-as I think they kept kinda knocking me out. I do recall a blip of being quite non-compliant during a post-op CT they did immediately after surgery... :/ I don't remember anything after that in the "recovery", where I apparently was talking to my mom.Nope, don't recall a bit of that. Nothing until ICU. ICU does go by slowly.I was in&out of sleep non-stop. I'd wake up,thinking I'd slept for 5 hrs &they'd say it's been 1/2 an hour. I just remember every time I thought I'd get into a sleep,I'd wake to vitals, a light flashed in my eyes, more blood work.Always something&given lots of pain meds&nausea meds given. But time went so very slow-even though I was likely never fully/truly "awake".
Then in the step down Neuro.ward, it was much easier..less intense. But pain was certainly an issue. They figured out that certain pain meds, might've been causing migraines...so they changed that one particular med. and sure enough, the intense (couldn't open eyes, total hardcore migraine looking back on it)head pain diminished. Then I felt the expected pain...surgical head pain. (I never did throw up btw. I recall feeling nauseous in ICU, but between meds. to prevent&w/time, the nausea was not even an issue) It was hard to manage my pain and the only regret is that I left the hospital before the pain was managed for a full 24hrs. w/what would be the oral @home meds.
I did not experience any horror stories. I won't tell you it's a breeze. But, today, I'm SO glad I did it- eventhough I'm still in early stages of the full recovery, I'm SO entirely glad it's done! I think the risks that scare us, while real, are low. Such severe complications are likely very low considering that I think there are WAY more "Horror Stories" written online than the good stories. I truly believe that&I believe you will be fine!!!If you're@ a point where surgery is needed- I know you won't regret it.
I went through all the horrible possibilities(the worst outcomes)in my head before the surgery, yet here I am, not toooo bad. The only "complications"/ issues I'm having is that I did leave the hospital too soon-before my pain was at least below a 7/10. I wish I'd refused to leave until I was at @least a 5/10. I know that we can't get out of this pain free, but managed is good. Personally, my advice to you would seriously be to not leave the hospital until you're on the oral meds you'll be taking@ home for a full 24hrs. to see that your pain is effectively managed. Again,we can't be pain FREE, but managed is the key.
Before I left the hospital, I'd already developed a "Big Squishy",as I named it. It was a large fluid filled mound to the right of my incision. Quite a few Neurosurgeon's looked at it- did another CT & they said it was collected fluids, possibly a small CSF leak, but that it was actually nothing to worry about...they said to keep an eye on it, have me a list of things to watch for regarding this "Big Squishy" ( and other things to watch for)..For which it has now migrated down towards the base of my skull, (it had been towards the crown of head, which is where he said he lifted the area to obtain my own tissue for the Dura Patch...he said it could be a little CSF & fluids filling the space from which he took that tissue)& is no longer squishy-it's a hard lump. It hurts&feels heavy,but I'm not finding any of the"watch for"things, so I'm hoping my body will absorb it,as they said.
ANY concern you have, address it until you feel 100% certain you understand. Make sure you get some kind of LITTLE exercises that you can do to prevent neck stiffness&scar tissue as it will already be stiff. I'm a lil' wobbly yes. Make sure someone is around to help you so you don't have to do house stuff&can help you w/food,getting a bath/shower set-up, so many things you don't realize you need help with
I don't know if any of this was of ANY help.It may have not been what you were looking for....a loooong story. But, while yes, there can be complications, but I think the most common one is s CSF leaks/infections&yea, those suck, but even if that were to happen to me (as I know that can still happen 2mo.out from surgery, i also think it's very preventable if you go slow with your recovery¬ push yourself),I now feel like I could deal w/ it. I was stronger than I thought&made it through the surgery&I made it past a 3week post-op now. And while no, it's not some easy peasy deal, I think you'll realize your stronger than you thought!
I'll shut up now. Again, I don't know if this helps you at all! I apologize for such a full story w/details that were likely unnecessary&repetitive. And...that it's SO long.
I hope that if you're @ the point you need to do this surgery, you'll go through with it. Trust me-I don't know if I could've been more scared! But, I did it, I'm here¬hing SO damaging to me. And I'm SO glad I went through with it,already. Despite the recovery that is rough... Patience is the hardest part I think.
All the best, please keep us updated on your surgery!
(So sorry I wrote SO much)
Challenger don't second guess your surgery unless you don't feel comfortable with your doctor. Then get second opinion. Don't put it off as I have several times. Its not the wise choice to do so. I am very scared of all surgeries as I have never had a stitch, broken bone, a sprain, nor a tooth pulled. So I am scared. And I let this get the best of me several times. And I think I messed up. But we will see. Best of luck for you.
It's very normal to be afraid of this surgery. It's a major thing you are about to go through. But just remember the reasons you are doing it. The pain and misery were always at my side reminding me of why I was so ready to take that step! I didn't get too nervous until the morning of but for me it was short lived. I felt at peace knowing I was doing this for my own benefit and hopes of a better quality of life. You are strong enough to do this too!
Good luck and I'll be praying for you
Good luck and I'll be praying for you
COMMUNITY LEADER
I too had leg pains and issues as long as I can remember....surgery has helped with those issues for me.....
Leg pains can be considered to be related to EDS as well as Chiari....some are mis-DX'd with fibro as I was.....and the falling issues I had as well.....one such fall left me with injuries that required surgery...and one of my surgeons pushed for more testing and my Chiari was finally found.
Weight gain can be due to an auto immune condition called Hashimoto's thyroiditis....a typical thyroid test looking at TSH may give an all clear or normal results...but this being an auto immune requres more testing of the free T3, Free T4 and TPO antibodies along with TSH and even an ultra sound of the thyroid.
We are prone to not only auto immune conditions but connective tissue disorders too....so do make sure they are ruled out for you as it will help with your healing.
good luck on your surgery. I will pray for you! Please keep us posted on your progress.
I have had issues with my legs for sometime. I realize im getting older and my body will hurt. my legs have been hurting for about 10 yrs. they hurt
and are always feeling like they are extremely tight in my calf area. they feel weak and feel like I lose all feeling and I buckle and fall. I get Charlie horses in my calfs and foot. no one can put any pressure on any part of my legs because they are so tender and sore. other symptoms I am having are headaches, arm weakness, knee pain and some fluid or inflammation. I must have some balance issues bc I fall quite a bit. I have had 3 back surgeries already. was diagnosed with CM about 2 months ago. I have gained about 20 lbs over last 6 months. I do not eat a lot. more like a mouse. lately I have not been able to eat much bc after two bites I am full. just had an upper done and says it looks nice and healthy
inside my belly. im also having some issues with trying to have a conversation without fighting for words. I toss and turn at night bc my legs hurt so much doc wanted to do a mri on my legs but insurance wont approve it. already had xray and ultrasound. showed nothing. I just wanted to make sure my symptoms were not something else going on before having surgery for CM.
THANKS FOR YOUR REPLYS. Appreciate it so much.
and are always feeling like they are extremely tight in my calf area. they feel weak and feel like I lose all feeling and I buckle and fall. I get Charlie horses in my calfs and foot. no one can put any pressure on any part of my legs because they are so tender and sore. other symptoms I am having are headaches, arm weakness, knee pain and some fluid or inflammation. I must have some balance issues bc I fall quite a bit. I have had 3 back surgeries already. was diagnosed with CM about 2 months ago. I have gained about 20 lbs over last 6 months. I do not eat a lot. more like a mouse. lately I have not been able to eat much bc after two bites I am full. just had an upper done and says it looks nice and healthy
inside my belly. im also having some issues with trying to have a conversation without fighting for words. I toss and turn at night bc my legs hurt so much doc wanted to do a mri on my legs but insurance wont approve it. already had xray and ultrasound. showed nothing. I just wanted to make sure my symptoms were not something else going on before having surgery for CM.
THANKS FOR YOUR REPLYS. Appreciate it so much.
COMMUNITY LEADER
Hi and welcome to the Chiari forum,
I had surgery 6 yrs ago and I would do it all over again if I needed to....and I was scared too. And I feel it is normal to be scared, if you weren't I would be worried for you....but you should have some confidence in your Drs....
When I was rolled into the OR I wanted to shout "WAIT"...but in talking with the anesthesiologist I was comforted by how kind he was and I remembered all I went thru to get to this point....I knew I was not getting better with out surgery and no surgery could mean the same out come I was afraid of with it....so I had to trust my Drs....
This forum also helped.....we have Prayer Threads where the members can send positive thoughts and prayers to those heading into surgery....post your surgery date on that thread so you have all of us pulling for you too.
AS for housework...let it go...do not even think about it...this is where we are all different and some feel great post op and bcuz they do they start doing "little" house hold chores and end u with set backs......so do nor rush back into doing things...and do not listen to Drs that give you a time line to get back to this or that....we need to listen to our bodies..
Do you know if you have any related conditions?
Wishing you all the best...do keep us posted.
I'm having surgery in 3 weeks and I am also very scared and nervous regarding the outcome. I don't think it would be normal not to be scared. I think as long as you have an experienced chiari specialist that has done many surgeries then you are in safe hands. I am seeing a well known specialist and not once has anyone died from surgery with him, so that's a relief. There is a small chance of stroke, very small, and he did say that they made a complete recovery. Your doctor should have gone over all the risks with you already. Has he or she? I was told to have someone at home with me at all times if possible for the first 2-3 weeks after I get home from the hospital and as for activity, just walking. No cleaning or anything for a while, not sure how long. Let others take care of you and your family if possible. I'm sure we will both get specific instructions when we are discharged.
I just wanted to let you know you are not alone in freaking out right now. I am right there with you. My symptoms aren't even as bad as they've been over the last year right now so I always question maybe they will just go away completely. Then I think that the reason my symptoms aren't that bad is because I am doing next to nothing, when I used to be extremely active and physical. So, that is why I am having the surgery, whenever I try and do more I get worse. I want to be able to play with my kids again and run around with them, heck, to even be able to lie flat while sleeping without waking up with an increase in symptoms. This condition is so strange.
Good luck with your surgery. I'm sure other members will post regarding their post surgical instructions. I'm curious to hear as well.
I just wanted to let you know you are not alone in freaking out right now. I am right there with you. My symptoms aren't even as bad as they've been over the last year right now so I always question maybe they will just go away completely. Then I think that the reason my symptoms aren't that bad is because I am doing next to nothing, when I used to be extremely active and physical. So, that is why I am having the surgery, whenever I try and do more I get worse. I want to be able to play with my kids again and run around with them, heck, to even be able to lie flat while sleeping without waking up with an increase in symptoms. This condition is so strange.
Good luck with your surgery. I'm sure other members will post regarding their post surgical instructions. I'm curious to hear as well.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
