Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Well saw my NS again.
the plan is to take out my old shunt(s) system including the resevoir since it is hitting my spinal nerve..he showed me the MRI and there are at least 6 coils of tubing in my spine. Then he will put in a programmable LP shunt.
The scary part is if he can't gently pull the tubing out, if it has tissue grown over it or is hooked on a vertebrae then I will have to have back surgery (a laminectomy, but worse since he would have to go into the dura to get the tubing out). Only a 10% chance he will have to do it that way, but of course I'm focusing on that 10% chance since I would have to lie flat in hosp bed for 48 hours..total time in hosp would be 4 days.
If easy to take out, will only be in hospital 2 days, he will put in programmable LP shunt in a higher place and won't use my same incision sites.
I like this NS since he is very honest...showed me again how it would be impossible to do a VP shunt since my ventricles are like slits (My other NS said the same thing) and brain damage would occur.
He said that all shunts, programmable or not, can obstruct. He said if chiari develops the shunt would have to come out, he said though it is rare, chiari does happen from shunts.
I asked how would he know what setting the programmable shunt should be at. He is going to set it to "1" which is a normal setting and then he will adjust it, if he has to, according to my symptoms. He doesn't want to do surgery on me becuase of my suppressed immune system due to my kidney transplant but since I can't tolerate the meds and I can't go off my anti rejection meds only option is surgery.
Of course I will have 4 doses of vancomycin..it makes me so sick (throw up/dizzy), but it hopefully will keep any infection from developing.
It is scheduled for June 22 at 10:45 am, which is a monday, since he wants to be the one who follows me in the hospital and not the on call NS. (had to schedule the surgery later than earlier since my hubby can get 3 days off from work to be with me).
sorry such a long post..you all have been so kind to me and supportive. I'm so scared of another surgery but I am really, really hoping this will be the last one I will have to do. I'm so ready to be "normal" again and get back my life. many Blessings, Jazzy
the plan is to take out my old shunt(s) system including the resevoir since it is hitting my spinal nerve..he showed me the MRI and there are at least 6 coils of tubing in my spine. Then he will put in a programmable LP shunt.
The scary part is if he can't gently pull the tubing out, if it has tissue grown over it or is hooked on a vertebrae then I will have to have back surgery (a laminectomy, but worse since he would have to go into the dura to get the tubing out). Only a 10% chance he will have to do it that way, but of course I'm focusing on that 10% chance since I would have to lie flat in hosp bed for 48 hours..total time in hosp would be 4 days.
If easy to take out, will only be in hospital 2 days, he will put in programmable LP shunt in a higher place and won't use my same incision sites.
I like this NS since he is very honest...showed me again how it would be impossible to do a VP shunt since my ventricles are like slits (My other NS said the same thing) and brain damage would occur.
He said that all shunts, programmable or not, can obstruct. He said if chiari develops the shunt would have to come out, he said though it is rare, chiari does happen from shunts.
I asked how would he know what setting the programmable shunt should be at. He is going to set it to "1" which is a normal setting and then he will adjust it, if he has to, according to my symptoms. He doesn't want to do surgery on me becuase of my suppressed immune system due to my kidney transplant but since I can't tolerate the meds and I can't go off my anti rejection meds only option is surgery.
Of course I will have 4 doses of vancomycin..it makes me so sick (throw up/dizzy), but it hopefully will keep any infection from developing.
It is scheduled for June 22 at 10:45 am, which is a monday, since he wants to be the one who follows me in the hospital and not the on call NS. (had to schedule the surgery later than earlier since my hubby can get 3 days off from work to be with me).
sorry such a long post..you all have been so kind to me and supportive. I'm so scared of another surgery but I am really, really hoping this will be the last one I will have to do. I'm so ready to be "normal" again and get back my life. many Blessings, Jazzy
Good luck to you. We will all be praying for you!!!
Also, along the lines of the music therapy - some hospitals have reiki specialists. Honestly I don\'t know much about it other than they often do it prior to surgeries/labor. My OBGYN ordered a treatment for me which put me right into natural labor because it relaxed me enough to allow my cervix to dilate. Very interesting and non invasive.
Please take Care!!!
Angie
Thank you for your amazing support and including me in your prayer list...I am so lucky to have many guardian angels including you to help me.
I will be sure to do that about my PTSD, that is a great idea to bring some music or audio books. I have many meditation CD\'s that I will bring with me. My sister sent me one by Dr. Weil (sp?) and it is for people who have just had surgery or some other trauma and I really like it. I also got a CD from the hospital on surgical preop meditation and post op meditation. Blessings to you and I hope you are feeling better, Jazzy
You are so kind and loving on top of all you are going through! I can\'t even begin to tell you how you have calmed my heart and my soul...like I said before, I am sure we have met on the other side before this lifetime.
I certainly will tell them to watch their step or you might come over, lol.
that is a great suggestion about the music therapy, they do over the phone registration early and i will ask them if that is offered. I never even thought of having it in the OR. My guided imagery therapist said she will follow me in the hospital, so that will help.
I can already feel your healing hugs and hope that you are doing better, many Blessings to such a wonderful woman, Jazzy
I can tell your soul is very kind and loving. You are a great support to me and others. I\'m glad my new NS seems to know more of what he is going, I all ready got a woman anesthiologist (sp?) who has worked with me before, that I really like.
I can see us all marching in a victorious parade over PTC and other of our health issues! Many Blessings, and thank you for your prayers, Jazzy
thanks, I will look it up. It sounds great, plus I really need a good sleep with this insomnia.
I once went to a meditation group where a woman had us lie on the floor and she beat a large drum in the rythem of a heart beat. It was so grounding and healing. It is so cool what music and do to our souls and to help us heal, thanks again, Jazzy
thank you for your kind thoughts and words. I hope you are doing better and you are also in my prayers. Blessings, Jazzy
wow, that sounds so cool, I will ask. I know they have massage therapists because after my first shunt revision I got a free 20 minute massage, but I think it was just sweedish, though it was very relaxing and healing touch is amazing...like they say, "the issue is in the tissues". I\'ll find out about the reiki. Someone showed me a feldenkrais hold that was to calm you down, but of course I all ready forgot it, lol.
thank you for including me in your prayers, it is overwhelming all the support and love I have gotten from all of you and of course you are all in my prayers also, Many Blessings, Jazzy