Tuesday, 27 September 2011

Pheochromocytomas - what are they and what affect do they have on people?

Those that have known me for a long time will have seen a change in my behaviour from when I was off ill last year, we all put this down to me having to change my medication and then struggling to find the right ones to work for me, even my doctor has got frustrated as I have continously told her that the tablets are not working.

After talking to other VHL sufferers, I now have a better understanding of what is happening with me mentally and why, so I thought what better way to try and explain it to those who have never heard of VHL or understand what tumors in certain parts of your body can do or change a person.

There is a website out there in the tinternet called VHL Family Alliance and they have just carried out a survey on this particular type of tumor, the write up is very spooky as so much of it rings true with me, the next few paragraphs are extracts from the report and detail exactly what I have and am experiencing.

Delayed Diagnosis Hurts:
During the time people were waiting for their diagnosis, people reported many serious issues. First, of course, their symptoms worsened, making it difficult to concentrate, undermining their energy and stamina. As the tumors grew, serious emotional fragility developed, sometimes resulting in explosive temper which caused problems at work and in relationships. Even worse, the fact that their doctors did not believe they were sick, or accused them of using drugs, or of hypochondria or other psychiatric disorders had a severe impact on their feelings of self-worth and frequently led to feelings of helplessness and hopelessness. Many said they felt they had lost control of their lives. People with such advanced tumors often had some of the symptoms even after the tumor was removed.

No one believed I was sick:
As people read our checklist of symptoms that might occur, several were surprised to realize they could be indicative of a pheo. Some said they were embarrassed to discuss some of these symptoms with their doctor, not thinking they were related: heavy sweating, constipation or chronic diarrhea, nervous tremors or tics, anxiety or feelings of doom. Dizziness, fatigue, and headaches were usually reported.

Heart Disease:
The chemicals generated by the pheo may cause the heart to race, the blood pressure to become erratic, nervous tics, and/or moderate to severe headaches, all of which might raise concerns of a heart attack or stroke

Psychological Issues:
When patients report anxiety, panic attacks, feelings of doom, fatigue, sometimes alternating with spurts of boundless energy, and mood swings for no good reason, it is logical to think this person is under stress at home, work or school, or has some more serious psychological issue going on. Many people were referred for psychiatric counseling and/or prescribed drugs.

  • Severe emotional trauma within the family unit by constant disregard by health professionals and being made to feel like idiots when clearly something serious was occurring.
  • The first pheo took 3 years to find. I thought I had major psychiatric issues during that time.
  • If the doctors tell you often enough that you’re crazy, you begin to believe it. Certainly my wife believed them and left with the kids.
  • I found it difficult to control my anger when my adrenaline spiked (recognized it after diagnosis)
  • Anxiety so bad that at one time I was suicidal and even self-medicated with alcohol and felt better when I did this. As soon as I got sober, the issues came back.
I recognise so much from those paragraphs above and even more from the comments some of the people on the Survey made and even though I am really scared, I am also really relieved that I do have something growing inside me that is causing all these issues and it can be taken away from me.

I have two hospital appointments to go to over the next couple of weeks, 29th Sept and 3rd Oct, hopefully by then I will have answers and a plan of action on how we are going to tackle this and make me better, my GP is still not convinced these Pheos are active but I know my mind and body better than anyone else and I know something is not right and hasn't been for ages.

During this time I have also lost and upset some very dear friends because I could not control my emotions, temper or anxiety, I just wish I had known there was a reason behind it as I might have been able to explain to them better why I was being so unreasonable.

I still live in hope,
Shellie B

If you want to read the full survey it can be found here.

Friday, 9 September 2011

MOT for 5th Sept 2011

Well I decided that as I have not attended clinic since 2008 that I had better go this year and I also wanted to meet the new clinical nurse for genetics, I even made a huge effort and did my 24hr urine sample.

Unfortunately Angel went missing on the Saturday before I was due to go to the clinic so I really didnt want to go but good friends told me that I still need to take care of myself, so I headed off and when I had got halfway to Oxford I realised I had left my 24hr urine sample at home!

It took them about 10 minutes to be able to find a good enough vein in my arm to be able to inject the dye, once the MRI was over I headed to outpatients to see the Genetics Doctor and then the eye specialist.  Dr Halliday did not seem too worried about things and informed me they were having a meeting about the scans on Thursday, 8th Sept and that they would write to me with the results in about 2-3 weeks time.  My eyes were all ok but they want to take a photograph of my left eye which is the one I had the problems with earlier this year.

So I headed off home, all anxious, as I just wanted to go searching for Angel.  Thursday came round pretty quickly and I was in London attending all day meetings, so it wasnt until I was on the train back home that I saw I had three missed calls with messages, they were from the hospital, my heart sank as they have never called me about my results before, I also had a missed call from my GP, wow I was popular!

So my VHL has decided its been a bit neglected and wants some attention, its very kindly given me some extra tumors to think about, 1 in my pancreas and 1 on each adrenal gland.  I am not very sure what this means but all I know is that I have to do a further two 24 hr urine samples and am being referred to two different consultants.

In a way I am very relieved as I have not been feeling well for a while and started to feel like I was just becoming a lazy old lady, who just moaned about being stressed and down all the time, with no willpower but now I know I have these extra lumps, it could be them that are making me feel how I am.

All there is left for me to do now is play the waiting game and see what happens next.......

Shellie B xxx

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