Its going

Wow!! My last post was November 9th!!! Shame on me.

A lot has been going on. Well duh, its been almost two months!

Let's see, where to start.

Things had steadily improved with me. I started driving again, started going out of the house, heck I got a bike for my birthday and have rode several times with Miss Piper. I would say that things were looking and feeling much better! My pain levels seem to be under better control and the drowsiness and sluggishness has finally gone away. As far as sleep goes...well that is still a constant battle but I will take the little victories for now.

I had my follow up with Dr. W at the beginning of December in Baltimore. He was pleased with my progress. We discusses changing the setting of the shunt but decided against it because he feared that might do more harm than good. He made it very clear to me that my body and my brain have been through a tremendous amount in one year and I need to take things slowy. I cannot expect to be right back where I was a year ago in just a week. We also talked about what to expect in the future. Unfortunately, shunts do not last forever. They typically only last 2-6 years and then they will have to be replaced. Sucks, I know. But as Dr. W said, you cannot go around everyday just waiting for it to fail, you have to live your life. The plan is to go back and see him in 6 months unless there is a problem then I will see him before then.

He did agree that if I wanted to try going back to work part-time then that would be okay. He did stress the part-time and wants me to take it slow. Wes and I had thought about me filing for permanent disability (which I would more than qualify for) but I really want to be able to work! Crazy as it may be, I miss my job. So after much deliberating and soul searching my first day back was on December 14th.

So how has work been going. Well....its been hit or miss. more on that later.

I am still seeing my awesome Pain Management Doctor and he truly has been a life saver. I really think if it were not for the pain meds I take daily I would not be able to make it through each day. Through my appointments with him, he has also diagnosed me with Chronic daily Migraine. Fun times, kids.... He says this is quite common in people with Intracranial Hypertension. As time goes on I am now able to tell the difference in a pressure headache (Intracranial Hypertension) and a Migraine. There are different ways to treat the two of these so knowing which one I am having at that given moment helps me in determining what medicine to use.

So things had been going really good and then the week of Christmas I started to feel not so good, and to be honest I have just not felt very good since. Sigh.......

At first I just thought it was the stress of Christmas but now I am starting to get a little worried that maybe my shunt is malfunctioning. I have had some ringing in my ears and several episodes where my vision has become blurred and spotty. Dr. C, my pain management Doctor wanted me to try a three day course of Relpax and prednisone this week but after two days of that I just could not take it anymore. This medicine make me so sleepy and tiered and just plain ughhhh. So I took the medicine on Tuesday and Wednesday and said NO MORE. Thank goodness the girls went to there dads today (Thursday) I slept till 4:30 this afternoon and that's with me going to bed at 11:30 last night!!!!! See I told you this medicine was evil!!!!

Remember how I said earlier that work was, key word was going good. Well this week I have only been able to work one day. Sighhh.. thats not good. Basically I think I am going to half to break down and call Dr. W in Baltimore and see what he thinks is going on. I don't know if maybe I need another Lumbar Puncture to see what the pressure is or what?

I really wish this would go away. I think my family seems to think it should have. Somehow I don't remember being told that? Will they ever just accept that this is a part of who and what I am now? This has got to be one of the most fustrating parts of this disease, helping other people understand. It is just not magically going to go away, it does not work like that.

So that is my update for now. They are calling for snow here and thats always fun...

I will make some calls tomorrow to Doctors and hopefully start the ball rolling to find out why I was feeling so good and now feeling so bad.

Number 4

Number 4

That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.

This surgery was a little different in a few ways.

For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.

The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.

I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.

Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.

So a big hug and kiss from Mom and Dad and off I went.

The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.

As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.

To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.

Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.

I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.

From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.

I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.

As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.

Update

I've been bad.

I have not updated like I should have but to be fair my eyes have bee hurting so much and the instances of blurred vision and black out vision make it kind of hard to be on the computer let alone type.



The testing in Baltimore went like thy thought it would. DUH.ummm yeah!



I ran he gament on the pressure monitor from 5 all the way to 60/600. As Dr. W said there is no doubt that I have IIH. So what is the plan?



Well part of the plan involves the fact that I am sitting in Baltimore typing to you right know from a hotel room!!



Surgery is tomorrow at 1:30. I have to be there at 9:45. They will be placing a new VP shunt in. This time they will go in on the left side (the previous one was on the right)



I am really hoping that this works but at the same time I am going to be honest with myself in knowing that it may not. It could take care of all of the headaches, it could take care of only a few, it could take care of none.



But for now we will hope for the best.

I am sure the next update will be filled with lots of information.

Till then.....

Burning Bridges

Burning Bridges….?

Well yesterday was a very interesting day to say the least.

I did something I have never done before and never in a million years thought I would actually do.

In the middle of a Doctor’s appointment I walked out. I stood up interrupting my Doctor’s toddler like tirade, told him I did not appreciate him talking and acting that way towards me, and left.

Yep, you read that right. The above is not a typo.

And to make it even worse I left my poor mother behind sitting there in the office. (to be fair to me though I thought she would follow, you will see in a minute why she did not)

I know what you are thinking right now… Oh no she didn’t !!!!!!

Oh yes I did.

Here is what happened.

I went to see the Neurologist that I have seen numerous times in the past (technically I am still his patient) and he is actually the one that diagnosed me with Intracranial Hypertension. Throughout the past nine plus months he has said numerous times that he in not an expert when it comes to Intracranial Hypertension and has limited knowledge on it. Okay fair enough. He was also thrilled when I found Dr. Williams (the Dr. in Baltimore)

You keeping up so far?…Good let’s keep going

Well….Since my shunt is no longer, and that is what controlled the spinal fluid, and the spinal fluid is what causes the horrible head pain…well bingo…the horrible, gorilla type searing head pain is back. This is not good. I am having, at times, uncontrollable headache/migraines. Because I am still dealing with the Meningitis and on I.V. antibiotics, I have to wait until that infection is cleared before I can have another shunt placed. It probably will be mid to late October before that happens for various reasons.

Being that Dr. Williams is in Baltimore he felt it would be best if someone locally to me dealt with and controlled the pain aspect of things. Seems logical right? Ummm apparently wrong, wrong, wrong.

No Doctor wants to have anything to do with the level of pain management care that I need and let’s just say that my Neurologist here (NC) was not thrilled with being told I needed pain management care done locally. Hmmm, truth be told he just really did not like being told anything by another Doctor and that’s why this whole ugly matter of me walking out of his office with him in mid sentence happened.

The office visit started out “normal” enough. I met with his P.A. and went over what had recently gone on with me and blah, blah, blah. Like always she went to confer with said Neurologist and Mom and I waited.

He walked in after I had talked with his P.A and shit hit the fan, so to speak from the get go. He felt “Put Down” and did not appreciate some “Baltimore Doctor” telling him how to treat a patient and that “Doctor did not even have the courtesy to call him to confer or anything!!!” He was “Not going to prescribe ------ medication just because some other Doctor said so” and on and on. It was like a four year old having a tantrum. The breaking point for me was when wonder boy jerk Doctor said that “those Doctors in Baltimore are treating me like and Intern” and that he had “already done his internship”

It was like the man had slapped me at that point. I was done. I stood up, tears running down my face, voice shaking and told him “I don’t appreciate you talking to me that way, you have no right”


Whew……got all that.

Needless to say after walking out of there I was a complete mess crying and shaking.

So let’s all take a minute and breathe and assess the situation…

Basically my jerky Neurologist (that’s what we will call him, I won’t name names) felt put down by Dr. Williams. He did not like being told what to do and he felt like he was being treated like a student/intern. I think he felt like Dr. Williams was treating him like a “seconded” class Neurologist without ever once speaking to him.

Well fine and dandy but as a professional he should have dealt with his feelings of anger and frustration before he ever walked into the exam room where I was. He had no right to act like he did towards me, let alone talk to me the way he did. There is no excuse for that. Doctors are not Gods. Plain and simple. I think they sometimes forget that they are working and doing a service for us. Now, don’t get me wrong I am very, very thankful for all the wonderful Doctors that are out there. Without them I would be in a heap of trouble. But some like him need to be taken down a notch or two.

Ok… Now my little four year old tantrum is over now.

So you’re probably wondering what my Mom did when I left her sitting there. Like I said before I really thought she was going to follow me.

After I left she voiced all the frustrations I had but just didn’t have the energy to say.

She calmly and assertively reminded him that I was still his patient and what was I suppose to do from here? How was I suppose to handle the pain aspect of things and mange until my next shunt surgery if everyone (Doctors) continually wanted to treat me like a ping pong ball and never truly take action and responsibility towards the problem?

From the start of this whole mess it has been a battle of Doctor vs. Doctor and Neurosurgeon vs. Neurologist. Huh? You say… Well… The Neurologist says that all my issues need to be handled as a surgical problem and then the Neurosurgeon says that they need to be handled as a Neurological problem. Frankly I don’t give a damm and just want someone to handle them.

Anyway, back to the battle of the Neurologist and Mom

He hemmed, he hawed, and he continued to be a jerk.

Mom held her ground. She said over and over to him “What is she suppose to do?”

She never raised her voice, she never got ugly.

She told him that we had not left his practice because we did not like him or thought he was a bad Doctor, we simply sought additional resources because he had even said that as far as the Intracranial Hypertension aspect of things he was just at a loss of what to do.

This is when he calmed down. I think he finally remembered that he had said that.

He apologized.

Good for him…..

He apologized for acting that way to me. He said that he just was a little floored that the Doctors in Baltimore would just send me back into him without calling him, sending records, notes, ect…. and just expect him to do “whatever” without some form of consultation.

In all fairness, yes I can be fair; I can see his point on that.

However and a big, huge, gigantic however is the fact of how he handled the situation. It was uncalled for, unprofessional, and in my eyes unforgiving.

He had his panties in a bunch over his pride. He felt put “off” by another Doctor. Simply put…..he handled the given situation before him poorly.

So, did we walk away with any pain management care…..nope.

But what did happen might surprise you, heck it even surprised me.

Fred Flintstone

Fred Flintstone


Welcome to Bedrock!!!

Well my ankles are welcoming you that is. They are more like cankles at this point. They are swollen and hideous. It’s a good thing it is summer and I can wear flip flops because there is no way these puppies would fit into a pair of shoes.

I woke up on Thursday and right away noticed how swollen both of my ankles and legs were. Of course I was panicked by this. After a couple of phone calls, off to my PCP it was. Considering that I had just had major surgery and the swelling was severe he was concerned that I may have developed a blood clot in my legs. The only thing that made him think it may not be that, was the fact that both ankles and legs were involved. He sent me off to the hospital to have an ultrasound done on both legs to rule this out. While I was going to be there he went ahead and ordered the CT head scan and X-ray of the abdomen. (one less trip to radiology works for me)

The results can back pretty quickly from the ultrasound…no blood clot…that’s good! Now what is causing all the swelling? After looking at all the meds I was taking we think we may have found the culprit, a muscle relaxer. One of its rare side effects (like less than 1%) is swelling. So no more of that for me…easy enough right? Wrong!!
BTW- The CT of the head showed that the bleed in the head was still there but it had not become any larger.

You would think that simply stopping that medicine would solve the problem, yeah me too. Well the problem is still here and it is now causing my hands to swell!! My poor feet almost look square they are so swollen. As of this evening my calves are swollen and very sore. None of this can be good. I may not hold a medical degree but I do know that something is not right. It goes without saying that tomorrow I will be headed to the Doctor…again

For everything else well…..I had a horrible headache most of today, my side is killing me, and the whooshing has come back in my ears sporadically. Wes goes into work tomorrow for a three day trip and the girls are with there Dad until next Sunday.

Sounds really gloomy but on a positive note…the sun rose this morning and so did I.

Falls into place. Falls into peices

Home sweet Embassy Suites Home!!!

Considering it has been some form of residence for my parents, Wes, or me for almost a week now.

I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...

So to be honest this has had me in a not so lovely mood.

As far as how I am feeling? Well do you want a sugar cookie answer or the truth?

Ha Ha...you know I am going to give you the truth.

I feel horrible. But hey, what do you expect? I just had brain surgery.

My symptoms and pain are still here....they left for a little while but then they came back....why?

I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.

Well that all went to shit pretty quick.

It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.

This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.

Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.

#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.

#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.

#3 and most important- The headaches were gone for 2 1/2 days, now they are back.

This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.

So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.


Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.

Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.

I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.

The problem now, is that I keep falling into pieces.

In Baltimore- Pre-Op }}}}}}

I had my Pre-Op Appointmnet yesterday and everything went well.

As Trey pointed out its a good thing I liked her considering that I am having surgery with her on Friday and all.

Dr. Zeena Dorai will be doing the Surgery at Sinai Hospital on Friday. I have to be there at 7:00 am.

I am so ready to get this over with. She made me feel very at ease and comfortable. She went over my last CT scan and pointed our how small my ventricles are. This is very common in patients with Intracranial Hypertension. She did say that she liked the placement of my current shunt.

So what is the plan???

There will be a General Surgeon working with her during my surgery. His part will be to work on the abdominal (tubing) end of things. His goal is to readjust the tubing inside the abdominal so that it sits somewhere with less scare tissue and adhesion's. He also will be checking to see if the tube is blocked and if it needs to be replaced.
I have had so much pain in my sides that this could be a welcomed change. If he is not able to place the tubing back into the abdomen he may have to place it into the chest cavity although this is not the desired placement. They are hoping he will be able to do all this laproscopticlly but will have to play it by ear.

While he is doing this Dr. Dorai will begin her part of he surgery which is the brain and where the actual shunt is. She will shave the head again and expose the shunt. She will individually take out each component and test it to determine if it is working. Once she finds the piece/pieces that are not working she will replace them. This will include the catheter, valve and tubing. Once she has done all this she will test the flow and pressure to make sure that everything is working before closing it back up.

For now Dr. Dorai's feeling is that I need a new shunt. But as she has said she just does not know and cannot say for sure until she gets in there. After surgery I will be taken to recovery and then to my room on the Neurology floor. The plan is for me to stay to nights in the hospital and then go from there.

Wheww.....that's a lot of information.

I feel really good about this. I know I am in the best hands for this operation and I am just ready to get it over with.

Mom and Dad are headed up here today and I am so glad they are coming. Wes and I are still trying to decide what we are going to do today to keep our minds off of tomorrow. We can't deceide if we should go see the O's play or go check out the Beltimore Aquarium. LOL...it's not so much that we can't decide, it's just a differing of opnion...

I will try to update asap after surgery.

Thank you everyone for all your thoughts and prayers.

The Buffet Line of Life

The Buffet Line of Life….

Ummm yea….too many choices

Which one to choose… the fish, chicken, meat, liver…?

Life is like a buffet line..no really it is….let me tell you why.

When you go to a buffet there are a zillion choices of food items. They all look wonderful. Right?

From the salad bar to the dessert bar your tongue starts watering…come on you know it does. You know you just want to grab a huge spoon and start dipping into everything right there with wild abandon..opps that’s my gluttoness dream and not yours…

Well how the sam hill is life like a buffet? Well its all about options and choices and having to choose. It’s nice to say you want everything on the buffet (life) but in actuality we have to choose bits and pieces off the buffet (life) and pray to God that we make the right choices and don’t get heartburn in the process….


Sigh…sometimes…I think I look too deep into things. This may be one of them.

So this is going to be a long blog entry so grab your vodka, beer or coffee…whatever your drink of choice is and settle in and don’t say I did not warn you…OK? OK

So my Neurosurgeon visit….OMG what Drama….

Let me say that I do love my Neurosurgeon…he is wonderful and very honest. He comes in and basically says that he does not really know what to do with me. He has only treated 4 patients with my disease and I am the 4th. He also says that he is so sorry for all the pain I am in. (Yea, me too) He says that the only thing he can do is to place an lumbar peritonerial shunt (LP) . At the same time he cannot guarantee that this will do any good. He cannot say that this will rid me of the daily pain I am in. OK then…

Pause for dramatic effect…


So……What does he say…. He says that if I want he will do the surgery.

Yes, you read that right it was not a typo. He will do the surgery if I want.


Wooooo….Hold on here..You have got to be kidding me. My Neurosurgeon is telling me that if I want he will do surgery. Hmmmm. No pressure.

So, we leave and discussion begins.

Lets face it people, I am a Purchasing Manger. I deal with China and Germany not Medical lingo..what the hell do I know….

I will save you all the details and cut to the chase.

I have decided to have the surgery. After much debate and consideration the benefit outweighs the risks. Also, if I don’t have the surgery I will always wonder if that would have been the “fix” for me.

As of now surgery is scheduled for Wednesday at Wake Med. I will be having this shunt placed in my back and will spend at least one night in the hospital.



HOLD UP>>> WAIT A MINUTE>>>>>>


That’s way to easy….Right?……Right.

Life is a Buffet…and it’s all about choices….

Texas Toast or Muffin…you choose.

Life is never easy and why in the Sam hill did you think this would be a smooth operation? No pun intended.

What you don’t see is the back story (per say) that is going on in my life…..

I have a great friend, Michelle that I have never met in person. LOL. We met on a chat board for Intracranial Hypertension and then became friends on Face book.

She posted a link for an upcoming talk show on Intracranial Hypertension on www.blogtalkradio.com with Dr. Tanne. who is the founder of the Intracranial Hypertension foundation. I, in turn also posted the link. My wonderful mother listened to his show and decided what the hay, I will call him.

Guess what? She spent about an hour on the phone with him.

He recommended a Doctor in Baltimore that specializes in Intracranial Hypertension. Dr. Michael Williams. He is with Sinai Hospital in Baltimore. She called, talked to his nurse; she said send your record and we will see if he accepts you.

So, I, the ever pessimistic person hold no faith in this. After the Cleveland Clinic disaster and being turned down by the Mayo Clinic who could blame me.
But as I am preparing for surgery, I get word that Dr. Williams wants to talk to me via phone on Monday. Mind you that on this day at twelve o’clock I had my pre op phone call with Wake Med. I was all set to go with surgery.

Long…long story short and 45 minutes later talking with Dr. Williams he wants to accept me into his practice. But he will not come right out and say that I do not need to have the surgery that is planned. He does however; place a lot of doubt in my mind.

So after much thought, agony and tears…. I decided to cancel the surgery at Wake Med…. Was it the right choice…I don’t know.

What I do know is this.

On June 11th I will meet with Dr. Williams in Baltimore for a clinical assessment.
The following Tuesday I will head back to Baltimore for a Shunt Patency test. (This is where they inject die into the shunt reservoir and watch the flow to see if there is a blockage)
Following that, I will admit to Sinai Hospital for a two night stay and have an ICP monitor placed ( this is placed into the current shunt/brain) to measure the pressure for 48 hours.

After that…I just don’t know.

It has been a crazy ride so far and to tell you the truth, I want a break!! I am all for adventure but I don’t think this is what I had in mind.

But I will say this. Never give up trying to find information. You just never know where you will find it. I signed up on a great website/chat forum and found a wonderful group a people going through the same thing as me. I may have never met any of them in person but it feels as if they are always right there with a shoulder to lean on.

And never be afraid to call the experts in the medical field. What’s the worst that can happen? They don’t call you back? But there are those times were medical professionals like Dr. Tanne really care to help everyone they come in contact with. His last words with my Mother were for either of us to call back if we had any questions, and I believe he sincerely meant it.

Lastly, I wrote once about Great Expectations and how I got burnt on them…Sigh. I am really hoping and praying that Sinai and Life Bridge Health do not turn out to be another Cleveland Clinic. But the difference this time is he saw all my records before hand and had to except me as a patient.

So I just have to have a little faith and trust. Not necessarily Great Expectations, because I have now realized that for now those can never be met as there is no cure for Intracranial Hypertension. Maybe one day but for know I just need to learn how to deal with what has been handed to me.

I will try to up date a little better and after each appointment.

So may we all smile a little bigger, laugh a little longer and hug a little tighter….

Life is a journey that takes us many places. Life is an unexpected blessing.

Life can throw you a curve ball and it can happen in a second and it can change your life forever.

Life is short…Pray Hard.

My Appointment at Duke

My Appointment at Duke

One thing about me, if you already did not know, is that I am an eternal pessimist.
I see the glass half empty, the pack of crackers half gone before you even open them. In fact I have been known to say “Always expect the worst, that way you will never be disappointed just pleasantly surprised”

Now, is that the correct way to see things, probably not, but hey that’s who I am.

Going to the appointment today at Duke I was determined not to have any expectations, especially after the appointment I had at the Cleveland Clinic in Florida.

So let’s regroup real quick ..yes folks this makes the third, yes third Neurologist that I will have seen since the end of January.

The first, lets call him Dr. Idiot….hehehe. He felt that after the diagnosis of Intracranial Hypertension there was nothing more he could do and that migraines were no longer part of the equation. We parted ways with a mutual firing of the sorts.

The second, will call him Dr. Feel Good..yep that sums him up. This was the Doctor at the Cleveland Clinic in Florida. Now don’t get me wrong he was a wonderful Doctor and actually thought that I could still be having some migraine issues. So why Dr. Feel Good? He emphasized a lot about stress and dealing with that. Mind over matter was his idea. He is the one who recommend the Pain Clinic at Duke.

So that brings us to today….yes today. My no expectations day….well maybe just one.

I did tell Mom that if this Doctor even so much as asked “Why are you here” I was going to leave….but first roll my eyes and say “Duh, I’ve had a headache everyday since January 31st of this year…everyday”

No folks, I was not going to do that, I am not that way. But isn’t it fun sometimes to imagine ourselves being that bold.

We had virtually no wait once we arrived. Wow, that’s a good start.

Met with a nurse and she took the usual information. I always like the part when they ask what medicines you are allergic to. LOL, Because for me its not so much that I am allergic to any medicine, it’s that some just don’t sit well with me.

Take for instance Ambien

Now Mom calm down (I know you are reading) I’m not going to share my experience with the evil drug Ambien, not now, not ever…Well maybe one day if I ever have to much to drink and you ask me to tell it. Let’s just say I bet if you Google Ambien stories you will laugh until your sides hurt over the stories people share about this. Trust me.

After the usual nurse Q & A we head back into the room and I just know it will be forever before Dr. C makes his grand appearance. But no, not even five minutes pass and he is in the room…..Impressive.

And he gets right down to business… At first I am a little put off by this, but he is wonderful.

And now here are the highlights:

-The Lumbar Puncture that I had: the levels were high enough that they were almost to the
point of being in danger of vision loss.

-Patients with Intracranial Hypertension can also and most times have issues with
migraines and these need to be treated as two separate issues.

-My MRI and MVR show no signs of anything life threatening.
no further diagnostic testing will be done for now.

-I need to be on a preventative medication (taken everyday)
since I am already taking Topamx he also added Verapamil

- I need to have an abortive medication ( medicine taken at first sign of migraine)
he gave me a sample of two to try Relpax and Maxalt

-I need a rescue medication (medicine taken when the previous does not work, this
medicine is intended to knock you out) He prescribed Seroquel.


Most importantly to me he said that if these don’t work there are other options to try and that we will continue until we find the combination that works.

Whew…what a relief….. A neurologist that understands Intracranial Hypertension, and understands the pain that I am in everyday of my life. A Doctor that is not going to give up on me on the first try.

So why did it take three try’s at a Neurologist to find one that fits for me you ask?

Because Intracranial Hypertension is a rare disorder.
Because not every Doctor is right for every patient.

No, this Doctor did not have a magic answer, shot or medication to get rid of these daily headaches.

Yes, I am happy with today’s appointment and feel like someone is finally listening and understanding what I am going through and wants to help.
I don’t expect to have these headaches gone overnight, but wouldn’t that be nice.

I do have faith and hope that in time life will be back to normal or at least what I call normal.

I will follow up with Dr. C in four weeks and I have my fingers crossed that this combination of medication will provide some relief. But, if not at least this time I know he has more ideas up his sleeve, and I am okay with that.

“The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription” Norman Cousins














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Divine Intervention

Divine Intervention


What is that exactly?????


For me it means a miracle, that only God can explain.

What was my Divine intervention today you might ask.

Well my facebook friends know, so I will clue the rest of you in.

I called Cleveland Clinic in Weston Florida to inquire into their Neurology Department and two Doctors that I had heard about that specialized in Intracranial Hypertension. I wanted to see what little old me could do about making an appointment.

We are talking about Doctors that are Specialist here.
We are talking about a very rare disease
We are talking about a huge organization (think Mayo Clinic standards)

We are taking little old me, patient with no pull, trying to get an appointment thinking it would be months out and thinking I would just have to pass the information along to my Neurosurgeon and see if he could move the appointment date up.

Divine Intervention happened to me that very moment on the phone this morning.

As I was talking to the nurse telling her what I was calling about ect..she says "wait....we have a cancellation"....(insert pause) "When are you planning on traveling to Florida" My reply was " As soon as possible" she said---- How about March 18th at 2:00.......

Insert long, whistling pause.......mainly generated by me.. (let me also insert that in my time warp state of brain these days I thought the 18th of March was next week)

So after the pause....which was probably only one second....I said "I'll take it"

So she took all my information down and told me everything I needed to bring.

Let me just say I was stunned.......speechless........

Could this really be happening. I am going to see a Doctor that has over 20 years experience with this new enemy of mine. Yes, Yes, Yes, I am.

More Divine Intervention:

Wes is off the next few day ( he is a pilot so this is a rare thing timing wise)
I had no trouble calling to secure all medical records, and radiology films....I was expecting a fight.

Flights looked good.
I found a decent car rental rate.
A decent hotel rate.


Divine Intervention........only God has the answers sometimes....and maybe we should just not question the hows...