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...
So, my appointment was at 3 p.m. and I saw my NS' nurse practitioner at approximately 5:45....One would think that driving 352 miles would have been enough to be seen more promptly. I digress....
She asked how I've been and of course I filled her in about the continuing daily HA's, the occasional horrific HA's, the swelling of my shunt, the continuing pain from the catheter in my abdomen, the occasional vertigo, the occasional nausea and vomiting, the most recent LP with an opening pressure of 24 and of course my continual need for daily Dilaudid. Beyond that I expressed my continual frustrations with the lack of care in Rochester, NY, the incompetence of the doctors I've already met with and the disappointment in the fact that neither I, my insurance company, my PCP, the hospitals or my shunt manufacturer can find a NS in my area who can take care of me. And, of course, as of my most recent post, I expressed my anger regarding the last doctor who did very little except to insult me and minimize our disease. Additionally, I told her that I was angry because both Dr. McGregor and Dr. Katz told us PRIOR to my shunt surgery that they knew docs in my area who could do follow up care. His nurse practitioner said, "Well, I never said that and it's NOT MY PROBLEM!!!" REALLY??? Then she said that he would most likely just adjust my valve one more time to the lowest setting to open it up as far as it can go. I expressed that I thought that due to the fact that I don't have a doc in NY, due to my continual disability, due to the LP results indicating that my shunt isn't working properly and most importantly due to the fact that I am here now...we need to act aggressively this visit. She asked what I meant. I said, "We need to first insure that this thing works. That I know that the shunt can be tapped, eliminating the need for another traumatic LP, so we can find out my pressure. I said I know that a shunt-o-gram can be done to determine if and where the blockage or malfunction is. And, then, of course, based on those findings I said we need to fix the problem." She looked at her watch and said, "Those things need to be scheduled. They take a great deal of time over the course of several days, and they aren't going to happen now. It's after 6 p.m. and we still have 6 more patients to see." And, I said...."WELL, I'M HERE NOW. YOU HAVEN'T PROVIDED ME WITH A DOCTOR IN NY FOR FOLLOW UP CARE AND I'M STILL SICK...SO GUESS WHAT??? IT'S NOT MY PROBLEM!!!!"
She respectfully smiled and said "okay, I'll send Dr. McGregor in." LOL! When he came in he asked if I've had any relief with my shunt at all. I told him that prior to my shunt I had a daily HA with pain at a level 7 or 8 by 10 a.m. each morning. If I did anything that day, or was active the pain would be at a 10....and if I didn't get any rest the pain would go off the charts and every other day I was in the ER. And of course, I had other issues as well like neck and back muscle pain, whooshing in the ear, pressure that felt like I was deep under water, and memory and cognitive deficits. Now, with the shunt, I have a HA everyday but it is at a 4 or 5 on the scale. If I'm active, that number goes up and sometimes it's a 10 or above. But, the back pain is better and while I still get some neck pain it's not as bad. I do still get occasional vertigo and nausea, and of course sharp abdominal pains from the tube. But, it is a "little" better.
He said that while rare, some people are very sensitive to the catheter and it causes sharp pain and problems. Occasionally, it can even get stuck in a painful position and then they have to move the tube laproscopically. It's just something I'll have to get used to. As for the HA's, he said that it appears that my shunt works. It's in the right place and as I'm getting some relief it must be working. He said an opening pressure of 24 may be as good as it's going to get for me. He said, the only thing they can do for me right now is adjust the shunt to the lowest setting (30) and hope that things improve. If they don't improve, or worsen, then I have to come all the way back and then they'll do some tests to check the shunt. If my valve is functioning okay, then he would suggest that I get a second shunt...an LP shunt in addition to the VP shunt I already have. I said, "So then I would have 2 tubes in my abdomen causing pain." And, he said..."Well, yes...that is something to consider."
I again asked for the name of a doctor in NY and he gave me one name...a doctor in Syracuse (3 hours away). He said that this doctor is a brain tumor doctor and may not be able to help me, but was certain that he would know someone who could. LOL!
So...there it is my friends. I can only hope that this adjustment makes all the difference in the world. Unfortunately, due to the fact that we've adjusted my shunt umpteen times always with a high opening pressure...well, I'm not holding my breath. That being said, it would take some convincing before I would ever decide to have an LP shunt added to the VP shunt I already have.
So, what did all these months, all the waiting, all the suffering, and all the begging bring me back to? The realization that there is no cure for IIH. We know more about it than our doctors do. And, that this may be as good as it gets.
If you got this far in my post...then thanks for sticking with me, because it's been a shitty day.
Much love,
MM3
She asked how I've been and of course I filled her in about the continuing daily HA's, the occasional horrific HA's, the swelling of my shunt, the continuing pain from the catheter in my abdomen, the occasional vertigo, the occasional nausea and vomiting, the most recent LP with an opening pressure of 24 and of course my continual need for daily Dilaudid. Beyond that I expressed my continual frustrations with the lack of care in Rochester, NY, the incompetence of the doctors I've already met with and the disappointment in the fact that neither I, my insurance company, my PCP, the hospitals or my shunt manufacturer can find a NS in my area who can take care of me. And, of course, as of my most recent post, I expressed my anger regarding the last doctor who did very little except to insult me and minimize our disease. Additionally, I told her that I was angry because both Dr. McGregor and Dr. Katz told us PRIOR to my shunt surgery that they knew docs in my area who could do follow up care. His nurse practitioner said, "Well, I never said that and it's NOT MY PROBLEM!!!" REALLY??? Then she said that he would most likely just adjust my valve one more time to the lowest setting to open it up as far as it can go. I expressed that I thought that due to the fact that I don't have a doc in NY, due to my continual disability, due to the LP results indicating that my shunt isn't working properly and most importantly due to the fact that I am here now...we need to act aggressively this visit. She asked what I meant. I said, "We need to first insure that this thing works. That I know that the shunt can be tapped, eliminating the need for another traumatic LP, so we can find out my pressure. I said I know that a shunt-o-gram can be done to determine if and where the blockage or malfunction is. And, then, of course, based on those findings I said we need to fix the problem." She looked at her watch and said, "Those things need to be scheduled. They take a great deal of time over the course of several days, and they aren't going to happen now. It's after 6 p.m. and we still have 6 more patients to see." And, I said...."WELL, I'M HERE NOW. YOU HAVEN'T PROVIDED ME WITH A DOCTOR IN NY FOR FOLLOW UP CARE AND I'M STILL SICK...SO GUESS WHAT??? IT'S NOT MY PROBLEM!!!!"
She respectfully smiled and said "okay, I'll send Dr. McGregor in." LOL! When he came in he asked if I've had any relief with my shunt at all. I told him that prior to my shunt I had a daily HA with pain at a level 7 or 8 by 10 a.m. each morning. If I did anything that day, or was active the pain would be at a 10....and if I didn't get any rest the pain would go off the charts and every other day I was in the ER. And of course, I had other issues as well like neck and back muscle pain, whooshing in the ear, pressure that felt like I was deep under water, and memory and cognitive deficits. Now, with the shunt, I have a HA everyday but it is at a 4 or 5 on the scale. If I'm active, that number goes up and sometimes it's a 10 or above. But, the back pain is better and while I still get some neck pain it's not as bad. I do still get occasional vertigo and nausea, and of course sharp abdominal pains from the tube. But, it is a "little" better.
He said that while rare, some people are very sensitive to the catheter and it causes sharp pain and problems. Occasionally, it can even get stuck in a painful position and then they have to move the tube laproscopically. It's just something I'll have to get used to. As for the HA's, he said that it appears that my shunt works. It's in the right place and as I'm getting some relief it must be working. He said an opening pressure of 24 may be as good as it's going to get for me. He said, the only thing they can do for me right now is adjust the shunt to the lowest setting (30) and hope that things improve. If they don't improve, or worsen, then I have to come all the way back and then they'll do some tests to check the shunt. If my valve is functioning okay, then he would suggest that I get a second shunt...an LP shunt in addition to the VP shunt I already have. I said, "So then I would have 2 tubes in my abdomen causing pain." And, he said..."Well, yes...that is something to consider."
I again asked for the name of a doctor in NY and he gave me one name...a doctor in Syracuse (3 hours away). He said that this doctor is a brain tumor doctor and may not be able to help me, but was certain that he would know someone who could. LOL!
So...there it is my friends. I can only hope that this adjustment makes all the difference in the world. Unfortunately, due to the fact that we've adjusted my shunt umpteen times always with a high opening pressure...well, I'm not holding my breath. That being said, it would take some convincing before I would ever decide to have an LP shunt added to the VP shunt I already have.
So, what did all these months, all the waiting, all the suffering, and all the begging bring me back to? The realization that there is no cure for IIH. We know more about it than our doctors do. And, that this may be as good as it gets.
If you got this far in my post...then thanks for sticking with me, because it's been a shitty day.
Much love,
MM3
And Mandy, I will keep you in my thoughts. I hope everything goes well for you!