Severe, chronic, pressure headaches 4 years after decompression surgery

[ChiariMom121713]

My 15 year old daughter had decompression surgery 4 years ago.  Since then she has dealt with headaches these past 4 years but has been able to live a normal and active life up until this past november 2017. The headaches started to get worse and every day.  She can only describe them as extreme pressure in the back of her head.  She has missed a lot of school and has only made it to three of her volleyball practices.  Doctors have tried everything- meds, steroid shots, surgery on the scar where they  harvested her pericranial graft, migraine cocktails, physical therapy, hospital admission with IV's. Her surgeon told us the decompressed area looks beautiful and sees no reason why she should be having headaches.  Her headache specialist told us he doesn't know what else to do!!  Is there anyone out there who has had a similar experience?  We are at our wits end.  This is no way for a 15 year old girl to live.  

[ZipperHeadHabits]

Wanted to share this as qwell, I know it has been a while, but these are post op risks specifically for Chiari Surgery. Ill see what info I can gather and if I find anything, I will gladly share.

Specific Chiari Malformation Surgery Risks

Depending upon the treatment you receive, there are  specific Chiari malformation surgery risks. If your surgeon is performing minimally invasive decompression surgery, the risks are generally reduced compared to traditional decompression surgery. Because of technological advancements, the surgeon can make a smaller incision and use microscopic visualization and specialized instruments to perform the procedure and may avoid the need to place a patch.

Cerebrospinal Fluid Leakage

The first specific Chiari malformation surgery risk is the leakage of CSF. This occurs if the surgical repair of the membrane that covers the brain is not watertight. When this happens, the cerebrospinal fluid leaks out from the intracranial and intraspinal spaces, decreasing the pressure within the skull drops and can lead to headaches, nausea or clear fluid leaking from the ear, nose, or surgical incision thereby increasing the risk of infection.

This condition may resolve, without surgery, as long as it is confined to the space under the skin. Sometimes your doctor will have you drink more caffeine to help resolve the leak, and some patients may require a period of bed rest.

Hydrocephalus

The second risk is essentially the opposite effect, where the pressure within the skull builds up because there is blockage of normal cerebrospinal fluid flow, a condition known as hydrocephalus. This can occur on a temporary basis, as a result of post-operative inflammation and is typically managed nonsurgically until it resolves. Persistent cases of hydrocephalus are treatable with a procedure where the surgeon places a shunt to drain the fluid, relieving the pressure. This is similar to the CSF diversion procedure.

[ZipperHeadHabits]

I am so sorry to hear about your little girl. I am a Chiari patient myself, I started having severe symptoms when I was about her age. What I relate it to is stress. Physical Stress and Mental Stress. Over exertion and straining of body muscles, even in the legs or arms, can cause severe headaches. I couldn't laugh, if I did it felt like my brain was going to pop out of my head and that I was going to have a stroke (which had happened). If I were to focus too long on school work, my headache would come back, if I had a laugh with my friends it would bring me to my knees, if I tried to run the mile, I felt like my brain had been scrambled like eggs. Lifting, moving, reaching, practically everything in a normal life can alter the pain and headaches of chiari, before and after surgery. Some post-op patients report no changes whatsoever after surgery, which is very unfortunate, and I hope is not your daughters case. I currently take muscle relaxers (Cyclobenzaprine) and pain medication (Tramadol) and anxiety medication (Lorazepam) as a cocktail for pain relieve. Unfortunately, sometimes it doesn't help at all, but most times it gives little to a large majority of relieve back to me. I was also given Gabbapentin from my neurologist and take 300mg twice a day for nerve pain. It seems to help for the most part. Once again, I am so sorry about your daughter, I feel her pain and know what she is going through. Quiet spaces, relaxation, meditation, these all need to be brought into her life and taught as pain remedy and stress reducer. Sometimes the relief comes from within and not from outside. Sending all my live and healing prayer to you and your daughter. I hope her pain ceases and she can live a happy and full life of smiles and love!

[ChiariMom121713]

Hi!!!  thank you so much for responding.  I'm so sorry for what you are going through.  Seems like you've been through the ringer.  The funny thing with my daughter is that stress and physical activity never affected or caused her headaches.  Playing volleyball always seemed to help.  She tends to have her worst headaches when she wakes up in the mornings.  We just got a 2nd opinion from a neurosurgeon who specializes in chiari and he said that her decompression area looks fantastic and that we had a very good surgeon.  He sees no anatomical reason why she should be getting these pressure headaches.  I feel like there is a piece to this puzzle that is missing.  Maybe its not chiari related at all??  Nothing the neurologists or the headache specialist have tried have worked.  Were being referred to a neuro ophthamologist to check for intracranial pressure.....it's always another doctor and another test......ugh......Thank you again and prayers for you that you have the strength and courage to deal with your pain and chiari and your doctors find the right remedy for you.  

[selmaS]

Hi and welcome to the Chiari forum.

We are all different in how long it takes to get back to a "normal" life...and it is possible that her atcivities are too much for her right now.....she needs to listen to her body.....the volley ball could be a strain and if she is not fully  healed....that could be part of it...also keep in mind surgery does not cure or rid her of the Chiari....and she may continue to have some symptoms....but the activites she chooses to do can also affect how he feels...

I know it is not easy for a 15 year old...but it is not easy no matter what our age is..we all have to find a new patch to follow....our lives can not be the same as it was ...we have no "normal"....

[ChiariMom121713]

Hi Selma!!  Thank you for responding.  I'm so sorry for what you are going through.  You are right in that the chiari seems to affect everyone differently.  I think your right, we just  need to find our "new" normal.  Best of luck to you and much good health!!

[selmaS]

You are welcome and I hope my comment has helped somewhat....even tho I am sure you are  saying what do we do now?...It may take time to figure it out....
Headaches can continue to be a issue and be less frequent as time goes on.....the more active we are the more we may have the issues...but it could be due to healing...especially if she didn't have those issues prior to surgery.....There can be post op "side effects" and many rush to test for IHP and then offer to shunt....this is one thing I would stress to slow down and wait on....and make sure any increase of pressure isn't due to the surgery itself or a dura patch....deep breathes and take your time and have testing done....but do look at every possible issue and solution....good luck. and keep us posted.