All

Please read the context of the email that I just sent to my Neurologist after my visit with the neurosurgeon regarding the shunt surgery. I would appreciate any feedback or guidance.

"Dr. XXXXXX

Since we last spoke when I was concerned about using the Fentanyl patch I have had daily, often unbearable pain. I used a single three day dose after our conversation but have not used it since as I am not sure that I can function appropriately at work while taking the Fentanyl.

As a result of continued constant pain I met with Dr. XXXX yesterday prepared with a list of over twenty questions but almost resolved to having the shunt surgery. He had some reservations about my having the procedure. He stated that as I only experience the pain and increased CSF pressure upon LPs and do not have the visual problems associated with IH; that he is not certain that the diagnosis is correct. He also stated that I am an extremely different and difficult case as I am neither female nor am I obese. Because I am not a traditional IH patient and only exhibit the pain he was concerned that the shunt may cause more problems than it would resolve. Specifically if I had headaches post shunt surgery it would not be apparent if it was caused by increased or decreased pressure or by shunt malfunction and that the same logic applies to infection. Infection he said may not be identified as it may be site specific thus not accompanied by fever.

Attached are some extracts that I found on the website for NORD - National Organization for Rare Disorders. In it states “The most common symptom is often an unbearably painful headache”, it “most often occurs in young, overweight, females in their reproductive years (ages 20-45)”, and that “Weight is not usually a
factor in men and in children under 10 years of age.” I have provided the URL below.


[You must be registered and logged in to see this link.]


He feels that further tests need to be done in order to confirm the diagnosis or possibly even find the cause. He suggested having a CTV. He also showed Trudy and I an image from my last scan that showed that one branch of the sinus vein has no flow or was never fully developed from birth. He said that if it can be confirmed by measuring the venous pressure in the sinuses that would verify the diagnosis. He also stated that had to be done by a catheterization and that it couldn’t be done in Jacksonville and would have to take place in Gainesville if it is decided there is a need.

I left his office with more questions than I had answers and now am in limbo. I asked him to provide you his assessment and that I would follow up with you to determine next course of action. As I write this email I am in unbearable pain and don’t know what to do to get my life back. Please carefully weigh my options and advise accordingly."


Best regards

Mark

Mark,
You did a great job on your email. Not threatening at all, lays it all out for your NS, very straight forward.

If you do not get the response you are hoping for, may I suggest taking a trip straight up I-95 to DUKE. My Neuro-Radiologist, Dr. Linda Gray Leithe, would have no problem at all in helping you. Same goes for my Neurosurgeon.

Thanks Wylee. I'm not hoping for anything specific except to get pain relief and have my life back.Duke is a great university and medical center. I will keep it in mind and reach out to you if I opt to explore. I'm not sure if my insurance would cover it though.

Mark

My Doc would be glad to talk to your Doc if you would like. Keep that as an option too. She has done that for many others. She is well respected in the field, so her suggestions carry weight.

I go to Duke (North Carolina) with my Tennessee insurance. BCBS did great on my shunt surgery. Cost is over $30,000 but my cost is less than $200. A lot of it depends on the need to see a specialist. They know that often it requires out of state travel.

Keep us informed. And good luck!

That's a great email, and I think you articulately covered everything in a very straightforward way without digressing from the points you wanted to make. I hope that the reply you get is equally as thought out and informative. My fingers are crossed for you.

[You must be registered and logged in to see this image.] Heidi

Thanks Heidi. I have heard back from my neurologist and replied back again to him.

Dr.



Mark:

Fentanyl patch comes in a lower
12.5 mcg dose. I will speak with Dr. XXXX. Main issue, in his opinion, is
inability to completely be sure that high pressure is not related to narrowing
of the venous sinus (note that venous sinuses can be dilated and stented). If
he is hesitant to recommend shunt, I am willing to have you see a neurologist
who is a “headache guru” for a second opinion. We can talk over a few options
with respect to who is best for you to see.
Scott XXXXXXX, M.D.

Mark



Dr. XXXXXXX


I first came under your care
nearly ten years ago because the two “headache gurus” were you and another
neurologist at the Mayo Clinic. My insurance doesn’t allow for treatment at
Mayo so you won by default. To further validate my decision, shortly thereafter
you were on the cover of “Jacksonville” magazine on the month that they feature
Jacksonville’s best doctors. I am profoundly confident in your ability and
believe that you are the best person to manage my condition regardless of other
doctors that you may have me see.
My current status of daily and
often severe pain is not a result of seeing the wrong neurologist. I am in
unbearable pain right now and my edict to you is to help me get my life back. I
don’t know why the time in between LPs is narrowing over time and a hate having
them. You suggested the shunt in lieu of continued serial LPs while I am still
relatively young. The thought of shunt surgery has weighed heavily on my mind
and certainly not something that I necessarily desire. Please do whatever is
needed to stop this.


Mark

I am impressed that your Neurologist has replied to you so quickly, and that he is very open to discussion with you, and that he is trying to find the right solution for you. I went through all manner of surgery from shunting to having 2 subtemporal decompressions to prevent permanent loss of the rest of my vision and to help the symptoms. I like you had the attitude of "do what you have to do, to give me back my life", so I commend you 100% on having that attitude.

Please don't let this eat into your spitit and determination for a better life, because you will get there and I know it is easy to say, but you are here with kindred spirits who know what you're going through and can identify with how you feel. Being at this stage is a hard path to travel and it isn't without it's disheartening moments, so if you have a stubborn streak, and I think that you have, keep firm to it and keep telling yourself it wont always be like this.

As always we're here for you and you are not alone but with a good solid support network of IH/IIH 'ers.

Heidi

Thank you so much for keeping us up to date on how you're going, , I am familiar with that particular article, and I applaud you doing your own research and weighing up all your options. Being thoroughly informed is half the battle I think when it comes to your treatment and care, because Doctors for all their best intentions do not expect to be able to discuss them with you as they think it may go over your head or scare you.

I'm positive that your Doctor will be very pleased that you are looking at all these options and that you are open to what intervention you feel approproate with his recommendation, because you have taken the time to explore them.

I hope that you can both come to a mutual decision that you will be happy with, and will alleviate the pain you are in. I know how chronic pain like this can severely diminish your life and drain you. So I will as always keep my fingers crossed that you get the outcome you need and that this year you will be able to enjoy it without pain and suffering.

Heidi

Thanks Heidi. I just found a similar case study that you probably are also familiar with. This one studied 52 patients and found that of the 52 patients, 49 have been cured of all IIH symptoms. Below is the URL.

AJNR Am J Neuroradiol. 2011 Sep;32(8):1408-14. Epub 2011 Jul 28

Transverse sinus stenting for idiopathic intracranial hypertension: a review of 52 patients and of model predictions.
Ahmed RM, Wilkinson M, Parker GD, Thurtell MJ, Macdonald J, McCluskey PJ, Allan R, Dunne V, Hanlon M, Owler BK, Halmagyi GM.

Source
Department of Neurology, Royal Prince Alfred Hospital, Sydney, Australia.
[You must be registered and logged in to see this link.]

I have had a positive result from my VP shunt. Granted, however, this is my 2nd one in 3 months but nothing usually goes smooth for me anyway!!

Good luck to you & hope you are feeling better