Chiari Online Support Group

Surgery on Friday oct. 28th please help!

Surgery on Friday…please help
Hello friends,
I was diagnosed with Chiaria malformation type 2 almost 10 years ago and have been putting off surgery as the drs said only do it if I can’t live with symptoms anymore. Now I can’t cough, sneeze without getting migraine pain that lasts longer and longer and now when I bend over my face goes numb, I have sleep apnea and my hearing is going and I have horrible tinnitus. I also have cold sensations in my left leg and right eye at times as well. I have very little CSS fluid in the top of my skull. The surgery will remove a piece of the bone and take away some of the bone from my top two vertebrae. I have two young kids and am completely freaked out about this. Can you please give me advice as to what to expect and what to take with me? I ordered one of those pillows that has a dip in the centre. I have heard that you wake up with the worst headache of your life and that you throw up for a while. I heard that you also have to watch out for menengitis and get some physiotherapy. I am trying to prepare myself for the moment I wake up as I am very anxious about that and what I will be feeling, and what I can and cannot do.
I am an anxious person to begin with and have dealt with cancer as well so I am really not looking forward to this. Your advice would be so appreciated. Thank you.

Hi Elsie:

I have heard good things about recovery after surgery. I know you will do great and feel better after your surgery. The surgery sounds worse than it is. The surgeons have it down to an exact science

I will pray for your quick recovery.

Peter

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I didn’t wake up with worst headache- they give you painkiller! Not sure if the pillow with the dip is good or not. Ice packs are great!!! Meningitis is a possibility if there is infection. Haven’t had PT either. You will have no desire to move your head back and forth initially- you just move your head and shoulders. You will benefit from a recliner to lie on; soft squishy pillows are great! A “reacher” tool is also very helpful- you can find at Walmart. No lifting over 5 lbs. so you’ll need someone else to handle the kids. Try to relax and you’ll be fine!! Make sure to get a prescription for nausea for when you get home!! There are dissolvable ones so don’t need to take water with them. Have pudding, apple sauce, jello and other soft foods for help in getting big pills down. Your throat will be raw from the endotracheal tube. Be prepared to have trouble peeing at first and you’ll probably need to take a laxative- takes a while for those things to start back up.
Prepare to rest rest rest!!! You will be napping a lot!!! Good luck!!!

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Thank you, Peter.

Hello
I have had decompression surgery in 2005. I do not remember throwing up or a migrane I remember my neck feeling tight and throbing but it was not bad. I had simular symptoms before my surgery and all is great now. I get some pressure in the back of my neck sometime but not bad. I had my C1-2 shaved down and a patch put in to hold my cerebellum up. You will do great have faith in the doctors and have faith in yourself you will do great I will also keep you in my prayers.

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i had decompression surgery on the 25th July 2016, I did not wake up with a really bad headache. if you have good doctors they will give you pain relief until you are capable to with stand it. I was on strong meds for the three days I was in hospital, they continued for around a week after going home. I feel lots better than before and like you my headaches were beginning to worsen. I cannot say my pain was in the same degree as you, however I feel it was the best thing ever waking up without the feeling of your head exploding. other people don’t understand how different the pain is from a normal headache. who can say? it has worked for me for now, I still get headaches, tinnitus and unbalanced at times. it is down to you Elsie, trust in your own instincts. all the best x

Thank you so much!!!

I had surgery on Oct 5th 2016, I did not wake up with a bad headache and didn’t feel like throwing up. Ice packs or hot packs will be helpful and they will provide you with them at the hospital as well as pain medicine. When you get home the best thing to do is rest and they will be sending you home with prescriptions for pain relief, muscle spasms…most likely they will have a nurse and possibly even physical therapist go to your house. I hope all goes well for you.

Thank you!!!

Ok … I’m typing for the first time since I had my surgery last Friday. Boy has it been rough. I was left alone in the icu and started vomiting and aspirated it into my lungs and now have pneumonia. They have given me so many antiobiotics that my gi system has refused to process anything and so I am heading for the bathroom every half hour. Pain in head and swelling is noticeable and when I cough it feels worse that before surgery. That’s what I am worried about… things seem much worse now that I have had the surgery but the drs say that I have to build up my cerebral spinal fluid again. I am not able to eat very much either so I am weak and still on an IV. I keep saying that it will get better but right now I fell AWFUL. For those of you who have had the surgery, how long did you take to feel normal after your surgery? The surgeon said that my cerebral tonsils were wrapped around my c1 and c2 vertebrae. She had to cauterize the left one in order to help nudge it up a bit. I am feeling more pain and stiffness today in my head and neck than I did before. Can’t wait to go home! Take care!

I am so sorry to hear about that complication…I hope you start feeling better soon. I had the surgery on the 5th so I can’t say how long before you get better or feel better after surgery as I still haven’t been cleared by my Dr. to certain things that they restrict after surgery. I also had a complication although mine was due to allergic reaction or so they say as I’ve developed a rash but at least I’m home. The pain and stiffness will decrease over time…they have you on a anti inflammatory medication I assume. Also for the stiffness ask for either hot or cold packs those helped me as the muscles are what is stiff and causing more pain plus your body is trying to heal and on the outside it may look better somewhat healed but internally it may take a little longer.

Thank you. The surgeon does not advise an increase in my pain meds for the
reason that it can cause horrible rebound pain when going off the meds. So
I am trying to do relaxing breathing as I notice the inter cranial pressure
increases as my heart rate rises. The surgeon also said that my cerebral
tonsils extended down to the second vertebrae and when the laminectomy was
performed that they could see the impression of the c1 and c2 on the
tonsils so it sounds like there was a fair amount of pressure. Awful. I am
just trying to make it hour by hour…
Ugh!
Are you still in pain?

Not to bad but still in pain. Hopefully it will be less in time I’m hoping also its my muscles since I’m on restrictions until my next appointment in 2 weeks.

I happy to hear success stories I am going in a few months hopefully in February. These stories are making !e less stressful and less nervous thanks everyone.

Hello everyone,
Well I am finally not wanting to throw up everyday and don’t have the constant headaches that I had after the surgery. I feel much better now and the change happened at the 8 week mark. Also I sleep now almost sitting up as I was getting a pooling of fluid under my scar. If I sleep with my head down on one pillow I wake up with a terrible headache! I still have part of my scab which I am wanting to tug off but won’t. I get headaches at the slightest change in barometric pressure now. I don’t get migraine pain now when I sneeze or cough so that’s good. I get my MRI to check things at the end of January. My hearing is a lot worse now and I still have the tinnitus… darn! Did anyone have their tinnitus go away eventually?
My surgeon hasn’t told me anything about what I can or can’t do in terms of lifting. I am trying not to lift anything heavier that a large milk carton and have told people that I can’t have wine or alcohol for 6 months as I read that somewhere and don’t want to mess anything up.
Can anyone please tell me what their surgeon warned them not to do or encouraged them to do?

until your follow up appointment what i was told is no lifting anything heavier than 5lbs no bending/twisting.

Thank you. After the follow up, what were you told? I get pounding headaches when I bend over still… and it has been over 10 weeks now.
Thanks!

I had surgery on Oct 24 and am just now feeling like a human being. I had several complications - asceptic meningitis(allergic reaction to the anesthesia) and then bacterial meningitis and then a pulmonary embolism. If I slept wrong I would wake with a hideous pounding migraine. I had to sleep propped up for 8 weeks, then I transitioned to using a travel support pillow for sleeping for a week and now I sleep normally. I still can’t bend over without some issues and my Neuro recommended waiting 12 full weeks before bending over. I was pumped full of anti nausea after surgery to prevent vomiting. I recommend anyone with surgery coming up to ask for lots of anti nausea meds. Vomiting can pull the surgical site and create leaking and pooling of fluid at the incision. The anesthesia can make you vomit and also the surgery occurs right at the control center in our brain for vomiting. My surgeon is a Chiari specialist and considered one of the best west of the Mississippi. I trust her completely. One of her primary concerns was making sure there was no vomiting after surgery because of the stress that places on the surgery site. I am also still restricted on how much I can lift. I can lift up to 10 pounds. I have another follow up in January and then one last follow up in April. What my neuro said was that this surgery basically gives you the worst case of whiplash imagineable. I didn’t wake with a headache but sure felt like I had whiplash. If it hadn’t been for the complications, my surgery recovery would have been easy.

Thank you Tunner Girl! I am sorry you had so many horrible complications! I
had pooling of fluid under my incision from weeks 5-8 and then I decided
that I should sleep propped up and the pooling, which happened in the
morning, went away. I wish there was a list of things to do and not do that
the surgeons would give you. I won’t have any alcohol, even champagne for
New Year’s Eve as I am scared to mess up my brain. I think the pressure in
my head is still pretty bad but I don’t get the numb face or headaches
after I sneeze anymore.
How long does it take for any swelling to go down? I still have a tiny bit
of scan on my incision site and it had been about 10 weeks now?!
When can the CSF flow start to get better?
Does anyone else still get pounding in the head when they strain in the
bathroom now after they have had the surgery? Is that not supposed to go
away?
Bending over to pick up something from the floor gives me a headache too
and it frightens me…
Thank you to all who have answered and I would love to hear from anyone
else too who has had the surgery. How long does recovery take and does it
ever really get better?
Thank you so much and wishing everyone a very happy and healthy 2017!!!

Have you asked your surgeon about the pooling under the incision? That was something I was told to watch for as it meant a leak in the incision that would need to be repaired. Just curious.