I'm so confused, is the patch the problem?

General
1

hi everyone.

i haven't been on here for a while but really need some advice/thoughts.

i've today recieved a letter from my neurosurgeon about my mri results but i don't understand and im very upset that it has taken so long to write to me.

ill explain.. i had my op in october 2011. was in hospital for 10 days. i had a drain in place but when removed they had a problem with it leaking and i had to be re stitched 3 times. whe i left hospital i was quite unwell for a good few months i had flickring eyes, fatigue, very inflamed lymph nodes that stayed up for 3 months and are still mildly apparent. also a weird symptom when every time i ate, yawned or moved my head from side to side i would get a shooting electric shock down my right side.

my neurosurgeon was quite concerned about all these 'odd' symptoms as he called them and i had many mri scans and blood tests to check for possible infections etc.

i last saw him on 23rd of december. with symptoms growing ever stranger he ordered me a csf flow mri scan and put me on steroids over xmas. i live an hr from the hospital and so he said he would book the scan and a re ex on the same day in january. (i was seeing him every months because of my symptoms). january came and went and hear nothing. i called many times to get fobbed off with hes away and the appt is in the system.

i went for my contrast mri scan 'as pre the letter' at the beginning of feb. i got there to be told i wouldnt be seeing my surgeon that day. he was to busy and had just got back from holiday. that confused me slightly but i went to the scan. i was then told by the scan people that they werent using a die/contrast. i then began to panic. id had 4 normal mris already so why another especially when the surgeon and the letter said contrast? after making an issue the radiologist checked with the scan reader people who told him they didnt need contrast so i went for another plain mri scan.

i was obviously conserned that it was a waste of time and called the securetery of my surgeon a few days later to ask if they had recieved the letter i quickly wrote on the day explaining my current symptoms to go with the new pics. (trying to be useful).

anyway i have waited 6/7weeks to here anything about my results. i have called most weeks to see if anything was back ' to be told yes but he hasn't looked at them.

i started going to work for a few hrs 2 days a week as i was going stur crazy indoors but i get quite tired and confused about stuff and am fining it a bit difficult. my doc was reluctant but agreed a phased return would be the most minimul but stop me getting depressed at home.

my letter today was a shock. it says on one line 'we are happy there is no immediate features of concern' (good) next though it says 'it is difficult to conclude the features on you scan are causing your current symptoms or that further surgery is likely to be of benifit' (ok). next 'if your symptoms aren't improving, the only option i can suggest, although i would have no clear indication that this would lead to improvement, would be to remove the patch allowing fluid to circulate more freely' (hmmmm) next 'removing the patch, whilst exposing you to more surgery, may allow fluid to move more normally, however i have to be absolutely honest though in saying i'm far from convinced this will work but im willing to discuss this with you if you wish. i would be grateful if you could let my secutery know if you'd be willing to come back to the clinic to disuss this'

ARE YOU HAVING A LAUGH!! do i have a problem or not? i'm confused. do i have to decide if i want more brain surgery that may or maynot do anything? do i want to discuss it with him urrrr YES of cause i do!!!!.

sorry im really upset that would write a letter like that to someone. especially after 3 months of not seeing him. surely im due a check up anyway?!.

i called the hospital to say want an apointment and was given the 9th of may. 5months since i spoke to him and he organised all this. i dont think thats right do you?

another issue. i have endometriosis. i think its returned as my periods are up the wall again. going for tests etc on monday. problem is my doc is concerned that she doesnt what to put me back on the pill or coil as doesnt want to introduce hormones to my system.

lets just hope i dont end up needed 2 ops another laperoscopy and brain surgery. i feel like im going backwards and cant cope with all this stuff. :-(

long post but any advice or words of encouragemet greatly recieved thanks xxxxxx

2

Cant rally give any advice but just wanted to send a Hug!

I know what it feels like to try and try to get answers to the odd and varied symptoms and i too have heard the same crap 'it is difficult to conclude the features on you scan are causing your current symptoms or that further surgery is likely to be of benifit' (ok). next 'if your symptoms ' That makes you feel like they are qustioning the reality of your experience.

The symptoms have to be coming from somewhere. just seems at times its too much trouble for the Doctors to give you or search for an answer as to why you are experiencing these troublesome symptoms. Drives me mental too!

I have been told that i just have to live with the wide n varied symptoms i get and that surgery might not fix them, I had an ICP done and the intra cranial pressure was not consistently high, but came in peaks and surprisingly low dips too(when having a dizzy spell). So the surgeon did not advise surgery. I agree it makes sense not to have brain surgery!!! But still sould destroying to have to suffer every day.

Just want to say keep at them, it seems if you mention anything that is not the specific headache, then it isnt a chiari symptom, but the cerebellum and spinal cord and CSF flow if not functioning or are being squished must surely account for neurological weirdities !!!!!

Have a HUG!!!!! xx

3

I dont really have any specific advice either as I am going thru some of the same craziness. I had a MRI if both brain n C Spine earlier this week. Have the disc so i popped it I.to the computer st the hospital U work at to attempt to read it myself as i was told my doc would have the results Tthe next day and haven’t heard anything. Still haven’t heard and all I could tell from looking us there does appear to be impingement on my spinal cord from bulging.g discs. And there were some irregular looking areas in the brain MRI. But I’m no expert. Just confused and aggravated at the apparent lack of knowledge and concern.

I would say to stay after the doctor but I’m not so sure any doctor has answers or is concerned enough to try n find them. Good luck with ure journey and i wish u all the best. (((hugs)))

4

Hi thanks for the reply. Went back to the surgeon today. He’s advice is to take the patch out and c. It may work and releave the pressure from the fluid behind the patch but it may make no difference. It’s the only thing left to try. If it doesn’t work or change symptoms that’s it he’s done all he can. What will be will be. So I’ve decided if there’s a small chance then go for it. Prob have new op in next few month’s.

5

Hi thanks Susan. My surgeon said he wouldnt replace the patch as if he couldn’t get it to seal 1st time these no point in putting in a new one in. He will just remove it and see if that makes any difference. Aparently some surgeons do the surgery without a patch anyway so we will see.

6

hi cheryl

i had to read what your surgeon wrote you x3 to me anyway ; the letter was filled with vague info and contraditctions/

the letter should have 1st started out with an apology for having you wait so darn long this is not right

forgive this post as far as punctuation goes key board on the fritz

glad you have an appt fairly soon please let us know how it goes

peace

lori

7

I can defiantly understand your frustration. I have seen so many doctors over the years. I was told I have chiari on a voice mail message from a neurologist I had only met once. He said "you have chiari malformation, you can see someone about it if you want to, I will never forget that! I had my surgery in Nov 08 and am still struggling and trying to find a doctor that can help me. I too also suffered with endometriosis and had to have a complete hysterectomy at the age of 26. I am so sorry, I feel your pain!

Wishing you all the best!

Crystal

8

Cheryl,

I am so sorry you aren't getting information from your NS in a reasonable time. By any chance did the NS tell you what kind of patch you have? Lately I have read several Members having problems with their patches. Mine is a Cadavere's Pericardium. They also use Bovine patches and artificial lab grown patches. I was just wondering if there is a pattern of a certain type of patch that is defective. This is one reason this discussion group is so very important. We have 1000 or so members & if there is a problem we hear about it sometimes before the specialists. I really hope you feel better and get to what is going on. Please let us know how you are doing.

Tracy Z.