So I am 3 ½ weeks out after craniotomy/laminectomy/duraplasty and for the past 3 days I have had an increase in swelling on the left side of my head (which has always been swollen but now it is worsening) which has increased my pain.
Of course it is the weekend, and I don't want to go to the ED. My thinking is not clouded, no leaking from incision site. Swelling slightly improves with ice. Some numbness in my toes, but Im wondering if that is from sitting so long…..I am trying to hold out until Monday morning, wondering if I have a leak or if this is just still post surgical swelling?
I called the office on friday and left a message about the swelling. At that point there was no increased pain (that has since changed). The receptionist said the doctor would call me back if they were concerned, but thought that it was somewhat normal.
No fever, but Im taking ibuprofen and hydrocodone/acetaminophen so I would not expect to. Swelling is a little squishy/spongy near incision, but now is getting harder/ firmer further up the head.
Having dealt with a large pseudomeningocele after PFD, I can tell you that my daughter was treated with diamox and Topamax to decrease CSF production. Her recovery was remarkable after starting the meds although there were/are side effects that should be considered. Not to jump the gun that you actually have a pseudo. We hope not! Feel better soon
I am 10 wks. Post-op, same procedure.
I had more “squishy” swelling in the back of my head the first month or so. Even though is it better now, it still feels swelled at times. I never had a fever or increased headache with it.
I have had a CT scan since surgery that showed a small amt. of fluid at the surgical site. This is a pseudomeningocele. My NS assured me that this is normal and will be re-absorbed. He said any amt. of swelling at the surgical site is considered a pseudo.
I see him on 12/27 and he will repeat a CT again then.
It it something that concerns me, but I am hoping he is right.
Im guessing its swelling from the surgery. We all have a rough time getting cut open. I had so much pain and it stayed swollen until i started acupuncture. This is me recommending acupuncture to u and everyone. The nerves are angry and the tissue trying to heal. Treatments break up the scar tissue, move stagnate blood, and tightened muscles and nerves get relief. I am slowly gaining full feeling back there. I still need treatments to continue healing but its 100’/. Worth it. Start looking for an oriental medicine doctor. Tell them u need treatment to ur scar. If they are confident in treating you try it. The stronger the feeling the better its working. Thats how you rate it. Weak treatment is weak healing. Please anyone of feeling like sueperpa seek acupuncture by omd
I am also getting Acupuncture. I have had one visit and go for the 2nd one this Friday.
My reasons for going was that I just feel "out of whack" from the surgery overall. Also, while my headaches are better, none of my vestibular symptoms (dizziness, vertigo, tinnitus, etc.) have resolved. I am hoping she can help with all of that. I will mention scar treatment as well. I have been doing scar mobilization myself so that it does not get adhered down, but everything is so tight back there, I will take any help I can get.
I went to both Acupuncture and Cranio-sacral therapy (which is supposed to really help with csf flow) for a few months before having surgery. They were both helpful, but did not provide lasting improvement. I am hopeful that now that I have had the surgery, I will get longer-lasting relief from treatments. I felt great after the first one.
Some treatment leave me feeling better than other times but for the purpose of healing and relieving my nerve pain all over my head which i thought was just " head aches" weird, and weirder even more is i have to get acupuncture as often as possible to help me feel my best. Really strong treatments. I love going and i sleep threw most of the alone time, very relaxed. Like a deep massage that hits the perfect spots. I hope anyone in pain trys acupuncture from an oriental medicine doctor at least twice.
Spoke to the doctor today. He thinks that perhaps it could be a pseudomeningocele (GO mandy!)……Have an appointment tomorrow to see him first thing in the morning, and a CT in the afternoon. Had bloodworm this morning. Still feel terrible, so I sure hope they can put me on something to make me feel better. Already on a pretty good dosage of topamax.
FYI…our NS did not feel Topamax was enough to reduce her production of CSF, so they added Diamox 250 mg/3x a day along with .25 of Topamax. That actually did the trick…nausea and headaches pretty much gone and the pseudo decompressed (and left a nice dent). These meds have side effects when taken together so she was monitored closely. The other option was to surgically repair however NS took great pains to discourage this, saying the pseudo would be gone by December. (This was June). It was actually gone within a month. Good luck tomorrow!
Sue, not sure if you read my nite to you… Everyone has their own route when it comes to healing! Im going to tell you honestly- pills dont heal. They contain nothing benificial. Chemicals that mask our pain but do not improve our healing. You think to your self others cant feel this bad- dizzy drunk confused heavy. Believe we all suffer with these problems after surgery. In america we believe covering a problem makes it go away. Eastern medicine believes treating the problem at the source is the best way to free yourself of pain. The anchors drs use to mount our head while they cut with a SAW caught my jaw muscle and i get radiant head aches from the NERVE my surgeon stabbed. I recieve acupuncture to my left temple now twice a week. Along with my scar. I have gained feeling around my scar that is not pain. I can tilt my head and twist it all around without that squishy water logged feeling. The needles dont go deep they just force the area to loosen up and " breathe" so that the body AS A WHOLE can work on healing correctly. MEDICINE, PILLS will not do what can be done the natural way. Its not even healthy to intake topimax. Why would you believe the person who is making money off you. Doctors are only trained to cover the problem. If your problem is, you needing a blanket than continue taking pills to fix your scar. But do some research on topimax and results of such meds on google. Please look for an omd oriental medicine dr. Tell that dr who specializes in the Human body what you are feeling
Sorry for the delay…took 2 days for the NS to st back to me after the CT. He said there is a “small” accumulation of fluid . Pseudomeningocele vs seroma…he said no treatment, just continue doing what I’m doing. So resting…and that it would slowly absorb. I feel a slight hair better. But still can’t even sit upright to socialize to walk around like I was 10 days ago.
Fortunately, 3 different Chiari specialists also told us that most pseudomeningoceles will eventually resolve on their own. However the daily nausea and headaches were more than we could bear, so the NS used medications to hasten the resolution of the pseudo. We were happy the meds resolved her symptoms within days. It’s hard to be patient when you’re suffering, and she suffered for 2 months before they tried the meds at my insistence that something be done. Hang in there, yours may resolve more quickly.
