I am two weeks post op- and doing well! I feel better than I have felt in a year! The majority of my symptoms are gone! I have one question though. Is there anyone that has had the surgery that developed a lump on the incision site? It's a pretty massive lump- so much so that when people come to visit- they look at my head and say, Whoa what is that lump??? Seriously- it looks like a growth! I went Monday and had the staples removed and asked the nurse about the lump. She said it was fine- not oozing, not infected, etc. She said it was just swollen. I was just wondering if anyone else had one of these appear and if so- how long before it goes away? I mean it looks like my head has a new shape! It's gross! My incision hasn't grossed anyone out- but the lump....yep! And- it is a little sore! It's hard to lay my head back because this massive lump makes it uncomfortable! Thanks all! :)
Hey there Lovemygirls,
First of all congratulations on having the op and feeling heaps better.
This is really really good news to my ears.
I have only just been diagnosed yesterday and I am so so scared. It is all comming together for me now The years of being diagnosed as stressed and full of anxiety for every symptom I have had and being brushed off for mentioning that I thought it strange that I had such a surge of head pain if I strained on the toilet!!! (as if this wasnt hard enough to ask about in the first place!!!) Now I see.
I can remember clearly at about 8 years of age falling from a wooden swing which broke in half while I was on it and falling onto my tailbone onto the roots of the tree the swing was hanging on and hitting my tailbone so hard that the pain i felt was at the top of my spine. I am wondering if this is when this all started or was I born with it.
My opinion about your question even though I am not qualified in any way shape or form:
When we have ops we can get a fluid build up in spots which the body eventually gets rid of itself. I think if it was dangerous that it would be red and angry and hot to touch. Not knowing exactly what your op involved is something else too as I have a friend who had brain surgery and he had to have a shunt put in to drain fluid from leaking from his skull but this apparently only happens if you have had the skull itself cut into.
Anyway glad you are feeling better
You didn't mention that last I heard from you. It's not leaking, Right? Was the nurse not conserned abot it? If it doesn't get better, please call them. I just worry about you!!
Please continue to take it easy and keep us updated.
Ha Ha- you caught me! I didn't mention it to you because I didn't want you to worry! :) I already know you that well! No- the nurse didn't act concerned about it at all! She said it was very normal to have the swelling! I even sent her a picture of it before I went to get the staples out and she showed it to Dr. Hampf and he even said it was fine! So- I am not worried about the lump- it's just annoying and ugly! :) It's not getting worse either- just staying its same lumpy self! :) I promise I am taking it easy- not over doing it! Unless you consider sitting in the recliner watching the Country Music Awards- over doing it! :) Thanks so much for your concern and caring! It means alot to me!
I know a diagnosis can be very scary! But- the way I look at it- it's a huge blessing to get a diagnosis! Many people online go years without a correct diagnosis! So- I am thankful to God that I found a great doctor who diagnosed me and scheduled my surgery. I am very fortunate that I am doing so well. I still have to remind myself to just rest- rest- rest! You sound just like me- when the realization hit that all the problems I have had for so long- are because of Chiari! It almost helps- don't you think? To have a reason for all your problems. I had the SAME problem about going to the bathroom! That's not something you want to share with to many people- but it is a very REAL part of my Chiari! And I have to tell you- post op- that is still an issue right now. But, the dr. said that is normal for several weeks post op.
You were talking about your experience at age 8- weird but after I read that I had a similar experience....funny! But- Chiari is congenital so we are born with it. That incident could have started the symptoms. But- Chiari itself we are born with.
Yeah- my lump is just fluid! The nurse was so not concerned about it- it's just annoying! Was hoping I could find someone that could say oh it a couple of weeks it will be gone! :) Oh- and they did open up my skull. He removed a 3 inch in diameter piece of my skull. I was concerned it might be fluid leaking too- but they said it wasn't. Plus- it's not getting bigger! It's the same as it was last week! So- I would think if it were a continual leak it would still be getting larger!
Anyway- good luck with your Chiari journey and if you need anything or have any questions just ask! This forum is wonderful!
I am new here and still kind of nervous. I feel like Lovemygirls. I have all of these problems and just keep hearing that I am stressed, I have fibromyalgia, I have chronic daily headaches - you name it - I have it! Mine started when I was about seven and broke my collar bone in two places when I was hit on the back with a 2x4. I have had headaches ever since, but the pain is now just unbearable! But the thought of the surgery scares me to death! I actually want a diagnosis - then I won't be crazy!!! My appt with the NS is on the 24th, so please be offering up prayers for me that they will find something wrong (kinda weird to say, I know), but if it isn't this, I'm just not sure what to do.....
Thanks for your replies and even though I am still really really scared at least I know that you are all there and still going and have the SAME problems.
I have been scared about the pressure i have felt in my head for ages now and have ALWAYS thought (morbid i know) that I would be one of those people (touch wood) that they find having had a stroke on the toilet. You are both right - it is nice to have a diagnosis and not yet another "oh this is your anxiety trip again" but I want it fixed now. The waiting is driving me nuts and its only been 2 days.
I got my appointment today for the MRI (only had a ct scan so far). It will be on the 26th November and then I will see my specialist doctor after that for decision making.
My imagination and fact seeking will send me crazy before then I am sure. How do they think people cope.
jyojlyn: I have a friend with fibromyalgia. She suffers a great deal with pain.
My ears also seem to be leaking fluid from time to time - is this part of it? Sometimes they seem really wet inside. Like you I am new to all this and now my neck and back are aching non stop as well as up the back of my head.
I think its really quite hard to come to terms with something like this all of a sudden but then i guess its the same with any problem someone is diagnosed with. We just want it to go away.
Thanks so much for talking to me - I feel like a nutter with all the concerns I have but I dont want to end up with paralysis, brain malfunction or dead - basically - and this is what I'm scared of. Give me the op any day. asap
Lovemygirls2 : you sound so brave. I'm going to call you Braveheart! Continue to get well and I hope I am in feeling like you soon.
Sue x x
I am honored that you are calling me Braveheart! BUT.....I assure you- two months ago- when I got my diagnosis....I was just as scared as you! Time, knowledge, support, and a successful surgery really helps to change fear into sounding brave! :) I wouldn't be where I am today if it hadn't been for my faith and the support of this forum! I have had so many people praying for me during this time! God is so powerful and I give Him all the honor and glory for my recovery! Continue to educate yourself and you will see as the days go on- that you have less and less fear- and more confidence and strength. Knowledge really is power- which equals strength. So- good luck and continue to ask any questions that you have! I pray that you will be given a peace about your diagnosis!
I TOTALLY understand the feeling of thinking you are nutty! The pain in your shoulders and back are another symptom. It seems like every ache is another symptom. I just found out I have severe scoliosis(sp?) and guess what? sypmtom! ears ringing - symptom! Cold hands & feet - symptom! I mean, all these things I have told my doctor for all of these years that I have said I believed added together but noone would listen to me. Even the bathroom thing - yep - me too! One of the worse is the headaches after exertion - any type of exertion. It is really a drag to know that you have say "not tonight honey, it will give me a headache!" LOL.
Lovemygirls2 - it is so comforting to hear from someone who has had the surgery successfully. I am so afraid of either direction. Stay as I am - in pain or have the surgery and risk, well, risks. You really are very brave. Thank you.
I too share all the symptoms and no one listened...and as a child....who'd think to say it hurts when I strain.....and it's diff to think as a child to say this is wrong when it was always like that.....it appears to be normal......no one tells u...if it hurts ur head to strain tell someone...especially when ur told to keep certain things private!!.....I am glad u r getting info that can help u here.
Exactly!..............it all starts falling into place doesnt it. The bathroom thing has alway bothered me but I have said nothing - fear - embarressment. Then I plucked up the courage about a year ago to mention it to a Dr and he looked at me like I was a kook.
So I crept back into my hole and accepted anxiety yet again for my problems.
Some days my ears literally feel like I have been swimming and have water in them and they are so moist. Forgetting words I want to use is becomming worse daily and so is the neck and back of the head pain and also shoulders and by having a look in the mirror I see I have a spine that really curves in toward my stomach about half way down - is that a symptom too?I have tried to forget whats happening and get on with it until I get my MRI and know exactly where I stand but my fears and imagination take over. So if you are scared - you sure are'nt alone.
Keep getting better "Braveheart" and hope a few more of us are with you in recovery in the near future and thankyou for sharing all of your experiences because yes I agree - knowledge is power. (and the dr's wont be pushing me around because I will know what to ask because of -people like you all)
I mentioned on another post that I found Dr Marcus Stoodley - a NS Proffessor at McQuarie Uni in Sydney - also a Chiari specialist - he is on the other side of Australia to me - a 4 hour flight but I emailed him and he emailed back and offered to see me if I wanted after my MRI. I'm thinking I might be silly not to jump at the chance???? I emailed him and thanked him and am going to ask my MRI results be sent to him as well.
Warm thoughts to everyone
I have got to say....I LOVE THIS FORUM!!! hehe! Us talking about our potty issues- we are just one BIG HAPPY FAMILY!!!! I love you guys!!!! To bad we all live worlds (literally) away from each other! I would love to meet all of you guys and give a big hug! It just makes my day to get on here and see how my family is doing! As far as the potty issue- yep I thought I was crazy too- AND I thought sometimes my head was going to explode! But- I have to report- to those who are awaiting surgery- THAT has gotten better! It is still there- and the doctors said it could take several weeks for that to go away. I am cautiously optomistic- because that strain headache from the potty is the only lingering symptom post op- so I am curious to see if it will go away or if that one is going to stick around! Regardless- in the last three weeks it has gotten noticably better! So- maybe hope for the weary!
Hey Shane- so Beth said you had the swelling too? So does she remember how long it stuck around? Everyday I wake up and I say, "Trey- look I think my lump is going down!" He looks and say, "Nope- still there and still big!" hehe- I am just an optomistic person by nature I guess....nothing wrong with that! It still doesn't hurt and it's not bothering me! I have to tell yall- I watched a live webcast of the surgery that was done one me- (not my surgery- don't know if I made that clear- just same surgery) certainly not for the faint at heart! But it did help me understand why I am still having pain! Also- my "lump" is where they did the majority of the work- so.....it is understandable why I'm lumpy right now! :) Oh- I don't know that I would suggest anyone watching that surgery before you have it- BUT- after you have it done- was pretty cool to watch it! Shane- have you seen it? YOU would like it! :)
Talk to my fam later! Yall be good and I hope you have a good Sunday! God Bless!
Wanted to tell you- thanks for your kind words! I am so glad you are getting the knowledge you need so you can march into that next appointment confident. Like I said one other time- I went into my neurosurgeons office prepared to defend myself and to my surprise- I didn't have to! It is a world of difference going to a specialist! You don't have to defend yourself and your symptoms- because they know your symptoms are real! So- I am sorry that your specialist is across Australia- but if he is the closest specialist- I think it would be worth it! It is just a world of difference seeing someone that....well...just KNOWS! Good luck on your MRI- it's coming up soon now- so maybe you can rest a little easier knowing your journey toward recovery is soon to start! Good luck and I am praying for everyone on here!
I think I would travel half way around the world if I could just hear someone with the right credentials say "You're not crazy - you have this". Just the relief of hearing it said would be so worth it!
I will. I take notice here as I feel people here are the experts alongside the ones who have specifically studied this chiari thing.
Lovemygirls2 - you are right - I am collecting info to defend myself !!!!
About the surgery video- wasn't it cool! Didn't it help you understand alot of your pains! :) I actually watched it twice! I found it one night at like 12:00! It was an hour and a half- I thought ok I'm not going to sit here and watch this for that long- but I DID! I watched every minute of it! Then the next night Trey and I watched it again! Haha- I thought it was really cool! That stuff its neat- just don't like horror stuff! :) Little different!
Any word on that lump that you had on the back of your head? my boyfriend just developed it and hes going in for an MRI on wednesday to see if he will need surgery again. Today is 4 weeks since he had his surgery... Although it was scary then, idk if i can see him go through another one.
We are all scared and i was just wondering what they said about your lump.
Many that have chiari decompression surgery can develop this lump which is a collect of CSF fluid...many times it can be absorbed and it goes away, sometimes it takes meds, and some it takes procedures or surgery to alleviate this issue.
And sometimes it is the muscle , u can get a knot...so this should be checked to see just what it is.
How long since ur BF had his surgery?
From today its been 4 weeks.
But he also complained about something feeling like its "tearing" tonight.
He has no idea that im on here, its more just for my curiosity.
We will know more this week about whats going on. Just really scared and nervous for him.
He takes a shower every day and washes his head. for a while till about 2 or 3 days after he got his staples out he was just rinsing water over it. now he does use shampoo on his head.
we went last week for an emergency visit about this lump he has. but he goes for his MRI tomorrow and goes to his DR thursday for the results of his MRI. Im going with him so if he doesnt say anything about the tearing then im going to say something. He likes to be a tough guy
He got sick the other day and when he threw up he ended ripping apart his patch. So now his lump is HUGE like you can put your hand over it.
Sitting in waiting room now waiting on surgery. Keep you posted
Well it ended up being just a pin hole size hole in his patch and it wouldnt have been a problem but at some point he ripped the stitches that were there to heal the muscles that they had to cut apart. The spinal fluid got behind those muscles and was causing alot of pain and eating at his muscles.
Just left him in ICU tonight. He will be in there for 5 days because they put a drain in it to let things heal without pressure building.
Hes doing really well. The Dr said that this is how he should have been last time. Last time he was able to turn his head. The Dr also thinks that the ICU messed him up because they stood him up and they had him elevated it the bed. He should have been laying flat.
Today was hard on everyone just cuz everyone was emotional.
Oh we wont let him. I wont be around too much cuz we dont live together but he will be wearing his collar for two weeks straight and then hes only going to be allowed up to use the bathroom and to eat... THATS IT
Just wanted to give you an update...
He got his lumbar drain out today. Hes doing SO good
This is the best i have seen him since his last surgery.
He knows what he can and cannot do.
He doesnt have a lump like he did last time.
Oh and his Chiari is GONE!! well at least the tonsils have ascended back up
Wonderful news!!....Really they retracted...that is not a common thing to have happen...but, that is not the chiari, that is the result of chiari, ....chiari is the malformation of the skull that forces the cerebral tonsils to herniate.....
So his chiari is not gone, his herniation is.....which is great news!! : )
I pray he continues to recover like this and all goes smooth for him.
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