Aa
Not at 6 months post-op
I really do suck about updating after starting a thread! Last I posted I was having a CT to check for a possible fracture of C1/C2. Good news is no fracture! Bad news is that after several more office visits, stitches, etc, I had to have another very minor surgery to close my incision site. That was almost two weeks ago, and my stitches are coming out tomorrow and I'll restart the slow process of growing out my long hair again. Sigh....
I'm really conflicted on my hopes for tomorrow's appointment. On one hand, I'm really hoping tomorrow the surgeon takes my stitches out and releases me for good. I'm ready to close this chapter in my life, and by in large my symptoms have improved from before surgery. On the other hand, I'm having lingering issues that I'm really hoping he doesn't say are permanent. The biggest one is that when I exercise for longer than 30 minutes I get a pretty intense sharp pressure at the base of my skull that lasts for anywhere from a few hours to a day. Based on the surgery and CTs, he's pretty convinced there isn't a patch leak, so he's not really sure what to think about the pain. I really hate to think there's something still wrong, so I've largely accepted his advice of "let's just wait and see." I'm way to passive for this condition!! At 6-months post-op should I really be concerned with symptom reoccurrence, it this something I'll have forever, or should I chill out and truly wait and see? Things are really hectic because in a few months I'm moving, my insurance changes next week, etc. So, I can't keep seeing the surgeon, especially if there's not much wrong.
I'm really conflicted on my hopes for tomorrow's appointment. On one hand, I'm really hoping tomorrow the surgeon takes my stitches out and releases me for good. I'm ready to close this chapter in my life, and by in large my symptoms have improved from before surgery. On the other hand, I'm having lingering issues that I'm really hoping he doesn't say are permanent. The biggest one is that when I exercise for longer than 30 minutes I get a pretty intense sharp pressure at the base of my skull that lasts for anywhere from a few hours to a day. Based on the surgery and CTs, he's pretty convinced there isn't a patch leak, so he's not really sure what to think about the pain. I really hate to think there's something still wrong, so I've largely accepted his advice of "let's just wait and see." I'm way to passive for this condition!! At 6-months post-op should I really be concerned with symptom reoccurrence, it this something I'll have forever, or should I chill out and truly wait and see? Things are really hectic because in a few months I'm moving, my insurance changes next week, etc. So, I can't keep seeing the surgeon, especially if there's not much wrong.
Unfortunately, my appoint with the NS got rescheduled due to emergency surgery. But, I'll update when I get some news!
I know when he did the last surgery, he took some cultures of the area and it was slightly infected. I got 10 days of clindamycin, ointment, etc. Hopefully that's no problem, and he's told me that if I get a fever I need to call him ASAP.
I know when he did the last surgery, he took some cultures of the area and it was slightly infected. I got 10 days of clindamycin, ointment, etc. Hopefully that's no problem, and he's told me that if I get a fever I need to call him ASAP.
COMMUNITY LEADER
Ask for a topical antibiotic ointment to put on where it is open to help keep infection from setting in, mine were small like that too, but it did close but was closer to 9 months or longer.
Do not wash ur hair too often as the skin dries out and pulls and can add to the time frame for this to heal....
Also since it is that time of yr with being out in the sun, keep ur incision covered as a sun burn on that area is not good.
I am very sorry to hear of your Mom. Your family is in my prayers. I do hope you get the problem with your incision taken care of. It sounds like you are on the right track.
I brought up EDS before my last surgery and he said that if it didn't heal this time he would probably test. So, looks like we are there.
The area that opens is about dime-sized, at the very top of the incision, well above the C1 line. It will randomly open, leak a bit, close, open, repeat. It is sometimes accompanied by headaches and neck stiffness that resolve after it stops leaking, but otherwise no other symptoms.
The area that opens is about dime-sized, at the very top of the incision, well above the C1 line. It will randomly open, leak a bit, close, open, repeat. It is sometimes accompanied by headaches and neck stiffness that resolve after it stops leaking, but otherwise no other symptoms.
COMMUNITY LEADER
My deepest Sympathies on the loss of your Mother...May she rest in Peace<3
As for the incision, mine would ooze for months,...just little areas opened...and washing hair too often can cause this as well as certain emotions...like u said crying....
Were u checked for EDS? I know I keep asking but those with EDS tend to take longer to heal...how large is the area that is open?
One month later....the uncertainty remains.
On Tuesday I had a follow-up with the neurosurgeon. What a whirlwind of a day that was! Tuesday morning I was visiting my mom in the ICU when my surgeon and I crossed paths in the hall as he was visiting another patient. About 3 months ago he did surgery on my mom for a brain tumor, and so he knows the family well. In the hallway he quickly checked my incision site and said that things actually looked good, but that I should keep my next appointment with him. Of course, at the time, I didn't know it was actually for that afternoon because I hadn't checked my calendar for the day.
Tuesday afternoon my mom passed. About an hour later my phone alerts me of my appointment with the surgeon in 20 minutes. Yikes! Despite the situation, I figured it best to keep my appointment, hoping that I would get good news,put this chapter behind me, and tell the surgeon of my mom's passing. Unfortunately, the news was not good. Between that morning and that afternoon my incision site had opened up again. My surgeon is pretty shocked, doesn't really know what to think, but sees a pattern emerging where the site opens up after events (e.g. crying..and I had always said it was exercise-induced) that increase CSF flow.
Knowing my personal situation, the surgeon said he would feel terrible trying to fix anything on Tuesday and wants to give me some time to get cope with my mom's loss before discussing next steps. So, I go back to see him June 10th, where he said he will need to bandage the site and possibly look into more invasive measures.
One day...this will all be behind me. For now, I think we are both stumped on why this darn incision won't just heal!
On Tuesday I had a follow-up with the neurosurgeon. What a whirlwind of a day that was! Tuesday morning I was visiting my mom in the ICU when my surgeon and I crossed paths in the hall as he was visiting another patient. About 3 months ago he did surgery on my mom for a brain tumor, and so he knows the family well. In the hallway he quickly checked my incision site and said that things actually looked good, but that I should keep my next appointment with him. Of course, at the time, I didn't know it was actually for that afternoon because I hadn't checked my calendar for the day.
Tuesday afternoon my mom passed. About an hour later my phone alerts me of my appointment with the surgeon in 20 minutes. Yikes! Despite the situation, I figured it best to keep my appointment, hoping that I would get good news,put this chapter behind me, and tell the surgeon of my mom's passing. Unfortunately, the news was not good. Between that morning and that afternoon my incision site had opened up again. My surgeon is pretty shocked, doesn't really know what to think, but sees a pattern emerging where the site opens up after events (e.g. crying..and I had always said it was exercise-induced) that increase CSF flow.
Knowing my personal situation, the surgeon said he would feel terrible trying to fix anything on Tuesday and wants to give me some time to get cope with my mom's loss before discussing next steps. So, I go back to see him June 10th, where he said he will need to bandage the site and possibly look into more invasive measures.
One day...this will all be behind me. For now, I think we are both stumped on why this darn incision won't just heal!
I understand completetly. I had 4 sugeries in all and after each one it does take longer and more patience to heal. It takes time. Now I just here some bad news today after a year of trying to get SSI and they denied me. My journey now begins all over again, but I won't stop because I worked 33 yrs and I know I can no longer work. Hope things go good for you tomorrow. I'll be thinking of you.
COMMUNITY LEADER
Since ur incision is not healed yet, could indicate EDS...so do add that to ur list of things to ask when u do get to see ur surgeon in 2 weeks.
Remembering to update this time! I didn't get a chance to talk to the surgeon this time. I was on the calendar to just see a PA to get my stitches out. However, my wound site still wasn't healed, so I didn't get the stitches out, so I'm seeing the surgeon again in two weeks. Gives me plenty of time to work up questions!
COMMUNITY LEADER
Hi...I was glad to see ur update as well....
6 months post op is still in the healing phase and 30 mins may be too much, cut back and slowly add when u no longer feel the pressure.
I will be 5 yrs post op at the end of this month and I have noticed improvements each yr....so, at 6 months it is possible especially after having another surgery no matter how minor that u still may have some inflammation and will have some symptoms....that is part of the healing process and as time goes u should be able to see that it will decrease.
At least I was and I pray u do too.
Nice to read your update. I remember your posts prior to surgery, how scared you were. I can relate. Glad you're on the other side and doing well for the most part. I just wanted to suggest if you haven't already done it, that you get a copy of your operative report and consider a second opinion. Hopefully your pain on exertion will subside on its own, however I would want some reassurance of that if it were me. Good luck moving forward with the new chapter in your life! Lisa
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