This is the letter I wrote to my family who asked for an update. Do you think it accurately describes the CM surgery or think I should may send out another email with more information. I do not want to overwhelm them but give them some factual basics.
Here is the letter
Here is what is going on with the most recent doctor’s appointment. On July 16, I will be having my Chiari Malformation surgery at UPMC Shadyside. This is considered a brain surgery. Here is what will happen during the surgery:
1. The neurosurgeon will remove a piece near the base of my skull and examine how extensive the problem is and how to make more room for my brain. This is called a suboccipital craniotomy. Here is a link (http://www.mayfieldclinic.com/PE-Craniotomy.htm )that explains a general craniotomy. Suboccipital is at the base of the skull above the neck. See the diagram on the web site. Next he will determine what steps to take next and the next steps are:
2. He will remove part or all of my C1 vertebrae. After doing this he will determine if there is enough room. This is called a C1 laminectomy.
3. Finally if the above does not create enough room, the neurosurgeon will open the fluid filled “bag” around the brain called the dura. He will then place a grafting patch over the area. This is called a duraplasty.
4. Finally the Neurosurgeon will place a titanium plate to replace the area of the skull removed. This is called a titanium cranioplasty.
The surgery will take approx 3 – 6 hours plus recovery room time.
By no means is this a “cure” for me. There are many associated risks with the surgery alone and the surgery is not a guarantee of not having future problems either. Surgery is a treatment option. The neurosurgeon gives me good odds on recovering fully and without complications.
If I appear to have other things on my mind when you speak to me this is why, and after the surgery I will be in pain for a while so please do not expect me to have an immediate recovery. From my research and from people I have in my support group who have had the surgery, it will take approximately 1.5 – 2 years to fully recover if everything is successful and no return of symptoms.
Bear in mind this was not an easy decision to come to have the surgery completed. As many of you know, it took quite a while just to get the proper diagnosis of Chiari Malformation with Syringomyelia. Also my PCP also believes this (Chiari Malformation) is responsible for my POTS due to the pressure placed on my brain stem.
The doctor I am using here in Pittsburgh is highly recommended by many people as well as many of the leading Chiari research organizations. He has completed many of these decompression surgeries. At this time I ask for your prayers for a safe surgery and good recovery.
www.medschool.lsuhsc.edu/.../Module%20ChiariMalformations.ppt – this is a good link explaining Chiari Malformation. Also if you have any questions do not hesitate to ask me, I will answer to the best of my ability.
As if this is not enough Chrissy is in her 24th week of pregnancy. Week 25 starts on Friday. She is doing well and we are trying to keep the stress down as it is neither good for her or me or anyone. Please keep her in your prayers as well.
Michael William