Patients View of Decompression Surgery and Recovery

General
1

What is a Chiari Decompression Surgery??

This is a subject that I'm not to fond of, but it doesn't scare me. After you read this you may think I'm either lying or just plain nuts not to be scared of this surgery. I have good reasons not to be scared. No one in recent history has died from the decompression, there are some that have died due to other illnesses and complications from them. I know nothing is 100%, but this is very close. That is why I'm comfortable with the surgery.

Decompression is not a 'cure' for Chiari. It could make all of my symptoms go away, make some go, or cause more symptoms. I have thought about the risks of the decompression and they don't compare with my desire to have my life back.

The surgery sounds more complicated than it really is. I'll be placed under general anesthesia and positioned face down. A small area in the back of the head is shaved and prepared for surgery (I'm ready for that right now!). An incision will be cut down the back of my head and neck. A small area of the bone at the base of the skull is removed to enlarge the posterior fossa. The area is opened to expose the membrane covering the brain called the dura. An incision will probably be made in the dura to see the cerebellum and upper spinal cord. The cerebellar tonsils are shrunk using a tiny instrument, called the electrocautery. A patch is then needed to cover the area that is now enlarged to 'house' the cerebellum. There are several different types of patches: your own dura stretched, donor dura from a cadaver and others. None of these will be my patch. Until my neurosurgeon told me what type of patch I will have I didn't know about this one, I'll be patched with the lining of a cows heart (no jokes please!). This is a little strange for me, but I will gladly accept that patch. The incision is then closed with sutures below the skin and sutures or staples, I'll have sutures, on the skin.

The procedure generally takes 2-3 hours. The patient is usually awakened in the operating room and transferred to the recovery room for close observation. The hospital stay is generally from 3 to 5 days. The sutures or staples will come out in 7 to 10 days after surgery.

Recovery from Decompression Surgery.

All of this is up to the patient, the doctors, and the severity of the Chiari. The severity has little to do with the millimeters of herniation. Some Chiarians I have read about have had a speedy recovery of a few months some take a year or so.

I recovered quickly. I did not counting on getting up right after surgery and walking away with little need for help.

Pain in the neck was the worst problem. My neck was very stiff, but that was mostly gone by the one month mark. I have moments where I get a bad headache, but people have headaches everyday. I have not had a headache that was as bad as before the surgery.

2

Very informative Abby.
I would like to add that during the recovery it is very important to be honest with the neurosurgeon and yourself about what you are feeling. IF something you feel is wrong please contact the neurosurgeon's office. Still keep track of your symptoms so that they can be discussed at follow up visits with your neurosurgeon.

The more communication the better the care and the better the care the better recovery

3

Abby,

You didn't write this, did you? Have I been gone that long and didn't know you had surgery?!

Carla

4

I am having decompression surgery next week...9/14/12. My surgery will consist of Sub-Occipital Craniectomy (the removal of the portion of the skull to enlarge the area around the spinal cord) and a C1 Lamiectomy (removal of the 1st cervical vertebrae). My NS said I would not need the Duraplasty or Tonsillar reduction. Do you know when Duraplasty/Tonsillar reduction is done...is it when a Syrinx is found?? I have heard that the surgery can be done either way...? Im a little confused...any comments welcomed!!

5

Hope all goes well with your surgery,I'm interrested to hear how you do.I will have mine Oct30th have to go back to my ns he will explain more to me then. It's scary and exciting at the same time.Good luck to you.

6

I had a duraplasty and had my cerebral tonsils cauterized. I had a syrinx. It has to do with the amount of space that can be made to open up the blocked csf pthway. It really depends on your situation and your doctor. I think sometimes doctors try to stay on the conservative side and sometimes that is a good thing. I have read that some people have their first surgery w/o a duraplasty and then years later have to have another one with a duraplasty to correct the futhur ascended tonsils. Your surgeon, if knowlegable in Chiari, will do whats best. Good luck and please keep us posted. If you have any questions on what to take to the hospital etc, please feel free to ask. Us post op Chiarians have lots of tips to share.

Nicole

Gina F said:

I am having decompression surgery next week...9/14/12. My surgery will consist of Sub-Occipital Craniectomy (the removal of the portion of the skull to enlarge the area around the spinal cord) and a C1 Lamiectomy (removal of the 1st cervical vertebrae). My NS said I would not need the Duraplasty or Tonsillar reduction. Do you know when Duraplasty/Tonsillar reduction is done...is it when a Syrinx is found?? I have heard that the surgery can be done either way...? Im a little confused...any comments welcomed!!

7

Good read! I am not scared of the surgery, only the anesthesia part... My NL asked why I'm so eager to have brain surgery. I told him I'm not eager for surgery, I'm eager to get back to my life! Hopefully someone soon will help me find answers and help me move forward with this, whatever path needs to be taken.

Katrina W.

8

I hope your surgery went well. Where did you have it? I hope you have a smooth recovery.

Gina F said:

I am having decompression surgery next week...9/14/12. My surgery will consist of Sub-Occipital Craniectomy (the removal of the portion of the skull to enlarge the area around the spinal cord) and a C1 Lamiectomy (removal of the 1st cervical vertebrae). My NS said I would not need the Duraplasty or Tonsillar reduction. Do you know when Duraplasty/Tonsillar reduction is done...is it when a Syrinx is found?? I have heard that the surgery can be done either way...? Im a little confused...any comments welcomed!!

9

Thank you for the uplifting story. My 4yr. old granddaughter was diagnosed in August and all I have seen on the internet are horror stories. I am in need of seeing some successful results. Her surgery is scheduled for Nov. and I am scared to death!

10

I just had Chiari decompression surgery on the 28th of Aug, and had two rods with screws fixating C1,2 and 3.

So far I am doing well.

11



hatchjo sa

I am having decompression surgery next week...9/14/12. My surgery will consist of Sub-Occipital Craniectomy (the removal of the portion of the skull to enlarge the area around the spinal cord) and a C1 Lamiectomy (removal of the 1st cervical vertebrae). My NS said I would not need the Duraplasty or Tonsillar reduction. Do you know when Duraplasty/Tonsillar reduction is done...is it when a Syrinx is found?? I have heard that the surgery can be done either way...? Im a little confused...any comments welcomed!!

12

I fell last August, hitting the back of my head. About 8 weeks later, I started getting headaches, behind my eyes. Then pain behind my head. For 10 and a half months, I had a 24/7 headache from hell. I was shuffled from one doctor to the next. I had all kinds of treatments, saw neurologists, neurosurgeons, headache specialists.....you name it.

Finally, in desperation, I went to the Chiari Institute in Great Neck, NY.

Dr Rekate looked at the same MRI I had been dragging around and showed me WHY I had the headache.

Apparently, when I hit my head, the ligament that holds my C spine erect was damaged. The result was that my C spine fell backward and pushed into my brain stem. My brain stem, in turn, pushed my hind brain back, and down, causing a Chiari situation. My cerebellar tonsils were 5mm down into my spinal canal.

I was not born with Chiari.

On August 28th, I had a 6 hour surgery. Dr Rekate did the decompression surgery. He did not open the dura of my brain, said it wasn't necessary. Dr. Latefi put 2 rods and 4 screws on C1, 2, and 3, to keep my C spine straight, and get it out of my brain stem.

I am 3 weeks post op, and I get better every day. I get tired pretty easily, and my neck hurts, but I am off all narcotics, and I am able to walk the dog around a couple of blocks a couple of times a day.

I just went out to dinner for the first time.

I am hopeful that I am getting my life back, thanks to Dr Rekate.

13

So I am 2 weeks post op today from my decompression surgery. It has been quite a ride...I am unable to take narcotic based pain meds or high dose anti-inflammatories because they make me so sick; thus, the pain has been considerable. At this point I am waiting for everything to heal before I expect any miraculous results.

As far as the surgery itself and the hospital stay...everything went well. My NS said I had a tremendous amount of scar tissue that had built up in addition to the Chiari that was contributing to extreme pressure. My surgery was done at Sierra Vista Hospital in San Luis Obispo, CA by Dr. Phillip Kissel. The hospital staff and facility were great...very clean...attended to my every need.

My incision is healing very well...no staples to be removed...I have stiches inside that will dissolve. I have had alot of head and neck pain since surgery, but I contribute that to not being able to take pain meds! The incisional pain decreases every day and I am able to move my neck in all directions a little more every day. I go for my 1st post op appt next Wednesday... I'll know better by then how everything is coming along. I will update after my appointment.