Can I Share My Angst With You?

[Sally Girl]

I am full of angst, and who would understand it better than the dear folks on this forum? To tell you the truth, my angst has been worsened by reading about traumatic procedures and hospital stays in recent posts here. Yikes!

My greatly suffering 25-year-old daughter with constant 8-10 head pain (while on a slew of pure opioids) is scheduled to have Chiari revision surgery on October 20. It may or may not be canceled (again) because things that keep popping up with her health.

She was decompressed for Chiari in 2005, diagnosed with pseudotumor in 2006, LP shunted for PTC in 2006, and other than a good first month with her shunt--has lived in hell ever since.

Her original neurosurgeon was not willing to do any more than one shunt tap in December 2006. It was fine, and he pretty much dismissed her from his care.

Mayo at least did more testing this year (not enough), and they said the risk of doing any more testing/surgery wasn't worth it. Our university hospital did ICP monitoring over four days this June, and Anna's average pressure was zero. It rarely went as high as three, even with an abdominal binder to try and raise her pressure. I saw lots and lots of negative one. They said that was normal pressure.

Our new neurologist referred her to a new neurosurgeon. Two other girls I know also saw this neurosurgeon. Both had Chiari revision surgeries with him in recent months, and they are both doing much better. We are waiting our turn.

What is different about Anna? She appears to be leaking spinal fluid every night (eyes, nose, ears). I contacted Dr. S, and he is willing to start testing Anna.

However, I have had my "eyes on the prize" (watching these two other girls). What Chiari revision surgery by this particular highly skilled neurosurgeon has done for them.

One of the mom's wrote an email to a poster on a Chiari forum this week. Telling the story of her daughter and others. If you would bear with me, I would like to share parts of that email...

"My daughter (26) had a Chiari correction/revision surgery by Dr. X this past June. After her initial 2005 decompression, she did well for several weeks but then got worse...progressively worse over the next three years...My daughter went from being a full time nursing student just prior to the original decompression to becoming completely disabled by 2008. Her head pain was severe and unrelenting. She had many other symptoms including nausea, elevated ICP, heat intolerance, sleep disorders, ear pain, vision disturbances--all sorts of stuff.

In May this year we were referred to Dr. X. He reviewed prior MRI's and operative notes and told me she had been over decompressed. Her brain was sagging further than prior to her original surgery and suggested she needed corrective surgery.

He ordered new MRI's. The quality was superior to all previous MRI's. He showed us in all the MRI's how badly her cerebellar ptosis was (sagging cerebullum). Since my daughter's life was sheer hell, she decided to go ahead with Dr. X's recommendation for the revision surgery which included implanting a titanium plate to support her brain.

When Dr. X got into her head, he discovered that in addition to her brain hanging down into her neck, her brainstem had become severely deformed, kinked, due to cerebellar ptosis from being over decompressed. He did a lot of work and went further into the arachnoid spaces to reduce her cerebellar tonsils, something that was not done during the first surgery. He removed a lot of adhesions between her brain stem, cerebellum tonsils, etc.

That was three months ago. My daughter is MUCH better than she has been in YEARS. She is in the process of weaning off all narcotics.

I personally know of two other women, one 52 and one 15 who have undergone revision surgeries with Dr. X who are doing very well. Both women and their families feel like Dr. X has given them their lives back."

Obviously a bright and shining ray of hope to us--to know these stories.

Her daughter, the 15-year-old, and Anna were all decompressed at the same facility. Dr. X sees problems on Anna's MRI's. He suspects she may have the slumping; he said the back of her head looks very crowded. Plus she has an LP shunt which he feels is a terrible shunt for a decompessed Chiarian. He said it is pulling spinal fluid down and pulling her brain down.

He is willing to go in there and correct what he can correct. It may take four surgeries, he said. Chiari revision surgeries and possible shunt replacement, in the end. We have told him twice that she appears to be leaking. He hasn't had much response to that so far. It makes me uncomfortable. I want my husband to call him next week and say it again. "We feel we must tell you again, she appears to be leaking spinal fluid."

It is at this point simpler for us to go seven hours to him to deal with what he believes is wrong and what he he is very qualified to correct (crowding in the back of her head and a questionable shunt) than to go halfway across the country to explore something we aren't totally sure she even has (a real honest-to-goodness spinal fluid leak(s).

She may have a leaking LP shunt. Mayo clinic surely suspected that. It is all over their surgical report. But they didn't have the WILL to explore it further. To do any more testing/surgery for it. They were a huge disappointment in many ways. We live two hours from Mayo.

So that's my angst, as best I can convey it. Any thoughts would be greatly appreciated.

I don't know how to get doctors to talk to each other. I know that is the logical thing to suggest in a case like this, but I just don't know how to get that to happen. I really don't. They all seem too busy and too much into doing their own thing. They can't even seem to talk to each other when they are working in the same facility together.

Thank you much.

Cheryl

[sadlisa]

Cheryl,

I feel so awful for you and your daughter. I agree the doctors need the time to communicate better. It would seem if your daughter is leaking it could be the base of her problems. It would seem less invasive to fix a leak than to do Chiari revision surgery. Will anyone do a ct myelogram to check for a leak? This must be a very difficult decision for you. Have you asked Dr. X if this is something he would check for before you proceed? I would think if he wants to ease your mind he would do this.

I am keeping you in my thoughts and prayers. Good luck with what you decide.

Thia

[dreb]

Wow Sally Girl, you sure have a lot going on. I am so sorry to hear about all that your daughter has been through. Before I was diagnosed with a csf leak, I was diagnosed with congenital chiari malformation and scheduled for decompression surgery. Until I had some further testing that is. By chance, the NS wanted to to a L-spine MRI, to make sure I didn't have a csf leak. They then ended up doing the entire spine MRI. The NS called to cancel the decompression surgery, because the neuroradiologists were certain I had a csf leak which was causing the cerebellar descent. My reason for telling you all of that is because I think it is worthwhile for you to look into the csf leak thing. I have read that many pts. have decompression surgery and have no relief in their symptoms because the chiari was acquired from a leak and not congenital. (I am not saying that is the case with your daughter, but I think you should look into the leak thing.) I agree with you, you need the doctors to get together and talk about her case, and come up with a plan to help you daughter.

I will keep you & your daugher in my thoughts and prayers, and I hope that you will be led down the right path which will give your daughter relief. Take care.

Deb

[Sally Girl]

In our one and only appointment with Dr. X I said, "I just want to tell you she seems to be leaking fluid out her eyes and nose." At that time it was not her ears that leaked, but now it is her ears also. No response from him when I said it. No questions about it. He just moved on.

Then my phone call to him after I turned up Anna's shunt all the way and she was really "leaking." So much she was chocking on it going down her throat. She looked like she was sobbing; she had tears running down her cheeks. I described this to him on the phone. He said, "It was tears from her eyes, and it was was running down her throat. That's all tears you are describing." Then he said, "I don't know what to make of it."

I said, "We told you we thought she was leaking when we saw you in our appointment with you."

He said, "Well, were you turning up her shunt when it happened before?"

I said, "No."

He said, "Well, then it has nothing to do with you turning up her shunt."

I said, "Her neurologist (whom he knows well) said it is from her dysautonomia."

He said, "All I can do is offer your the surgeries as I described."

And I said, "Thank you."

This was probably two months ago.

When Anna had a follow-up appointment with the local neurosurgeon who did the ICP monitoring, my husband and I (with frustration) described Anna's leaking symptoms and asked questions about leaking to his PA. She got a "deer in the headlights" look and said she had to go get the neurosurgeon. She existed the room very quickly.

A few minutes later he came in the room telling us how exhausted he was because he had so many trauma cases to deal with. He didn't want to talk about leak stuff at all. He just said he didn't know how to help Anna and that she should go to the best neurologist we could find.

So we have reported this to two neurosurgeons in recent months, and they are not responsive. They aren't even curious about it, it seems.

Her G.P. is far more interested than the specialists. He asks about it all the time. But he believes we need to go out of state to get the help she needs, and he is not referring her locally. Even though he graduated from Mayo in Rochester. He wasn't real pleased with the Mayo doctors we saw.

Thanks!

Cheryl

[Concerned Gal]

Cheryl,

Sorry you are dealing with this.

My situation is exactly as described by Dreb. Pretty much all set for Chiari surgery when they checked on the off chance I didn't have a leak. It took just one neuro thinking of me over her lunch to offer me that possibility and boy am I glad that I didn't rush into surgery. It was made even more difficult to fathom anything but a traditional chiari situation as a close family member was diagnosed and decompressed a couple of years prior.

Anyway, the story you tell of the other people re-decompressed is promising. But I didn't see any mention that they had an abundance of leaking csf fluid.

I know it is hard for your daughter being in so much pain, but I think you need to get checked out for the leak possibility with Dr S. The chiari surgery can wait in my opinion until you are clear on what is going on. don't let a Dr dismissing you be reason to put your concerns to bed. If the chiari isn't the only thing your daughter has going on, doing more brain surgery of this type won't improve things and could only make them worse.

Just check it out with Dr S and if nothing comes of it, enter into the surgery knowing that you've checked it out and hoping like all h#$l this is the answer to your daughters problems.

Take care.

[Tamaretta]

Cheryl, my heart goes out to you and your daughter..I always say it is it's own brand of hell to be a parent and watch your child suffer and be able to do nothing to relieve that suffering (no matter the cause). If Anna's surgery is put off, that would be a great time to actively seek Dr. S input. I agree with alot of the other leakers posting that a possible leak should not be brushed under the rug. She could have the revision surgery, everything looks and works perfectly and if she is still leaking, she would probably NOT be better. It's alot to put her thru if the end result is no better quality of life. One other thing that jumped out in the post from the other mom --her daughter had INCREASED ICP not low, like Anna. At the very least prior to surgery, ask (very insistently) that the fluid that is leaking from her orifices, be tested for Beta 2 transferin. It is non-invasive for Anna. The testing is very specific so be sure you have a lab that knows what it is doing - or provide them with the information on how to proceed. I think it has to be tested within 4 hours of retrieving the sample, using a sterile cup or swab. Again just make sure every step of the way that the lab knows how to handle it. It would be terrible if it came back negative due to mishandling.....i.e. harder than ever to convince NS that you think she is leaking.

I think I went way over saying my "2 cents" worth, so we will call it my "45 cents" worth! HA You and Anna are in my prayers. May God grant you supernatural wisdom, knowledge and peace.
Tamara

[vini]

hi I don,t know much about this sorry you are going through this perhaps the below is new ? something about a ligament

kind regards Vini



Figure 2.- Simplified sagittal section of the skull and the brain, normal on the left, on the right, with the cerebellum protruding downward through the foramen occipitalis as does when there is an Arnold Chiari malformation.

Does the section of the filum terminale make the brain move back to its original place?
If the human brain had the plasticity and memory of a spring or if it was made of rubber, the cerebellar tonsils and the cerebellum would move back to their original position. However, tha brain has formed under a strong traction power. When it is freed from this strain, its recovering depends on its degree of plasticity, which in time depends on the age of the patient, the genes, the time and intensity of the strain.

Then, what is the use of cutting the ligament?
The first thing achieved with the section of the filum terminale is the elimination of the main strain that makes the disease progress. Thus, the progression of the disease is stopped when the cause is supressed. The symptoms of the Chairi I disease are due to the stress suffered by the brain tissue as it is moved downward and it protrudes into the foramen occipitalis. When the filum terminale is cut, in spite of the fact that the magnetic resonance imaging does not show any apparent change in the position of the protruding part of the brain, the strain of the spinal cord has disappeared and the opression inside the foramen occipitalis has decreased. Congestion and the lack of blood in the affected area improve and, therefore, the symptoms these caused also improve.

What exactly is the surgical section of the filum terminale?
The surgical section of the filum terminale is carried out by making a small incision on the sacrum, at the end of the backbone, so there is no alteration of the spine mechanics, visualizing the filum terminale and cutting it by means of microsurgery techniques, all of which is done in hardly half an hour and the patient is in hospital less than a day.

What are the consecuences of cutting this ligament?
The filum terminale is the result of the empty cover of the spine cord at the lower back or lumbosacral region. The covering that separates the spinal cord from the spine at the sacrum and lower back, dura mater, arachnoid mater and pia mater, do not contain spine cord anymore and fold as a fibrous cord which forms the filum terminale; this portion of the spinal cord can be compared to a sock we are wearing and we pull taking it half way off our foot: the half that does not contain our foot could be cut with no risk to our foot. In much the same way, the filum terminale can be cut at any point with no harm.

Does the spinal cord suffer because of the tethering?
Research and tests with animals have proven that a mild tethering of the spinal cord makes neurons stop functioning due to insufficient blood flow. In humans, intense tethering decreases blood flow inside the spinal cord, because there are important arteries there for the spinal cord and because spinal cord arteries are centripetal, they go from the outside to the inside, especially at the cervical region, since there is the limit to the downward movement. The lack of blood flow causes the necrosis or death of part of the spinal cord tissue, and then it attracts interstitial fluid from within the spine and forms a cyst in the centre of the spinal cord called syringomyelic cavity, syrinx or Syringomyelia, a disease described 500 years ago, of unknown cause up to present.

Does tethering of the spinal cord have any effects on the brain?
The strain of the filum terminale, besides forcing the spine to bend, in order to prevent the strain of the spinal cord, it also pulls downward the lower part of the brain, the socalled cerebellar tonsils, into the foramen occipitalis which connects the skull to the spine, causing the Arnold Chiari malformation, a disease described 100 years ago and was of unknown cause up to present.

The surgical section of the filum for Arnold Chiari malformation makes the downward strain disappear for the cerebellar tonsils, it stops them from suffering because they do not opress themselves into the foramen occipitalis anymore. The operation improves many of the symptoms of the disease and the cerebellar tonsils do not move upwards because they are deformed and because of their little elasticity.
The tethering of the filum terminale, aside from causing a downward movement of the cerebellum and the death of the central part of the spinal cord, generates a flexion-producing stimulus on the spine that seeks preventing the strain of the spinal cord and causes a spinal deformity called scoliosis.
The section of the filum terminale supresses the flexion-producing stimulus and stops scoliosis.

Does this mean that syringomyelia can also be treated with the same surgical technique as scoliosis and Chiari I malformation?
In a similar way to scolisis and Chiari I malformation, in the case of syringomyelia the section of the filum terminale stops the disease. The cyst resulting from the necrosis remains the same, but it may disappear when the space surrounding the spinal cord opens spontaneously or does so towards its centre where there is the ependymal canal, which connects the centre of the spinal cord to the brain cavities. This does not mean that the disease is cured, it only means that the cyst has emptied; the disease persists since it is about spine cord strain. The symptoms of the disease are caused by the cell death and the tumor-like effect of the cyst. The section of the filum has three beneficial effects: it stops the death of cells caused by spine cord strain, it helps recover the non functioning but alive neurons, and it diminishes the tumor-like effect of the cyst because it relaxes the spinal cord.

Has this treatment been applied to patients?
40 patients of the three diseases, that is, scoliosis, Arnold Chiari malformation and syringomyelia, have been operated; some had all three conditions, and in some cases, the improvement has been dramatic.

Can you give an examplel?
A forty-eight year old woman had a very pronounced scoliosis; she had had back pains since the age of fourteen, whatever position she was in, even lying in bed, when getting up, when rolling constantly, she did not have a pause for thirty-four years. She was operated seven months ago and has not had the slightest vertebral pain since (case 14 of publication 4).
One case of syringomyelia: a young man of twenty-five, he had no sense for temperature on the left side of his body and had a big cyst in the centre of the spinal cord (case 2 of publications 3 and 4). Six hours after the operation, the specialist verified the total recovery of the patient’s sense of touch, the improvement lasting to present, eleven years later. This patient now works in a warehouse in Galicia, while other specialists, at the sight of his serious injuries predicted total disability in two years after diagnosing syringomyelia.

[LauraL840]

Cheryl,

I don't know what to tell you! This has to be the most agonizing decision to make for a child and I know you cling to anything and everything hopeful!

I read this the other day and didn't post because I didn't know what to say ... so I reread this today and only two things come to my mind.

1) You have a maternal instinct that's speaking to you, listen to it!

2) My personal opinion is that it's irresponsible of your neurosurgeon to move forward with another decompression surgery without addressing the fluid TO YOUR SATISFACTION, not his! How can he do that? A legitimate and correctly done beta II transferrin test of the fluid, or radionuclide cisternogram with pledgets placed to find out where the radioisotope is going. The first does not require an LP, the second does.

[Sally Girl]

Thank you from the bottom of my heart for your posts.

Anna saw her G.P. on Friday, and he told her she was not well enough for surgery (at this point). He is going to re-evaluate her on Wednesday. So things are still up on the air with that.

I was talking to one of my mom friends yesterday. Her daughter has similar issues, and she reads this forum and others. I told her in all the tons of reading I have done about Chiari, for all the stories I know, for all the Chiarians I following through CaringBridge Sites, for all the Chiarians I talk to (many)...I can't think of any place (other than here) where the possibility of Chiari being caused by a spinal fluid leak is ever discussed!

Anna has seen seven neurosurgeons in four states. No one has mentioned spinal fluid leaks. The two neurosurgeons who have heard about her leaking symptoms do not even seem curious about it. They just have changed the subject when we brought it up. Why is that? Do they not think it is possible?

Vini, oh yes there is great discussion over Chiari being caused by tethered cord, but it remains controversial. I am positive if I took Anna to The Chiari Institute, they would diagnose her with tethered cord and want to do surgery for it. But too many stories about the surgery failures (at great cost when you are talking about a TCI surgery).

There have been thoughtful discussions about TC surgery however, on www.conquerchiari.com (in the archives).

I'm going to have my husband call Dr. X and report more specifically what is happening to Anna.

But here is what happened on Friday. She went to the doctor, and then she came home around 4:00 P.M. and was laying on the couch on her side watching T.V.

At 7:00 her eyes started watering. She asked for some Kleenix. When she talked, she sounded like she had the worst cold ever. Complete "stuffy" nose sound when she talked, and then the sniffling started. Her words were full of gurggles. I could tell there was fluid in her throat. She started chocking. I asked her if the fluid tasted salty, and she said yes. She said it takes a while before her ears feel wet.

Last night she walked upstairs to go to bed at 10:00 P.M. and walked in my room. She said, "It is starting again." Eyes were running, nose was starting to get congested. She went to bed, and I looked in on her. She was wiping away the tears.

She said this can go on for hours at night. It wakes her up from sleep. Or it starts before she falls asleep. So she is wiping her eyes, blowing her nose, and putting Kleenix in her ears for hours sometimes. I have a home health job where I work overnights, so I am never home at night during the week. But this is what she tells me is happening every night. She said since this started months ago, her head pain is always the worst in the morning. It used to be the worst later in the day.

She has allergies, but she is on Zyrtec and Singuliar both. Her neurologist said these symptoms are from dysautonomia. Anna saw him last in July, when he said this. But at that point, she was not having the fluid in her ears. He is eight hours away in Chicago, and we have only seen him twice (mainly to get the referral to Dr. X, which I wanted greatly).

I spelled out everything to Dr. S in a three page letter I wrote when I sent him Anna's records and scans. He knows about the proposed surgeries. Cherry called a few weeks ago and said he wanted to start testing, but I said we needed to put it on hold for now. He was wanting new MRI's first and then for us to come out there.

To be honest, the stories about going to Cedars Sinai scare me. My friends' daughters who went to Dr. X had great surgeries and great care while in the hospital. One mom said the staff thinks the world of Dr. X, and he receives great admiration from the nurses and those he works with. They say they love working with him. He is one of their best and most respected surgeons.

Thanks again! This is so incredibly hard, and it just tears at me every day. I wish I had easier choices.

Cheryl

[sadlisa]

Cheryl,

Is it possible for her GP to test this fluid for Beta 2 transferrin? Maybe you could call on Monday and see if this is something you could do. If you can make sure the sample is frozen and handled correctly by the lab.

Please keep us posted. Good luck,

Thia

[LauraL840]

Cheryl,

A couple of questions/thoughts/comments ....

1) Is her HA and 'leaking' eyes/ears/nose worse when she's been horizontal for a while?

2) Does HA get better/improve when she's sitting up or standing?

3) Does the 'leaking' from eyes/ears/nose improve when she's sitting or standing? (Improve meaning lessen in amount or stop altogether)

4) I know that between Curranmom (Kim) and Wobbles (Meryl) there's "room" to be scared, but Anna is EXTREMELY different! And getting a second opinion is not 'going to Cedars' at this juncture, it's just a second opinion.

DO NOT let other people's experiences define the direction that Anna's care may need to go or be going! However, there is NOTHING wrong with giving consideration to other people's experiences! You've said, many times, how Dr. 'X' has helped people you know and how that's influenced your decisions so far ... but you have to be honest with yourself ... if Dr. 'X' hadn't been so helpful, you wouldn't be set on his plan for Anna. And so what if that were the case and his plan was/is exactly what she needs?

I can't and won't speak for Kim or Meryl, but only for our experience .... Dh's care wasn't "perfect" at Cedars - there were scheduling changes, long days, last minute revisions, broken equipment, nurses that shouldn't be allowed to change a babies diaper, not to mention take his temperature..... we overlooked what was 'excusable' when appropriate, and took matters into our hands when needed.

However, I remain speechless as to the quality of our neurosurgeon! I have never met someone as QUALIFIED, compassionate, caring, concerned and honestly driven to help as Dr. Schievink (let me NOT sell Penny short here, because I was equally impressed with her as well).

I suspect that some people who read/post here think I'm 'blind' regarding my opinion or that my opinion is 'higher' than it should be ... maybe they're right, but my opinion still remains unchanged, even in light of what Kim is going through. I can ONLY say that because I talk with her at a minimum, two times a day, so I know some of the decisions that are taking place for her care. I don't agree with them all, but I understand some (not all) of the reasons behind them ... and I'm not defending all of them either!

I've gone off on a LONG tangent ... I just want you to consider that Dr. Schievink may contain a 'piece of the puzzle' for Anna. He may not have ALL the answers or solutions, but he may be an integral part of her recovery and restoration! I don't know that he can solve all of the issues surrounding the complexity of Anna's medical issues, but I do know he knows leaks and if she has one, he will be able to offer you helpful information and possibly treatment regarding them! Heck, Dr. Schievink may not have ANYTHING of value to add to her outcome, but you won't be losing anything by finding out! I guess that's my 'bottom line' or point; his OPINION is free, you don't have to agree, following it, or pay for it and that's something that 99.9% of the doctors that I know don't offer, and it's something that continues to set him apart!

5) Anna probably does NOT have a SPINAL CSF leak. She probably does have a cranial leak. Just so you are aware that there is a difference because it's impossible for a spinal level leak to manifest itself from the eyes, ears and nose. For those areas to be leaking fluid, the fluid HAS to be escaping within her cranial vault. That doesn't mean she can't also have a spinal leak, but it's VITAL that imaging take place of her HEAD!!!!!

6) This is completely my opinion and since I'm not a doctor, just a medical nerd or sorts, it remains ONLY an opinion .... But it sounds to me like her shunt is not shunting enough VOLUME of fluid... she's overproducing the shunt. When she's weeping fluid from her eyes/ears/nose, can you increase the amount of fluid that's shunted to see if the weeping/leaking slows or ceases?

I'm sorry, it was more than 'a couple'! I hope this helps you, I am a believer in Godly intervention and can't help but to wonder if all the 'setbacks' for her surgical date are more than a coincidence. Perhaps it's to give you time to fully evaluate Anna's options before moving forward ... even if it's only to satisfy your concerns for this bizarre symptom (the leaking)!

I keep praying!

[Sally Girl]

You guys are wonderful to respond to my long posts. Thank you, thank you, thank you.

I don't get good answers from Anna. Part of the problem is that she has very bad brain fog, and she is heavily medicated. And I am at work five nights out of seven.

She said when the leaking starts at night, she just want to sleep and ignore it. She is on Ambien, Soma, and a bunch of other sedating meds. Plus her ever present Chiari brain fog.

She says the leaking usually begins after 10:00 P.M. Minutes after she goes to bed (usually). The tears begin to flow first. One eye or both eyes. The gagging starts, but she said that part is brief. She starts sucking stuff down her throat from her nose and blowing her nose. After a while, her ears feel wet. She said sitting up does not help that much. She is too tired to stand up. So she mostly just lays with her head on pillow and tries to "deal." Sometimes she feels sitting up helps her symptoms, but usually it doesn't. I wish there was a sleep clinic for leaking!

It has become so "normal" for her, and we just watch the days tick by, hoping to get her in the hospital with a neurosurgeon attending to her. Believe me, every time this happens in the hospital (if it does), I'm getting a nurse! Every single time.

I did find a patch of dried fluid on a yellow pillow case this weekend that was tinged with red. I have not seen that before. But she has two small pink patterned pillows that she props her head up with. It would be hard to see much on those pillows.

We live in a rural area with a small community hospital. I just called the ER to see if they could test for spinal fluid. They said no. Anna's GP does not know how to do it. I think I would have to take her to Minneapolis (40 minutes away). Or I could drive her two hours to Mayo and park in St. Mary's parking lot with her and wait for leaking (sort of kidding on that).

He said to bring her into the clinic if she starts leaking out her ears. But it doesn't happen during the day.

We are trying to stay sane in all of this, keep our jobs, and sleep. We have a real gem of a G.P., but this is so beyond his expertise. Like I said, he is probably not thinking we can get any help in our state for her.

Her neurologist in Chicago has said this is dysautonomia. He declared it pretty quickly. I have never looked it up. He said it is definitely not cluster headaches. I agreed with that 100%.

Dr. X said he wishes he could have started with Anna from the very beginning. He disagrees with what has been done to her surgically. He wants to go in there and "un-do" what he can to get back her to "original" condition. The way she was prior to being operated on (if possible). If he finds out she is slumping, he mentioned building up bone to help it. I know he does titanium plates to sort of hold up the brain. But he can't say for sure what he will do until he sees how things look, once he goes in. The MRI's only reveal so much.

I don't know how he will decide on how to proceed after her revision surgery. But this is what he proposes: first he will tie off her LP shunt. Then he will remove her LP shunt, look for leaks, and sew up her dura. Then he will do a VP shunt, if he feels she needs a shunt at that point. With wait times in-between each step.

We don't know if her shunt is functioning properly. We took her to Mayo Clinic earlier this year. They said her shunt valve was upside down in their x-ray. Dr. X said that was impossible. I have a copy of the x-ray now to show to him. It's going to be interesting to see who is right on that. LOL.

Mayo didn't like the type of shunt she has, they didn't like the placement of her shunt, and they said her shunt valve was upside down. But they didn't want to fix it or change any of it.

Mayo Clinic said Anna was misdiagnosed with PTC because she never had pappiledema. They said you can't have PTC if you never had pappiledema.

www.ihrfoundation states the opposite.

Mayo's myelogram did not reveal any fluid in her abdomen. Usually they see a pocket of fluid below her shunt tubing. So they didn't know if her shunt was even functional. But they didn't really care because her pressure was eight during their myelogram/LP (normal pressure, they said).

They said (1.) She was misdiagnosed with PTC and it didn't matter if her shunt was not functioning because she didn't need a shunt. Or... (2.) she has PTC and her shunt is trickling fluid to control it, which cannot be detected on the myelogram...or (3.) her shunt is actually leaking...or (4.) she has a low pressure syndrome. They said her brain MRI looked fine. I asked if they would do ICP monitoring to measure her pressure over time. The response to that was, "What good would that do?" Their final words? Go to detox, pain rehab clinic, and learn to live with this without meds. There isn't a doctor in the whole country who can help you. Honest!

Two LP's prior to being shunt in 2006 revealed pressures of 32 and 42. She was at zero pressure in July this year during ICP monitoring at our university hospital. Quite a drop.

I am really such a patient person (probably too patient)! Delays and stuff like that don't bother me. Truly and honestly. What scares me are the tests. Anna is so emotionally fragile and ill. She has had this horrid pain one third of her life, and it has taken quite a toll.

She needs sedation for those tests, as much as possible. LP's scare her to death, and the tests at Cedars are far worse than an LP.

Have never been to L.A. Another scary part for me personally. But we can suck up and do it, I think. Don't know how to get there, but I've been looking at Amtrak between Mpls and LA. Have to go to Portland to get there via Amtrak. We've done sleeper cars to Chicago and back. That works ok. We have great PPO insurance, and we can take her anywhere. So that is one very good thing.

Thanks a million!

Cheryl

[vini]

hi Cheryl

I don,t know what to say, I just had to lay down with a total information and emotional overload your GP is doing all he can on the pain, front and he,s a good man, but Anna needs attention as soon as she can, Dr X seems to know whats going to help Anna, let him decide if she is well enough for the surgery, I can only imagine how hard this must be for all your family and friends and that includes your GP it must be so hard to put Anna through any more tests and opps, I think when Dr X said it was imposable to put her shunt in wrong. It was probably out of disbelief:eek:, poor Anna needs to be admitted to hospital and her health built up with the minimal amount of stress and testing, by that, I mean through IV drug and nutrient therapy and if the shunt is not working properly it MUST BE CHANGED :( I feel the shunt is the first thing to address ,she may be leaking at the shunt site so testing all of her spine may not be necessary

my heart really go,s out to you and your family something must be done and soon

god bless

Vini :confused:





http://www.ndrf.org/

[Robbysmom5]

Dear Cheryl -
My heart goes out to you and Anna. I think you are doing all the right things between your research, forums, friends and doctors. I would also want to have the fluid tested to make sure it is not CSF. It could very well be from dysfunction of Anna's autonomic nervous system, but this non-invasive CSF testing should be done to make sure. There was a post a while back with details on collecting CSF for testing. I'll search and bump it up to see if it can help you.

[vini]

hi found this on an old bt post so it is possible for fluid to tract to the eye I cant get the link to work from one of the replies to the post perhaps you guys can

all the best Vini:confused:

http://italia.medscape.com/viewarticle/405620_1 cut and paste into top bar register and it will take you to article on Posttraumatic cranio-orbital cerebrospinal fluid (CSF) fistula is very rare. Diagnosis of these fistulas may be difficult, its free

I had craniotomy in 05 for 11mm anerysm. Clipping was successful, but ended up with complications, fluid retention. It fractured and collapsed my sinuses and I had csf leak out left nostril. By time hit hospital, was in critical condition and had 2nd emergency craniotomy 2 weeks from first. Ended up back in hospital 2 weeks later with blood clots both legs, and meningitis. Went home 2 weeks later with pic line and on coumadin....a risk they said was worth taking even with aneurysm because of severity of blockage. Anyway, August of this year, I started having "fluid" pour out my right eye! And I'm not talking from an eye infection. It was clear and ran constantly 24 hours a day. The more active I was , the worse the leak. My headaches became even more severe, and my energy level almost disappeared all toghether. I saw My family docotor who referred me back to the surgeon who did 2nd surgery. The facility would not let me schedule with him because he was not my "primary" surgeon.....well, I refused to see primary surgeon due to neglect and lack of knowledge of the 2nd surgery because his nurse "omitted" the second surgery from my records. Long story short, I waited an eternity and was scheduled in October with another neurosurgeon in Akron Ohio. I had a cysternogram/myelogram done. During the ct portion, the technichian said "He said dye is coming through her sinuses, he wants more pictures"......whoever the "he" was. Anyway, I ended up having additional films and I had a reaction to the test. I ended up in the emergency department the next day, the fluid continue leaking, and the headach was excrutiating! I ended up vomitting, and thought my head would explode! They just gave me pain meds and sent me home. Well, I was in bed most of the next 2 days and I kept my head at an angle thinking that would help. The next thing, I ended up with thrombophlebitis and clots again. Anyway, the fluid is still leaking out my eye, some mornings I wake up with "water balloons" under my eyes. It seems like my body absorbs the fluid after up for an hour or two. My headaches are daily, some worse than others. T
When I followed up with neurosurgeon in Akron, he said there was "something" showing up in sinuses, but he couldn't help me. He said if the leak from eye is cerebral fluid, can't really do anything until it breaks through and pours out my nose again. I just feel like I'm going crazy!!!! I know the fluid coming out my eye is NOT NORMAL! and I can't even bend over to tie my shoes without the pressure causing pain, dizziness, and nausea. It makes my headaches worse, etc. PLEASE if you have any ideas about this or have heard of it, PLEASE let me know!!!!!!!!!!!! I would appreciate any info!!! THANK YOU!!!!!!!!!!!!

[Sally Girl]

I wrote down what my husband should say to Dr. X tomorrow in a phone call to him. My husband is a cool cookie, and has a better brain than I (CPA/financial planner). He will get the job done. I hope!!!

Although he looked quite distressed today when I said I think we may need to take Anna to CA rather than WI. He wants the easier trip of the two, which is definitely WI. I'll let you know what happens.

Anna's home health nurse was here today. She comes once a week. She said every time she comes, it is overwhelming (the suffering). She said this is the worst thing she has ever seen and that it is worse than cancer.

Bless her heart, she is one of my best support systems. She keeps saying this is so beyond the expertise of any G.P. That is who I rely on the most, of course--Anna's G.P., but she said I cannot expect him to know what to do.

Thanks again so much (even for telling me the scary stuff).

P.S. I don't know if there is enough fluid to test. I think Anna has to be in the hospital for it to be collected correctly and tested. I just cannot see it being done where we live. I wish I felt like the neurologist and neurosurgeon we saw at Mayo want to help, but I don't.

Cheryl

[LauraL840]

Please keep us posted! I know you will!

[vini]

hi

I hope you and your family can now determine the best path for you, you have all the options now, you have done the right thing by looking at all the options and leaning all you can, Anna,s first surgery made her worse, but surgery may be your best hope, if no leak site is found, knowledge is power they say,

this is all so complex , you can be proud and confident in your choice , there is now a broad avenue of hope for Anna

best wishes vini :confused:

[fallingbear]

well stone the crows!!!!
after reading all of this, i just realized something!! 3 days after my fall [4.5metres, in the pyke position] 1996, apart from me feeling thick in the head for ages,,, i had a huge glob of what i thought was mucous,,/snot/ coming out of my nose,, but it was enclosed in a sac, that eventually subsided, over a couple days?
this was probably the pressure from the damaged chord from the fall??
and also i do occasionally get water suddenly run out of my nose, which i always thought was akin to hay fever like problemo??
considering the size of my snonk,,[nose] it is something i never considered,, maybe i am leaking csf fluid??
pity it isnt worth much on the open market,,could have collected it, and made a fortune,//oh well///
my heart goes out to everyone with the pressure, especially the younger ones
all the best
phillip

[Sally Girl]

Update--Anna's surgery has been canceled again. She did not pass her pre-op physical today. Her doctor said not to even reschedule. She is just too sick. He did some labs and prescribed some more meds.

I called the other hospital in our rural area and asked if they could test for CSF. They said the one test they could do is unreliable, and they would not recommend it for fear of getting a false positive.

So the next closest hospitals are all 40 minutes away. Anna said she does not want to go anywhere. I don't blame her with everything that is going on. With our luck, we'd go to a hospital ER and get treated like we are crazy. Feeling pretty stuck right now.

Cheryl

[LauraL840]

Sometimes it's important to REST in 'stuck'. It's no accident that her surgery continues to be postponed! So REST; it will give her time to regain her health (other health issues), build her physical strength and her emotional strength, it will give you time to research (should you need to continue doing so) and find out your options.

There's no RUSH! Even though everyone here feels the pull for BETTER to happen NOW and with no delay! That's my most recent 'learned revelation' ... not everything has to happen when we want it to, but trusting God to carry us through the wait IS important!

[dreb]

Sally Girl,

So sorry to hear that Anna's surgery was rescheduled again, but I do believe that everything happens for a reason. When the time is right, it will happen smoothly. You have been so strong for her. You have researched & gained knowledge, which will help you ask the right questions & make the right decisions. I hope that you get the answers & treatment that you need for her. Good luck & hope she feels better soon.

Deb

[sadlisa]

Cheryl,

I am so sorry you must wait again. It is very hard. Hopefully she will gain her strength quickly and be able to move forward.

Thia