Sorry you are having such a time. Do you know what the opening pressure reading was from your spinal tap ( LP)? Have you seen an opthomologist?

Hope

Thanks ! I have an appt Friday I made one after I read more and more on this board. My FU appt isnt until Oct 6th and she didnt bother telling me anything while doing spinal tap she was kinda dry and rude like I was bothering her that day

A clean MRI is good, which means that there is no tumor causing the pressure. You can call their office and ask what the opening pressure was, but you need to know that number. If he checked your eyes, did they see swelling of the optic nerve?

This is just my opinion so far but find an opthamologist, not a regular eye dr, and have them check your sight and your optic nerves.

With the issues that you are having with the neurologist, find another one. They can request your MRI results so you shouldn't have to redo that one, but I would suggest getting another spinal tap done at a hospital. Make sure to lay completely flat for at least 4 hours afterwards and then couch rest the rest of the day with plenty of caffiene. Ask what your opening pressure is, they will tell you. Anything over 20 is too high.

Diamox is the medicine of choice as it is meant to lower the amount of CSF, cerebral spinal fluid, production. You can take medicines like Exedrine Migraine (has tylenol, aspirin, and caffiene), or possibly seek help from a pain management specialist that can offer other medications for you.

Honestly, each person reacts differently to each type of medication and has different/varied symptoms.

You do not necessarily have to have papilledema to have psuedotumor cerebri or the new name Intercranial Hypetertension (IH) but your spinal tap measurement and lack of other evidence on your MRI will be the deciding factor on your diagnosis.

Best of luck,
Hope

Shelly, you got some good information already. I can tell you that I can relate with the pain. Before my diagnosis, I would have constant pain and then sudden bursts of extra pain that would make me literally cry out in pain (in public!). Nobody took me seriously-attention seeking teenager, depressed, drug seeking, etc.. I got all the labels :-)

Obviously I was not. 2 yrs later and I'm still in pain.. a little bit less but still fighting. If I can hang in there this long, you can do :-) Don't give up. Get informed, educate yourself, educate yourself, and protect yourself as a patient!

Good luck!

All great advice...if you haven't done so go to the IHRF website and read read read. Take notes and take printouts to the drs with you if you want to! And if your dr is not doing his/her job...find one who is willing to know what's going on and work WITH you! I have been through 4 neuros...this last one is good...gives me fits sometimes but sometimes I think that is more me getting confused than him being an @ss! Lol (lord knows I confuse myself most days) also think about a pain management specialist....after all that is their job...to try to keep you out of pain. Good luck sweetie!

Hi Shelly,

Find yourself a good pain management doc and they will sedate you or fully put you out for any more LPs if you want. The first I had was HORRIBLE and have been asleep for everyone since!

I was 290lbs when I was at my heaviest, I had 5 surgeries, but the only one that helped long term with PTC was a gastric bypass.
I hope that your PTC does not get bad enough where you need more than medicine to treat it but if it does here are some things I wish I had known when I first got sick. I know this is unsolicited advice and feel free to tell me to shut up.
Anyways, there is hope, it can get better, and I say this even as I feel so depressed and am getting a headache and fighting to keep my job.
I felt for a long time that I would never get better and just wanted to fall into a coma or something overly dramatic like that so I would not have to deal. But I stopped feeling so sorry for myself (well ok, I still have a pity party now and then to be honest) but things can always be worse!
I don't know if this is more depressing or helpful, but what I wanted to say is I wish I had the chance to have the gastric bypass before I had a VP shunt, because the shunt only worked for 3 weeks or so, however at the time my vision was in immediate danger. Now I have this possibly useless piece of hardware in my brain and body, when the bypass seems to have worked for me.
Check it out, the bypass I mean, some people lose hundreds of pounds and it doesn't help with the PTC, but it might.
However, a gastric bypass is hell!!! For the first two months the recovery from the gastric bypass was horrible and I regretted every minute of the surgery, they really don't tell you how bad it is going to be afterwards and for how long. I am still not sure if I would do it again, but I am glad to have less headaches. The recovery from the bypass was harder than the recovery from my VP shunt, I mean that is brain surgery!!! I had the bypass in June and if I continue to get better then it will be worth it. It is just such a serious surgery and life threatening too.

By no means see a gastric DR who is a quack you know the ones who assembly line them, find one with a comprehensive before and after care plan.
I know I am all over the place here, that is my pain meds, but thank god for them! If I can help you in any way please let me know. I promise I am not quite as crazy as I sound!!
Also talk to Cath, she is so awesome and knows so much about PTC.

As far as your doc being rude, don't forget doctors work for you, you are their boss, they are a consultant you hire for a specific job and if you don't like they way they do the job you require fire them!
Emerson

Thanks for all the advice!!! I have been on a Lifestyle Change not Diet! And down 37.2 pounds as of today ... it is slowly but surely moving off.... I saw a Ophthalmology and he doesnt see any swelling on the eyes and my vision is find he said ... I was mostly pain free headache weekend very dulll at time today FULL FORCE........ I have a friend whos dad had a shunt and his headaches are wayyy worst!!

I am having trouble with my spinal tap area .... she hit the nerve a few times and now what I think is the Siactia Nerve is really giving me problems I am having trouble moving around getting up and down and walking .. I forced myself to work and I am not sure I should have ...

I am so tired of hearing co workers complain cause I miss work ... I would MUCH RATHER be here than at some dam Dr appt or in bed in pain crying all day!

I am getting a second opinion from a new Dr he is waiting on my medical records to come to his office to look over .... he said he seems to know what I have and didnt mention this so I am so lost and confused ......

Shelly