Health Saga

[Semele]

Ok, I have had many questions regarding my health status and have tried to answer them, but realised the easiest way to do it would be to write it all out one more time, in a more complete manner. I appreciate everyone's concern and want to give you all the information we have.

After a recent battery of Lumbar puncture and follow up blood patch, and a trip to a specialist we finally have some answers. I saw a neuro-opthamologist in OKC, who is nationally known and very well respected for his work. He was an awesome guy. He gave us definate answers instead of guesses and hypothosis. Peace of mind at last. The official diagnosis is Pseudo Tumor Cerebri. There is no actual lesion to speak of, only the same symptoms as if there were a tumor. Mainly being increased intracranial pressure, ie too much spinal fluid floating around in my head. This causes the headaches and the declining vision. It presses on the optic nerve.

Causes for this are really unknown. Mostly affects young woman who are overweight. Mine started with the pregnancy, which is also fairly common. It also poses a number of risks and road blocks in the usual treatment of the condition. Usually the first line of attack is weight control and use of a diuretis (water pill) called Diamox. He wrote me a script for the drug but told me to check with my OB first. He also ordered me to have a MRI vascular image done asap. Well, when I asked the OB about that..she didn't sound too keen on the use of contrast. A phone call to the specialist elicited a response of, "It absolutely has to be done with and without contrast and immediately." What he is checking for is small blood clots in the vasculature of the brain. That could alter treatment greatly. My OB is checking with a Perinatologist regarding that and the Diamox usage, and will get back to me...seeing as it is 4:00, looks like I am on hold another day.

If they give the OK for the pills, then that could keep everything at bay. The main concern is that with pregnancy, as the baby grows, the abdominal pressure increases as does fluid volume which in turn adds to the ICP and the headaches and vision..etc. The condition is not lifethreatening, major concern is with the vision...damage can be permanent if not treated. He said he has had a few patients go completely blind. So treatment is foremost in our minds. If the med fails or if I can't take it, there are other options. He can do a surgery on the optic nerves to relieve the pressure and protect the nerves in the future. It fixes the eye problem permenantly, but not the headaches. He said it is an hour and a half surgery..outpatient, no big deal.

There are other surgical alternatives to the medication. They can do a Lumbar peritoneal shunt, which is basically where they put a straw in your lumber area and into the stomach...it drains the excess fluid and it passes through the body via the digestive system. It is a fairly uncomplicated surgery, but unfortunately, has a high fail rate and infection ratio. There is also a VP shunt, which is a lot more invasive, but he said it is the best overall choice, because it is more effective and has less malfunctions. It involves major surgery in which the "straw" is placed in the ventricles of the brain...to the stomach.

All of these are options that are up in the air right now. We are really just waiting to see what the OB says. Keep your fingers crossed for a successful medication run. We will deal with it one day at a time, as it comes. Even though it has been very scary and frustrating, we are dealing with it fine and are very optimistic that things will go well. This baby is going to hear about it for the rest of his/her life for putting me through this though!!

On a happier note, he did write me a script for some glasses. He was able to correct my vision to 20/20, which strangely enough none of these Tulsa dorks, I mean Docs, could do. Of course, the glasses are very ugly and you could kill ants with them from three miles away, but they work. Peripheral vision is still shot, but I can at least see the cars that are coming right at me now! Also he said I need to be able to see more clearly, so I will notice the subtle changes in vision that signal danger. If I have any sudden changes I am to see him immediately.

Thank you all for your concern and I hope this is a little bit more of a thorough update. You have all been very supportive through this all and I love you for it. Thanks! I will keep you updated.

Also, I have to publicly thank my husband for his awesome dedication and love. He is the most wonderful man in the world. Thank you, Van, for putting up with all the whining and irrational requests, for tieing my shoes, and just for being you! I love you!

[WandererInGray]

*hugs*

My thoughts and prayers for you and Mol and the little one, Semele!
May the least dangerous and least invasive solution be the best option.

[buttercup]

Add my prayers and positive energy to all the rest that will surely be coming your way. May you be wrapped in a cocoon of love and healing and emerge healthy, strong, and healed.

[CatDancing]

I'll be lighting a candle and saying some special prayers that everything goes well. May the Goddess hold all of you closely in Her loving arms and give you strength for each day until this crisis is past.
Brightest Blessings -
CatDancing

[Sequoia]

*BIG HUGS*

I'm glad that they can do something!!!! I was really really worried about you. . . I'm sure all of us who had any idea, were. You're special!!

and. . . my thanks to mol too. For staying with her as you have through all this. It must've been hard for you too, yet you've managed to keep both of you here! It's really important to us. . . thank you. Both of you. For being who you are.

I know everything will be ok :)

[Danustouch]

I'll be lighting a candle for you every night, and hoping things work out in the easiest and most painless (and pain in the buttless) manner possible for you :)

[Laiste]

You have my thoughts, prayers and healing energies are being sent your way! I hope that everything works out fine for you! And that you have a quick solution and recovery!! Blessings!

[shnen]

You and your family are in my thoughts and I am sending healing energy. Please keep us updated on your progress...

(((semele)))

[Mithrea]

You and your family are in my prayers Semele. :)

[Rubi Waters]

thoughts & prayers sent out to You, MOL & your family!!!!! :heartthro

[TheTempestuous1]

I am sorry to hear about that Semele.. I hope everything goes well for you, mol and your baby! I'll be lighting a candle for you, keep us updated!

PS. It's nice to hear you have such a great support system, keep up the good work mol ;)

Love and Light...

[materra]

I really don't know what to say, it has been quite a week for health news...but I pray for you and yours for the best of all possible resolutions. BB :)

[Nissala]

my thoughts and prayers are with you, mol and the baby:heartthro please keep us posted

[Old Witch]

Wishing you the best outcome possible!!!

[Witchy Cowgirl]

Blessings to you and your family.

[Semele]

Well, my docs finally agreed I could take the Diamox, so I started that today. Hopefully it will help with the headaches. I had a nice visit with the OB today and everything looks fine. Thank you all for your continued support.

[CatDancing]

Great to hear that the medication has been OK'd - will be continuing to keep you in our thoughts and prayers. Hope the headaches are much improved soon. May the Goddess keep you and your little one in her constant loving care.
Brightest Blessings!
CatDancing

[Witchy Cowgirl]

That's WONDERFUL news!

[PeleRising]

awww that is wonderful news Semele!!!!:D :D :D :boing: :boing: :boing: I will keep you and your little one and your fam in my thoughts....:)

[materra]

Sounds like a step forward..hope all continues well. You are in my thoughts. :)

[ChelleOfShadows]

I can only imagine what you have been are are going through, however I am very happy that you have found Dr's who are working together to get you through this! I will keep you all in my prayers for a healthy outcome!

[Nissala]

that's wonderful news Semele. I hope the meds help and the goddess keep you safe in her arms...

[Faery-Wings]

What good news Semele! I hope the meds kick in and you feel great soon. Give that baby belly a pat from me too. :)

[Rubi Waters]

Semele, so glad you got the meds approved....keep us posted on how your doing. :)
your still in my thoughts and prayers. :heartthro

[Desert_Shadow]

Semele, so very good to hear things are looking better. Just please continue to take care of you and the babe. I will keep you and the family in my prayers and sending energy you way. May the Lord and Lady protect you all.

[PrincessHLHofMW]

(((((((((((semele)))))))))) Glad to hear things arre starting to look up!

[Alaiyo]

May you the spirits watch over you and add my blessings and prayers to all of the ones that you havve received.

[Semele]

I have had a couple of questions on updates so I came to post it here. Not much else new to tell. I did have the MRV done without contrast at the insistance of the Neuro-Opthamologist. I hate MRI's anyway, but being pregnant I am really getting claustraphobic. This MRV is just like an MRI except it takes longer. I went on a Monday after working all night so I thought I was gonna go insane before they let me out of there. The real kicker is that they called the next day and wanted me to come back for some "extra" films a little lower. So I went through it all over again.

Now, the doc who ordered this test said it was just an extra precaution to check for the rare occurance of a venous thrombosis or blood clot in the vessels of the brain. I didn't expect to even hear anything about it, if I did it would be "everything is normal, continue as planned."

Well the next day my Neurologist here, A.K.A. Dr. Hotty:D called me and woke me up to tell me that the radiologist had called him rather than sending him a report with the results. He said there was no clot, but the blood flow was very constricted and the radiologist was very nervous about it. He wanted to do a lot more testing with contrast or go ahead and start treatment for venous occlusive disease. My doc said he didn't think it was that big of a deal and he thought that the blood flow would look strange anyway with all the extra pressure. He said he didn't feel comfortable treating it unless he knew for "damn sure" there was a need. The treatment consists of Heparin and coumadin therapy which is extremely dangerous with pregnancy.

He basically told me that the only reason he was even calling me about it was because I have so many doctors on my team that he has to report to and he doesn't want me to be shocked if one of them comes back and has differing opinions about the need to treat it. He also said he respects my opinions as a nurse and should I decide to treat it, let him know. I am content leaving it be for now, just not wanting to take any more risks with the pregnancy. It has been a couple of weeks and I haven't heard anything from anyone else so I think we are ok with this decision.

I have had a few instances of blurred vision the last few days that quickly go away. The headaches are prety much daily, but I am usually able to cope fairly well with them. The doc said we may need to think about taking the baby by C-section as early as possible to start more aggressive treatment with me. I know that babies do very well usually as early as 32 weeks. They spend some time in a NICU, but are usually fine. I am very familiar with the treatment of neonates, but still do not want my child to go to NICU. So right now that is my main concern, always has been, but a little more now. I still don't feel fetal movement, but I am trying to remain calm. If you guys want to send energy please direct it to the baby. Thanks for being here for us. I know some of you have been through your own hell lately and your capacity to give strength to someone else both amazes and touches me in ways I can't even speak of. I love you all so much!

[Desert_Shadow]

(((((Hugs)))))) , a whopping big dose of energy, and all the good thoughts I can muster for you and the babe!

[Laiste]

It's on it's way now!! {{{{{{{HUGS}}}}}}}}

[Old Witch]

Sending right now!!!!!

[Witchy Cowgirl]

energies on the way!

[Semele]

Well, I am skipping work tonight, so I guess I could at least update everyone. I haven't been able to keep anything down, anything I eat comes right back, except for water, thanks for small favors! So at work the other night I was back and forth in the restroom and a coworker called my Doc for me and they called me in some Phenergan. It helps a little, but it makes me very tired. So, just to let you all know, I am still hanging in there and thinking of you all. Thanks again for all the love and support!

[Danustouch]

((((((((((((((HUGS))))))))))))))))))))))) to you. Still thinking of you and sending healthy happy vibes to you and the wee one.

[Semele]

I just dug up this old thread rather than starting another one. I wasn't going to bother with it, but I really could use some energy and prayers right now. This community has given so much to Mol and myself that I hate to ask for more.

Quick update..obviously had the baby and she is great. The Diamox that they had me on is no longer working. They have already increased the dose and when I saw the Neuro-opth on friday he said there isn't much reason to believe that increasing it again will do any good. He is sending a letter to my nuero here to have him get another LP for an opening pressure. Depending on the pressure reading possible shunt placement. I am not too keen on this idea for several reasons. Tho most obvious being, I just don't want to have surgery right now. Another big reason is that even though they can be very effective, it often takes several attempts and revisions etc, to get the things to work properly for each patient. they do have the newer programmable shunts that are better, but still trial and error as far as getting the settings right.

My vision is stable and the optic nerve looks good. However, the biggest blow in my opinion is the fact that the damage to my vision is permanent. I was holing on to the thought that after the pregnancy etc I would get better and so would my eyes.

I am debating with myself about the decision. I am half tempted to not even have the lp done because of the problems I had after the last one..and just pursue pain management for a little longer. At any rate, I will keep you all updated and I appreciate any positive energy you could spare.

Thank you.

[mol]

:(

I love you, sweetheart. You have all of my energy.

[Phoenix Blue]

:( **Hugs for Semele** Hang in there. . . my thoughts are with you, too. **Soft smile** And you receive nothing here that we don't give freely. . . so don't feel guilty when you feel you need to ask.

[WandererInGray]

*hugs* Done, Semele.

*hugs and energy for Mol too* :)

[Old Witch]

I'm sending energy and lighting a candle. Goddess grant you the wisdom to make the right decision for you.

[Athena-Nadine]

{{{semele and mol}}}

I gladly send whatever energy I can spare, Hon. Take care of yourself.

[Danustouch]

Energy sent....take care, and do whatever you feel is the right thing for you to do.

[Laiste]

{{HUGS}}
Llighting a candle and sending energy!! My thoughts are with all of you!

[Yvonne Belisle]

You have it from all of us.

[Lunacie]

{{{Hugs}}} energy and prayers on the way.

[CatDancing]

Lighting a candle for you Semele and asking the Goddess to hold you tightly and help you make the best decision possible. My thoughts and prayers are with you and Mol and your precious little one.
Brightest Blessings -
CatDancing

[Rubi Waters]

Love ,Energy & prayers sent your way.
((((Semele, Mol & family))))

[materra]

Warm hugs, universal energy freely given. Best wishes.

[Ravens_Tears]

Of course!!!! (((((semele, mol & sweethearts)))))

[Semele]

Well, I guess they will do the LP on Wednesday around noon. Wish me luck.

[materra]

Absolutely you have all our love and wishes for the very best of out comes. Warm hugs for all of you. BB

[WandererInGray]

*smiles* More than luck, Hon. We'll be thinking of you.
Hope it all goes well. *hugs*

[Old Witch]

All the luck in the world to you!

[WtchyChick13]

I'm sorry I saw this so late.

Much love sent your way babe--to you and of course the rest of the family as well. Big major super hugs!!!



(((((((((((((Semele & Family))))))))))))))))))



Here's something to put a smile on your face...It's a circle of smilies raising happy super smilie energy for you!

[Ahautenites]

How in hell did I miss this thread???

**sending as much love, well wishes and healing good vibes as possible your way**

Ankh seneb her nekhtet, Semele. (Translation: Life, health, and success.)

[Azure]

Many good thoughts headed your way!!!

[Ravens_Tears]

I hope it goes well:) (((((to all))))):heartthro

[Psyche Ague]

*Sends energy and love to all*

[Seren Mara]

Semele, I'm thinking of you! Hope everything goes well.

[Semele]

Thank you all for your support and prayers. I will let you know as soon as I find out anything this afternoon.

[labgoddess]

Semele!!!
I totally understand what you are dealing with! I've been fighting for almost two and a half years to get a diagnosis on my vision loss and 'permanent' headaches.
I've been pushing and pushing for all kinds of tests and for a true neurologist, but with our health care system - I'm up that creek without a paddle. (Manitoba does not have any that are available that specialize in neur-opthamology)
I investigated all the causes of the blindness setting in and yes, I did stumble upon your diagnosis. And if my MRI (may8th) doesn't show any lesions or tumours, I will basically be told I have the same as you. But, they have not detected any notable increase in intercranial pressure. My peripheral vision is completely gone (tops, sides, bottom) and my central vision is getting progressively worse. I am 'this close' to restricting my liscence for night driving, as I am blinded by the lights now.
I travelled almost three provinces away from here to have tests done and I know my retinas are fine. They pin pointed that it is a neurological malfunction, either in the optic nerve or the brain itself.
I also have optic nerve head drusen, but from all the research I have done online, in books, and according to other doctor's opinions, it does not cause this amount of damage in any patient. The other really disheartening factor is that I am 22 (23 next month). Drusen do not usually show up in people until they are in the 60's or older. I was informed that the technology to do the surgery/laser work is not available here and I will not be covered to travel abroad to have it done. Lord love Canada's health system!
I've been off work since December trying to get some answers. Other than gaining a depressed state and a feeling of being totally not important and useless, not much has been accomplished. I am now at the point where I do not feel 'safe' enough to work in my respective field. I am a lab tech by trade and value my eyesite beyond belief. So the reason why I am getting upset is: 1. I have no answers; 2. I'm young and scared with no history of this in my family; 3. I've already had one sibling with cancer and know my chances are high; 4. I am scared that if this progresses, I won't be able to continue to work in the field I love.
It only took a month and a half to BOOK my MRI and only a month a week to have to wait for the actual day. My CT scan revealed absolutely nothing, and the only thing to show any interesting results was my VEP (visual evoked potential) test done in Ottawa. What hurt the most is that my opthamologist still thinks I was just 'tired' at all my visual field tests and that I was too lazy to look at the flickering lights. (I could just hit him!) But now he has to choke back his comments as they are proving it's not my imagination (or due to laziness).
When I get my results of my MRI and it shows that I have a lesion/tumour/blister, I'm going to let loose such a torrent it isn't even going to be funny.
I will also be speaking at the legislature on behalf of patients lost in the waiting list shuffle and this grand system we call health care in July. I can't wait. It's really sad that I had to go political (and against the party in power) to have my name looked at and coded properly, as I was marked as an urgent case. (but somehow elective and urgent cases are treated the same in this system... don't you feel lucky?)
I have to stop typing here, as my anger with the whole situation is rising and rising. Thank you for posting something that has greatly affected your life. You've let me know I'm not alone. Thank you!
C.

[labgoddess]

I feel like a dolt here...
I appologize for barging in on your thread like that.
Reading your post just moved me so. It brought up a lot of issues I was trying to bury so I could 'function' in everyday life.
I truly wish you and your family all the best. Things do get better! And try and remember that beyond each shadow is a brilliant patch of sunshine ;)
Take care.
C.

[Lunacie]

Hello LabGoddess, I'm sending good thoughts and energy your way as well.

[materra]

And for pete's sake, don't feel like a dolt... we all empathize with "losing it" when we see a post that strikes a cord. So warm hugs to all of us vision impaired folks.

edited for spelling, grammer be damned.. ha ha.

[Semele]

Labgoddess,

I am sorry you are having to go through this ordeal. Healthcare services can be extemely frustrating. When this whole thing first started with me, I changed doctors. The original doctor told me, after a huge fight to get the MRI done, that I needed to get my eyes rechecked in a year. I had already made an appointment with the new doc at this point and thankfully enough the Diamox that they started me on kept the Papilledema under control. Had I followed their advice and rechecked my eyes in a year, I could have been completely blind. GGRRRRR!!!

I know what you mean about those stupid visual fields tests. I feel drunk and sick by the time I finish them. Keep at the docs until you get some answers and I am sending you warm thoughts and hopes for better days.

My opening pressure was 24 or 240. The normal is between 8 and 17, so it is still high. However, the neuro-opth was looking for a number below 30 to treat medicinally, so there will be no need for surgery yet. I am not too sure I would have went that route right now anyway. I had a much better experience with this lp. The doc went ahead and added a little blood as he was extracting the needle and he used a smaller needle etc. It was great compared to the last time.

[labgoddess]

Awe,
thanks everyone!!! :heartthro
((((((HUGS))))) all around :thumbsup:
Warm thoughts to you too :)

[labgoddess]

I've been fighting for almost two and a half years to get a diagnosis on my vision loss and 'permanent' headaches....
I investigated all the causes of the blindness setting in and yes, I did stumble upon your diagnosis. And if my MRI (may8th) doesn't show any lesions or tumours, I will basically be told I have the same as you. But, they have not detected any notable increase in intercranial pressure. My peripheral vision is completely gone (tops, sides, bottom) and my central vision is getting progressively worse.... They pin pointed that it is a neurological malfunction, either in the optic nerve or the brain itself.
I also have optic nerve head drusen...I've been off work since December trying to get some answers. Other than gaining a depressed state and a feeling of being totally not important and useless, not much has been accomplished. I am now at the point where I do not feel 'safe' enough to work in my respective field. I am a lab tech by trade and value my eyesite beyond belief. ...

Howdy!!!!!! I hope that you are feeling much better and finding ways to compensate for the losses that you have to deal with now.
Don't mean to step on your health saga link, but wanted to give you a bit of an update....
Okie dokie...
My MRI revealed no brain lesions/tumours/blisters. So that is good. It did however, point out that my optic nerve is thinning at the optic chiasm. But what is causing this is not known yet. I met with the only neuro-opthalmologist in this province a few weeks ago and she corrected some things I have been lead to believe. She is sending me for another MRI (with enhancement dye to visualize blood flow, etc) and is waiting to see if the government will approve the test. I'm being given eye drops to pharmacologically constrict my pupils to help with the night blindness. Who knows, maybe this will help my headaches too! The nero-opth. stressed that there are about three or four different things going on at the same time, so it might be a while to break them down. But she agreed with me, even suggested that I hurry up and get a new opthalmologist. (heh heh) As for the loss of peripheral vision, well nothing can be done (which I knew b/c it's nerve cells) but on the positive side - I'll never go completely blind based on the drusen alone - just really severe tunnel vision (which renders me legally blind, but still!) And yes, I am starting to be less angry with the whole dealy. So I can't be a tech anymore.. big deal.. I'm headed for the big leagues now - the corporate world to be safety officer, supervisors... blah blah blah.. it'll work out! It has too!! I've been a good person (hee hee hee)
That's all for now.. take care! I'm taking care too ;)
Warmest wishes and a big BIG hug for you!!!!!!!!!!!!
C.