1. Understand HH Treatment Options
- What surgical treatment options are available? There are several surgical options available to treat a hypothalamic hamartoma, as well as clinical trials for a potential new treatment called Focused Ultrasound. For more information on each of these treatment options, click here.
- When should I ask for a surgical evaluation? – A diagnosis of hypothalamic hamartoma with epilepsy will usually be reason enough for a surgical consultation. Depending on other symptoms, there may be additional tests and consultations that should also be considered.
- With so few experienced hypothalamic hamartoma medical professionals, a 2nd opinion is always a good idea.
2. Finding a HH Treatment Facility
Where should the surgical evaluation take place? – There are surgical centers that have experience with HH and employ the whole team concept when it comes to treating hypothalamic hamartomas.
For a list of those known hypothalamic hamartoma treatment facilities check out our Treatment Facilities page.
If for insurance or other reasons you are not able to consult one of these centers, a referral to a level 4 epilepsy center with substantial complex epilepsy surgery experience is recommended.
- Is anyone with a hypothalamic hamartoma a candidate for surgery? Not all cases will require surgery. Individuals with a genetic cause for the HH, as found in Pallister-Hall syndrome, may have a hypothalamic hamartoma but not experience any seizures. Surgery is not usually recommended for individuals that are asymptomatic. Individuals with epilepsy that is resistant to drug therapy are good candidates for surgery.
- When are seizures considered drug resistant? A person’s seizures are considered drug resistant if they have failed two appropriate anti-seizure medications. The chances of a third drug stopping seizures falls to approximately 4% and a fourth drug to almost 0%. The test for drug resistance is discussed at length here.
- What questions should I ask the surgeon? A referral to an experienced neurosurgeon does not mean that you must commit to surgery at that time. It means that you have decided to determine whether you or your loved one is a good candidate for surgery and to understand which surgery is recommended. The goal is to weigh the risks and benefits of surgery versus the risk of continued drug resistant seizures. A second opinion is recommended when possible. This will allow you to consider a variety of options and ask questions regarding expected outcomes. For a list of potential questions check our Doctor FAQs available for download.
Depending on the treatment or surgical procedure you have, hospital stays and recovery time will vary. Before you schedule your surgery, it is important to have a discussion with your surgical team about what to expect during your recovery. Some questions you may want to ask include:
- What is the expected length of stay after my surgical treatment?
- Are post-op follow-up appts done locally or at the surgical center?
- What if I experience seizures post-surgery? Does it mean the procedure was not successful?
- What if I see post-surgery weight gain?
Additional questions can be found here.
We highly recommend that you keep a diary of any changes you may see post-surgery and discuss them with your medical team. Also, be sure you keep a copy of all labs, imaging, and other tests done pre and post-surgery in a medical binder for future reference.