After discussing in depth with my phenomenal neurosurgeon we have decided to go a different route than what I had expected to deal with my headaches! Since the medication to decrease my intracranial pressure (Diamox) has been helping so much we are almost certain that my pressures are high even though my lumbar puncture did not show extremely elevated pressures. We know my headaches are worse at night and the lumbar puncture was done in the morning, so that was one reason that the readings from that test came back borderline and not high. Given all of these factors we now have two options. The traditional treatment would be to place a shunt to drain excess cerebrospinal fluid from my brain/spine into my abdominal cavity where it would be reabsorbed. A shunt is device that will drain this fluid to reduce the pressures in my brain. Prior to this treatment I would need to have more monitoring to ensure that my pressures are as high as we believe they are.
The alternative to this procedure, which is a very new idea that has very little research done on it, is a venous stenting. They are finding that in some EDS patients the veins in our brains are clogged. This clog causes a blood to back up and raise the pressures in your brain. A stent can be placed in these veins to open up the blood flow allowing the pressures to come back down in your brain. This is a new procedure that there is little research done on it in EDS patients. There is one doctor at the University of Virginia that is doing this procedure on EDS patients and he is having great success. Here is an article about that doctor and his use of stents in patients who have EDS.
http://www.uvaphysicianresource.com/venous-stent-procedure-providing-relief-to-some-ehlers-danlos-patients/
The good news for me is that there is another doctor, a vascular neurosurgeon, who is starting to look into this procedure at Cincinnati Children's Hospital. I am located not even 15 minutes from there, so obviously that is extremely convenient for me! To make things even better this doctor trained with my phenomenal neurosurgeon Dr. Rekate in New York, so he is very familiar with EDS and Chiari. I am not yet sure if I even have venous insufficiency or am a candidate for this procedure. What we need to do first is to get a full brain MRI as well as an MRV. An MRV is a special kind of MRI that looks specifically at the veins. This will show us if there are any clogged veins or not. If there are clogged veins then I will go ahead and set up a consultation with this doctor in order to develop a plan and hopefully schedule a procedure to place the shunts. I will be having the MRI/MRV done tonight and then the results will be sent to the doctor and I should hear back from him in a couple of days. I will also send a copy of the disks up to Dr. Rekate in New York so that he is able to view the scans himself as well. I have had to be off of the Diamox, the medication that lowers my intracranial pressure, for the whole weekend so that we can see what my brain looks like with the high pressures and my headaches have been severe all weekend! This is just one more confirmation that it is my pressures that are high that is causing the headaches. I am looking forward to being able to resume the Diamox tonight after the scan!
The stent procedure is a much less invasive surgery than a shunt surgery and is much less risky. Shunts can become infected and often need to be revised, meaning surgery is done again to replace or fix parts of the shunt. They are not an ideal solution, but if that is the route we have to go then I will pursue that option as well. The stent procedure carries many fewer risks and complications, so please pray that this is the solution we are able to pursue.
I have some other updates coming up as well, but I wanted to update on this as we now have more information. I will update again after I hear from the vascular neurosurgeon following my scan tonight and we are able to begin to develop a plan.
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