Pressure feeling in head

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Pressure feeling in head

Postby mamaw112499 » Tue Jun 12, 2007 9:01 pm

Hi, my name is Barbara and I am a 46 yrs. old. I had my first decompression surgery May 13, 2001 and my last on Oct. 7, 2001. I also have a shunt. My question is, I have this constant pressure feeling in my head and some days are worse than others, my Neurosurgeon informed me that I would have to deal with this the rest of my life, but I have heard that there is a special test that can measure the pressure in your brain. Do you know what this test may be. My Family Doctor has no idea what I am talking about. I would appreciate your help and hopefully give me some hope that I do not have to live like this for the rest of my life. Today is a bad day and I am desperate for some help.
Thank you, Barbara from Louisville, Ky
mamaw112499
 

Postby prettyeyes » Tue Jun 12, 2007 9:13 pm

Hi Barbara, I don't have the answer to your question but wanted to let you know i am here and will pray that you get the answers you need someone here can help, anyway my prayers are with you, and praying you have some relief from the pressure lisa
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thank you for your reply

Postby mamaw112499 » Tue Jun 12, 2007 9:18 pm

Thank you, very much, I need all the prayers I can get. It is very hard because I have no one to talk to and understands what I am going through, again thank you.
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Postby kathymichelle » Tue Jun 12, 2007 9:43 pm

I don't know the name of the test either, but I know of the pressure headaches that you speak of.
I would elevate the head of your bed a bit, some put just a shoe under the mattress between the box springs and the mattress and they have had some success with that.

I don't know what else to tell you, the low pressure systems get me horribly. I know the day before they arrive and once they get here, I seem to adjust a bit better. Chiarians seems to have the barometric pressure system figured out.

I would be interested in tips as well.

Welcome and hang in there!
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thank you

Postby mamaw112499 » Tue Jun 12, 2007 10:24 pm

KathyMichelle, thank you for your advice, I will try that tonight, like i said I am desperate! I think that this is the first web site that I have ever gotten any response to, thank each and every one of your for your help and advice.
mamaw112499
 

Postby cash71 » Tue Jun 12, 2007 10:59 pm

Barb, so sorry to hear about your pressure h/a's. I get those too but I have never been decompressed. I am on Diamox which has helped control the H/A's. Don't know if this is something they would consider with you and also it is only a band-aid while I figure out what is going on with me. It is by no means a solution.

The only test I can think of that measures pressure is and LP where they take an opening pressure. A CINE MRI will show CSF flow and any areas where it is blocked or reduced. Sorry I can't think of anything else.


To me if you are having symptoms like this that are impacting your life I would get a second opinion from an expert. I know 50% of the surgeries done at TCI are re-do's of previous failed surgeries. This doesn't sound right to me that you should have to live like this. If at all possible get to an expert for another opinion.

Take care,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby birdlover3 » Wed Jun 13, 2007 6:45 am

I too have these type of headaches. I also have my bed elevated & I use ice or heat on my neck & head. I’ll be praying for you. I can’t make it without prayer.
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Postby mamaw112499 » Wed Jun 13, 2007 7:54 am

Caroline,
Thank you for your reply.

Yes, they have tried me on Diamox, but it mad my legs swell and retain water and then I got to where I was getting confused while taking it.

I was sort of a guinea pig when I had my surgeries. I had a lot of complications. Had a surgery every month for 5 months. I loved my surgeon at first, but then it got to where he was getting frustrated because he did not know what to do next, and he even told me that after me, he was not doing ACM anymore.

My daughter just found out that she has it and she goes to a different surgeon, I love him, and I tried to get an appointment, but they will not see me, said that I should continue with the surgeon that started it.

Again, thank you
mamaw112499
 

Postby paularay » Thu Jun 14, 2007 7:58 pm

I also have a shunt and I still have pressure sometimes but nothing like I had before the shunt. I have had to have my shunt adjusted before. You may need to have yours adjusted or replaced. Do you have some double vision and some nausea? That is usually my sign that I need to have my shunt checked. I have a programable shunt thats easy to adjust the flow.
Check with your NS to see if maybe yours is cloged or not functioning right. Hope this helps.
Paula
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Postby mamaw112499 » Thu Jun 14, 2007 9:55 pm

Dear PaulaRay,
I use to have a programmable shunt, but I no longer do. I know that the last time that I went to my NS, he told me that it probably was not working and that he did not want to do anything about it.
My Family Doctor called me today and I go in the morning for a special MRI to measure the pressure in my brain. I hope that is does tell me something and that it can be fixed.
Thank you for your input, it is greatly appreciated!
mamaw112499
 

Postby mac » Fri Jun 15, 2007 5:59 am

mamaw, welcome to the board. I am simply astounded at the way you've been treated! My mouth dropped open reading some of the stuff you've been told :!: How you must have felt when your surgeon tells you that after you, he will not do ACM anymore??? Goodness me, you need to get thee (as Keesha would say) to another NS immediately, do not pass Go, do not collect $200!! (hope you used to play Monopoly!)

I would not darken the door of that surgeon again. There HAS to be someone out there who can take over your care. If your PCP won't get educated on it, he should be out the window too. This is simply ridiculous. You have a major condition, have had major brain surgeries, have a shunt that is probably not working right, and you are being treated this way? I'm astonished!

You have made a good first step. You found this place, so you were obviously researching online. Good!! Self advocacy is the most important thing we can do for ourselves. We gotta step up to the plate, take the reins, and all those other cliches specialmomx2 would probably think of if she were writing this, and take control of this boat! Sorry, your posts just worked me up, I could not believe you were being treated this way.

You should not be suffering this badly, you need the shunt evaluated as you've been told, you need regular monitoring and you need to get to one of the full time specialists. You may need to travel, but that's okay. You will be glad you did.

Can you share where you live, perhaps we can help with some names of doctors. I'm glad you are here, there are lots and lots of folks here who can help you. I also thought of the LP as the test for pressure.

Sigh, boy oh boy, I'm glad you are here...

mac
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Postby mac » Fri Jun 15, 2007 10:10 am

mawmaw, I asked our friend Betsy (who is having problems joining this message board) to help you with this, because I know her well enough to know how she deals with her shunt problems. Here is her reply, I think it's great!
*****************************************
Signs of high pressure are increase of headache when laying flat or bending over, pain behind the eyes, pressure in the ears..etc. Some of us have found that rubbing the tubing just behind the ear seems to relieve some pressure, and gets the shunt to work a bit better. When I saw Dr Kula last fall, he confirmed that several other patients have said the same thing. When I start to rub the tubing, it usually is quite tender, I rub gently until the tenderness goes away. When my intracranial pressure is high, I avoid salty foods, processed foods like lunchmeats, cheese, soft drinks.

It is also helpful to sleep with the head of the bed elevated. You can use either a foam wedge purchased from a medical supply store, or raise the head of the entire bed with cement blocks. The ideal height is at least 10 inches. Drinking brewed tea helps as a diuretic. Yes, unfortunately, the only way to tell intracranial pressure is to do a lumbar puncture. Rarely, the shunt itself will be tapped, but doctors generally do not like to do that because of the risk of infecting the shunt.

It is also important to watch for any visual changes. If you have had symptoms of high pressure for awhile, it might be worth while to make an appointment with an opthamologist. Symptoms of high pressure can be seen in the back of your eye. If your opthamologist sees this, this info can be sent to your neurosurgeon, and might get their attention better.

Another problem with VP shunts is ventrical collapse if the shunt is set too low! My second shunt was placed, and the shunt to be set was 100. (This was a Codman Hakim shunt). I started having headaches, that I thought were high pressure, my brain felt like it was being squeezed. Well it was, in effect. My ventricals had collapsed because too much pressure was being released. I knew that 100 was going to be too low, because the previous shunt had felt just fine at 140. But this neurosurgeon (not the one that placed the first one) always placed his shunts at 100). The nurse interpreted my symptoms as highpressure, and insisted at lowering the shunt to 90! I was back in two days to have it raised to 110. And the following week to 120. That still wasn't high enough, by the end of the summer I was back to 140 before I felt right. The long term effects of the over draining gave me weakness, transient double vision, headaches, buzzing in my ears, all the exact same symptoms that I had when I had high pressure.
Dr Bolognese gave me an explanation one time, with a nifty doodle of why the symptoms of high intracranial pressure and low intracranial pressure WITH A SHUNT are so similar, but I'll be darned if I can remember the fluid dynamics enough to write it down here.

I hope this helps. I know how frustrating is to have this, and not be listened to, having gone through several shunt problems in my history. Hopefully, all you will need is an adjustment in your shunt.
If you have any other questions, please feel free to write me at
Elizabeth at damselflystudio dot com
*********************************************
KM and others, I bet this stuff will help you too. THANKS BEtsy!!!!

mac
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Postby cash71 » Fri Jun 15, 2007 10:33 am

Great advice from Mac. I agree this is unacceptable. You have to start raising a fuss or if your not up to it have a loved one start raising a fuss for you. No one should have to live with those symptoms.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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MAC

Postby mamaw112499 » Fri Jun 15, 2007 5:11 pm

Dear Mac,
Thank you for your reply. You would not believe what I have been through.
I was to have an MRI this AM, but when I laid down, I started to get real dizzy, nauseated, and almost passed out, so they could not do it.
I came home and called my PCP to tell her and then I tried calling my Neurosurgeon and he has released me and will not see me, because I owe $72, which I do not want to see him anyways, so I asked my PCP to refer me to someone else.
I received a reply from Caroline and she told me about TCI. I was just so amazed and just in aaaahhhh over it. It has given me some kind of a hope. Now, if I had the money, I'd be on the next plane there, no if's, and's or but's. I am in so much pain and just tired of feeling this way every day, and it is only getting worse.
I live in Louisville, KY and I use to think that this was a great place to be for medical attention, but I am learning otherwise. I have been told that I am just crazy, stressed out, and put on all kinds of pysch meds, (which I did not take), because I know that I am not crazy. It is hard to find a NS to take you seriously.
I am Disabled and cannot work and live on a very limited income and my husband is off of work right now and things are very tight.
I have 10 grandchildren that I love and cannot spend the time with them like I want to because I am in so much pain all the time. My daughter just found out that she also has ACM, but she has not had her surgery and she is not experiencing much symptoms yet.
Thank you for you support and you response. Everyone on here has been so great and so helpful that my prayers have finally been answered by all of you.
Thank you....Barbara
mamaw112499
 

Postby paularay » Fri Jun 15, 2007 9:43 pm

Barbara, I hate that you are haveing so much trouble. I honestly think that your shunt is not working correctly if at all. I am from Murray, KY. My NS is in Paducah, my NS and his staff has always kept me well informed and if I had any symptoms such as your having to call and they would meet me at the hospital which is about an hour from me. He told me that shunts can go out or needs pumping or adjusting (depending on which type you have) at any time. My NS went and trained at University of KY and when he was faced with my case and I had my decompression and rods he sent a copy of all of my records to UK for them to study. They have some really good doctors there and I was lucky to have had my NS considering no one had ever seen SM around here. You may try checking for a NS at UK since your in Lousville. And if you need some more help I could talk to my NS and see if he might could recommend someone, he use to be on the board at UK and I know he knows alot of doctors in your area.
Paula
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