Hugs and more hugs and vingers crossed you wake uppain free.So nice to see half your real face.let me know how it goes!
I have SO much swelling. Not too surprised, as they had to do a ton of injections to keep me numb.
My right eyebrow is so saggy it keeps my eye half closed and I canāt move either eyebrow up because of the swelling. The back of my head has two massive 5*2 inch mounds of swelling. It is so huge considering the actual cuts are so tiny. But I did have some problems most people donāt have.
My face nerve pain is so bad from all the pain in my head. Like when I have sinus pressure but more. I donāt expect the nerve pain to go away anytime soon since it could take months for the Gamma knife to take effect.
Iām just hoping to heal and rest for the rest of the weekend.
I think I look like a totally different person! My eye sockets are completely full of fluid now, this is actually the photo from yesterday, it is even more today.
Most the fluid and swelling from the back of my head has drained down into my neck, making my neck super stiff and ache to move too much. I feel like I was pretty seriously mislead by doctors about the recovery time and process. I am planning to complain a bit at my one week follow up. If nothing else, when things started to go wrong they should have warned me then that I might have a longer recovery than they originally quoted.
Now that the fluid is in my eye sockets it doesnāt seem to be setting off my ATN pain quite as much as when all that pressure was in my forehead, so that is an upside.
Now I am just waiting to look and feel like myself again. I am taking SO many naps and as I am a life long insomniac it is so weird, but my body needs it, so Iāll keep passing out on the couch or bed every 3-4 hours.
I am so glad I looked to see whether you had posted more.I did not want to wake you up.I am glad you are sleeping/.Just sleep as much as you can.I wish I could send you some medical hypnosis videos.Just to plug in and have.Usually I sleep through them all and wake up at the end.You are doing Okay.I did not know that there were complications.Where did you have it at?
I hope that you have someone watching out for you,babying you,making you soup to take a couple sips.I do so hope it works out.Time .a bit of time.
Damn-I should have been watching knowing that you are young and spunky and woul have been up days before I would be.I will check more often.You are a ray of light and beauty.
Iām doing better, one week out from surgery tomorrow and I finally have my eyes back. No more puff. There are still bad bruises on the back of my head, my neck is still stiff and a bit swollen at the top, and I have to keep my hair contained on top of my head or the weight of it pulls on the bruises/cuts and aches badly. My bangs cover up the forehead scars well enough. And the pain is mostly gone there unless I touch near them.
I am starting to feel like myself again and made it through without a nap today.
We shall see over the coming months, if I can report this horrible expirence was actually helpful for the pain, or if it just added injury to insult.
OMGosh-you are doing great.
I really hope-I really hope that this was something that helps-not hinder.You were getting the stabbing.As crappy as that is-that is what they seem to want to hear for Gamma Knife.All dressed up with a Christmas bow.
I hope the appointment goes well tomorrow and I will check in to see how it went.It seems a lot of the old timers have gone some where else-or they are all better.They are much better cheer leaders than me.
Starting the new year as a new you.Or getting back to the you that you were before this happened.Wishing you a surprisingly pleasant 2021.
Hi
How did the one week appointment go?
The appointment went pretty well I think. It was a video visit with the head nurse, so they mostly just asked a bunch of questions. One of my back of head pin wounds isnāt closing and is still weepy and sore. So they got me some antibiotics to take just incase it is an early Infection. The other three have closed up nicely and are sore to touch but just a tiny red line on the surface. The woman I was talking to wasnāt there for my actual procedure. She asked me about why I was so swollen and still not well a week later, and I described the problems with my halo, how I wasnāt numb enough when they put it on, and how I didnāt fit right in the CT bracket, and ai started crying and then got pretty mean about it. She went pretty white and said she would file a report and see what could be done to help with the CT.
So I guess that is something. I am feeling much better now that most the swelling has left. Except for not being able to put the back of my head against a chair back or my pillow, and having to be very careful when washing my face and hair, I feel basically back to pregamma knife pain levels.
Wow-hoping that everything goes smoothly now and that the pain is not as bad.I canāt imagine why they would get all upset if the halo did not fit.When something does not work right-at the beginning of a surgery i would hope they would say come again when we have the proper fit.
Sounds very yucky to me.
Do you have any numbness?
Elaine
I mean, the halo fit on my head ok, I was just not numb enough when they put it on. The Halo then locked into a bracket on the CT table, and I didnāt have a long enough neck to go from the bracket to the lower level table. It is hard to explain without drawing a picture.
Anyway. The top of my head was super numb, from about 2 inches back from my hairline to where my skill slants down, but I think I am starting to get feeling back. They said that can happen too. The nerves get messed with from all the pressure the swelling in my face caused.
So far litteraly no changes to my ATN pain areas. No numbness, no pain relief, but I expected to wait months for that. If it happens at all.
Okay-so so far-not a step backwards.Thatās good
The doctor who I saw started with all the numb but with pain stuff and I pulled out Striking Back and he shut up.But it did not buy me an appointment.
Have you tried clonazepam?
or any of the narcotics?
I just wish I could do something.Like if you needed a kidney if mine were good I would give you one.
You are so young to be in this much pain.
Anyways-I am being a pain in the butt to you-you donāt need that along with the rest.
I hope that things start getting better a little every week.I hope you are keeping a diary of how the scars are doing and how the pain is-then you can look back and you can judge how much better things are.
Good to know about the neck thing.I have a short neck.I wonder whether our problem is the little bit going down our necks.I wonder if anyone ever did a study of ATN and short necks?
Maybe google will know!
Take Care
Elaine
You are very sweet, and not bugging me at all. I am also discovering I have a conective tissue disorder too, still working out what the exact diagnosis is, but my joints donāt stay together, and that explains all the leaky disfunctional bits of my digestive system as well. So even if I get my face feeling better I will still be disabled to some extent, though I am sure I could have more energy with less disabilities and pain. I figured this out during my nerve block. The face pain was gone for 22 days and I still hurt, and wore out easy, it was just my wrists, ankles, shoulders and intestines hurting instead of my head.
I tried several narcotics in the 5 months before I got diagnosed when doctors were just throwing me whatever would make me stop crying and go home. Either they made me vomit violently, or barely took an edge off. Not ideal and not worth it.
I have mostly accepted that there are not going to be good answers if this Gamma knife fails, so I emailed a bunch of lawyers yesterday and I am planing to start my disability case next year. I think I might have managed to work enough part time hours in the last 5 years + the two years full time between college and onset of ATN to qualify for the minimum work required for social security disability at age 30. But we shall see. Reading about all that makes me anxious so I donāt know if I fully understand it all.
Do you think you might have Ehlers danlos syndrome?
I think that is what it is called.
I had looked that up a while ago when I had back pain.
It is all such a crap shoot.
And trying to fill out forms when in pain is awful
I hope that you have some lower pain days to be able to fill them out.
Have you done a ketamine infusion?
That is something the free pain psychologist asked me and the private clinic The private pain clinic that I have been going to because none of the public ones want anything to do with me(Canada) say it is not worth it.But the doctor does not even know how to do a marcaine shot in the chin (think heās trying to ditch me ,too).So basically-my family doctor is the only one that has been prescribing me anything.But I would try the ketamine infusion. if it was offered.
I have been emailing one of the other women that has pain and she has done all the disability forms.But it is a pain in the @ss.
ust do it-and if things get better you can move forward with your life.
At least the pain has gotten me a new hobby
Beach glass Christmas trees!
I had Gamma Knife in 2007 for Trigeminal Neuralgia in my left lower jaw, I suffered it for six years till I could not be given any more pain meds. I was a bit scared, but had complete confidence in the Dr. I met to do the job, after a consultation we decided heād do it two days from when we met! He told me I may have some pain for a while after the surgery, I didnāt. Just four days ago Iāve had a flare up and have been taking gabapentin. It has subsided, I pray it was just a flare up and not every six months as it used to be. Good luck to you. Iāve been blessed for almost 14 years, pain free.
Iām a woman 81 years old. I donāt have time for this! Iām
Claiming Jesus protection, I know the Gamma Knife canāt be done again! I think youāve made a great decision. God Bless you! Love, Mimitx
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Glad to hear it worked well for you! I am almost 2 weeks out, and so far no change to my ATN face pain levels, but I didnāt expect it to work very fast. My cuts from the halo are finally all healing, one of the back ones got infected and they had to put me on antibiotics before it would close up. But finally the back of my head doesnāt hurt everytime I lay down.
Thanks for your message, and good luck moving forward.
How is your pain today after gamma knife? I am trying to decide between gamma or mvd.
Mine is not a good case for recommending Gamma knife. I had a horrible experience with the head mounted frame, and now 2 months out I have higher levels of pain, not lower. Not knowing anything about your case I donāt know what would be best, but for me MVD was not an option and my gamma knife doctors said I would have at best a 50/50 chance of Gamma knife helping or doing nothing. So I am not a āgood candidateā for anything. I am still very early in the wait period, since it can take up to a year for it to ātake effectā and I am about 2 months into that year. If you want to read about the terrible experience I had on the day of the procedure I wrote it up on my blog at Gamma Knife, the Surgeryā¦ ā Masking the Pain
But my doctors assure me these are very unusual happenings related to my body not responding normally. So I donāt want my experience to scare people away from something that could help. Iām happy to answer any other questions.
Thank you. I am 70 and trying to decide between MVD and Gamma knife.
I have ATN and Classic TN.
The classic TN is the worse for me.
What is the next step for you since the surgery didnāt seem to help?