Pseudotumor Cerebri

[mousecat88 2,281]

Has anyone here been diagnosed with pseudotumor?

I was diagnosed with this in July of 2017, and my neuroopthamologist said it would go away if I lost just 10% of my body weight. Well, I lost way more than that.

That year, I lost 60lbs and NOTHING changed with respect to my optic nerve swelling and diagnosis (I have since gained all that weight back).

After you had the surgery, did the pseudotumor and optic nerve swelling resolve itself? That is one (of many) of the primary reasons I am opting for surgery.

[GreenTealael 25,430]

8 minutes ago, mousecat88 said:

Has anyone here been diagnosed with pseudotumor?

I was diagnosed with this in July of 2017, and my neuroopthamologist said it would go away if I lost just 10% of my body weight. Well, I lost way more than that.

That year, I lost 60lbs and NOTHING changed with respect to my optic nerve swelling and diagnosis (I have since gained all that weight back).

After you had the surgery, did the pseudotumor and optic nerve swelling resolve itself? That is one (of many) of the primary reasons I am opting for surgery.

Question: did you ever take any meds along with the weight loss, change your diet and get regular lumbar punctures?

Also what was/is your starting weight?

[mousecat88 2,281]

4 minutes ago, GreenTealael said:

Question: did you ever take any meds along with the weight loss, change your diet and get regular lumbar punctures?

Also what was/is your starting weight?

Yes, I am (and was) taking Diamox along with the weight loss, and changed my diet... which is how I lost the weight. The doctor does not perform regular lumbar punctures because they aren't good to do repeatedly. I consulted with Johns Hopkins Center for Spinal Fluid Disorders, and they do not repeat them, either. They just kept taking pics of my optic nerve to check for changes. I only had the first one done, and my CSF pressure was JUST above normal. My weight in May of 2017 was 286 and by October of 2017 it was 225. I had been having headaches around my eye since 2016, though, and didn't go to the doctor until June of 2017, which is when I had the puncture done (and a billion other tests) and the diagnosis in July.

My weight is back to 280 now because I quit dieting when I saw no improvement in my nerve swelling and hit a 6 week plateau.

Edited October 10, 2018 by mousecat88

[mousecat88 2,281]

Nothing has changed regarding my optic nerve swelling/vision. Everything has been stable since my diagnosis. I don't have any vision problems (yet).

[GreenTealael 25,430]

They can't ever know your current opening pressure without a LP which will indicate, improvements, declines or stability of the Fluid production.

I have IIH. I also see a Neuroopthamologist, Neurologist and Neurosurgeon.

Lost 90lbs , in the 150s. Optic swelling greatly reduced. Headaches still present (but that may just be me) the real issue is are you going to give up again if you don't get the results you want ? If so then you may not be ready for this because it's two separate fights.

I lost all this weight and I'm still having IIH issues and probably always will, but at least I reduced my risks of other preventable, controllable ailments...

[mousecat88 2,281]

1 hour ago, GreenTealael said:

Headaches still present (but that may just be me) the real issue is are you going to give up again if you don't get the results you want ? If so then you may not be ready for this because it's two separate fights.

The honest answer for why I stopped dieting was because I was on a pretty extreme diet to lose weight and it was primarily the very long stall that killed me. I got really discouraged that I was doing so well sticking to something and had such a long plateau (even gained a few pounds). So then I went off the wagon hardcore because of that, coupled with a lot of interpersonal drama which just added to the stress-eating.

Since then, I've worked on those issues and don't foresee it being an obstacle for me moving forward. I know now that plateaus happen. And the new lifestyle will be much easier to maintain with a smaller stomach, than me being very hungry constantly like I was.

Pseudotumor is just one of a lot of reasons for this surgery, but definitely not the end all be all. Not at all. I was just wondering if anyone had a complete resolution of symptoms.

The thing with my opening pressure. My opening pressure was actually considered within the normal range for an obese person. The tech doing the lumbar puncture even said they'd never heard of someone being diagnosed with it at my level, which was 25cm. But my neuro said it's a combination of symptoms that lead to the diagnosis, and 25cm was enough to affect my optic nerve. I have a neurologist and neuroopthamologist currently. It's the headaches that kill me... I've tried a ton of Migraine meds and nothing helps, and the Diamox doesn't help that. It's very frustrating. But the Migraines COULD be a separate issue from the IIH, too. I could just simply have cluster headaches in addition to the pseudotumor. The world may never know. lol.

Edited October 10, 2018 by mousecat88

[FluffyChix 17,415]

28 minutes ago, mousecat88 said:

The honest answer for why I stopped dieting was because I was on a pretty extreme diet to lose weight and it was primarily the very long stall that killed me. I got really discouraged that I was doing so well sticking to something and had such a long plateau (even gained a few pounds). So then I went off the wagon hardcore because of that, coupled with a lot of interpersonal drama which just added to the stress-eating.

Since then, I've worked on those issues and don't foresee it being an obstacle for me moving forward. I know now that plateaus happen. And the new lifestyle will be much easier to maintain with a smaller stomach, than me being very hungry constantly like I was.

Pseudotumor is just one of a lot of reasons for this surgery, but definitely not the end all be all. Not at all. I was just wondering if anyone had a complete resolution of symptoms.

The thing with my opening pressure. My opening pressure was actually considered within the normal range for an obese person. The tech doing the lumbar puncture even said they'd never heard of someone being diagnosed with it at my level, which was 25cm. But my neuro said it's a combination of symptoms that lead to the diagnosis, and 25cm was enough to affect my optic nerve. I have a neurologist and neuroopthamologist currently. It's the headaches that kill me... I've tried a ton of Migraine meds and nothing helps, and the Diamox doesn't help that. It's very frustrating. But the Migraines COULD be a separate issue from the IIH, too. I could just simply have cluster headaches in addition to the pseudotumor. The world may never know. lol.

Ok, not to jump your case, but you really, truly MUST know, you CAN NOT bank on "the new lifestyle will be much easier to maintain with a smaller stomach, than me being very hungry constantly like I was."

Why? Cuz until you're "there," you will not possibly know how being "there" will feel or affect your appetite/hunger/head hunger. If you once had emotional eating, unless you continually work to remain in remission--you will always have it and must deal with it.

I can tell you that within 1 month, my hunger was back. I had cravings as well. And worse, I could swear my surgeon didn't make my new pouch tiny enough, cuz I could eat! EAT! All around me, peeps were full on 2tbsp. I'm like, "Fu*k me!!! The surgery is an epic fail! I can eat 1/4c and maybe more!!!!" At 1 month.

Right now at about 8 months (Feb.20), I could theoretically eat about 1 1/2-2cups of food if I allowed myself. I could eat 4oz of dense meat and about 1/2cup of veg. Trust me when I tell you, if I hadn't changed my wicked ways BEFORE surgery, I would have stopped losing, would probably still be obese, and would be nowhere near my goal 1 weight. The ONLY thing that is saving me and allowing me to stay on track, focused, on the prize, appetite suppressed is my diet/lifestyle which includes low carb eating and IF, my exercise that I do almost 7 days a week, my partner who encourages me, and all my friends here who are in it to win it on BP and FB.

I could do TONS of damage with 1 cup of food, eating continually all day. I would quickly regain. I could do even MORE damage with 1 1/2-2cups of food. But I am practicing good, healthy, food principles and following my surgeon's rules of the RNY road. And am experiencing success.

So please, please, if you aren't working with a therapist now, please look into one soon?!! So you can enjoy the success we are all experiencing!

Edited October 10, 2018 by FluffyChix

[mousecat88 2,281]

3 minutes ago, FluffyChix said:

So please, please, if you aren't working with a therapist now, please look into one soon?!! So you can enjoy the success we are all experiencing!

I don't do well with therapists; I am extremely stubborn and argumentative. I have a psychiatrist I see every two months. I've been seeing psychiatrists/therapists ever since I was four years old. I am very confident in my ability to succeed at this at this point in my life. I'm not banking on the new stomach to be the only thing stopping me from overeating. I realize it's just a tool and it takes a complete overhaul on my way of thinking and my lifestyle to make this work. I've seen enough stories of people regaining and I refuse to be a statistic.

[TakingABreak 2,733]

37 minutes ago, FluffyChix said:

Ok, not to jump your case, but you really, truly MUST know, you CAN NOT bank on "the new lifestyle will be much easier to maintain with a smaller stomach, than me being very hungry constantly like I was."

Why? Cuz until you're "there," you will not possibly know how being "there" will feel or affect your appetite/hunger/head hunger. If you once had emotional eating, unless you continually work to remain in remission--you will always have it and must deal with it.

I can tell you that within 1 month, my hunger was back. I had cravings as well. And worse, I could swear my surgeon didn't make my new pouch tiny enough, cuz I could eat! EAT! All around me, peeps were full on 2tbsp. I'm like, "Fu*k me!!! The surgery is an epic fail! I can eat 1/4c and maybe more!!!!" At 1 month.

Right now at about 8 months (Feb.20), I could theoretically eat about 1 1/2-2cups of food if I allowed myself. I could eat 4oz of dense meat and about 1/2cup of veg. Trust me when I tell you, if I hadn't changed my wicked ways BEFORE surgery, I would have stopped losing, would probably still be obese, and would be nowhere near my goal 1 weight. The ONLY thing that is saving me and allowing me to stay on track, focused, on the prize, appetite suppressed is my diet/lifestyle which includes low carb eating and IF, my exercise that I do almost 7 days a week, my partner who encourages me, and all my friends here who are in it to win it on BP and FB.

I could do TONS of damage with 1 cup of food, eating continually all day. I would quickly regain. I could do even MORE damage with 1 1/2-2cups of food. But I am practicing good, healthy, food principles and following my surgeon's rules of the RNY road. And am experiencing success.

So please, please, if you aren't working with a therapist now, please look into one soon?!! So you can enjoy the success we are all experiencing!

^^^^ this... 1000%.

My hunger comes and goes. But usually I get hungry like a normal person, and I can eat a lot too at times. This isn't the easy way out for all. And there is a cheat to everything in life... this is no exception.

[GreenTealael 25,430]

2 hours ago, mousecat88 said:

The honest answer for why I stopped dieting was because I was on a pretty extreme diet to lose weight and it was primarily the very long stall that killed me. I got really discouraged that I was doing so well sticking to something and had such a long plateau (even gained a few pounds). So then I went off the wagon hardcore because of that, coupled with a lot of interpersonal drama which just added to the stress-eating.

Since then, I've worked on those issues and don't foresee it being an obstacle for me moving forward. I know now that plateaus happen. And the new lifestyle will be much easier to maintain with a smaller stomach, than me being very hungry constantly like I was.

Pseudotumor is just one of a lot of reasons for this surgery, but definitely not the end all be all. Not at all. I was just wondering if anyone had a complete resolution of symptoms.

The thing with my opening pressure. My opening pressure was actually considered within the normal range for an obese person. The tech doing the lumbar puncture even said they'd never heard of someone being diagnosed with it at my level, which was 25cm. But my neuro said it's a combination of symptoms that lead to the diagnosis, and 25cm was enough to affect my optic nerve. I have a neurologist and neuroopthamologist currently. It's the headaches that kill me... I've tried a ton of Migraine meds and nothing helps, and the Diamox doesn't help that. It's very frustrating. But the Migraines COULD be a separate issue from the IIH, too. I could just simply have cluster headaches in addition to the pseudotumor. The world may never know. lol.

My neurosurgeon likes to perform an angiogram to see if the are blocked sinus something, can't remember, in addition to the IIH and put in stents when those are an issue. But sometimes it cannot be resolved simply... If you decide to go for it, we as a community support you.

[mousecat88 2,281]

3 minutes ago, GreenTealael said:

My neurosurgeon likes to perform an angiogram to see if the are blocked sinus something, can't remember, in addition to the IIH and put in stents when those are an issue. But sometimes it cannot be resolved simply... If you decide to go for it, we as a community support you.

Hm. I haven't had that brought up yet (the angiogram). I did see my ENT at one point during all of this, who had performed several sinus procedures on me a few years prior, and she didn't see any issues in the MRI. I'm going to see if the weight loss helps at all, and go from there with respect to the IIH. Regardless of how the surgery turns out for me, they are ultimately two separate issues and I want to ensure I preserve my vision. The idea of having vision loss is the scariest thing to me.

Edited October 10, 2018 by mousecat88

[mousecat88 2,281]

1 hour ago, AshAsh1 said:

This isn't the easy way out for all. And there is a cheat to everything in life... this is no exception.

Oh, for sure. I understand that. My coworker's daughter-in-law had this surgery. She didn't really want it, but her doctor told her she "had to". She lost some weight, and put back on 60lbs because she can sit there still and eat ice cream and chips and everything she was supposed to work away from. She still gets hungry.

I don't want to go through all of this and fall into old habits. I think I misspoke when I made my prior comment. I understand that this isn't a quick fix, by no means.

[GreenTealael 25,430]

4 minutes ago, mousecat88 said:

The idea of having vision loss is the scariest thing to me.

It's no joke

[GreenTealael 25,430]

1 hour ago, mousecat88 said:

I don't do well with therapists

Do it anyway, IIH and the neuromeds can take a toll on you...

[mousecat88 2,281]

16 minutes ago, GreenTealael said:

Do it anyway, IIH and the neuromeds can take a toll on you...

I know everyone means well, but therapy is genuinely not right for me. I have been seeing therapists on and off for the last 26 years of my life and have never benefited from it. In fact, the last one I saw actually made me extremely depressed (and I do not suffer from clinical depression). It is detrimental to me. And I have tried A LOT of different people, so it's wasn't just me giving up on it or not having the right person. No one is the right person, lol. I do a lot better on my own. I am doing fantastically nowadays and my psychiatrist agrees. If things change, I'll reach out to someone again. But for now, I am not wasting my money. The surgeon's office has a psychiatrist on staff I can see anytime I want to discuss weight issues specifically, so she is always there for me, too. I'd rather go to her, if needed.

Edited October 10, 2018 by mousecat88