Post-surgery follow-up & recovery

[Milauran]

Hi

I realize that everyone's situation would be different and maybe some of these questions can't be answered generally but we wanted to get a sense of what the typical follow-up process involves.

How often do you have to see your neurosurgeon post-surgery and at what intervals?
How long before you really felt well enough to carry on with normal daily activities, get back to work?
For those of you who live alone, did you have to have someone stay with you to take care of you when you got home from the hospital and for how long?
My adult son has no syrinx or neurological symptoms and was described by Dr Bolognese as a simple case, (he is recommending removal of the tonsils only), does that make a difference in the recovery time?

Thanks very much for all your answers and support, it is much appreciated.

Lorraine

[selmaS]

  Yes this Dr is one of the top Chiari specialists in the states....he is at TCI in NY and was in the OR for my surgery but was not my NS.....he did doplar mapping for mine.

I am so glad u posted all this, and it helps to show that all of us r not the same, this is what I mean by that each of us our surgery for this is different and recovery will be different.....not sure I know of neone else that had a surgery like this one....but, it will be interesting to hear and follow ur DS's progress.

  Thanks again for sharing this info : )

[sunnyset]

Is your doctor a Chiari "specialist"? Just curious.

[Milauran]

Here is Dr B's description of the surgery he was recommending taken from the transcript of the consultation:

"In your case what’s encouraging, the shape of your tonsil herniation is rounded and thick, therefore they are a sizeable mass effect, so if you go in and cut and slice tonsils, you buy a lot of mileage.
Also, your anatomy does not look complicated , there appear to be no redundant posterior cerebellar arteries which need to be preserved at all costs, does not look technically challenging.
Surgery involves two inch incision in neck at the base of skull, then ultrasound, remove only enough bone  - ½ cm bone in skull, 3mm bone in cervical spine, to create window to reach tonsils.
We open the dura - the membrane between bone and skull, and then underneath, the arachnoid which contains csf, we only make 2 cm incision, any csf that is lost is replaced by the body in 24 hours, then we cut membrane to see the tonsils underneath,  first we burn outside of tonsils, they get smaller, but they are so thick, they shrink but do not collapse, then we cut the surface that is burned, burn the inside, and suck out the inside, while respecting arteries nearby, then we reach lateral part of tonsils, this is important because the pain that goes from your neck to shoulders is due to compression of nerve that is exactly here.
Another structure that is important , between the cerebellum  and the brain stem, is a triangular structure called the fourth ventrical, which has (csf) flow going in this direction, your tonsils are creating major roadblock to the exit of the fluid out here, so the goal is to cut tonsils until you can see the fourth ventrical which promotes csf flow, then close the dura, incision so small, no duroplasty needed.

Surgery takes 3.5 hours, hospital 5 days, 2 days in ICU. Botox & pain medication are given and something to prevent brain swelling. You sit up in the chair right away, walking up stairs before leaving hospital."

I guess what he meant by simple is that that it would be only tonsil removal, no duroplasty, minimal incisions and pretty straightforward based on his anatomy

Thanks for providing information and your own experiences, it's very helpful in gaining some kind of understanding.
:

[linnielou232]

Welcome to the forum, but so sad to hear about your son.  I wish you the best.  We all know how confusing this is and how scary, but please let me assure you that you have found the best site ever.  You will get good direction from each of us because we have all been through this journey or for some just starting out.  I am now 20mths post op and I agree with everyone.  We all recovery differently and we have all had different issues to deal with.  I'm still recovering but for me it was due to having to have 4 surgeries in all because of my own body.  My tissue in the head wouldn't except the stitches so I kept having CSF leaks.  I do stress as everyone else has above your son will need help when coming home.  The chair in the shower was a blessing and having family around to help.  Also something that to me is very important is the lifting, bending, straining after surgery.  I still can't lift anything over 15pds, and sad to say my NS recommended me not to go back to work, but every one is different.  If you asked me do I regret surgery. "No".  It's been a long journey, but I'm now back to some things I enjoyed before surgery and couldn't do.  Having surgery isn't a cure, but it does help tremendously with the relief of pressure.  Ask the NS if your son can have a full flow study done of the spinal and as Selma say's as for other test that are important to know before having this surgery.  It is major, but also it gives relief.  Just know your not alone and we are here to help as much as we can..Wish you and your son the best in this journey for a better tomorrow.
Linda :)

[sunnyset]

Hi. Like Krystall mentioned I can only tell you about my experience.

I had a syrinx but no neurological problems. Just headaches, but nothing I would consider as "major" as others on this forum.

I had my surgery on Feb 8. I had a craniectomy, laminectomy and duraplasty performed. During my hospital stay (I was discharged on the 11th) I did not have any pain aside from stiffness in my neck. About 1 1/2 weeks post-op I met with my NS again to remove the dressing and to update him on how I was feeling. I will see him again in May when I have my 3-month MRI done to see if my syrinx has shrunk/if my brain has moved up/csf flow has gotten better.

My husband was able to stay with me during my recover so I had help. But honestly, I was very independent about 2 weeks post-op. It was very nice to have his help at all times, though, as I tried not to carry anything heavy (over 10lbs).

I am going back to work tomorrow and am looking forward to it.

Hoping things go well for your son.

[selmaS]

  Hi...I too am confused with the verbiage simple case....

I also do not understand only the removal of the tonsils....they have to open the  dura to do that , so that entails a duraplasty...now mayb he meant no lamenectomy was needed...(shaving of theC1 and C2 vertebrae....

He may also mean there is no overcrowding....and that is another problem, he may also not have Ehlers-danlos....and other related conditions making this simple in that regard.

Again as Krystal mentioned it does not make this surgery or the recovery simple this is still a major surgery.

  And as for how long it may take, it all depends on how he responds to the surgery and the meds....

then going back to work, that also depends on what type of job he has, and what he duties r.

I would say if he lives alone he should have someone there for the first 2 weeks....and even after that he will need some  help....so as much time as he needs....

A full recovery of the nerves can take up to 2 yrs....the scar may heal in a few weeks, but he must take things slowly and not rush....we all tend to feel great immediately post op, but as the drugs used for surgery wear off, some symptoms can reoccur......

   As Krystal mentioned, many members do have a journal with their surgical  experience posted...u can get to the journals by clicking on the names of the member and going to their profile page.

   "selma"

[deadmemory]

Hello there!

All I can do is offer you my own experiences of post op chiari surgery,

I am a little over a month post op (I posted my operative report in my journal, feel free to read it if you want) about 12 days post op I formed a pseudomeningocele (its the most common complication of this surgery) my post op appt was scheduled 2 weeks after surgery (for suture removal and wound inspection) and to tell the surgeon how you're doing.. then about 3 months after my surgery my NS wants to see me again for a follow up MRI (to see if the csf leak has sealed on its own and to see if there isn't anything else going on) I was in the hospital following surgery for 6 days total.. the first night being in the ICU..

I'm not sure what Dr. B means by your son having a "simple case" in my opinion, Chiari malformation is very complex.. unless he meant his surgery would be simple. Nontheless, it is still brain surgery... he will need to have someone wth him while he is recovering at home as he will not be able to lift anything that is greater than 10# and he will need some assistance bathing.. the hospital I was recovering in following surgery suggested getting a plastic chair to put in the shower.. and it is also recommended that post surgery you use a baby shampoo and not to wash hair frequently as it is drying to the incisional site. I was also sent home with a walker which was very helpful. Your gait is a little unsteady after surgery..
I still need help doing some things ( I still cannot lift anything greater than 10#) and I fell while getting into my bath tub last night, so I am still going to need assistance getting into the bath tub safely.

Its hard to say how you're son will react to surgery. Some people are able to be more independent and get off the meds 2 weeks post op and then there's people like me who take longer... did your son have other potential underlying medical conditions ruled out? For example, sleep apnea? There are others but they don't come to mind right now, our Chiari forum leader SelmaS would be able to specify the medical conditions that should be ruled out before proceding to have surgery.

I hope everything works out well for your son. Adult or not, I'm sure its very stressful for you. I commend you seeking answers and advice for your son :) also, welcome to the Chiari forum :)

Respectfully,
Krystal