[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170546

The scan that the surgeon said he could see it was on a ct scan prior to surgery I had 4 scans prior to surgery that he could view so not sure which one it was.
While I am not a radiologist I love looking at films / scans on the computer it fascinates me. I have gone back and I think in one of the scan I can see a small hair line crack in the bone. But i am not sure. The issue is that the scans are slices, and each scan may or may not catch the issue.

My case is different however there are people that have the same issue, possiably from intercranial pressure. The brain just rubs a on the bone and after time the Bone where’s out but the dura which is the bag that holds the brain is you protective cover. It is a very thick material that is water tight adhered to the inside of the skull. On me the surgery ristupted the bone and dura that was protecting my brain. Hence the CSF leak. NOT EVERYONE HAS THIS.

There are many people that have no complications from this surgery. I would not worry about it and do it again if deemed needed. I would just make sure that I have my team of surgeons there to verify that I do not have another issue during the surgery. having a compentent team is what matters.

[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170543

So another update. After speaking to one of my 2 surgeons I guess I had a birth defect hole into the ethmoid roof befor my orbital decompression. The issue is that my surgeon did not see this on the pre op scans and when he did the decompression it disrupted the natural barrier that I had their so there was never any leak prior to orbital decompression.

A few people has asked if I would consider legal action towards my original surgeon for the Od or on the others for my eye going blind from the craniotomy or for the radiologist that miss read the MRI scan after OD surgerythe answer to that is NO.

Personally if feel that surgeons are human and they are doing what they love and they are dedicating their lives to saving others lives. As long as there is no malice and they are not blatantly miss guiding patients into surgery, when there is no call for surgery then they can be human just like you and me.

We all strive to be the very best in our profession, to always do what is right. Sometimes there are things that happen that we are not at our best or a situation that you had not thought of appears and blows all of you plans out the window. I give this same thought to surgeons. They are more apt to error on the side of caution then not.

I think that our society has changed in to the “what’s in it for me” mentality. It truly is sad these doctors only have the thought of helping people. But with the change in our society’s Mentality of sue for malpractice, it devastates the Doctor with their medical review, suspension of practice or probation. It increases their insurance needs, raising their cost to preform their job,and there for Increases our medical cost and health insurance cost. So in the long run we all pay for the few that are sue happy on just about anything.

If there is malice that has caused death or dismemberment, YES sue. For anything else we are just screwing ourselfs into higher medical cost.

Just my opinion regarding seeking legal actions aginst a doctor. As long as the problem gets fixed and it gets paid for there is nothing else that needs to happen.

Thank you to all who have keep me In their thoughts and prayers. I honestly believe that the power of prayer is a great assistance to the doctors doing their job and keeping me on an even keel. Thank you.

[Jules]

in reply to: My Ears … #1172955

What I ment to say Yeasterday day is I use to get them when I was hyper and I still get them when I am hypo. Mine are def related to my well being on the thyroid hormones. I get less of them being hypo then hyper.

[Jules]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172144

Actually there are the natural Meds I take Armour made from Pig thyroid. Works great for me. It took me going to a primary doc and get away from my endo that I have gone to for over 20 years for my hubs situation. He finally tried rx Armour and I felt better almost instantly. Hives were gone nausea etc. gone. I tried all of the different combs of synthroid name brand and generic dye free etc…

As soon as I get the frees up just a bit more I will be extreamly happy.

[Jules]

in reply to: My Ears … #1172953

I dindwhenim hypo that I get ear aches I also had real bad one when hyper. Just as you explain.

[Jules]

in reply to: Rituximab #1172926

Yes please up dates. I wanted to try that but had the OD surgery to save my sight in the right eye. Now,y left eye is acting up and I will NOT to another OD because of my very un usual situation with my last surgery.

Having only one functioning eye I want to protect that at all cost

[Jules]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172141

I had20 MCI RAI in November 2010 was checked at 4 weeks and was euthroid ad in 4 more weeks 11/29 I was extreamly hypo 79 tsh.

My symptoms see,Ed hyper with hypo feelings mixes together. Shakey tired headache muscle aches racing pulse etc…

Still trying to get back to my normal. TSH only testing is not the golden rule when you do not have a thyroid IMO

I request t4 ft4 and ft3 when the doc does blood. My tsh is suppressed but my ft4 is at low range normal as well as my ft3. It is hard to get the doc to chech the tests I want run. My endo was a joke. I’m allergic to synthroid and he was telling me tough $#|+. Now I go to my primary and beg for the correct testing. I an going on my symptoms and I am still hypo. Once my frees get to mid to high normal I expect to see lower cholesterol normal heart rate, no anxity no joint pain and lose some wight. I cn not eat for 7 days and still gain weight when I never had a weight problem before.

Waiting on finding the most perfect doc thT will help me to get back to normal. I have been through 4 endos and 3 primaries. Sooner rather than later I plan on getting on the right path.

[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170541

Thank you Kimberly for fixing the link. I misplace words and letters now oops. Thank you everyone for your thoughts, yes I a, in the middle of moving. We lost our business in march and now we are losing the house. It’s ok though I have a great family that is supporting us.

[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170535

Sorry it has taken me so long to update my complications. I have been through the ringer for the past few months, finding a surgeon and dealing with insurance approvals.

I ended up having a bi-frontal craniotomy May 31st. If you want all of the details about my situation you can read my blog

Mycsfleak.wordpress.com

Hope everyone is well.

[Jules]

in reply to: In need of support #1171718

Do not be scared of the RAI, I was in a similar situation RAI was my only option. Yes it sucks but for some of us who can not take the anti thyroid Meds.

You take a pill and then watch your blood results. Make sure you get the doc to check your blood frequently and not just theTSH test. I went Hypo with in 2 weeks and extream hypo in 2 months. Doc was lame on managing my blood. Some people take a few weeks to go hypo some months.

That is my suggestion:
Ask Doc what is his standard procedures for RAI.
When is the first blood test
What labs will be run to test your thyroid levels
If they do no test the free t4 ask that they are done get it in writing that they will test t4 make sure they test frequently.
Ask them for side effects to watch for. I had leg cramps at night when I was going hypo. I had to demand blood draw to confirm.we know our bodies best standard testing might be too long apart for some people.
What Meds will you need to take.
Will you have a beta blocker that you can dose based on symptoms?
What replacement hormone will you be on, what is the replacement dose
What supplements should you take to help you body heal
What is the dose of you RAI 131 mine was 20mci
will they put you on steroids to protect your eye? What dose for how long

Write down all of your questions and get the answers that make you fell comfortable.

These are the questions I would have loved to ask if I knew then what I know now. Hind sight is 20/20

[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170530

Oh so I had the eye surgery, after waking up I had a headache and the lose of smell, I was told no worries that happens and can be expected. After being checked out of the hospital the day after surgery I went home for my revocery. I thought I had a sinus infection so they put me on antibiotics.After the blood clot cleard at around 2-3 weeks after surgery I had a foul smell I thought ok sinus infection is not gone and the watery drip I noticed must be from the infection. The drip only happened when I bent over (this is a key sign, but I did not know what the signs are for a csf leak) No biggie I’ve had infections in the sinus need a different type of antibiotic to clear it up.

After 3 weeks and stared the second antibiotics I went to my ENT. he said oh yea well let’s see what happens with the antibiotics. That next week I was calling my Neuro opth that did the surgery leaving messages for him that something is not right the headache seems to be getting worse. His nurse said she left him his messages but he never called. By Friday night I had a thunderclap headache worst one yet and felt nauseous and the drip was worse not all the time but there.

I called the doc on Saturday (I had his cell number for emergancies) I called his cell phone stating sorry to bug him but I left messages everyday for the past 4-5 days and had not heard from him and I was concerned with the headache. He sad e never got the messages ehich i do believe him on this from past experances with his front office. He sent a request for a ct scan we found a place on that Saturday that could take me in.

The radiologist thought she saw a breach from the sinus into the brain vault at the cribiform plate. There was also a frontal sinus infection. This took until Thursday to get this back because the radiologist was verifying with others as to what se thought she saw. Ok MRI with contrast that next Saturday. Again it took until thursaday to get the report and it stated the surgery but nothing with the breach InTo the brain vault.

I called my ENT and he looked at the ct after the first report then I called him after the MRI and he said oh no you have a breach that was not reported in the radiologist report. He contacted my neuro opth and he contacted a neurosurgeon. Great guy said ok so has anyone showed you what we are discussing? I said I looked at the CD copy I had, I said I thought I saw a breach with stuff hanging in my sinus. I point to what I saw and he said very good. Now let’s figure out what we are going to do about it.

I am fighting with insurance right now trying to go to one of the top docs in the endo nasal surgery. There is issues getting the referral and the top doc does not take cash I’m desperate I want to know what we are going to do the headaches a pre getting worse and the vision is really strange double Visio that comes and goes with the headache. I have time there is no double vision and then times where I can not focus at all. I was told be the neuro opth after the surgery the double vision is a complication of surgery but now I think it is from the csf leak.

So as of last Friday the top doc won’t see me my neurosurgeon was on vacation, the neuro opth and my ENT both informed me this might not be fixable with the nasal approach and I might have to have open head surgery (crainiotomy).

I’m scared to death and I will be searching the USA for a doc that can do this repair endoscopically.

I’m not trying to scare anybody from getting an orbital decompression but I think you should know that there is a possibility of a csf leak. It happens when the middle turbinate bone is pushed during surgery and it cracks the cribiform plate.

I have done tones of research on line and could not find any info on this from orbital decompression, just that there is a slight risk.

I’ll update once I know what happens next.

[Jules]

in reply to: Just dropping in after TED orbital Decompression #1170528

Ok so to update

I thought my eye surgery was a success…

But I do have a complication CSF RHINORRHEA (crack in the cribiform plate causing csf leak) ugh will post more info tonight about Anya happens next and how I discovered it.

[Jules]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171076

Yes I had eye issues before RAI. I knew i did but My endo did his own measurement and poopooped my concerns. He thought that protrusion (eye balls sticking out) were the only issue he had to look at) ugh I hate endos.

Just because you have Graves does not mean you are going to have eye issues. However if you think you might just have it checked first. There are a lot of people who have had RAI with no eye issues. I am just not one of them

Anyway…

My case is not a usual case. With in 3 days of RAI I had night blindness (everything with a light was stray and I could not see anything but the lights they were blinding to me) then I had really bad dry eyes watery terry eyes, then puffy eye lids, then eye ball sticking out farther than the other, I finally got in to a great neuro optho and he is helping me through this disease. I just had orbital decompression on the o e big eye 6 weeks ago. I will be having more surgeryies in the future. But like I said I am not a normal case.

Now that I have a major case of TED. I actually believe about 8 years ago IAd an eye issues flair then. went to a reg opth at that time they said oh your just getting use to the smog ( I had just moved to and area of major smog). I was selling a business and a home starting a new business and buying a new home. Under a lot of stress so I never thought anything about the weight loss at the time. I was loving my new figure. I was DX with graves in June 2010.

My recommendation is if there is any concern with your eyes have them checked my a neuro opthomoligist before you under go RAI. There are things they can check and preventive measures your can take like steroids before and during RAI.

Personally if I had other issues with the Meds before I started them I would get all the info I could before going that route. Like they say hind sight is 20/20 so now I ask lots of questions and do lots of research BEFORE I do anything when it come to my health. I also say that the least invasive approach should be tried first before going more drastic. The endocrine is a very complicated thing, it controls your whole body.

[Jules]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171073

This is a tough dicession we all have to make. The people on this site are the best is answering specific questions to help you make your choice.

I tried the Meds approach and found out I was allergic, I wanted surgery but there was not one surgeon that would do surgery on me because my numbers were too high because I could not do the Meds. I researched many in my area. I Had to choose RAI after 3 months of research.

Warning if you have any eye dryness or any signs of uncomfortable eyes please see a Neuro Opthamolgist before having the RAI to help protect any eye issues if you have them.

I wish I had this advise before having my RAI. Would have answered a few questions I now have.

Good luck and I hope you find your answer sooner rather than later.

[Jules]

in reply to: Interesting reading, I have alway suspected this for me. #1171139

As we have seen with this disease. Doctors really don’t know much about how we get this disease or the best practice to treat us. I would prefer a test for early detection instead of the path I have gone down.

That .01% that the Dr did not know for sure is most likely 100% for some of us.

Trudging through this disease trying to make the best of life. I had OD back in Feb and now dealing with blocked frontal sinuses because of the muscles closing off the opening. Going on my 6th week of antibiotics.

I may have this disease but IT does not have me.

[Author]

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