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...
As many of you know, since my shunt surgery last November, I've still had some problems. The worst of which is that I had my surgery done in Ohio, but, I live in New York and have had difficulty finding a NS who either knows enough about shunts or IIH locally who can help with follow up. Finally after several trips to the ER, and countless doctors telling me how I needed to schedule an appointment with a NS by the name of Dr. Wensel....I did.
Today was my scheduled appointment, and I left sobbing in tears. He approached the visit by saying, "What can I do for you?" I explained that I had a VP shunt placed in Nov. of last year, but am still having HA's, tube pain, etc. to the point where I can't work or live a normal life. He asked what my symptoms were when I was diagnosed. I explained that I had the "whooshing" in my ear, fatigue, memory and cognitive function problems, neck and low back pain and pressure, nausea and vomiting, dizzy spells, some blurry vision and of course, the worst daily HA's...that it often times felt like I was deep under water as I had enormous head pressure. I told him that while I had papilledema when I was first dx'd it had mostly cleared up and it wasn't my primary problem. I explained that the daily excruciating HA"s were my worst symptom. I also told him that I've been on Dilaudid for awhile and am trying to wean off of it. He said, "That is probably what was causing your memory problems." (For those of you out there with IIH and memory problems...it's not because of the IH it's because of your meds...LOL!) I told him that on a scale of 1 to 10 my head pain felt like 80. Then he mocked me and went on to say, "Don't exaggerate....a scale of 1 to 10 is just that. The worst it can be is 10." I said, I understand what the scale is...What I'm telling you is that the pain was far worse than any scale you could try to explain in words. And...I kid you not when he ranted and argued for 10 minutes about the pain scale and how it's never worse than 10! OMFG!!!!
Then he said that he doesn't do shunt surgery for IIH patients who don't have papilledema, nor does he do revision surgeries for those without papilledema. He said that shunts don't help with HA's. I explained that for the most part, it has helped me somewhat...it just needs tweaked. But, I am definitely doing better than I was pre-shunt. He said, "Well than your one of the lucky ones....because shunts don't help with HA's." Then my husband explained that I had an adjustable shunt and asked if he would be willing to adjust the valve should I need an adjustment...like if I had a low pressure HA or something. He said, "No. I don't do adjustable shunts. It's not my thing, because then I adjust it and you just end up with a high pressure HA. It doesn't work."
Then I got mad. I said, "Please give me your definition of IIH. He said, "Well I have a small diffuse definition. It's an idiopathic condition that leads to papilledema and eventual blindness." I said, "THERE IS SO MUCH MORE TO THIS DISEASE THAN THAT. THIS DISEASE CAUSES EXCESS CSF TO SQUEEZE THE BRAIN AND SPINAL CORD CAUSING EXTREME PAIN, CHRONIC FATIGUE AND NEUROLOGICAL PROBLEMS AND DEFICITS....SOMETIMES DANGEROUS LEADING TO ANEURYSMS AND HEMORRHAGE." He said, "Well obviously you've never been that serious." I said, "Yes...I have. Why do you say that?" He said, "Because you've never been hospitalized for this. Because then I or someone in my group would've seen you." I said, "I have been hospitalized for up to two weeks and at one point had a TIA. When I was first brought in they thought I had an Aneurysm."
He just kept repeating that shunts for IH are used to treat papilledema only and he can't help me beyond that. He said he felt "Sorry" for me and hoped that I didn't get an infection or something forcing him to need to see me again. In the meantime, he recommends that I find a pain specialist and said that everybody outgrows IIH. That it will just go away.
Does everyone here agree that this guy is a complete and total asshole who doesn't know shit about IIH???? I left in tears, and seriously wanted to kick his superior ass!!!
So, I'm still in a boat without a paddle and I'm swimming upstream. BLAH!
Today was my scheduled appointment, and I left sobbing in tears. He approached the visit by saying, "What can I do for you?" I explained that I had a VP shunt placed in Nov. of last year, but am still having HA's, tube pain, etc. to the point where I can't work or live a normal life. He asked what my symptoms were when I was diagnosed. I explained that I had the "whooshing" in my ear, fatigue, memory and cognitive function problems, neck and low back pain and pressure, nausea and vomiting, dizzy spells, some blurry vision and of course, the worst daily HA's...that it often times felt like I was deep under water as I had enormous head pressure. I told him that while I had papilledema when I was first dx'd it had mostly cleared up and it wasn't my primary problem. I explained that the daily excruciating HA"s were my worst symptom. I also told him that I've been on Dilaudid for awhile and am trying to wean off of it. He said, "That is probably what was causing your memory problems." (For those of you out there with IIH and memory problems...it's not because of the IH it's because of your meds...LOL!) I told him that on a scale of 1 to 10 my head pain felt like 80. Then he mocked me and went on to say, "Don't exaggerate....a scale of 1 to 10 is just that. The worst it can be is 10." I said, I understand what the scale is...What I'm telling you is that the pain was far worse than any scale you could try to explain in words. And...I kid you not when he ranted and argued for 10 minutes about the pain scale and how it's never worse than 10! OMFG!!!!
Then he said that he doesn't do shunt surgery for IIH patients who don't have papilledema, nor does he do revision surgeries for those without papilledema. He said that shunts don't help with HA's. I explained that for the most part, it has helped me somewhat...it just needs tweaked. But, I am definitely doing better than I was pre-shunt. He said, "Well than your one of the lucky ones....because shunts don't help with HA's." Then my husband explained that I had an adjustable shunt and asked if he would be willing to adjust the valve should I need an adjustment...like if I had a low pressure HA or something. He said, "No. I don't do adjustable shunts. It's not my thing, because then I adjust it and you just end up with a high pressure HA. It doesn't work."
Then I got mad. I said, "Please give me your definition of IIH. He said, "Well I have a small diffuse definition. It's an idiopathic condition that leads to papilledema and eventual blindness." I said, "THERE IS SO MUCH MORE TO THIS DISEASE THAN THAT. THIS DISEASE CAUSES EXCESS CSF TO SQUEEZE THE BRAIN AND SPINAL CORD CAUSING EXTREME PAIN, CHRONIC FATIGUE AND NEUROLOGICAL PROBLEMS AND DEFICITS....SOMETIMES DANGEROUS LEADING TO ANEURYSMS AND HEMORRHAGE." He said, "Well obviously you've never been that serious." I said, "Yes...I have. Why do you say that?" He said, "Because you've never been hospitalized for this. Because then I or someone in my group would've seen you." I said, "I have been hospitalized for up to two weeks and at one point had a TIA. When I was first brought in they thought I had an Aneurysm."
He just kept repeating that shunts for IH are used to treat papilledema only and he can't help me beyond that. He said he felt "Sorry" for me and hoped that I didn't get an infection or something forcing him to need to see me again. In the meantime, he recommends that I find a pain specialist and said that everybody outgrows IIH. That it will just go away.
Does everyone here agree that this guy is a complete and total asshole who doesn't know shit about IIH???? I left in tears, and seriously wanted to kick his superior ass!!!
So, I'm still in a boat without a paddle and I'm swimming upstream. BLAH!
I have been told there us nothing left for me to do. Have i given up? Like hell I have! I am going to see the top man ( in Ireland, what a laugh!) at the end of April. Do I have hope? A little bit but I have more belief in me right now. So the drs tell us one thing and the next day another, big deal. We, are the ones who live it every day, like you ,with courage and good spirts. You TRY every day to make it work and in the end, I have no doubt, you will make it all work. I believe in you!
Now, have your bad day and cry your tears. You have earned the right But tomorow, you start again, well maybe the day after. Everystep, is a step forward, we learn from every step. I will be with you every step, I will hold your hand and you hold mine. Deal? Cath.
i got diagnosed because of headaches and neck pain i got treated because of headaches and i have ongoing issue because of headaches NEVER before my shunt was PAP's even mentioned as a sign i had NEVER had i made a conection between the ringing in my ears and tinitis I was diagnosed lp'd shunted reviewed and shunted again ALL because of headaches.
This is a Idiot doctor with a god complex who to be honest sounds like my Head NS who simply is to scared to work with the adjustable shunts they are too complicated for him and he will have to see you too often to get it right so he can't be bothered.
YOU are such a amazingly positive woman who always has great uplifting comments that it is so sad seeing you OBVIOUSLY having a hard time i can get that through your posts with out looking at you or your file, he should have been more understanding and less up himself just because you knew what you were talking about
OH and BTW when i get asked my pain score i say 5-8 for my headaches followed by i have given birth and had Gall stones i was told by a nurse that the pain score is crap because a person who comes in with a broken arm who has had kidney stones will be sitting pretty with a pain on like 8 but a person who has broken there arm for the first time will say 100 because it is the worst pain imaginable for them it definatly needs to be said what your worst pain imaginable is ( he should have know that by saying 80 your 10 is something nowhere near what pain your headaches give you) i hope that makes sense i am in no way saying you are wrong in saying 80 i used to say 100 but now i say 8 because i finally understand how they make the comparison...
AGAIN i am so sorry and angry you had to go through this and like Cath said get it out have your cry hell you deserve it but pick yourself up tomorrow or the next day and kick doctor butt
I would report him.
Best of luck, and stay positive!
This weekend I am leaving for Ohio, and am scheduled to see my original NS on the 31st. I can only hope and pray that the appointment goes better than this one. Unfortunately, like Alias I'm afraid that he has done the surgery, they've gotten their $77K and then they've pretty much ridden their hands of me. I guess each of us are going to need to start demanding better care and respect. Cath...like you've said...you hold my hand and I'll hold not only yours but each of yours. We are a small club, but we must stick together...Right now, it seems we're all we have.
Thanks for the love.
MM3
I feel for you, I can only sugguest trying to get into a University hospital, Is there one near you ? I wish there was a way to file a complaint against these Dr's for there ingnoracne and arrogance...I once had a Neuro surgeon I was sent to for a consult for shunting actually tell me that everyone has something they have to live with even in his own family...so I should be happy I am not having a serious problem and learn to live with is...when I was in the hospital just talking about this made my blood pressure go way up...and reading your post makes my blood boil...just rember you are not crazy the DR. is...I hope you research going to a University Medical Center..even though I have to drive three hours each way to the Dr...I can get everthing done in one place....MY sister is an RN and she believes some DR's just don't want to be bothered with us.....I know have this can set you back, but you have ato keep going until you find someone that can help you...take care and if nothing else I will ask my Dr. if he can refer you to someone in your area......I see him on the 5th of April..so if you don't find someone by then let me know where you live and I will ask.....thinking of you....Paula
I am so saddened to read your post. I am so sorry that you had to go through that experience. What a tool.
If you go ahead with registering a complaint you may want to throw in the word "abandonment". By law if a doctor sees you as a patient even once they have a responsiblity to care for you, either themselves or by referring you to someone who can care for you. If they "abandon" you in any way (not returning calls, telling you that you will grow out of it, telling you they can't treat you for some reason - your ventricles are too small, you haven't lost weight, you don't have paps, etc) report them and use the word "abandoment" or even just say you felt abandoned. The board that licenses doctors takes abandonment very seriously. A doctor could lose their license. I have only had to pull out the "a-word" once with a doctor's office and they treated me like a VIP after that. Fortunately I found a better doctor, but at the time that idiot doc was my only choice.
My wish for each of us is to have a medical team we trust. I consider myself very fortunate to have found a great NS and a great NO. Hold your head high and keep going until you get the care you need and deserve.
I hope things go well with your trip to Ohio. I'll be thinking of you.
Eileen
Good luck back in OH. I've said it before but you need a shunt doctor. Hope you find one soon. It really sounds like for the short time your shunt worked you were HA free and now your pressure is high again indicating the shunt is not fixing the problem anymore. When I got to that point MY NS quickly identified it was not working from a shunt tap and confirmed where it stopped working with a Nuclear test. I would find someone that knows these things and can help you find out what is wrong.
I know I am preaching to the choir but it sure pains me to know you could be so much better off with a working shunt. I'm living proof and you were too for a short time.
Don't take no for an answer.
TJ
Hugs,
Krys