"Your Weight is the Problem"

General
1

Went to hospital today to have a possible Myelogram & Blood Patch. This young Radiologist, claims to have training in CM, says that my problems are caused from my weight. Now, about 5 yrs ago, I had the Lap-band done; at that time, my weight was 368lbs. Today, I am 268. That was the heaviest, I have ever been. I have had cluster and migraine headaches all my life. My headaches started when I was 4yrs old.

When I was 368, I never experienced the symptoms that I am having now. I was also taking Steroids for about 8yrs for Ulcerative Colitis and Joint issues. The steroids brought on diabetes. Once I had the surgery, the diabetes left. Med free since 2008. I felt healthier when I was fat!

He stated that my case intrigued him because the pressure is low in my head and high in my back. During the Spinal Tap, he was trying to re-create my pains establish a Baseline. Decreased pressure caused my head to hurt and too much pressure in my spine to decrease the pressure in my head caused SEVERE back pains and intense pressure all over my head and ears. He really couldn't understand what was happening. So he says, "You do not have a leak. I think I know the problem and how to solve it...You need to loose weight." You have a condition that called Pseudotumor Cerebri or IIH." He began to explain the condition. He asked me what was wrong and I told him that I wasn't buying it. I told him that I know my body better than he does and the weight is not the problem. Once again he tried to explain that weight hasn't been quite linked to it but heavier individual lumber pressure is higher than a smaller person. Maybe so but no "horseshoe ringer" here. I was not buying it. Then he said, " I just can't fix you today, alright. You need to get on some meds for the high pressure and headaches". So, then I asked him what about the severe pain in the rear of my head and the excruciating headaches I have. He then said, "Those ARE NOT migraine headaches". I must have had a look on my face because he told me that I wasn't believing anything he said. Then I said, The Eyes Have It". He then said, "Just loose the weight okay; You need it anyway. If you loose the weight and you still have symptoms with increasing intensity, then we will try something else".

I was floored at the things he said. He also told me that he contacted his old mentor at Duke Hospital that is head of the Neuro dept. I do not remember her name. He said she agreed. But when I tried to list all the symptoms, he said that most of those are irrelevant. I really didn't get upset because after reading the blogs and other discussions on this site, I did not expect for things to flow smoothly. I have free care from the charity hospital in the local area. My employment has insurance but I can't afford it because it will eat half my check up. I will try to find someone who can at least look at my case and help me. I have to soon because the symptoms are getting worse...this is beginning to affect my memory, thought processes, and speech. The pain in my neck is severe..it feels like someone has the nerve, tendon, muscles...just everything in a pair of pliers pinching, twisting, pin & needles in the neck and shoulder area.

I apologize for my thought being so long but I at this moment, you all are the only ones that listen and give some kind of direction.

Thanks from bottom of my Heart..

Ms. Taurus (Ros)

2

LOSE WEIGHT or STOP SMOKING!!! Those are the two things doctors always say. I am sorry you had to put up with the attitude. It is bad enough when we have to deal with the insensitivity from a doctor, but a radiologist...No!

I had gastric bypass in 2002 and lost 156 lbs. and I didn't have any of these problems until after the surgery and like you I felt healthier when I was heavier. You really need to go see someone else if possible, this guy does not seem to know about CM like he says.

Hope you feel better!

SparkyID7

3

Hi…
Don’t get me started…I had been told many times in the past that certain problems were due to my weight…
It seems that if a patient is over weight or what the doctor thinks is under weight…and they have no clue what is wrong…OR…too prejudice to look to the root cause…they blame the issue on body weight.
I will dare to throw this out there for debate…I truly feel that doctors…at least many docs…tend to use this tactic more on the female patients than male patients…any thoughts on that .

4

I was diagnosed with Chiari in July this year, My herniation is 9mm but my local NS just wants to trat me with meds for the headaches and is telling me th Chiari will not cause the dizziness or vision issues. I advised that I had joined a support group and had been researching my condition in depth and he got angry and did a google search right in front of me and pulled up a list of dizziness causes and let me know that he knew more than I did. Needless to say I am seeing another NS Wednesday.

I have learned more from th members here than anywhere else.

5

Thanks razzle51. I'm not going to let him stop me.

razzle51 said:

no 1 the radiologist should have never said that and I would report him....he shouldn't have told you anything he is a radiologist...... Hope you do find relief soon . Take care Roz.

6

Thanks Sparky. He asked me if I thought that having the weight loss surgery caused this. I told him that I was not try to relate the two. But clearly, I never had these issues until after the surgery. I'm going to get to the bottom of this so I can re-claim my life back.

SparkyID7 said:

LOSE WEIGHT or STOP SMOKING!!! Those are the two things doctors always say. I am sorry you had to put up with the attitude. It is bad enough when we have to deal with the insensitivity from a doctor, but a radiologist...No!

I had gastric bypass in 2002 and lost 156 lbs. and I didn't have any of these problems until after the surgery and like you I felt healthier when I was heavier. You really need to go see someone else if possible, this guy does not seem to know about CM like he says.

Hope you feel better!

SparkyID7

7

Hello Edwin, I feel the same way, too. I have learned a lot from this forum than from the doctors. My herniation is 8mm with increasing symptoms. I feel like a prisoner sometimes, I've been sick before but never like this. You have to really stay in control of your emotions to keep the episodes down. The dizziness and vision problems are nerve wrecking. I've been prescribed glasses for the vision and Antivert for dizziness. I didn't have the weight-loss surgery to take more medicine. Good luck with your new doc visit.

Edwin Kelley said:

I was diagnosed with Chiari in July this year, My herniation is 9mm but my local NS just wants to trat me with meds for the headaches and is telling me th Chiari will not cause the dizziness or vision issues. I advised that I had joined a support group and had been researching my condition in depth and he got angry and did a google search right in front of me and pulled up a list of dizziness causes and let me know that he knew more than I did. Needless to say I am seeing another NS Wednesday.

I have learned more from th members here than anywhere else.

8

Mandy, Thank you so much for those words of encouragement. No, my headaches did not ease the second he started the LP. And even after he tried to take my headache away during the tap, it came right back after a few minute. When started telling me what HE thought my issue was, my emotions were running high and I began to have an episode. The band of pressure increased and tighten around the back of my head, head pain began to throb harder and louder, and my back began to hurt worst. Because I didn't have a syrinx, or any other serious in your face symptoms, it doesn't give him that "eureka" moment. The only thing that I am currently eating is salads and cereal; some meats here and there. I have to drink a lot of coffee to keep awake and take edge off of headaches; after awhile, I get really nauseous from the caffeine. I have picked up a few pounds because I've been drinking cokes. My taste is so funny; Sweet stuff makes me gag. Since my lap-band surgery, I really did not have the taste for cokes. My friend that is a nurse told me to put more proteins in my meals, then my weight will come down. I'm not going to weight until I loose what they what to get fixed. My speech, memory, physical strength, pus everything else is affected. But I truly thank you and all of the others for your support and advice. Even if I have to look outside the state of Louisiana, I have to get help.

Taking care of my mom is EXTREMELY hard. We are not getting along because I have siblings that have convinced her that I am trying to steal her money or harm her physically. Even when I am sick and my head is killing me and my I'm so wiped out, I crawl (literally) out of my bed and get up enough strength to take care of her wound care and hygiene issues. My 12yr old daughter has learned my looks when I'm sick. I have matched up every symptoms from most of the CM sites and I have a majority of them less the syrinx, numbness, tingling....But 1 thing I have had developed was a jack-ball size cyst on top of my right foot. It appeared in May out of nowhere. My former PCP physician said that it was a fatty benign tumor...again caused by weight. I have no fat on my feet! Never had it before anywhere else. Maybe the two are unrelated....Anyway, this sites keeps me sane.

Thanks again for your help and concern.

Mandy said:

Hi Ros,

I think you've just experienced the gap problem with radiologists. The gap being that they are trained medical doctors who have NO idea of the type of problems or symptoms you are experiencing other than the two or three used to code the MRI request, but their report from the visual findings is what your doctor (who IS aware of symptoms, but doesn't know how to interpret the visual findings) goes off of. HUGE problem in my opinion. The really good specialists have radiologists they work with almost exclusively so they can bridge that gap, but unfortunately there seems to be a large percentage of Chiari "specialists" who haven't worked out a better system to avoid just the problem you had.

I am so sorry, it's always frustrating to try and explain to anyone about Chiari, much less trying to explain it to a person who is entrusted with your care.

There is information out there relating IIH/PTC (Pseudotumor cerebri) with overweight patients, but in my opinion, this is a chicken or the egg situation. It's very easy for a person who's never had a weight problem in their life to tell other people to "just lose the weight", but realistically (in my non-medically educated opinion), I think there is a physical reason for weight gain, and for us, hormone imbalance is caused by Chiari causing pressure on the pituitary. So if your hormones are out of whack, it's near impossible to lose weight without the ability to seriously workout. And I don't know about you guys, but when's the last time anyone could do a hardcore work out without getting splitting head pains and paying for it for the next few days (weeks, months)?

I am also not sure how he decided on IIH. IIH is usually an indicator if you feel relief from skull pressure once the lumbar puncture is performed, but it sounds like it caused head pain, which is an indicator of the Chiari. Did you feel immediate relief once he started the LP (lumbar puncture)?

Your ENT sounds like a thorough doctor, I think you lucked out when you found her. I echo Lori's suggestion of applying for state assistance for health insurance, this will hopefully give you the opportunity to see a Chiari specialist in your area. It seems there is still a large percentage of neurosurgeons who use length of herniation as an indicator for the surgery, but the majority of research in the last ten years indicates the blockage of cerebrospinal fluid corresponds more with the severity of symptoms. So if you end up getting a neurosurgeon who says 7mm is not enough to operate on, don't lose hope, there are surgeons out there who are up to date with research.

God bless you, it takes a special person to care for a disabled parent. Wishing you the best :)

Mandy

9

That is OUTRAGEOUS. I am angry for you. Cant write more, but that is just stupid, medically illogical. Warmest wishes & healing thoughts your way.

10

I get so infuriated when doctor's blame everything on weight! I know there are a few legitimate conditions caused by weight but this isn't one of them. The symptoms you are having have nothing to do with weight! How frustrating!

11

I also had lap-band surgery and lost 100 pounds and have kept 90 off. I also get the samething.. from my surgeon. He claims that I am still having issues after surgery because I am not active enough and need to lose 40 pounds. I weigh 180 right now and my PCP of 10 years is very happy that I have kept the weight off since 2007! I don't care how well respected my NS is, my weight has nothing to do with my Chiari and neither does the lap-band.

12

Who can be active when you can barely walk!?! Lots of docs don’t get that. If I try to walk around the block my legs want me to stop.

13

Thank you. My ENT has made an appointment to see me next week so we can discuss where we go from here. She says she's not giving up yet.

razzle51 said:

no 1 the radiologist should have never said that and I would report him....he shouldn't have told you anything he is a radiologist...... Hope you do find relief soon . Take care Roz.

14

Hi SomethingWitty,

I agree. This came about after the surgery. All I want to lose is 40lbs more. I have to get my band tightened. But I need to be able to handle my pills. Even after all this time, I can't eat chicken, sausage, pork-chops, or any fibrous meat without a grinder. Or cooking it too pieces. I can't even eat greens or cabbages. I intend on losing the rest but my body is not responding. I have more bad days than good but with God, I will survive.

Thanks for you concern

SomethingWitty said:

I also had lap-band surgery and lost 100 pounds and have kept 90 off. I also get the samething.. from my surgeon. He claims that I am still having issues after surgery because I am not active enough and need to lose 40 pounds. I weigh 180 right now and my PCP of 10 years is very happy that I have kept the weight off since 2007! I don't care how well respected my NS is, my weight has nothing to do with my Chiari and neither does the lap-band.

15

I know. My back hurts so bad, I could just break down and cry. Then once my back starts, then my head is sure to follow.

Karla said:

Who can be active when you can barely walk!?! Lots of docs don't get that. If I try to walk around the block my legs want me to stop.
16

Thanks so much Sonj. If it wasn't for this site, and each every one of you with advice, words of encouragement...I would be just balled up in the corner hysterical. Again, Thank YOu!

Sonj said:

That is OUTRAGEOUS. I am angry for you. Cant write more, but that is just stupid, medically illogical. Warmest wishes & healing thoughts your way.

17

Ms Taurus,

You are a smart lady. Sorry you got such a jerk. How are you doing?

18

Hello TracyZ,

Still having headaches. My back pain is the worst; I walk with a limp. My distorted vision bugs me. The memory issue bothers me. I try and think about what I am going to say and it still comes out jumbled. I just notice that I am not as articulate as I use to be, well at least not orally. I can type better than I think. I finally have an appointment with Neurologist. Freecare takes longer to get appointments. My ENT has put me on Diamox but I have to find a way to pay for it.