Surgery

[Kateums32]

Hey everyone!

I just found out yesterday I will be having surgery in less than a month. What can you guys tell me about the surgery? What can I expect?

Kate

[selmaS]

  There is a difference in having a NS that knows how to treat Chiari and a Chiari specialist....a specialist does research and his whole practice is based around Chiari and Chiari related conditions, so they tend to have more experience and understand how related conditions can affect us too and they rule them out b4 u have surgery to help avoid set backs.

The thing is, u do not have to feel like that , u may have a underlying condition related to Chiari causing how u feel....I would suggest u go to a Chiari specialist for a 2nd opinion....not having the surgery would not have answered ur problems and u could be feeling the same u r now....or worse....so do not 2nd guess ur surgery,. but find the right Dr to help u now.

[lettly]

I have had headaches for 10 yrs along with trouble swallowing always in pain balance memory . everything that was going on before surgery are still there and the pain in my head is not the same pain . add to I have no taste buds and my mood are all over the place and these are things that were not there till after.my spine hurts all the time now. my dr is a nero surgant . when I left the hosp. they gave me 5 pain pills and told me to use Tylenol my stitches out 10 day after. all I know is they took c1 &c2 a part of my skull and put some kind of cover over it and closed up. I really cant remember . I rest I walk around my house as much as I can I get really short of breath. what the dr said was he did it to make room so I could have flow . I understand that but had I knew I would feel like this I don't think I would have done it. because right now I just don't see the benifet

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u r feeling worse, may I ask what symptoms u have b4 surgery and what is worse, is it pain or symptoms?

  Also is it worse when u are upright?

So no pain meds post op? Or at this point post op?

Have u had ur stitches or staples removed?

What all was done during ur surgery...laminectomy, dura plasty...

Also what have u been doing post op?

May I ask who ur Dr is and is he/she a Chiari specialist?

[lettly]

I had surgery Dec 4th 2013 and let me tell u the first week were the worse. I can get around more but still in a great deal of pain. and it didn't fix anything. and my dr is one that will not give u anything for pain. he says well u have been in pain so u should be ok

[pdxmomof3boys]

It's so interesting that your daughter was diagnosed with a problem with her ulnar nerve-- so was I! When I was her age, I was also told i had tennis elbow and juvenile rheumatoid arthritis, because no one knew what caused my pain. I didn't have MRI until I started to have asthma symptoms and had been coughing constantly and having horrible headaches for 6 months. The severe coughing seemed to be the trigger/trauma for me. It must have been for her, too. Bronchitis does cause quite a bit of coughing. I am 31 now, and really wish my doc had found something when I first started showing those neurological symptoms in my teenage years (14, actually). Best of luck! It is very frightening to have it, I can't imagine one of my children going through this. I have three little boys of my own, that I pray every day don't ever have a symptom. You have my sympathy and my prayers!

[selmaS]

Well it could have just been the stress itself that made her prone to the trigger.

I only wish I could have found these drs when I was ur DD's age.....it took till I was 48 to get a dx.....and had issues all my life.


Do keep us posted on ur DD's progress, I pray all goes well.

"selma"

[ULMMom]

No not that we could think back to one. She just was really sick from bronchitis and she was so stressed with being away from home, college, being sick and soccer. We can think of nothing. When her back started hurting my 15 year old jumped on her back for a piggy back ride and jarred her back. He is 5 9 and 135lbs so we just thought he hurt her. So nothing our doctor said she is the age where he sees onset at.

[selmaS]

Glad to hear u have a good dr..sounds like he will be checking for TC and or a syrinx.

......after ur DD's surgery, please add ue surgeon to our specialist thread here on the forum...we r always looking for good chiari drs and only add drs to the list after someone has been to them and liked them.

I pray ur DS does not have this , but getting the MRI is a very good idea, especially with his symptoms....the younger they r the better they heal.

So, ur DD didn't have a fall or in an accident recently?

Just wonder what triggered her chiari to be active.

"selma"

[redkim]

I had surgery in Jan, and I don't regeret it.  You feel like an old person for a few weeks.  The meds were rough on me, but I switched to tylenol xtra strength after two weeks out of the hospital and that cleared things up and helped with the pain.

[ULMMom]

She has never had headaches. She is going in for another mri prior to the surgery he wants one of her spine. He is extremly deligent and seems very versed in all Chiari. The symptoms  came on extremly quick. She is a high level athlete so there was always aches and pains. She did start last spring suffering from pretty severe back pain which we figured she had injured herself. So it could have been she had symptoms but we just pushed it off to soccer related aches. The funny thing is my son which I have not test who is 15 seems to have more symptoms then Marissa. He has always had hand tremors insane headaches and consistant back pain. As soon as she gets past the surgery I am sending him in for Mri. As a single parent I am trying to wade through the unknown and there is allot of info..

[selmaS]

Hi and welcome to the Chiari foum.

Yes indeed u were lucky indeed to get such a quick dx and scheduled for surgery.The younger u r when u have surgery the better.

It sounds like ur DD developed symptoms rather fast as well....may I ask did she have a history of HA's?

Do u know if she was checked for a syrinx or tethered cord? ...or other related conditions?

I pray all goes well for ur DD and please keep us posted on her progress.

"selma"

[ULMMom]

Well October has been a whirlwind for my 18 year old daughter. She went off to college in early Aug. She is on her college's soccer team so she was there for boot camp. She left with bronchitis so she tried to train and was unable. After 6 weeks the doctor cleared her to train. Her first day to train she had a blinding headache and her right arm was numb. So they benched her again. After a week she resumed no headache but did have dead arm. Went back to the doctor he told her it was her ulnir nerve (funny bone) and she could continue to play. Since it is Div 1 they train 5 days a week with weight training. About 2 weeks later her toes went numb. Her trainer said go home see a nl. I got her in the next day. The doctor was great and said he was stumped. He said since she had o go back to college he scheduled mri of neck and brain. She went back to school and got a call 4days later. Doc said she had a low hanging brain and was referring her to a ns. I tried looking up low hanging brain and could find nothing. When the nurse called to schedule the appt. I said can I have the grown up dx and that was when I found out it was Chiari 1. We had to wait 2 weeks to see the ns. In those 2 weeks Marissa has been vomiting and blinding headaches and inability to sleep. Went saw the ns who scheduled her for surgery the 10 of Nov. I can say I have yet to breathe. I cry randomly and cannot imagine the future. Marissa believes she will return to play competitive soccer by fall for her college and I hope!!!
I have read of athletes continuing life better then before! I just has know life has no guarantees. I just feel bad when I read of people going years and years with no dx. So I feel blessed the doctor knew immediately and was proactive. I will say there is allot of info. I found a great video on youtube that Marisa watched that a girl made to explain the condition and surgery. It helped her understand and be a little bit prepared.

[sissy114]

Hey, I had surgery 5 mo's ago and I must be one of the lucky people. I had surgery on
Tuesday, went to room Wed. around lunch and by Thurs. morning I was walking the halls
with support of my husband. I never got sick and don't remember being in much pain. I
went home Fri. I guess the worst part was feeling like I had a statue head and trying to get comfortable to sleep. That didn't last too long and I am much better now and it seems
like it was much longer than 5 mo's ago. I hope that you will do as well as I did. I wish that for everyone who is going to have this surgery. I will keep you in my prayers.
Good Luck!!!

[lilpuddlejumper]

I had the surgery 5 weeks ago. I'm not going to lie to you and tell you recovery is easy. The first three weeks of recovery, I think I'd have rather been dead. I think the biggest problem though, was the meds they put me on were way too strong for my system, so I couldn't hold down any food or liquids. I slept for probably 20 hours a day, and was only awake to give myself the pain and nausea meds.

The good news is, 5 weeks later, I'm feeling great. Still not up to what I was before the Chiari symptoms, but am free (mostly) from the extreme headaches and nausea. It's a pretty slow recovery. Just get a lot of rest after the surgery.

[Shane99]

Hello, and congrats about getting your surgery scheduled!

Everyone is different, so I can really only give you my own experiance and tell you what I've seen and heard from others.

I had the operation on a Tuesday. I was pretty much out of it till Wednesday. Wednesday and Thursday, I'm gonna be honest, were pretty bad. They gave me pain pills, but I was still pretty miserable for a couple of days. Thursday night I was able to sit up in a chair. Friday they moved me out of ICU to a regular room. Saturday I came home.

The first couple of days at home I was able to get from bed to the couch or bathroom, but mostly just stayed in bed. My sister is a nurse and stayed with me during the day so my wife could go back to work. By around the 3rd day home I was able to stay by myself and make a sandwich or warm something up in the microwave.

The first couple of weeks were pretty rough. At first I was doing pretty good, but then I caught a bug and got sick (lowered immune system). Let me tell you, vomiting after brain surgery is BAD!

On the other hand, I've introduced two people on these boards to my doctor and they have both had the operation - and of course both of them recovered faster than I did :).

Normal recovery time is 6 weeks. That's not to say you'll be all better, that takes over a year, but after 6 weeks you should be feeling well enough to go back to light-duty work and have a semblance of a normal life.

[Dawn1214]

Hi Kate,

I haven't had surgery so I really can't answer your questions but Shane has had surgery and he will be able to answer all of them for you.

I wish you so much luck and please keep us updated on how you are doing and feeling while you are waiting. There are a lot of great people here with a lot of knowledge and support.

Dawn