Pain

[martha274]

I just had surgery on the 13th. When walking or moving aroung for about 45 mins,I feel  intolerable pain, and a warm, sensation in my lower back. I could barely stand it feels like my lower back has been beaten up. I did not have this before surgery. Any suggestions as to what could be wrong?

[martha274]

hi, thanks for the advice. i am worried, but have managed to just relax. i realized their is nothing i can do, but hope that god, will resolve the issue.
i saw my pcp yesturday, and he explained that its really a wait and see situation, as neuros hate to go back to surgery. he said, they probaly want to give it time, and then will probally try a blood patch, and surgery will be last resort.
for now ive just been resting. i find that i am ok when laying down. but i dont feel great overall, my neck feels full and i still have the bump that started on sunday. the first lump which is behind my incision appears just spread on the neck, but not as big, this one started on friday.

my ct stated that "a fluid collection in dirsal soft tissue at the surgical bed has increased in size since prior study, "currently 5.7 (craniocaudal) X 3.6 (AP) X 2.5 CM TRANSERVE. It also says theur is a thin rind of enhancement that is not suggestive of infection. Pseudomeningocele again canot be excluded.

my shoulders hurt somewhat when am laying down, as well as the upper portion of my back.
im still having the ocassional swelling on the back and sides of my scalp, it literally feels it shifts.
ill see doc, on monday, and im gonna ask what the plan is?
in the meantime, and just try to keep it easy! taking the dexamethasone, and volume when needed.
thank you so much for caring.
this forum is a true blessing!!!!!

[linnielou232]

Also wanted you to suggest to NS to get your sodium level's checked.  I had this problem also and if you are taking out more fluid's than what you are taking in this could be the cause.  Take care.

[linnielou232]

I don't want to scare you but I had a CSF leak that wouldn't heal so they had to go back in and find the leask 2 surgeries for this in all.  Before my 3rd surgery they had put in a lumbar drain and I layed there for 14 day's to see if it would stop.  Just after they stopped the drain my head filled up again.  So unfortunally they had to go in and repair.  As Selma said and my dr. told me this is highly unlikely for most patience.  He said he never seen this in the 30 yrs of doing this surgery, but my body was rejecting the stitches that were in the inside of the head.  Please lay and rest as much as possible.  This will help keeping the pressure in your head low.  I was told by my dr. to lay on a 25 percent incline so the fluid has a chance to flow down from the head.  All NS do thing's differently.  The best thing is to rest and try not to worry because it could make it worse.  My heart goes out to you because I know you don't want any set backs.  Just as I memntioned and Selma lot's of fluid and rest.  Keep us updated your in my prayerj's.  Erevything will work out for the best.  Just take care of yourself.

[selmaS]

I was 49 when I had my surgery...in '09....lol...thanks for thinking I was younger....but unfortunately I am not....u r closer to my DD's age.

There are pics of my DD's wedding on my profile page.

    "selma"

[martha274]

wow, how old are you? i thought you were a lot younger.
thats really really cool.
i am 29!

[selmaS]

  It seems it all depends on the Dr as to what they do and the timetable they follow...as I said when I had a leak I was told 5 days and if it was not resolved on it own, they would do a blood patch...mine resolved...so no patch was needed.

  I am doing ok, thanks for asking : )

I have one DD and she is 27 yrs old and married lives in NYC....and teaches dance.

  Thanks again for asking and do keep me posted on ur leak and how u r doing.
    
     "selma"

[martha274]

Well the first bump appeared on Friday, and the second Sunday. But according to doc, it's the same fluid collection I had jan 5 it just grew bigger.
I have to see him Monday. How long do u think they usually wait beer oing something about fluid?
Thank you Selma you always give the most honest answers. I appreciate that.
By the way how are you feeling? I apologize I feel like whenever I write it's o ask a question.  So how are you doing. I noticed on your page you a little girl. How old is she? I have three children, 7,6,4.

[selmaS]

  I would continue it while at home.....mine took 5 days to resolve.....and I was told if it wasn't by the 5th day they were going to do a blood patch, I woke that Am and was better, but, was sent home with that corset/belt and no lifting...

[martha274]

Thank. You Selma yeah while at hosp I was on bedrest

[selmaS]

  Hi...I was told with a leak, or possibility of a leak to lay flat..drink plenty of water to keep hydrated....

In fact, after my leak I was given an elasticized  belt that spanned from under my chest to my hips and I was to tighten it as much as I could...this was after the leak sealed itself....hmmmm...neway

Stay flat....not sure y u were not given these instructions. But it is what I was told, I was in the hospital and I was made to eat lying down...only got up to go to the bathroom.....my symptoms were much worse then urs,m so I am sure if u limit what u do and lay flat it may help u as well.


  Rest and let me know how u r doing

       "selma"

[martha274]

hey selma,
so im home!
while at the hosp i had my pcp call ns, so i could get some clarity as to what was happening. ns finally said that there was nothing to really do but manage the symptons.and he was condifent the leak, would resolve itself. however if this didnt happen there were some things they would try, before moving to surgery. so for now its wait and see. if i feel worse, or either lump gets bigger i have to go to er.
my nurses were great and explained that these leaks, or "fluid collection" as my ns called it occur when they dont close the area tight enough during surgery or its my bodies response to the patch. baissically what you said.
i guess ns didnt want to admit what was really happening.
i am jsut hoping this resolves it self.
i feel ok, but when i am sitting up or doing anythng but laying down, i feel uncomftorable. i feel the lump on my back and neck,it feels like my neck is connected to my back. i am still getting swelling my scalp, which started again on sunday, it was pretty bad. i had nausea, headache. this *****.
the nurse told me there was nothing that could really done to prevent this from worsening, she said it was just a wait and see. but for now try to rest, and activites as tolerated.
they put me on steroids for the inflamation, and nausea, they also gave me volume for the muscle spams and morphine for pain.
im praying this will go away,
i find that when im up, the lumps swell up or get bigger, but if am laying they tend to get smaller.
selma is there anything i can do to get better?

[selmaS]

  Well u r in the right place, but NS's change their tunes when a patient has a leak, they feel they failed and how could that be...not all leaks r due to failure of the NS...many times it is a rejection issue....so many tend to have EDS and this is an issue that can occur if u r not aware b4 surgery and the patch is one made of something other then their own skin......

  It is possible that ur leak will resolve on it's own...do drink plenty of water  and stay as flat as possible.

  Good luck and keep us posted when u can

           "selma"

[martha274]

Hey, I was admitted last night after I developed another lump on my upper back.catscan should csf leaf. My. Euo says its not that bad, and he thinks it's gonna go away on its on. M husband andi think the top lump looks bigger. I am frustrated at how calm the Neuro surgeon is. He said he seen bigger, csf lumps.
Ok. So what are thy gonna wait till it gets there. There keeping me for 24-48 hours for observation. Ang giving me volume and meds for pain and head swelling.
I hate that my Neuro surgeon is acting like this is no biggy. Should I ask for any other test, or are there any questions I should ask.
So frustrated

[martha274]

Hey, I was admitted last night after I developed another lump on my upper back.catscan should csf leaf. My. Euo says its not that bad, and he thinks it's gonna go away on its on. M husband andi think the top lump looks bigger. I am frustrated at how calm the Neuro surgeon is. He said he seen bigger, csf lumps.
Ok. So what are thy gonna wait till it gets there. There keeping me for 24-48 hours for observation. Ang giving me volume and meds for pain and head swelling.
I hate that my Neuro surgeon is acting like this is no biggy.
Are their any questions I should ask or test. I'm so frustrated.

[martha274]

thank you selma

[selmaS]

  Hi...this recovery takes a lot of patience on the part of the patient.....u need to proceed slowly as u heal slowly...even tho u may feel much better then b4, u can cause set backs if u try certain things too soon and y ur Dr is waiting on the PT,....the swelling inside and healing inside can take much longer in fact up to 2 yrs to heal completely...and u will continue to see changes and benefits during that time.....

I am not sure y he gave the time frame of 6 weeks unless that is a typical time frame for his patients to feel better.....

  Sit back, relax and allow urself to heal : )

[martha274]

hey guys!
saw nr yest he said that i would feel better in six weeks, told me that chiari, those cause neuro damage, this is way i am having the cognituve issues, and aphasia.he said he was going to send me for physical therapy, but not now.
i felt like he was really not telling me anything different. visting the dr. is beginning to feel like, i hear the same thing everytime.
i like the nr i think hes great, but i get the sense that he feels like this is just a lets wait and see illness.
so 6 weeks and i will feel a lot better hmm,

[martha274]

thank you selma!

[selmaS]

  Not sure what could be going on...I am sure ur NS will be better able to give u answers since he will be looking at the area.....

Outside of ICP or something like that, it just may be the healing process ......do post an update once u talk to the Dr.

    Good luck
      "selma"

[martha274]

Hey guys going to see the neuro tomorrow.
I am still having the swelling take place. It occurs in different parts of my head. Sometimes on the side but always on the back of the head. It feels like pressure, and when I touch it it feels like a lump, so areas feel hard and some feel soft.
Is this normal?
I will try to get the pillow linnielou, thanks.

[linnielou232]

I have a U pillow.  If you like to lay on your back on suggest yu get one.  I accidentally came across one at Walmart and it only cost 10.00 and I use it all the time.  Even when I sit in a chair.  It help's support your neck, but when laying down.  I like to lay on my back also and the back of your head fit's right in the hole of the U so you can lay more comfortably.  I am 16 post op, but I have alway's layed on my back.  Have you been dx'd with a CSF leak?  Is your back of your head swollen?  I had this and mine was a CSF leak.  If so you might want to avoid laying on your back for now, but the U pillow as I said does help even when sitting in a chiar.  Hope this suggestion help's you.

[martha274]

Ok thanks Selma.

[selmaS]

  I am further along post op and still do not like to lie flat on the back of my head...I would suggest u lie on the side of ur head instead....

[martha274]

Hey guys how are u?
I was wondering how long those pain and head swelling last after surgery.
Last night while laying on my back, I literally felt like I was laying my head on a golf ball. It was like their was a golf ball between my head and my pillow.
This evening I also had swelling and pain.