My 18 yr old son has been in the process of consulting with different NS's for his Chiari. We took him to see Dr. Zabramsky at Barrows Neurological in Phoenix he comes highly recommended by many other Dr.'s we talked to even our GP. We went to the visit and he explained the Chiari in detail to my son, explained surgery and the risks, and his words were "he is a good candidate for surgery" and also went on about how he doesn't guarantee the surgery 100% but then followed up with the statistics on success rates...etc.
We discussed how his symptoms have been progressing rapidly over the past 6 months from just a weekly headache to daily and now the IBS/Anxiety/Fatigue..
My exact question to him was..if we don't do surgery what are we up against, he said that the symptoms will most likely progress and cause further issues. So with ALL the risks and the success rates put on the table we all decided that surgery would be a good thing for my son and he is scheduled for surgery on Sept. 16th.
Yesterday I receive a copy of a letter that Dr. Zabramsky sent to my sons GP. This letter states:
I explained that while his headaches may be secondary to his Chiari Malformation, ther is no way to confirm this prior to surgical intervention. I briefly explained the surgical procedure for Chiari decompression, and the fact that the surgery would involve risks of death, coma, stroke, paralysis, infection and others, as well as the fact that the results of surgery cannot be guaranteed. They were informed that surgery would have, at best a 70% to 80% chance of improving his headaches. I placed the risks of serious complications, such as stroke, paralysis, and death from the surgical procedure in the range of 2-3%, and the risk of infection in the rage of 1-2%. Finally I stressed that there is no urgency in making a decision of whether to proceed with surgery and that without surgery, he is at little, if any risk, of rapid progression of symptoms, and that continued non-operative treatment with serial imaging studies was also a reasonable option for management.
After reading this i was puzzled... I talked to my husband and we agreed this is NOT at all what he said in the appointment???
Any ideas as to why he would send this letter to our GP but have given us a totally different opinion at the appointment.
What were the success rates the doctor gave you, verbally, in the appt? What I take away from this that the doc recommends surgery because he feels there is a likely good outcome (improvement of headache- not resolve). He views your sons condition as a non-emergency, but expects that his condition/symptoms will likely progress, hence the “serial imaging” if you decide to wait on surgery. If you feel there are gaps in what the doc said and what he wrote, I would ask him to clarify. If your gonna move forward with surgery you need to TRUST your surgeon. Good luck
Jenn
He does need to clarify,if your son is progressively getting worse,does he really feel that he will just stay where he is now? It seems that if his symptoms have been steadily getting worse why would they stop progressing.In most cases if they have been worsening that would continue,with my own experience the symptoms began worsening and continued to do so until the decompression.
The success rates he gave are exactly what he put in the letter, that did not change. I was just surprised to see him say: " there is no urgency in making a decision of whether to proceed with surgery and that without surgery, he is at little, if any risk, of rapid progression of symptoms, and that continued non-operative treatment with serial imaging studies was also a reasonable option for management." compared to what was said at the appointment.
I would have to agree I think he is just being careful with his words, and wants to make sure we understand the whole picture.
jcdemar said:
What were the success rates the doctor gave you, verbally, in the appt? What I take away from this that the doc recommends surgery because he feels there is a likely good outcome (improvement of headache- not resolve). He views your sons condition as a non-emergency, but expects that his condition/symptoms will likely progress, hence the "serial imaging" if you decide to wait on surgery. If you feel there are gaps in what the doc said and what he wrote, I would ask him to clarify. If your gonna move forward with surgery you need to TRUST your surgeon. Good luck :) Jenn
I was thinking that this is what it all meant. My son is scheduled for surgery on Sept. 16th. We totally understand that there is a chance his surgery won't make his symptoms go away but if it at least reduces them then my son said he will be happy and consider it successful.
We really liked this NS, he was great at the visit. He took his time to make sure my son understood the Chiari, surgery, recovery, risks, and complications. He had a very warm personality and we were comfortable with his genuine concern for my sons health and recovery.
Charlene,
I am new to this support group but I want to tell you coming from a nurse and the wife of a chiari patient who is 6 months post op, surgery may not cure the headache. My husband is 36 and his only chiari symptom was a severe headache. He had no neurological symptoms, just a headache. Here is what I am finding out about chiari though, I work with people who have chronic illnesses every day and illnesses/diseases are pretty much treated the same. Chiari though has many, many different symptoms and presents many different ways and what works for some may not work for others. Why does surgery work for some and others continue to have symptoms after decompression? It is a very frustrating illness, I think for doctors too because they don’t get the same outcome on every patient. I’m sure you know a large number of chiari patients don’t have surgery, I think you just have to decide if quality of life right now is what he wants it to be and if it’s worth the risks to try and improve it, good luck to your son.
