Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting seconds, pulse synchronous tinnitus (a "wooshing noise" in the ear), and double vision.

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Suture Rejection

I've been offline a few days since my computer was down, so I thought I'd check in today. I went to my PCP this afternoon to have the stitches in my head removed and got quite a surprise! Apparently I have a "gaping wound" - the stitches weren't even remotely holding the incision site closed! Gross! She said there'd clearly been a lot of bleeding, so it had scabbed over (which is how we didn't notice that it was open), but it hasn't even begun to heal. Further, she said it appeared that the deeper sutures had rejected because she could only see tiny holes where they were supposed to be.

My head has been VERY sore lately, so I guess this explains why! Long story short, she got my NS on the phone & I'm supposed to see him Wednesday. He said I may need to go back into surgery to have this fixed, but in the meantime I have a big silly gauze pad taped to my head and have been started on antibiotics again, ugh. I'm also not allowed to get my head wet or do anything with my hair. Very, very annoying. Since my nightmarish week following surgery, I've been been doing fantastic, so I'd really hoped this was the end of my shunt ordeal for awhile!

Lastly, a quick question. Does anyone have any idea what happens when your body rejects the sutures? Do they just have to go back in using some other material or ??? I've honestly NEVER had this happen, so I'm still in a bit of shock.

Replies

Monkeymom3
Monkeymom3

KS:

Goodness!!! You sure have been through the ringer! I read your earlier posts and it sounds like you have really had a tough time since the surgery. Can't believe you went out in 100 degree heat a few days after surgery to do a full days worth of yard work though! (Okay...who am I kidding. You know that is totally something I would've done. LOL)

I just wonder if that's when your sutures came undone. Maybe, it's not that the sutures didn't take but rather that they fell loose with the heat and all the bending over and exertion you did that day. At least, that's my guess. And with all the pain you experienced after that, it sounds like a possibility. Hopefully, you don't have an infection. Thank goodness, it was caught early enough.

Good luck with your doctors visit. I really hope you don't have to go back into surgery. Hang in there.

MM3
JazzyO
JazzyO

Hi KSMama, I asked my hubby who works in the O.R (he's and O.R. Nurse), he said your body did not reject the sutures they prob. broke, like the deeper layer broke first and then put pressure on the outer stitches and they broke..he said he has never heard of "rejecting sutures" and was shocked that your PCP said that. He said it depends on the condition of your tissue as to what the NS will do, he thinks if you had a running stitch, and one stitch broke then the whole thing unraveled unlike an interuppted stitch which each stitch is seprater so if one breaks the others hold (I have interrupted stitches). He said your NS might use a diff material or the same it all depends on what your Dr. find.

I'm sorry you have been through so much and have might have to go back in to surgery, my prayers are with you, Jazzy
deleted_user
deleted_user

MM3 - I know, the yard work sounds crazy and what's crazier is that even now - after that horrid experience, I am SO tempted to go out and do more (in fact my husband yelled at me Saturday for trying to sneak in some weeding, LOL). However, I'm not sure if that caused the sutures to break - I've only been having significant incision pain for the past few days.

Actually, I also wondered about the shuntograms causing it. For the first shuntogram I had done, the doctor couldn't find the right place to insert the needle and was really *quite* rough with my head (as it turns out, he never did inject the dye into the shunt!). If my incision looks as bad as my PCP claimed it did, I'm surprised neither of the shuntogram doctors noticed it! Nevertheless, the dr today said there was no granulation, so it hadn't even slightly healed since surgery.

Jazzy - When I Googled "suture rejection" I actually came up with quite a few hits - apparently it's a [rare?] allergic reaction to the dissolvable sutures. I'm inclined to think your husband is right though because I've never had an issue with dissolvable sutures before. Does he have any idea what could cause the deep internal stitches to break?

I guess it will be interesting to see what he does, my PCP didn't even want to let me out of the office today because she was so alarmed and worried about infection. I know the NS did a running stitch on the outer part, but I'm not sure about the deeper stitches - she didn't really want to go poking about & disturb it all today.
deleted_user
deleted_user

What is this unignorable call of yardwork? I so don't get it. I haven't touched the yard in a year, and I say that with quite a bit of pride, and that's without having major surgery. I just can't bend over or exert myself without causing extreme pain... you'd think that would be an aversion enough. But I suppose the call of the wild is just too much for you outdoorsey types.

Wow that really sucks. I'm so sorry. I imagine they will use sutures made from a different material anyway. Allergies, like ones to medications, develop over time, so better to be safe.

Hang in there and keep us posted!
Bax
JazzyO
JazzyO

Hi KS,
Thanks for letting me know that people can reject their sutures, I told my husband and he said in his 13 years of working in the O.R. he has never heard of it or seen it, nor any surgeon talk about it....live and learn, I didn't mean to give you any false information, I just went on what he told me. Please forgive me. It makes sense though that a person can have a reaction to the suture material.


He thought that bending over during your gardening maybe broke open a stitch, but then you said it just started a couple of day ago...so no idea.

I wonder how they know if you are allergic to the sutures? I'll look it up.

BTW, even though i dont have a VP shunt I washed my hair in the sink yesterday and I was bent over and oh my, what a headache I had after that, so know I am really carefull not bend over!

I hope that they can get you all better since we don't want you to get an infection, Jazzy
JazzyO
JazzyO

ok I have an idea, when ever you want to sneak out and garden go back and read all the posts you wrote about how miserable you felt last time you did that and hopefully the memory of the consequence that will occur will curb your desire. That is what I do when I want to do something or eat something that I know will make me feel yucky later (like I have to be on a low potassium diet because my immunosuppresant med gives me hyperkalemia, well after one time of eating to much potassium and seeing what I had to do to lower it, beleive me that was all I needed to be really careful, lol)
greenbayfan1
greenbayfan1

KS..Bless your heart! You've had a rough recovery, but it sounds like things are getting back on track. I'm just happy you went to your doc today so they could get you fixed up. That would gross me out too. Just feeling my tube running down my neck and chest, makes me gross out :( Remember, make sure you eat yogurt while on those antibiotics :) Take care and please keep us posted! GBF
JazzyO
JazzyO

Hi KSMama, I found this post from a UK site, but I don't know what credentials this person has but someone asked about the body rejecting sutures: "Some people ARE intolerant to synthetic absorbable sutures. The product is called Vicryl and is made by Ethicon (Johnson&Johnson) If you have that reaction you should make sure everyone knows about it should you ever have more surgery. There is an alternative suture called Dexon which is little used these days as Vicryl rather swept the market. But there is a chance you could tolerate that instead."

I also found some saying an adhesive could be used instead but I don't know about deeper sutures. I did have adhesive on one of my LP shunt revision surgeries but just on the surface of my back...since it was my second surgery at the same incision site he wanted to give it more support.

I looked up the signs of rejection but all I found was one person saying she had swelling, redness..stuff like that. I couldn't open the abstracts to find out more for you. Hope you are feeling better and you get to see your Dr. soon, Blessings, Jazzy
deleted_user
deleted_user

Aw man, how awful! I was given staples during an emergency C-section because they didn't realize I had allergies to metal. Well, that was not fun. Bought myself a week in the hospital with that one. So, I hope that allergies don't turn out to be the culprit. All the same, it would seem prudent to me that a different suturing material is used, along with maybe a better stitch method. I hope the second time is the charm and that you can get this done with minimal hassle and intervention. Hugs!
deleted_user
deleted_user

Bax - Believe me, I'm not normally *that* into my yard, LOL. This is the first year we've had a big garden and it's been doing so well, I really hate to see it being taken over by weeds. If I had any sort of pain while trying to do the work, I wouldn't do it...but unfortunately the pain seems to come later. I think from now on I'll follow Jazzy's advice and read some of my old messages when I'm tempted to get out there.

Jazzy - The pain only started a few days ago, but since she said it hadn't healed at *all*, I'm thinking this problem has been ongoing since the surgery or gardening. I have no idea why it only just recently started hurting though. Thank you for trying to find some information for me, this is all just bizarre.

As I was reading what everyone wrote this morning, I suddenly remembered that I *did* have a very similar problem with my c-section incision. It re-opened a couple of times and was continuously infected until they went in and did a revision. I had dissolvable stitches then as well, so now I'm wondering if perhaps that was allergy-related? The situation is almost exactly like what I'm going through now - except then it was very obviously infected. I don't know how I forgot about that!

GB - I hear ya on being grossed out by the tubing, I am too! And thank you for the yogurt reminder. :-)
deleted_user
deleted_user

Autumn, I didn't see your message 'til just now, but I'm thinking this probably is allergy-related now that I remember my c-section ordeal. That was such a nightmare I'm not sure how I ever forgot about it, except that no one at the time even mentioned me having an allergy - we just weren't sure what was going on! Fortunately I don't *think* this incision is infected, so let's hope it stays that way!
JazzyO
JazzyO

Oh I'm glad you remembered about your c-section ordeal. I got mad at my hubby saying that sutures don't get rejected and he said he knows that it can happen, it is just so rare and that I quoted him wrong. So my fault. Glad you are on your antibiotics to prevent an infection...hope your Dr. can help you heal soon, Jazzy
deleted_user
deleted_user

Just a quick update - I've been dealing with a headache, stomach ache & nausea since I last wrote, not as bad as before though. The shunt tubing seems to be going wild lately, which I think(?) is causing some of this. I saw my NS yesterday and he wasn't concerned about the wound opening up since it had scabbed over. He figures it'll heal eventually (though I don't think he cared one way or another).

So, I was finally allowed to wash my hair again yesterday and despite my efforts to be careful, I lost half the scab. Gross. I haven't even bothered to have my husband check the incision today (he was pretty grossed out to see it open last night), so I guess I'm just going to see how things go. My NS wasn't concerned about the headache, etc. either - so I'm pretty much done with doctors right now. I guess this will all either get better or worse.
Monkeymom3
Monkeymom3

Okay...Here I go. If you guys look at prior posts you'll see that when it comes to the subject of shunts often times I don't say much if anything at all. There is a reason for this.... I HATE THEM! I think they should be illegal. I think any doctor that does a shunt surgery should be sued for malpractice.

I haven't met any of you in person and only know you through your stories. Which in some ways is the best way to know you. Because I know your soul. I know that you are lovely, compassionate people who have so much to offer this world and like me, are handicapped by this ridiculous illness. And, like me, juggling meds, not being able to make plans, going in and out of the hospital...it becomes a quality of life issue. And for some of you...like KS who have severe papillidema...surgery becomes a necessary option. But, it is maddening to watch my friends suffer this way...and much more maddening to watch these doctors blow off your pain and suffering. I keep asking myself why. Why do these doctors continually blow off their post surgical shunt patients?

I think it's because they see it and hear it all the time and short of redoing it all over again and "hoping" for a better outcome they don't know what else to do. I don't want to sound like Eeyore here and I certainly don't want to bring any of you down but I want you to know that I care about you very much. KS hearing this from you is like the last straw for me. I am going to take some action and write congress about PTC asking that changes be made to PTC patient care. This is ridiculous.

I'm pretty certain you could get better care in a 3rd world country. KS, Jazzy, TJ, Greenbay, Charlotte, and the rest of my DS friends...I am so sorry for your pain. I promise you right now, right here, in this post, today that I will begin taking action to bring awareness to PTC and institute change in the level of care and options that PTC patients have.

In the meantime, KS...Don't give up. Be persistent with your doctors. I'm praying for you.

MM3
deleted_user
deleted_user

MM3 - you're post has brought me to tears. You are so right! The medical community is failing us! Somewhere somehow there needs to be change! I keep hoping a celebrity will step forward to talk about this disease but no such luck yet (that I know of). Sad that is my only hope, huh? You are a great writer - maybe you could formulate the letter to congress and circulate for signatures?? Maybe the foundation would have some suggestions on how to go about making some change happen (just a thought).
Angie