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
You have been through so much!
I am glad to hear that you like this neuro surgeon and have confidence in him. I truly hope that you have an experience like TJ's with minimal to no complications and a smoothe recovery. Let's all hope that TJ's experience is more of the norm, and your previous experience was not.
Anyway, you know the whole group here will be roooting for you on the 22nd, and we totally expect surgery pics posted for your avatar along your shunt journey just like TJ! :)
As far as the PTSD goes, I have found it helpful to tell my doctors, nurses, treatment team, etc...that I have PTSD in advance. They tend to be extra gentle, let you know what is going on each step of the way, and also willing to give you a PRN like Attivan or Valium if you need/want it.
I thought at first they would treat me discriminatorily, but it was just the opposite....
Sending good thoughts your way,
Lucy
thanks for the great idea of me telling them about my PTSD, I usually tell the surgery team but then I forget to tell the nurses on the floor and the other Dr.'s who see me.
I do have a prescription klonopin (sp?) so will tell them about that too. thank you for your support, you gave me strength to go through this, again, lol. many Blessings, Jazzy
And TJ can help you think of some diversonal activities to do while in the hospital in case you get bored!
I'll be cheering for you!
Bax
I'm super new to this group, but I just wanted to share my best wishes for you and your surgery. You say "you know people have had much more than you" but you have had much more than me, and I admire your strength with your battles. You will definately be in my thoughts on that day as well. Take care.
-Kayla
I agree with Lucy that you should be really honest with your docs and the other staff about your fears and they will be more likely to be gentle and compassionate with you. There's no shame in having fears due to prior bad experiences.
Personally, I think you are a magnificent and brave woman, a role model for others (don't snicker) and I applaud you. Seriously. Being a hero doesn't mean you don't have fear. It means you face your fears and walk into the mouth of the beast anyway. You are a hero to me for being willing to work with the docs and solve your health issues. I'll be cheering from the virtual sidelines throughout your journey, ok?
thank you for your kind thoughts. I\'m sorry you had to join this group but so glad you found us and joined. I hope you are not in too much pain and I will bring everybodies strength with me on the day of surgery. Many Blessings, Jazzy
You are a true angel, and with everything you are going through to think of others is amazing. You made me tear up from your kindess and you gave me strength to go forward and hope for the best. Thank you! Many Blessings, Jazzy
You are the best, you have more strength then you realize. You are going through so much and always have time to say such kind and loving supportive words. You will be on my prayer list. I know it can be intimadating what you will be going through just don\'t think about it too much, that is what I try to do before my surgeries, try is the main word there.
If you mention to the nurses and doc about PTSD about the other surgeries they will do anything they can to make you comfortable, that is part of their job, but they have to know it ahead of time. If you tell your Neurosurgeon in the next meeting he can write in the chart and keep mentioning it to him and he will have all the paperwork started with it on there. They want you very calm, believe me. Take some audio books, and some music. Just a thought. Take care, Karen
I just know that you\'ll be fine. You have given so much to so many, that I have no doubt that good karma will come right back to you! : )
And...just a thought...ask the hospital if they have a music therapy program. When I had throat surgery I was extremely scared. They brought in a music therapist who hooked me up to headphones and remarkably, I felt much more calm. I was allowed to wear them into the OR and was amazed at what a difference it made.
As far as how you are treated...well, they better be nice or Monkeymom will have to pay a visit!!! Keeping that in mind...know that you\'ll be resting in the arms of my hugs on the day of your surgery. I\'ll be praying for you as always.
MM3
Take care!
Bax