Frustrated and in pain

[Devin215]

Hi Everyone,
I just wanted to ask everyone for those of you who have had the surgery how long did you have incision pain? Me it has been just over a month post op and I still have incision pain...Not to mention I had disolveable stitches and glue over them and all the stitches ( I think) have just now come out. When I lay flat on my scar it is comfortable for about 3 minutes then I get sharp pain that feels like a needle going through my skin and the dull ache of the whole scar and muscle kicks in. My Shoulder muscles feel like rocks and up until yesterday I was able to bend my head down and now today it hurts just to lean over and stand up, look down or look up. Not to mention side to side motion is very limited as is. I still get daily headaches which have moved from the back of my head to the top left or right and behind my eye ( not as intense as chiari headaches which I have not had one yet). I have become nocturnal basically, have nausea and am very frustrated. I have an appointment with my regular doctor tomorrow which I will mention all of this to him and I talked to my NS last tuesday who said he is very optomistic for me and given my setbacks post surgery with the swelling and fluid collection I need to give it at least another 4 weeks before I decide whether or not my surgery was a success and time to heal. I am just tired of the roller coaster of pain, fatigue, dizziness, restlessness, nausea, and just being stiff and sore. I am so frustrated that I finally broke tonight and last night and started crying cus I just want to feel what is suppose to be "normal" again. I still have a numb spot to the left of my incision too. I just want someones advice on how long till they got their range of motion back and how long till there incision site stopped giving them issues? I also am VERY stiff in the mornings I am restless when I DO sleep cus I will wake from the pain and have to rotate  from side to side during my sleep to avoid 1 die of my neck hurting.. I know I am rambling but I think I may have reached a breaking point. I mean I am taking percocet should that be putting a dent in the pain? ANY ADVICE PLEASE WILL BE APPRECIATED

[Devin215]

Thanks kim and everyone else who responded I appreciate it so much. I know I need to take one day at a time. Does anyone else have any advice?

[redkim]

Itching could be from healing, or hair growing back in.  I know if I don't shave my legs for a few days they start to itch.  One thing someone told me was not to assume everything you feel is from chairi, because it could be something else and you don't want to miss what else it could be.  Like allergy to one of the med's or something else.

[redkim]

Hey Devin:

I will try to comment on each items:

Stitches – if this is the same pain as me.  The nerves get cut and you will get tingle needle like feelings on your scalp.  For me it’s only on the left side from where my incision is and I hear this can last for up to a year while the nerves heal.  This happens whan I touch the skin/scalp on the left side.  I hear this is common.

Your shoulders and probably tense from stress.

My neck/spine hurts to look down.  It was a while before I could look up because of the swelling, icing helps a lot!.  Turning side to side was difficult for about three-four months.  I wouldn’t drive until 9 weeks when I started back to work.  Dr. Won said he would send me to physical therapy for this.

I was on pain med’s but know I had heachaes from when they would wear off.

I was up so late after surgery and didn’t understand it, I thought I had insomnia.  I would be up until 3:00 AM sometimes.  And would sleep until 10:00 AM.  How late are you sleeping in?  I hear this was common too.

I too was nauseas; they gave me medicine for that.  I don’t recall what it was.  My first two weeks I lost 10 lbs because anything I ate I would vomit up…

Try getting a different pillow.  I have a memory foam pillow which is very supportive and helped with neck pain.

Please don’t give up, you have had some setbacks but most of what you said sounds very normal.

[selmaS]

HI Devin....I must say I have had the awful itching as well...was told it is the healing....I also have had oozing and minimal bleeding....I did not scratch the scar but the way it was explained to me is.....
Well first I noticed it more the day after I washed my hair....I was told that while wet it was fine, but as it dried it the scar pulled away and I had minimal openings of my scar.

After getting on a  antibiotic and switching to a baby shampoo this has resolved greatly.
I have a few bumps as well, but I did not have stitches...so not sure what u mean there....I think mine r just where the scabs were from the opening.

U can get a rx for a topical antibiotic ointment as well.

I had the itching up until I switched to the baby shampoo and the antibiotics...5 months...ask now so u don't go crazy like I did : )

"selma"

[Devin215]

Does anyone else have some adivce for me on this topic? Please help! I am lost on this one my Dr. (PCP not my NS) Says everything is normal... Now I have a new issue. Last night and all day today my incision started to itch! There are bumps where my stitches were....I scratched it and not very hard and it started to bleed...Not a lot just enough to blotch it a couple times and it stopped. Help me!! Any advice is appreciated.

[selmaS]

Hi Devin,

I too have a few places on my scar that r rather bothersome.I keep my head tilted to the side and do not lie flat on the scar.I am now 6 months post op...so, it can take awhile.

What u may want to try is place a pillow behind ur back and lie on ur side and avoid rolling around.

I also have a tight/sore shoulder and was told to avoid some creams bcuz u do not want them near the scar.

Continue to rotate ur head , neck and shoulders slowly...ur range of motion will come back.....

and I am sorry to say, u may not feel "normal" as u have in the past, but u will have a new "normal".....and it should be better than u were prior to surgery....the healing process can be disappointing bcuz of the roller coaster of symptoms coming back.....but , most r not here as long as b4 or as strong/bad as b4.

Try and focus like saweygirl said on one positive at a time.......

I am going thru this as well....and am trying very hard to focus on the positives.....I am also aware that I may require another surgery for TC , do u know was this ruled out for u?

We all heal at different rates and I am sure if u were having an issue ur PCP would be on top of it.

U r not alone in how u feel......

"selma"

[sawyergirl]

I am 16 month post op and I remember that roller coaster. I also had the numbness also to the left of the incision.  I had staples which came out after 10 days.  I had 15 staples that should have come out a day 8 and 1 that should have stayed in a few more days so the incision opened up and caused some problems. For stiffness and your shoulder pain u may want to try vapor rub/creme NOT things like icy hot.  One thing that really helped me is to focus on even the smallest gain. example you havent had a Chiari headache. Thats awsome.  I remember when i woke up from surgery the first things I said was "my head is pounding but this is first time in a long time i dont have a headache (chiari)  I know your pain and things will get better and you will have ups and downs. It may be slow but grab the small things.